Question:

To All,    There has been a lot of interest in the new anti spasticity drug, Zanaflex recently and I would like to share my experiences.  I have been taking relatively low doses of Valium for this purpose since Baclofen did not provide me with any benefit. (Strangely, I am sensitive to almost all of Baclofen’s side effects).  I have been following a schedule devised by my doctor which slowly replaced the Valium with Zanaflex.  The transition is now complete and I am taking 4 mg of Zanaflex 3 times a day.  I am happy to report that thus far I have no side effects beside a very minimal amount of drowsiness.  At the same time there has been a significant reduction in my spasticity with a concomittant increase in mobility.  So far it has been a win/win situation for me. David Reiss

Response:

        Glad to hear it David. I see my neuro on the 20th will be bringing him the info on Zanaflex, it was mailed, but just in case I’m handing it to him.  I’m currently on Larazapam for spasticity espy of the legs and bladder. I hope I can try it!!  To have to go and just not be able to is frustrating in the least. I was hoping the drowsiness wouldn’t be as bad as the Larazapam.         Keep meus posted! sounds encouraging. At 01:04 PM 3/13/97 -0500, you wrote:

To All,   There has been a lot of interest in the new anti spasticity drug, Zanaflex recently and I would like to share my experiences.  I have been taking relatively low doses of Valium for this purpose since Baclofen did not provide me with any benefit. (Strangely, I am sensitive to almost all of Baclofen’s side effects).  I have been following a schedule devised by my doctor which slowly replaced the Valium with Zanaflex.  The transition is now complete and I am taking 4 mg of Zanaflex 3 times a day.  I am happy to report that thus far I have no side effects beside a very minimal amount of drowsiness.  At the same time there has been a significant reduction in my spasticity with a concomittant increase in mobility.  So far it has been a win/win situation for me. David Reiss

                        /^–^        /^–^        /^–^ Luv Susan                        ____/     ____/     ____/                         /         /         /                              |        |    |      | s_guzie…@conknet.com                         __  __/   __  __/   __  __/ |^|^|^|^|^|^|^|^|^|^|^|^ ^|^|^|^/ /^|^|^|^|^ ^|^|^|^|^|^|^|^|^|^|^|^| – Hide quoted text — Show quoted text -

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Response:

I get on well with Baclofen, tho there’s quite a number here on the ng with some bad stories to tell about it.   Fortunately I’ve had nothing but good experience with it. Roarke "Wlmcs" <wl…@aol.com

wrote in message

news:20020917145106.10770.00006582@mb-cu.aol.com… – Hide quoted text — Show quoted text -

I too have been on Zanaflex and it makes me a little sleepy (for about

half an

hour), but it has a rather immediate effect of relaxing my leg muscles (I suffer from spasticity).  My doctor thought I should try Baclofen, and I

know

some people who have good results with it. wl…@aol.com

Response:

I too have been on Zanaflex and it makes me a little sleepy (for about half an hour), but it has a rather immediate effect of relaxing my leg muscles (I suffer from spasticity).  My doctor thought I should try Baclofen, and I know some people who have good results with it. wl…@aol.com

Response:

Zanaflex is prescribed for spasticity, but I haven’t read anything regarding upper or lower portion of the body.  I was told the reason my handwriting was so bad is because I am having muscle spasms in my arm, even though I really don’t feel or see spasms.  The Zanaflex is supposed to help although I am questioning if it really does since I am asleep when Zanaflex supposedly is working.  I did feel that the handwriting was improving, but now I am wondering if it was mind over matter.  I certainly don’t need Zanaflex for sleeping, since I never had a problem with sleep. "Robert" <rob…@bellsouth.net

wrote in message

news:3D851087.724D@bellsouth.net… – Hide quoted text — Show quoted text -

I have a question, however: if your problem was handwriting and Baclofen didn’t agree with you, why Zanaflex? To my knowledge Zanaflex has no effect on the upper portion of the body. I’ve also never noticed anything other than in my legs when using Zanaflex so I find it an odd choice for hands/upper body.

Response:

Linda Burke wrote:

Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex.

I’ve use Zanaflex for years but only on an as-needed basis. When I need a little more "looseness" to walk I can use 1/2 of a 4 Mg tablet. I have a question, however: if your problem was handwriting and Baclofen didn’t agree with you, why Zanaflex? To my knowledge Zanaflex has no effect on the upper portion of the body. I’ve also never noticed anything other than in my legs when using Zanaflex so I find it an odd choice for hands/upper body.

Response:

Hi Linda!

Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.

Yep, that’s about what it does to me: makes me tired about half an hour after I take it, and I feel tired for about half an hour.  I’ve been taking it for about a year, so I may have built up some tolerance to it.

I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc.

I take 2 mgs. three times a day; right before breakfast, about 3 in the afternoon, and right before I crash out for the night.  I am taking it to cut the spasticity, which it does.  Sort of.  BTW, great news for anybody who has to pay out of pocket for meds.  Zanaflex has now gone generic! Best of luck with the Zanaflex! Sylvia

Response:

I tried it and it made my almost pass out.  I just "collapsed" and went right to sleep after taking it for about three months. When I increased the dosage it did its thing on me.  I had a scan to see if I had a stroke — it was negative.  I’m not on baclofen, and see no benefits.  I took it years ago and I couldn’t tolerate it then, so I assume this dose is smaller? Good luck.  I’m not sure I’ll continue indefinitely since it’s just one more pill to deal with. Sharon "Linda Burke" <big…@cox.net

wrote in message

news:zN%g9.27134$8F4.1085402@news2.east.cox.net… – Hide quoted text — Show quoted text -

Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is

why

take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc. Linda

Response:

I’ve taken it for a while now.  What I do is take 4mg first thing in the morning, that way I do not get tired, then about 3pm I take half a pill, 2mg, it does make me tired sometimes but if I’m busy then it doesn’t effect me.  The only bad side effect is the dry mouth for me. — Scott Gross "Linda Burke" <big…@cox.net

wrote in message

news:zN%g9.27134$8F4.1085402@news2.east.cox.net… – Hide quoted text — Show quoted text -

Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is

why

take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc. Linda

Response:

I take Baclofen, and have had great success and no side effects, tho I know of others here with horrendous problems.   I also take it at night, to help with sleep (no leg spasms and stiffness) and possibly the main thing was to prevent the worsening leg stiffness in the mornings – I wasn’t able to get dressed some days without it my legs were so stiff.  Hands too.   No doubt if I had reacted badly to Baclofen I’d have been on Zanaflex,  but I love the stuff it’s been nothing but miraculous for me. Roarke "jack n dalton" <jdal…@ix.netcom.com

wrote in message

news:am29k1$ev4$1@slb1.atl.mindspring.net… – Hide quoted text — Show quoted text -

Linda I take 1  Zanaflex each night and find that it really helps me go to sleep and get a good night’s sleep. It gives all the muscles a "real" rest and breaks the spastic cycle. It acts like a steroid shot for severe joint

pain

and allows normal tone to return. I find that taking 1/2 a pill during the day about 20 min before nap time also helps. I recommend coffee/green tea and dark chocolate as a way to get going again. Nap may be longer than you expect if you do not set alarm. Jack N Dalton Linda Burke wrote in message . Because my handwriting was becoming fairly illegible, my doctor put me

on

Baclofen.  That made me sick to my stomach, so he switched me to

Zanaflex.

He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is why take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  I am curious to hear about others who are

taking

Zanaflex, when they take it, how much, the reason for taking it, etc. Linda

Response:

Linda I take 1  Zanaflex each night and find that it really helps me go to sleep and get a good night’s sleep. It gives all the muscles a "real" rest and breaks the spastic cycle. It acts like a steroid shot for severe joint pain and allows normal tone to return. I find that taking 1/2 a pill during the day about 20 min before nap time also helps. I recommend coffee/green tea and dark chocolate as a way to get going again. Nap may be longer than you expect if you do not set alarm. Jack N Dalton – Hide quoted text — Show quoted text -Linda Burke

wrote in message . Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is

why

take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc. Linda

Response:

Dear Linda; I’ve been using Zanaflex for 3 years; I take it at night before bed to control my leg tremors. They use to cramp up and try to curl themselves up, making sleep pretty tough. Yes, it does make you sleepy, but I’ve heard on this group about some folks who have built up a resistance to the sleepy side effect over time. I take 1 pill (4mg), or sometimes I split the pill and take 2mg, depending on how I feel, maybe 2 or 3 times per week. I don’t take it every night. One nice thing, I wake up fairly refreshed, no groggy hangover. I’ve never taken it during the day, so I don’t know how it affects my waking state. I hope this helps. Richard "Linda Burke" <big…@cox.net

wrote in message

news:zN%g9.27134$8F4.1085402@news2.east.cox.net… – Hide quoted text — Show quoted text -

Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is

why

take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc. Linda

Response:

Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is why take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc. Linda

Response:

On Sun, 15 Sep 2002 13:19:27 GMT, in alt.support.mult-sclerosis,"Linda Burke" <big…@cox.net

wrote: Because my handwriting was becoming fairly illegible, my doctor put me on Baclofen.  That made me sick to my stomach, so he switched me to Zanaflex. He said it would make me tired and to take it only at night.  I recently read that Zanaflex makes you tired within 30 minutes and takes about 1-2 hours before starting to work and continues for 6 hours.  My question is why take it if it only works while I am asleep.  I certainly don’t write anything while sleeping!  

Now, see, this is proof that you just aren’t cooperating! It is folks like you who give the drug manufacturers a bad name. OK, yes I was kidding, but we have heard stuff like this from some of the dok$.

I am curious to hear about others who are taking Zanaflex, when they take it, how much, the reason for taking it, etc.

I’d be curious to find out if there is something that might work for me. Of course, if I had ugly side effects from it (no guarantee of that happening), I’d stop; but I might like to try it. — "Who we are and who we become depends, in part, on whom we love." — "A General Theory Of Love"  Thanks, Mom ______________________________________________________________ Glen Appleby  gl…@armory.com <HTTP://www.armory.com/~glena/

Response:

I tried Zanaflex. I was almost up to the full dose for beginners, which is 3 pills a  day ( dont remember the mg) when I stopped. I thought I was losing my mind. My spasticity was getting worse. I kept thinking I was just getting worse. Then, one day I went to get out of the computer chair  where I now sit. I had only been there for about 20 minutes, and it was morning,  my best time of day. My right leg came up to hip level all by itself. That was a new and strange occurence. I looked at the list of side effects, and sure enough ‘2 %’ of people get increased spasticity. Bummer. I really wanted this stuff to work. Oh well. Lilly ——————-==== Posted via Deja News ====———————–       http://www.dejanews.com/     Search, Read, Post to Usenet

Response:

What is – Hide quoted text — Show quoted text -gpi…@customcpu.com wrote in message <884756246.958136…@dejanews.com

… I tried Zanaflex. I was almost up to the full dose for beginners, which is 3 pills a  day ( dont remember the mg) when I stopped. I thought I was losing my mind. My spasticity was getting worse. I kept thinking I was just getting worse. Then, one day I went to get out of the computer chair where I now sit. I had only been there for about 20 minutes, and it was morning,  my best time of day. My right leg came up to hip level all by itself. That was a new and strange occurence. I looked at the list of side effects, and sure enough ‘2 %’ of people get increased spasticity. Bummer. I really wanted this stuff to work. Oh well. Lilly ——————-==== Posted via Deja News ====———————–      http://www.dejanews.com/     Search, Read, Post to Usenet

Response:

Hello there I am currently taking zanaflex, this is my third week.  The drug is making me so drowsy after I take it and I am still increasing my dosage.  I also haven’t noticed any changes so far.  My question is to anyone who takes zanaflex what have been your experiences?  I am currently on a full pill in the morning, a half at lunch and a full one in the evening.  How much time do I give it to start working?  Does the drowsy feeling disappear in time? Do you prefer zanaflex over baclofen?  I was on baclofen for almost three years and switched to zanaflex because I felt baclofen wasn’t doing anything anymore.  My doctor suggested zanaflex to me. Any responses would be greatly appreciated. Thanks Karen

Response:

I am currently taking zanaflex, this is my third week.  The drug is

making

me so drowsy after I take it and I am still increasing my dosage.  I

also

haven’t noticed any changes so far.  My question is to anyone who takes zanaflex what have been your experiences?  I am currently on a full

pill in

the morning, a half at lunch and a full one in the evening.  How much

time

do I give it to start working?  Does the drowsy feeling disappear in

time? Hi, Karen! I’m on two tablets of Zanaflex three times daily.  The drowsy feeling took about a month to fade, but now is tolerable.  It started taking effect once I reached about four tablets/day.  It worked about as well as Topamax, WITHOUT Topamax’s visual distortion.  I’ve never tried Baclofen, so I can’t say much about that. I hope this helps.  From what my doc said, sleepiness is the most common side effect of Zanaflex. Good luck! Jan Wiles jwi…@cox.rr.com

Response:

Jan Wiles wrote:

I’m on two tablets of Zanaflex three times daily.  The drowsy feeling took about a month to fade, but now is tolerable.  It started taking effect once I reached about four tablets/day.  It worked about as well as Topamax, WITHOUT Topamax’s visual distortion.  I’ve never tried Baclofen, so I can’t say much about that.

I like Zanaflex for specific times of need. I don’t take it regularly but rather on an as-needed basis. Like if I am going to roll the garbage can to the street, I take a little Z (2mg on an empty stomach works for me) and that is all I take that day. It lasts about 4-5 hours and is over.

I hope this helps.  From what my doc said, sleepiness is the most common side effect of Zanaflex.

I find this to be true, but at the small dose I use (1/2 tablet at a time) I only get real sleepy if I don’t concentrate on anything. Watching TV or reading will zonk me out, but if I am talking or otherwise having to do some thinking I don’t have a problem with it. I like Z 1000 times better than Baclofen.

Response:

Hi, I was on Zanaflex for 7 months and I was up to 4 tablets a day and never noticed any difference with it so I stopped..  The only thing that it did was make me so tired after taking it that I had to take a nap.  I spent most of my day sleeping.  I started taking it because Baclofen didn’t seem to help the spacticity very much.  Zanaflex didn’t work for me either. Tina Mike and Karen Lemay wrote: – Hide quoted text — Show quoted text -

Hello there I am currently taking zanaflex, this is my third week.  The drug is making me so drowsy after I take it and I am still increasing my dosage.  I also haven’t noticed any changes so far.  My question is to anyone who takes zanaflex what have been your experiences?  I am currently on a full pill in the morning, a half at lunch and a full one in the evening.  How much time do I give it to start working?  Does the drowsy feeling disappear in time? Do you prefer zanaflex over baclofen?  I was on baclofen for almost three years and switched to zanaflex because I felt baclofen wasn’t doing anything anymore.  My doctor suggested zanaflex to me. Any responses would be greatly appreciated. Thanks Karen

Response:

Hiya Karen, I tried baclofen a few years ago, it didn’t help.  I have been taking zanaflex for at least three years, I currently take 24mg/day, however for a while I was taking 28mg. I believe zanaflex works much better, at least for me, than baclofen. Zanaflex is one of the only drugs developed with ms in mind, the other’s being the ABC drugs. You may need to increase your dosage to notice a difference – you didn’t give an example of what the dose of your pill is, but I think the biggest one is 4mg., if that’s the case you are not taking a very large dose.  Anyway, I hope ya get whatever the hell helps you! Ralph

Response:

Haven’t heard of zanaflex.  But I have been taking Klonapin for my "restless legs" for a while now.  I only talk it at night, IF they start jerking.  I can get thru it during the day.  Before I was given Klonapin, I’d could be awake for hrs waiting for them to stop (or did I just pass out from exhaustion?) kate

Response:

Don Watkins <cjs…@azstarnet.com

wrote in article

<01bc001a$f6a9bcc0$3b03c5a9@custom-install>… > I think Zanaflex will be available in February 97. > Bridger555 <bridger…@aol.com

wrote in article

> <19970111185000.NAA23…@ladder01.news.aol.com>… > > Anyone out there taking this new drug just released by FDA for spascity?

Does anyone have any info on it?  Please email me or post message here. Thank you.

I am on Valeiums 3x per day for spascity which helps with the pain, I have no leg jerkings, but can only walk short distances at a time. I’m interested about any info on Zanaflex, if anyone out there is using it yet? Please reply at my email address, thanks! Frenchie rp…@swlink.net

Response:

- Hide quoted text — Show quoted text -Ron Pace wrote:

Don Watkins <cjs…@azstarnet.com wrote in article <01bc001a$f6a9bcc0$3b03c5a9@custom-install… I think Zanaflex will be available in February 97. Bridger555 <bridger…@aol.com wrote in article <19970111185000.NAA23…@ladder01.news.aol.com… Anyone out there taking this new drug just released by FDA for spascity? Does anyone have any info on it?  Please email me or post message here. Thank you. I am on Valeiums 3x per day for spascity which helps with the pain, I have no leg jerkings, but can only walk short distances at a time. I’m interested about any info on Zanaflex, if anyone out there is using it yet? Please reply at my email address, thanks! Frenchie rp…@swlink.net

Zanaflex should be avaiable in local pharmacies by the end of the first week in February.  At that time the drug company (Athena) will also be having there representatives discuss the product with physicians. The NMSS has been fully briefed on the product and are completing a new booklet on spasticity.  Athena is also completing some general information for all interested.  We hope to have that available in early february as well. Hope this info helps. Eric

Response:

On Sat, 11 Jan 1997, Bridger555 wrote:

Anyone out there taking this new drug just released by FDA for spascity? Does anyone have any info on it?  Please email me or post message here. Thank you.

Yes, my husband is taking it.  You have to titrate up to the optimum dosage in 28 days because this drug is related to a blood pressure drug. He is now on the optimum dosage which is 8 mg – 3 x day.  Seems to help him.  Will know more after he has been on it a while. It is supposed to be better than Baclofen because it does not cause leg weakness.

Response:

In article <Pine.SOL.3.95.970114083440.1080A-100…@ecom4.ecn.bgu.edu

,

Cathy Ashmore <C-Ashm…@ECNET.NET

writes: Yes, my husband is taking it.  You have to titrate up to the optimum

dosage in 28 days because this drug is related to a blood pressure drug. He is now on the  optimum dosage which is 8 mg – 3 x day.  Seems to help him.  Will know more after he has been on it a while.< Cathy, Could you give me/us some idea what the cost is.  I have no prescription coverage through Medicare…so there’s no point in even looking into it for myself, if it is another  cost prohibitive one for me… Many thanks…and I hope the results are great for your husband… Judith

Response:

On Tue, 14 Jan 1997 cmiller…@AOL.COM wrote:

I am about ready to start taking Zanaflex.  The biggest side effects I was warned about was dry mouth and extreme drowsiness  so i am suppose to start with small doses at night.

Charlene,    What is the source for the potential for these side effects?  I id not experience muscle weakness with Baclofen , but then again it did not relieve my spasticity either.  The main effect it did have was to make me extremely drowsy.  I was hoping that Zanaflex did not do that. David Reiss

Response:

David Reiss wrote:

On Tue, 14 Jan 1997 cmiller…@AOL.COM wrote: I am about ready to start taking Zanaflex.  The biggest side effects I was warned about was dry mouth and extreme drowsiness  so i am suppose to start with small doses at night. Charlene,    What is the source for the potential for these side effects?  I id not experience muscle weakness with Baclofen , but then again it did not relieve my spasticity either.  The main effect it did have was to make me extremely drowsy.  I was hoping that Zanaflex did not do that. David Reiss

David/Charlene, Although I’m not sure the specific reason that Zanaflex causes drowsiness, I can tell you that it has a distinctly different mechanism of action.  Specifically, Zanaflex is a centrally-acting alpha-2 agonist whereas baclofen is primarily a peripheral agent active primarily at the spinal level. Obviously, the bottom line is that each drug works differentky and therefore it is likely that individual people will have different responses.  I hope it works for you! In terms of the drosiness, although a lot (almost 40%) mentioned feeling some drowsiness in the studies, only 3% choose to stop taking the medication for that reason.  Starting at night, with a low dose, however makes good sense to give you a chance to get used to the new drug. Hope this helps, best wishes and good luck. Eric Liebler

Response:

Jackie Ferguson wrote:

The NMSS home page has some info. on Xanaflex.  I am forwarding the text to you.  If you go to: http://www.nmss.org    … then click, "what’s new", they have a lot of new info., incl. Zanaflex.

****  December 6, 1996             FDA Approves New Medication to Fight Spasticity  Elan Corporation has announced that the U.S. Food and Drug  Administration (FDA) has granted approval to market tizanidine  hydrochloride (Zanaflex

Question:

I’VE BEEN ON MTX FOR ABOUT 3 YEARS NOW. STARTED ON 7.5 MG FOR ABOUT 1 YEAR AND THEN SLOWLY INCREASED TO 15 MG. PER WEEK, WHICH I AM STILL ON. THIS WAS NOT MY IDEA, BUT MY DOC’S. I ALSO HAVE MY BLOOD TESTED EVERY MONTH TO MAKE SURE THERE IS NO LIVER DAMAGE. IN ADDITION, I GET A SOLUMEDROL TREATMENT EVERY OTHER MONTH AS A S.O.P. IT HAS REALLY KEPT ME FAIRLY STABLE THROUGHOUT THIS PERIOD. ALSO, I NEVER HAD ANY SIDE EFFECTS FROM THE MTX, THAT I KNOW OF. NOW I’M ALSO ON THE AVONEX, SO I REALLY WON’T BE ABLE TO ATTRIBUTE ANY POSITIVE FINDINGS TO EITHER ONE OR THE OTHER. BUT WHO REALLY CARES, AS LONG AS I CONTINUE TO DO WELL. I WAS DIAGNOSED AT AGE 30 AND AM 51 NOW, SO I’M NOT EXACTLY NEW TO THE GAME. ANYWAY, I’VE TALKED LONG ENOUGH FOR MY 1ST RESPONSE ON THIS FORUM. I AM STRONGLY IN FAVOR OF THE MTX AND IF I CAN GIVE ANYONE ANY MORE INFO ON THIS SUBJECT, DON’T HESITATE TO E MAIL ME. BRUCE IN CLEVELAND.

Response:

Did you get folate supplement?  Did you get a warning re: any use of alcoholic beverage (beer, wine)?

Yes to the alchohol question plus other warnings and I may be dumb but what is "folate supplement"?        Bill – Levittown, NY EMail  Hotwh…@specdata.com            ~|_             (_)_

Response:

Hello Everyone! I too take methotrexate. I have chronic progressive M.S. I have been on the methotrexate for about almost a year. It seems to have slowed down the progression of my M.S.some. At least to the point where I can now start exercising a little bit. I have no side effects from taking the methotrexate. But every person is different in their reactions to medicine. Some people may think the metho is dangerous because of the potential side effects. But as long as you follow the Dr’s instructions you should be allright.The dosage I take is 1 2.5mg. tablet every 12 hrs. spread over 24 hrs. So that’s 3 pills one day a week. I take mine at 6:00 a.m., 6:00 p.m., and 6:00 a.m. on Thursday, ending Friday. I have not met anyone yet who has had any side effects with the metho. I hope that will relax anyone who is starting the metho treatment. The dosage above is the common dosage given.                      Sincerely………..Gwendolyn.

Response:

Hi, I’ve been on Metho for 6 months, in conjunction with IVP treatment.  I’ve been diagnosed as primary progressive.  I think that the treatments have slowed down the exacerbations, and have increased my ability to walk/balance better.  I’m not ready to ski, but at least I’m not kissing the sidewalks anymore <G

.  I can control my upper body much better, including writing!

The frustration level has dropped considerably when I need to make quick notes, take a message for a colleague or just sign my name! I’ve not had any ill side effects.  The only reminder is having blood drawn every other week to monitor the liver levels.  Your neuro, or perhaps the Rx, will tell you point blank that no alcoholic beverages should be consumed while you take this drug!   I wish you well and success with the treatment. Good luck

Response:

Bill:  You’re likely to fill a little quesy the first few weeks or so, but then it should pass. Mary Casey Darden – Hide quoted text — Show quoted text -On Sun, 25 May 1997, Bill McCartney wrote:

        Hi to all the Methotrexate users out there.   I start mine on Tuesday 5/27.         What should I expect?   Does anything feel different on one dose (7.5 mg)         or does it have to build up?        Bill – Levittown, NY EMail  Hotwh…@specdata.com            ~|_             (_)_

Response:

hi Bill Please keep us updated on your Methotrexate use. Is it oral?, how often? what tyype of MS do you have?, how long? how does it effect you? what where indications that dr decided on the methotrexate. see what happens when you ask a question? you get 6 asked back! Sue

OK Sue, it’s answer time.          I don’t know a lot about Methotrexate, only what I find on the Web and personal experience of one person I know who takes it.  I requested the drug, my neuro does not suggest anything. It’s oral.  3 2.5 mg. pills one day per week starting today 5/27. Chronic Progressive for 12/13 years. In a wheelchair. My hands and arms were losing strength and coordination.  Metho is supposed to work for upper body only.  How it knows where to go is a mystery to me.        Bill – Levittown, NY EMail  Hotwh…@specdata.com            ~|_             (_)_

Response:

        Hi to all the Methotrexate users out there.   I start mine on Tuesday 5/27.         What should I expect?   Does anything feel different on one dose (7.5 mg)         or does it have to build up?        Bill – Levittown, NY EMail  Hotwh…@specdata.com            ~|_             (_)_

Response:

My Neuro wants me to start taking Methotrexate. I am still on Copaxone after 5 months. Does anyone have any experiences/tips with this drug? I talked to a Pharmacist about this drug. The label says not to drink alcohol when taking it. The Pharmacist said that occasional glass of wine would be OK. The label says not to take NSAIDs while on it. The Pharmacist said to switch from Advil, which I take a lot of, to Tylenol. Thanks in advance for any information. Fred.

Response:

On Sun, 26 Aug 2001 12:58:45 -0400, "Fred" <n…@junk.email

wrote:

}My Neuro wants me to start taking Methotrexate. I am still on Copaxone after }5 months. Does anyone have any experiences/tips with this drug? I talked to }a Pharmacist about this drug. The label says not to drink alcohol when }taking it. The Pharmacist said that occasional glass of wine would be OK.

I started taking Methotrexate 2 1/2 weeks ago, Fred. You are right about no alcohol, although I intend to have a glass of wine at Christmas when my sisters are here. Reason is because of danger of liver toxicity. }The label says not to take NSAIDs while on it. The Pharmacist said to switch }from Advil, which I take a lot of, to Tylenol.

True, the NSAIDS can contribute to internal bleeding (stomach ulcers) and so can the Methotrexate. Can’t mix them as it potentiates the effects of each. I am sure your doctor and pharmacist went over all the possible side effects with you. Listen to them, it is a toxic drug. I am taking it for Rheumatoid Arthritis. Some take it for M.S. It is supposed to be the #1 choice for RA. I had to go off Betaseron. My neuro said I could take Copaxone but we will discuss that next month when I see him. I had to have liver function tests at two weeks then once a month thereafter. Email me if there is anything else you want to ask. I am new at this, an old hand at M.S. I have decided not to have any side effects from the Methotrexate. Hope it works for me. }Fred. } }

— Joan The main cash crop on the planet Mercury is gluten. The natives are looking at aspartame as an alternate.

Response:

Fred I assume you are talking about low dose 7.5 Mg one per week dosage. If so then I believe you can still take Celebrex. However since Methotrexate is such a good anti-inflammatory medication there should be little need for another NSAID. I took it for about MTX for about 6 weeks and promptly got Pneumonia. Took me 45 days to recover. I highly recommend VERY frequent blood tests. There is little info available on long term effects of this powerful chemotherapy drug. Since I was/am taking Lipitor I do not intend to resume taking MTX again unless I have a major setback. I am Relapsing Remitting and took it to try and avoid my almost annual late spring/early summer relapse. I would recommend it for someone who has Progressive MS and does not want to take the more powerful chemo drugs. I still have a problem with possible long term effects. Might be a good ideal to take a vacation from this drug each Dec/Jan. Good luck Jack "Fred" <n…@junk.email

wrote in message

news:XW9i7.24561$4b5.611459@news6.giganews.com… – Hide quoted text — Show quoted text -

My Neuro wants me to start taking Methotrexate. I am still on Copaxone

after

5 months. Does anyone have any experiences/tips with this drug? I talked

to

a Pharmacist about this drug. The label says not to drink alcohol when taking it. The Pharmacist said that occasional glass of wine would be OK. The label says not to take NSAIDs while on it. The Pharmacist said to

switch

from Advil, which I take a lot of, to Tylenol. Thanks in advance for any information. Fred.

Response:

Fred wrote:

My Neuro wants me to start taking Methotrexate. I am still on Copaxone after 5 months. Does anyone have any experiences/tips with this drug?

I’ve been on Methotrexate at 7.5 Mg per week since 1995. No problems and no side effects. I started Copaxone in June and my doctor told me to stay on both. So far, still no problems. Just make sure to get a blood test for liver function monitoring. I started with one a month the first year, every two months the second year and since I’ve never had a problem tolerating Methotrexate I now only do a blod test every 6-8 months.

Response:

I took this drug, methotrexate for a little over a year. I expirienced no side effects and was very pleased with the effect on my arm strength I di however have many blood tests and a doctor who kept a very careful watch that if any side effects did occur they would be spotted before any problems could develope. I think that is a very important part of going on that type of drug. I came off so that I could participate in the Betaseron clinical trials for chronic progressive MS not becauise I was unhappy with the drug Anna Longman

Response:

Roger wrote …

Does anyone have any experence with this drug ? A Dr. suggested it to me today and it does seem to have some side effects.

I was on methotrexate for 2.5 years with no adverse side effects. I stopped using it because it seemed to have had a diminished effect *and Avonex was then generally available and my HMO OK’d me to get it. With the methx, I was placed on a supplemental dosage of folic acid to keep my red cell count up to normal, and I had to have periodic liver checks (via blood sample) to check for possible adverse effects which have been documented in the literature. Good stuff otherwise, for me, while it lasted. Jeff Shore

Response:

Roger: yes, I have taken methotrexate for six years! Only recently did I suspend taking it on advice from my doctor who said it might be time to take a holiday from it for a while. It comes in tiny yellow pills and I was taking three of them totalling 7.5 mg once a week. It is an unconventional drug for MS but more common for ARTHRITIS. A father of some friends of ours up in Ottawa takes mega doses of methotrexate every day and would not be able to function at all without it. It is a chemotherapy kind of drug and is used for cancer patients as well. If you want to try it Roger, ask your doc to start on a light dose—so that you can ease it upwards later if you want. I’m not sure how they might start you but my guess is 10-20mg once a week—or 5mg once a day or something like that. The only side effect you might experience for the first while is some tummy upset. I did. After five or ten doses is goes away and then there is no side effects at all. I would only go on this drug if you are having extreme pain Roger. They refer to methotrexate as MTX often. Talk to you later buddy… CUJO At 04:36 PM 16-03-2000 -0500, you wrote: – Hide quoted text — Show quoted text -

Does anyone have any experence with this drug ? A Dr. suggested it to me today and it does seem to have some side effects.   Thanks   Roger

Response:

In article <3.0.1.32.20000317102820.006c4…@kos.net

, gmcc…@KOS.NET (Gerry

McCready) writes:

It is an unconventional drug for MS but more common for ARTHRITIS. A father of some friends of ours up in Ottawa takes mega doses of methotrexate every day and would not be able to function at all without it. It is a chemotherapy kind of drug and is used for cancer patients as well.

It is also used by psoriasis patients, yet another autoimmune disease.   a friend of mine with very advanced ms had been on methotrexate for psoriasis since 1964 (no typo). It didn’t stop the development of his ms, though, which was diagnosed in 1985.  Now he is in a chair, can;’t write, can’t read, and now is losing control of his upper body. He has been on IV cytoxan, a stronger cancer drug.  It has slowed down things a little.  (Hey does this person who takes "megadoses" of methotrexate still have any hair?) Kathi

Response:

Hi Kathy: re your question about the patient taking methotrexate having hair: I have not seen the man for 12 years or so and am not sure how to respond. I will ask next time I speak to my friend and will let you know if/when I hear. Gerry At 09:07 PM 17-03-2000 GMT, you wrote: – Hide quoted text — Show quoted text -

In article <3.0.1.32.20000317102820.006c4…@kos.net, gmcc…@KOS.NET (Gerry McCready) writes: It is an unconventional drug for MS but more common for ARTHRITIS. A father of some friends of ours up in Ottawa takes mega doses of methotrexate every day and would not be able to function at all without it. It is a chemotherapy kind of drug and is used for cancer patients as well. It is also used by psoriasis patients, yet another autoimmune disease.   a friend of mine with very advanced ms had been on methotrexate for psoriasis since 1964 (no typo). It didn’t stop the development of his ms, though, which was diagnosed in 1985.  Now he is in a chair, can;’t write, can’t read,

and now

is losing control of his upper body. He has been on IV cytoxan, a stronger cancer drug.  It has slowed down things a little.  (Hey does this person who takes "megadoses" of methotrexate still have any hair?) Kathi

Response:

jdgargoyle wrote:

Robert Hickey <rob…@mail.msy.bellsouth.net wrote in message news:38D173C3.4D46@mail.msy.bellsouth.net… snip I can’t say it is working, but I can’t say it’s NOT working. Why is it our only choices for treating this disease are this type of drug….can’t tell if it’s working or not is the description for most….makes me think treating ms is the biggest scam of the century.

JD Not really a scam. Or at least we don’t know that.  It would be difficult to convince insurances of all types to do MONTHLY MRIs to see what disease activity is occuring.  And one would have to do monthly MRIs for a while before starting a med to see what the norm is for that individual.  Then medications could be evaluated on an individual basis. It all comes down to whatever your insurance is whether HMO, PPO, medicare, medicaid or whatever and their money.      L

Response:

LaVonne I completely understand the i insurance games…..that doesn’t make it right.  I feel like, here put this in your body….we’re not sure if it will help or hinder your symptoms but it is for the good of medical science…..ah crap…..i never dreamed of being some one elses cash cow or being a guinea pig. Take Care : ) JD LaVonne Murphy <mscan…@att.net

wrote in message

news:38D8596B.9746167B@att.net… – Hide quoted text — Show quoted text -> jdgargoyle wrote: > > Robert Hickey <rob…@mail.msy.bellsouth.net

wrote in message

> > news:38D173C3.4D46@mail.msy.bellsouth.net… > > >snip> > > I can’t say it is working, but I can’t say it’s NOT > > > working. > > Why is it our only choices for treating this disease are this type of > > drug….can’t tell if it’s working or not is the description for > > most….makes me think treating ms is the biggest scam of the century. > JD > Not really a scam. Or at least we don’t know that.  It would be > difficult to convince insurances of all types to do MONTHLY MRIs to see > what disease activity is occuring.  And one would have to do monthly > MRIs for a while before starting a med to see what the norm is for that > individual.  Then medications could be evaluated on an individual basis. > It all comes down to whatever your insurance is whether HMO, PPO, > medicare, medicaid or whatever and their money. >      L

Response:

Does anyone have any experence with this drug ? A Dr. suggested it to me today and it does seem to have some side effects.    Thanks    Roger

Response:

Roger wrote:

Does anyone have any experence with this drug ? A Dr. suggested it to me today and it does seem to have some side effects.    Thanks    Roger

I’ve been on it for 5 years. No side-effects I can detect. No positive effects, either, that I can actually see, but it only costs me around $5 a month, is an oral medication I take once a week so it’s a gamble I am willing to take. I can’t say it is working, but I can’t say it’s NOT working.

Response:

On Sun, 12 May 1996 21:34:36 -0400, David Habib <dha…@synapse.net

wrote:

Does anyone have any experience with Methrotrexate and M.S. Would appreciate reading your comments.

This medicine is used among other cases to face Asthma, Bladder-Breast-Ovary carcinomas, Rheumatoid arthritis. Was extensively used to face Child Leukaemia in the past and now is used for above and in the case of Grafting. It  is contraindicated with numerous pharmaceutical products so should be used with care and under a physician’s follow-up

Response:

Hi, Does anyone have any experience with Methrotrexate and M.S. Would appreciate reading your comments. Thanks David

Response:

On 13-05-96 3:34 David Habib <dha…@synapse.net

wrote: Hi, Does anyone have any experience with Methrotrexate and M.S. Would appreciate reading your comments. Thanks David

Hi David, I do use Methotrexate. 7.5 mg / week (On friday, when I rewind my clock) Does it help? I don’t know. Maybe. I don’t experience such a difference. I’m using it about 4 months now. As far as I know Methotrexate is a failed anti cancer drug. Now it is used for diseases like arthritis, psoriasis and MS. A study about Methotrexate and MS (CPMS) is published in 1995:

"Low-Dose (7.5 mg)Oral Methotrexate Reduces the Rate of Progression in Chronic Progressive Multiple Sclerosis."  It was published in the Annals of Neurology, 1995;37:37-60.

This is what BJ wrote (on march 12 th) about it: – Hide quoted text — Show quoted text -

You wrote for more information on Methotrexate, and I looked it up in my PDR and found the following info on the side effects and contraindications for even the low dosage prescribed for those of us with MS. Pleas pay heed to the high-lighted lines/areas as these are the most dangerous one. ((((((((((((((((((hugs)))))))))))))))))))))))))))))))) Methotrexate belongs to the group of medicine antimetabolites.  Use to treat psoriasis and rheumatoid arthritis. Blocks enzyme needed by the cell to live.  This interferes with the growth of certain cells, such as skin cells in psoriasis that are growing rapidly. Loss of hair. Some effects may not occur for months or years after medicine is used. Dosage: Oral and parietal May cause birth defects. May react if 7 Alcohol abuse 7 chicken pox recently 7 Disease of immune system 7 Colitis 7 Infection 7 Intestinal blockage 7 kidney disease 7 liver disease 7 Mouth sores 7 Stomach ulcer may worsen May cause a sensitivity to sunlight. Don t use with medicines for inflammation such as aspirin.  Avoid immunizations Can lower the number of white blood cells and can lower the number of platelets Side Effects: 1. 7 Blood problems 7 Kidney, stomach, or liver problems 7 Loss of hair 7 May cause cancer years after usage such as leukemia 2. Less Common 7 Diarrhea 7 Reddening of the skin 7 Sores in mouth 7 Stomach pain 3. Rare 7 Black tarry stools (generally means bleeding of the bowels) 7 Blood in urine 7 Blurred vision 7 Convulsions 7 Cough hoarseness 7 Fever or Chills 7 Lower back or side pain 7 Painful or difficult urination 7 Pinpoint red spots on skin 7 Shortness of breath 7 Unusual bleeding 4. Less Common Or Rare 7 Acne 7 Boils 7 Loss of appetite 7 Nausea or Vomiting 7 Pale skin 7 Skin rash or itch 7              B.J.        M.S.- THE DISEASE OF USED TO BE.                *HUGS*   For those looking for first-hand accounts of experiences with MS, try:        http://stripe.colorado.edu/~leonarm/ms         and don’t forget to leave your experiences too!     Take charge of your health-care, you are the boss and         you are the one the meds./treatments affect.

There is further information about Methotrexate in: http://www.helsinki.fi/~ahalko/ I hope this will give you a start in your search. It is always a question of balance. Veel Knuffels, Alex Balk             My fastest wheelchair runs 100 Mph          Living with MS is a dangerous way of life ab…@worldaccess.nl

Response:

Hi All, Caught my favorite Pharmacist in tonight and copied this info out of his books on Methrotrexate. Hope it will help. (((((((((((((((((hugs)))))))))))))))))))))))))))))) Methotrexate belongs to the group of medicine antimetabolites.  Use to treat psoriasis and rheumatoid arthritis. Blocks enzyme needed by the cell to live.  This interferes with the growth of certain cells, such as skin cells in psoriasis that are growing rapidly. Loss of hair. Some effects may not occur for months or years after medicine is used. Dosage: Oral and parietal May cause birth defects. May react if

Question:

Lizz,         I was on 1000 mg of Cellcept twice a day.   It was lowered to 500 mg, and the stomach problems decreased.  However, I still have them.  I have lost about 15 pounds in 2 weeks. Thanks, Philip "Lizz Parsons" <nos…@yahoo.com

wrote in message

news:vk99r0lgqt8d53iu4vfbl73hb3vodnmrbu@4ax.com… – Hide quoted text — Show quoted text -

How much Cellcept? I was on 1000 mgs 2 times a day and had horrible GI issues. They dropped me down to 500 mgs twice a day and I feel much better. Have you talked to you doc? I am also on Prograf and Prednisone, but I’m in a drug study through he University of California at San Francisco… ~Lizz Tx 8/23/04 On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.

I’d

like to hear from others as to what is the most effective

Immunosuppressant

medication with the least side effects.  Is there a drug like that? Thanks, PV

Response:

On Thu, 9 Dec 2004 20:49:20 -0500, "Philip V" <phili…@hotmail.com

wrote: Chuk,        My doctor has asked me to stop the Cellcept and has now started me on Rapamune (Siromilus).  I am starting with 4mg once per day.   He would like to restart me on Cellcept after some time.   What exactly is PTLD? The doctor has said that my cholesterol may increased and I may also get some ankle swelling.  Any one else have any experience with Siromilus?   I heard it is a fairly new drug.

Post transplant lymphoproliferative disorder. There’s a bit about it here: http://cnserver0.nkf.med.ualberta.ca/nephkids/ptld.htm Sirolimus is pretty new — my daughter was on it as part of a three year study which was eventually stopped because of the increased risk of PTLD. (The study was to see if kids could take it with cyclosporine, but no prednisone, so she was off prednisone from December 2001 until March of 2004, when she went off the study because of a big abcess on her kidney.) We know a couple of adults that take just sirolimus and seem to be doing fine — it has decreased side effects compared to, say, prednisone or cyclosporine. It might synergize with cyclosporine, so you have to watch out for possible kidney damage. There’s lots of stuff about it on the web — here’s one article: http://www.pslgroup.com/dg/1fb3ce.htm Her cholesterol was a little high, but not too bad. That was probably from her nephrotic syndrome rather than the med. — chuk

Response:

Thanks for the great information on PTLD.  It seems that it is more common in children.  Also, those who have had several instances of rejection who are given a higher dosage of medication. The second article which speaks about the benefits of Siromilus was very interesting.  The doctor is not planning to give me Cyclosporine Neoral since it was causing nepro-toxicitiy.   I am no longer on Cellcept.  The only anti-rejection medication that I’m currently taking is Siromilus.   It sure is expensive.  A one month supply costs about $900. Thanks, Philip "Chuk Goodin" <cgoo…@sfu.ca

wrote in message

news:cpcmlo$sio$1@morgoth.sfu.ca… – Hide quoted text — Show quoted text -

Post transplant lymphoproliferative disorder. There’s a bit about it here: http://cnserver0.nkf.med.ualberta.ca/nephkids/ptld.htm Sirolimus is pretty new — my daughter was on it as part of a three year study which was eventually stopped because of the increased risk of PTLD. (The study was to see if kids could take it with cyclosporine, but no prednisone, so she was off prednisone from December 2001 until March of

2004,

when she went off the study because of a big abcess on her kidney.) We know a couple of adults that take just sirolimus and seem to be doing

fine

— it has decreased side effects compared to, say, prednisone or cyclosporine. It might synergize with cyclosporine, so you have to watch

out

for possible kidney damage. There’s lots of stuff about it on the web — here’s one article: http://www.pslgroup.com/dg/1fb3ce.htm Her cholesterol was a little high, but not too bad. That was probably from her nephrotic syndrome rather than the med. — chuk

Response:

"Philip V" <phili…@hotmail.com

wrote in message

news:0pOdnWCfYrIMVCHcRVn-hQ@rogers.com…

Thanks for the great information on PTLD.  It seems that it is more common in children.  Also, those who have had several instances of rejection who are given a higher dosage of medication. The second article which speaks about the benefits of Siromilus was very interesting.  The doctor is not planning to give me Cyclosporine Neoral since it was causing nepro-toxicitiy.   I am no longer on Cellcept.  The only anti-rejection medication that I’m currently taking is Siromilus. It sure is expensive.  A one month supply costs about $900. Thanks, Philip

$900 – It sounds expensive, but when you compare it to the cost of dialysis it sounds pretty cheap Richard Archer – Hide quoted text — Show quoted text -> "Chuk Goodin" <cgoo…@sfu.ca

wrote in message

> news:cpcmlo$sio$1@morgoth.sfu.ca… >> Post transplant lymphoproliferative disorder. There’s a bit about it >> here: >> http://cnserver0.nkf.med.ualberta.ca/nephkids/ptld.htm >> Sirolimus is pretty new — my daughter was on it as part of a three year >> study which was eventually stopped because of the increased risk of PTLD. >> (The study was to see if kids could take it with cyclosporine, but no >> prednisone, so she was off prednisone from December 2001 until March of > 2004, >> when she went off the study because of a big abcess on her kidney.) >> We know a couple of adults that take just sirolimus and seem to be doing > fine >> — it has decreased side effects compared to, say, prednisone or >> cyclosporine. It might synergize with cyclosporine, so you have to watch > out >> for possible kidney damage. >> There’s lots of stuff about it on the web — here’s one article: >> http://www.pslgroup.com/dg/1fb3ce.htm >> Her cholesterol was a little high, but not too bad. That was probably >> from >> her nephrotic syndrome rather than the med. >> — >> chuk

Response:

On Sun, 12 Dec 2004 17:43:33 -0500, "Philip V" <phili…@hotmail.com

wrote: Thanks for the great information on PTLD.  It seems that it is more common in children.  Also, those who have had several instances of rejection who are given a higher dosage of medication.

Yes, I should have mentioned those things.

The second article which speaks about the benefits of Siromilus was very interesting.  The doctor is not planning to give me Cyclosporine Neoral since it was causing nepro-toxicitiy.   I am no longer on Cellcept.  The only anti-rejection medication that I’m currently taking is Siromilus.   It sure is expensive.  A one month supply costs about $900.

Ouch! My daughter got hers free because she was in a study (and she also got some free placebo ). — chuk

Response:

Fortunately, the Canadian Health Care is one of the best in the world. Dialysis is covered 100%.   Also, since I have other health insurance, the medication is also at no cost. Philip " I am no longer on Cellcept.  The – Hide quoted text — Show quoted text -

only anti-rejection medication that I’m currently taking is Siromilus. It sure is expensive.  A one month supply costs about $900. Thanks, Philip $900 – It sounds expensive, but when you compare it to the cost of

dialysis

it sounds pretty cheap Richard Archer

Response:

So far I have been on Siromilus for about a month.  I’m noticing some acne in strange parts of my body (no, the face is not one of them).  These acne spots are bigger than usual.  I currently have one around my groin and also on my right thigh.  Any one else notice anything while taking Sirolimus? Thanks, Philip

Response:

"Philip V" <phili…@hotmail.com

wrote in message

news:Btidnd6YPuFFUUXcRVn-3A@rogers.com…

Fortunately, the Canadian Health Care is one of the best in the world. Dialysis is covered 100%.   Also, since I have other health insurance, the medication is also at no cost. Philip

my point was that whoever winds up paying for you will be spending less on the drugs, than they would be spending on you if your tx failed through poor anti rejection choice and you had to dialyse. – Hide quoted text — Show quoted text -

" I am no longer on Cellcept.  The only anti-rejection medication that I’m currently taking is Siromilus. It sure is expensive.  A one month supply costs about $900. Thanks, Philip $900 – It sounds expensive, but when you compare it to the cost of dialysis it sounds pretty cheap Richard Archer

Response:

Philip, I’ve suffered no side effects (not that I noticed anyway) from the prednisone. Alan – Hide quoted text — Show quoted text -Philip V wrote:

Thanks to all for the feedback.  I was taking 1000 mg of Cellcept twice a day, but the doctor has now reduced it to 500 mg bid.   The diarrhea is still there, but not as frequent.  The doctor also suggested that they may start me on Prednisone.  I’ve had my transplant for almost 10 years.  It was a live donor (my younger brother) and the match is almost identical. I would rather not start on Prednisone because of the terrible side effects associated with it. My kidney was doing excellently till the last few months when the creatinine increased significantly.  The doctor thinks it may have to do with Cyclosporine, which is why they stopped it gradually.   I really feel that they are over-medicating me. Thanks, Philip "Larry Krzewinski" <Feerless_Fr…@madmagazine.com wrote in message news:92o9r0durveuakjb6qseia3fqqt6ti7dps@4ax.com… On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney. I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that? Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet. As Lizz states in some cases it is possible to have the dose of Cellcept lowered.  1000 mg twice a day is the common dosage.  You can also be prescribed Lomotil or take Imodium AD, if the doctor permits, to help relieve the diarrhea.  Lowering the Cellcept dosage can be taking a gamble with your transplanted kidney.   There are other immunosuppressant drugs available for us with transplanted organs, such as Prograf, but whether you’re able to take them or not depends on your medical situation and your transplant team.  Prograf can also be nephrotoxic just like cyclosporine. Larry

Response:

Thanks to all for the feedback.  I was taking 1000 mg of Cellcept twice a day, but the doctor has now reduced it to 500 mg bid.   The diarrhea is still there, but not as frequent.  The doctor also suggested that they may start me on Prednisone.  I’ve had my transplant for almost 10 years.  It was a live donor (my younger brother) and the match is almost identical. I would rather not start on Prednisone because of the terrible side effects associated with it. My kidney was doing excellently till the last few months when the creatinine increased significantly.  The doctor thinks it may have to do with Cyclosporine, which is why they stopped it gradually.   I really feel that they are over-medicating me. Thanks, Philip "Larry Krzewinski" <Feerless_Fr…@madmagazine.com

wrote in message

news:92o9r0durveuakjb6qseia3fqqt6ti7dps@4ax.com… – Hide quoted text — Show quoted text -

On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.

I’d

like to hear from others as to what is the most effective

Immunosuppressant

medication with the least side effects.  Is there a drug like that? Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet. As Lizz states in some cases it is possible to have the dose of Cellcept lowered.  1000 mg twice a day is the common dosage.  You can also be prescribed Lomotil or take Imodium AD, if the doctor permits, to help relieve the diarrhea.  Lowering the Cellcept dosage can be taking a gamble with your transplanted kidney.   There are other immunosuppressant drugs available for us with transplanted organs, such as Prograf, but whether you’re able to take them or not depends on your medical situation and your transplant team.  Prograf can also be nephrotoxic just like cyclosporine. Larry

Response:

I was on Prednisone for the first 5 years of my transplant.  The doctor reduced it gradually from 20mg to nothing over the 5 years. I experienced mood swings, increased appetite and facial puffiness.  I also had bone problems.  Also Imuran gave me some higher liver levels, so they stopped it while I was still in the hospital after my transplant. Philip "Richard Archer" <mrrichardarc…@nospam.com

wrote in message

news:cp6mfq$nnt$1@newsg3.svr.pol.co.uk… – Hide quoted text — Show quoted text -> "Alan" <u…@nyc.rr.com

wrote in message

> news:Ij8td.64332$Vk6.19475@twister.nyc.rr.com… > > Philip, > > I’ve suffered no side effects (not that I noticed anyway) from the > > prednisone. > > Alan > Personally, Pred gives me increased hunger and weight gain, mood swings, > fluid retention and acheing joints, what its never really done though (for > me) is actually do what its been prescribed for… > Of the three instances I’ve taken it in large doses, one was to stop my > original kidneys failing, when it didn’t even put a dent in the decline of > function, the second was to stop my first transplant acutely rejecting, it > had no impact at all, thirdly to arrest the decline in my last transplant, > where the function decline seemed to get worse rather than better I did also

take it for six months after receiving that transplant. Obviously these are just my personal experiences and I’m sure there are plenty of people just like Alan – but probably just as many like me too Richard Archer Philip V wrote: Thanks to all for the feedback.  I was taking 1000 mg of Cellcept twice

a

day, but the doctor has now reduced it to 500 mg bid.   The diarrhea is still there, but not as frequent.  The doctor also suggested that they may start me on Prednisone.  I’ve had my transplant for almost 10 years.

It > >> was > >> a live donor (my younger brother) and the match is almost identical. > >> I would rather not start on Prednisone because of the terrible side > >> effects > >> associated with it. > >> My kidney was doing excellently till the last few months when the > >> creatinine > >> increased significantly.  The doctor thinks it may have to do with > >> Cyclosporine, which is why they stopped it gradually.   I really feel > >> that > >> they are over-medicating me. > >> Thanks, > >> Philip > >> "Larry Krzewinski" <Feerless_Fr…@madmagazine.com

wrote in message

> >> news:92o9r0durveuakjb6qseia3fqqt6ti7dps@4ax.com… > >>>On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com> > >>>wrote: > >>>>I have been on Cellcept for a few months and now I am having terrible > >>>>stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine > >>>>previously, but the doc thinks it was causing toxicity to the kidney. > >> I’d > >>>>like to hear from others as to what is the most effective > >> Immunosuppressant > >>>>medication with the least side effects.  Is there a drug like that? > >>>Most people using Cellcept have GI issues.  Often eating several > >>>salads a day plus other fruits and vegetables can relieve the problem > >>>but you’ll have to give it a few weeks for your body to get accustomed > >>>to the increased roughage in your diet. > >>>As Lizz states in some cases it is possible to have the dose of > >>>Cellcept lowered.  1000 mg twice a day is the common dosage.  You can > >>>also be prescribed Lomotil or take Imodium AD, if the doctor permits, > >>>to help relieve the diarrhea.  Lowering the Cellcept dosage can be > >>>taking a gamble with your transplanted kidney.   There are other > >>>immunosuppressant drugs available for us with transplanted organs, > >>>such as Prograf, but whether you’re able to take them or not depends > >>>on your medical situation and your transplant team.  Prograf can also > >>>be nephrotoxic just like cyclosporine. > >>>Larry

Response:

Chuk,         My doctor has asked me to stop the Cellcept and has now started me on Rapamune (Siromilus).  I am starting with 4mg once per day.   He would like to restart me on Cellcept after some time.   What exactly is PTLD? The doctor has said that my cholesterol may increased and I may also get some ankle swelling.  Any one else have any experience with Siromilus?   I heard it is a fairly new drug. Thanks, Philip "Chuk Goodin" <cgoo…@sfu.ca

wrote in message

news:cp4o1g$cf7$1@morgoth.sfu.ca…

On Mon, 06 Dec 2004 14:51, Larry Krzewinski

<Feerless_Fr…@madmagazine.com

– Hide quoted text — Show quoted text -

wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.

I’d

like to hear from others as to what is the most effective

Immunosuppressant

medication with the least side effects.  Is there a drug like that? Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet. My daughter has been taking Cellcept since about March (before that she

was

on sirolimus, which had very little side effects but apparently increases

the

risk of PTLD). She has recently started complaining of stomach pains

shortly

after her meds, and she also takes ranitidine to help her stomach. No BM problems, though.  (She’s seven, so things might be different with her.) — chuk

Response:

"Alan" <u…@nyc.rr.com

wrote in message

news:Ij8td.64332$Vk6.19475@twister.nyc.rr.com…

Philip, I’ve suffered no side effects (not that I noticed anyway) from the prednisone. Alan

Personally, Pred gives me increased hunger and weight gain, mood swings, fluid retention and acheing joints, what its never really done though (for me) is actually do what its been prescribed for… Of the three instances I’ve taken it in large doses, one was to stop my original kidneys failing, when it didn’t even put a dent in the decline of function, the second was to stop my first transplant acutely rejecting, it had no impact at all, thirdly to arrest the decline in my last transplant, where the function decline seemed to get worse rather than better I did also take it for six months after receiving that transplant. Obviously these are just my personal experiences and I’m sure there are plenty of people just like Alan – but probably just as many like me too Richard Archer – Hide quoted text — Show quoted text -> Philip V wrote: >> Thanks to all for the feedback.  I was taking 1000 mg of Cellcept twice a >> day, but the doctor has now reduced it to 500 mg bid.   The diarrhea is >> still there, but not as frequent.  The doctor also suggested that they >> may >> start me on Prednisone.  I’ve had my transplant for almost 10 years.  It >> was >> a live donor (my younger brother) and the match is almost identical. >> I would rather not start on Prednisone because of the terrible side >> effects >> associated with it. >> My kidney was doing excellently till the last few months when the >> creatinine >> increased significantly.  The doctor thinks it may have to do with >> Cyclosporine, which is why they stopped it gradually.   I really feel >> that >> they are over-medicating me. >> Thanks, >> Philip >> "Larry Krzewinski" <Feerless_Fr…@madmagazine.com

wrote in message

>> news:92o9r0durveuakjb6qseia3fqqt6ti7dps@4ax.com… >>>On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com> >>>wrote: >>>>I have been on Cellcept for a few months and now I am having terrible >>>>stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine >>>>previously, but the doc thinks it was causing toxicity to the kidney. >> I’d >>>>like to hear from others as to what is the most effective >> Immunosuppressant >>>>medication with the least side effects.  Is there a drug like that? >>>Most people using Cellcept have GI issues.  Often eating several >>>salads a day plus other fruits and vegetables can relieve the problem >>>but you’ll have to give it a few weeks for your body to get accustomed >>>to the increased roughage in your diet. >>>As Lizz states in some cases it is possible to have the dose of >>>Cellcept lowered.  1000 mg twice a day is the common dosage.  You can >>>also be prescribed Lomotil or take Imodium AD, if the doctor permits, >>>to help relieve the diarrhea.  Lowering the Cellcept dosage can be >>>taking a gamble with your transplanted kidney.   There are other >>>immunosuppressant drugs available for us with transplanted organs, >>>such as Prograf, but whether you’re able to take them or not depends >>>on your medical situation and your transplant team.  Prograf can also >>>be nephrotoxic just like cyclosporine. >>>Larry

Response:

Chuk, I know the package instructions say to take cellcept without food but my doctors have always insisted that I take ALL my medications with meals to avoid stomach upsets.  I would talk to her doctor about trying to take this with food.  I know if I take my meds and don’t eat within 20 minutes I get an awful stomach ache I’m betting that is what is happening to her. Celeste "Chuk Goodin" <cgoo…@sfu.ca

wrote in message

news:cp4o1g$cf7$1@morgoth.sfu.ca…

On Mon, 06 Dec 2004 14:51, Larry Krzewinski

<Feerless_Fr…@madmagazine.com

– Hide quoted text — Show quoted text -

wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.

I’d

like to hear from others as to what is the most effective

Immunosuppressant

medication with the least side effects.  Is there a drug like that? Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet. My daughter has been taking Cellcept since about March (before that she

was

on sirolimus, which had very little side effects but apparently increases

the

risk of PTLD). She has recently started complaining of stomach pains

shortly

after her meds, and she also takes ranitidine to help her stomach. No BM problems, though.  (She’s seven, so things might be different with her.) — chuk

Response:

On Wed, 08 Dec 2004 00:38:08 GMT, "Spot" <NoSpa…@verizon.net

wrote: Chuk, I know the package instructions say to take cellcept without food but my doctors have always insisted that I take ALL my medications with meals to avoid stomach upsets.  I would talk to her doctor about trying to take this with food.  I know if I take my meds and don’t eat within 20 minutes I get an awful stomach ache I’m betting that is what is happening to her. Celeste

I take my meds with milk and have for over 12 years.  I’m also prescribed Protonix which may help me alleviate stomach distress.

Response:

On Mon, 06 Dec 2004 14:51, Larry Krzewinski <Feerless_Fr…@madmagazine.com

wrote:

I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.   I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that? Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet.

My daughter has been taking Cellcept since about March (before that she was on sirolimus, which had very little side effects but apparently increases the risk of PTLD). She has recently started complaining of stomach pains shortly after her meds, and she also takes ranitidine to help her stomach. No BM problems, though.  (She’s seven, so things might be different with her.) — chuk

Response:

I have been on the same drugs and dosage as Lizz for the last 6 years. Only problem I’ve had are the bouts of diarrhea which Imodium deals with very well. Considering the underlying reason for taking these drugs I think some problems are worth dealing with. Alan – Hide quoted text — Show quoted text -Larry Krzewinski wrote:

On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.   I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that? Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet. As Lizz states in some cases it is possible to have the dose of Cellcept lowered.  1000 mg twice a day is the common dosage.  You can also be prescribed Lomotil or take Imodium AD, if the doctor permits, to help relieve the diarrhea.  Lowering the Cellcept dosage can be taking a gamble with your transplanted kidney.   There are other immunosuppressant drugs available for us with transplanted organs, such as Prograf, but whether you’re able to take them or not depends on your medical situation and your transplant team.  Prograf can also be nephrotoxic just like cyclosporine. Larry

Lizz Parsons wrote:

How much Cellcept? I was on 1000 mgs 2 times a day and had horrible GI issues. They dropped me down to 500 mgs twice a day and I feel much better. Have you talked to you doc? I am also on Prograf and Prednisone, but I’m in a drug study through he University of California at San Francisco… ~Lizz Tx 8/23/04 On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com wrote: I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.   I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that? Thanks, PV

Response:

On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com

wrote:

I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.   I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that?

Most people using Cellcept have GI issues.  Often eating several salads a day plus other fruits and vegetables can relieve the problem but you’ll have to give it a few weeks for your body to get accustomed to the increased roughage in your diet. As Lizz states in some cases it is possible to have the dose of Cellcept lowered.  1000 mg twice a day is the common dosage.  You can also be prescribed Lomotil or take Imodium AD, if the doctor permits, to help relieve the diarrhea.  Lowering the Cellcept dosage can be taking a gamble with your transplanted kidney.   There are other immunosuppressant drugs available for us with transplanted organs, such as Prograf, but whether you’re able to take them or not depends on your medical situation and your transplant team.  Prograf can also be nephrotoxic just like cyclosporine. Larry

Response:

I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.   I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that? Thanks, PV

Response:

How much Cellcept? I was on 1000 mgs 2 times a day and had horrible GI issues. They dropped me down to 500 mgs twice a day and I feel much better. Have you talked to you doc? I am also on Prograf and Prednisone, but I’m in a drug study through he University of California at San Francisco… ~Lizz Tx 8/23/04 On Sun, 5 Dec 2004 15:25:39 -0500, "Philip V" <phili…@hotmail.com

wrote: – Hide quoted text — Show quoted text -

I have been on Cellcept for a few months and now I am having terrible stomach problems (vomiting, loose BM etc.).  I was on Cyclosporine previously, but the doc thinks it was causing toxicity to the kidney.   I’d like to hear from others as to what is the most effective Immunosuppressant medication with the least side effects.  Is there a drug like that? Thanks, PV

Response:

Question:

In the last year, my physician gave me (somewhat) liberal amounts of ultram to try for pain relief, and I ran into the problem of extreme headache. When I first took it, I had ended up with head pain, but could not definitively link it to the ultram. I have since had it prescribed a couple more times, and had the headache return. It has occurred after a single dose, as well as after a few doses. I won’t use it anymore except as a last resort, because the near migraine I get doesn’t justify the minimal pain relief I receive. I have gotten migraines for years, so I am aware of the degree of head pain I end up with.  I would recommend trying ultram, however, because the few times when I did not have a headache, the pain relief was ok. There were really no euphoric or sleepy side effects, and a mild degree of relief was attained. I told friends that it was like a step above OTC drugs, and a step below drugs like codeine, darvocet, etc.  Good luck to others, but watch out for that headache!         Melissa

: … I must have a physician who is sympathetic to his or her patients’ : chronic pain and not be afraid to prescribe proper medications. : You may fear becoming addicted or dependent on narcotic medications : but it has been shown that when such medications are used to treat : actual chronic pain, the probability of addiction is far less than : when narcotics are used recreationally.  You may become dependent on : the medication because it relieves your pain, not because your body is : craving it. : There is a new drug called Ultram which is non-narcotic and has been : found effective for chronic pain for many people including myself.  I : suggest you discuss this with your physician, assuming he or she is : willing to deal with your pain. Your article was superb! Here are a few interesting things I’ve learned about Ultram & other opioids: * Despite its wonderful attributes and very low risk, this drug has been available outside of the U.S. for EIGHTEEN YEARS, thanks to our fabulous F.D.A.  So we have been needlessly suffering for quite some time.   (Does anyone have an appropriate acronym reversal for "F.D.A."?) * Ultram often causes drowsiness or even pronounced sleepiness when first used, but as with many drugs this effect can disappear with continued use, so that one becomes able to take it, even at the higher dose, without any tiredness whatsoever.  Even people who take morphine for pain can feel virtually no effects other than the pain relief: no sleepiness, no euphoria, and no "mental clouding" in proper doses. * Ultram has even less risk of psychological dependence ("addiction") than other opioids (which, indeed, have virtually no such risk to begin with, in chronic pain) because its metabolism is delayed in the body.  The down side of this is that the onset of pain relief is also delayed.  (In my experience, it takes an hour or even two to receive the full effect.  I have tried dissolving it in water ahead of time, although it doesn’t fully dissolve, so I wonder if this method will save any time.)   (Does anyone know if any potentiating drugs such as Vistaril can enhance    the speed or analgesia of Ultram?) * Many doctors (not pain specialists, of course) are worried about prescribing more than one tablet several times a day, for occasional use only.  Yet it can be safely used at up to 2 tablets six times daily on a continual basis, and perhaps even more, if effects such as constipation don’t restrict the usage.  (This would be expensive, but so is pain!!) Two tablets 3 times daily is a common dosage.  At high doses you might be better off with another opioid, but the high doses may be useful in acute pain or to prove that your pain can be controlled before going further.   (Has anyone heard of using 3 tablets at once?) * Because of its low addiction potential, this is perhaps the only opioid that many doctors are willing to prescribe for ongoing (not acute) pain. (Note that doctors in Texas and California are now protected by laws which prohibit any criminal charges against physicians prescribing controlled painkillers for chronic pain not responsive to other therapies.  Of course, responsible pain specialists are already doing this, and have been for a very, very long time.) * Ultram isn’t chemically related to the natural opiates, but it is a mild opioid because it is a synthetic drug which acts directly on a morphine receptor.  Most pharmacists and doctors seem unaware of this (and we should leave them in that state!), but it’s in the manufacturer sheet. ("Opioid" is an all-encompassing, newer word for "narcotic" without the negative connotation.  "Endorphins", by the way, is a contraction of "Endogenous morphines": literally "the morphines within us".  Everyone is constantly under the influence of chemicals many times more powerful than morphine and even heroin!  Yes, even the DEA regulators…) * Ultram costs $53.00 for 100 tablets at my discount pharmacy.  Can anyone suggest a mail-order pharmacy with better prices, perhaps in quantity? * Ultram does not exhibit a large degree of tolerance.  However, tolerance is actually not a major problem with opioids because the dose necessary to achieve analgesia generally stabilizes (as opposed to the dose needed to achieve euphoria in recreational use), and because the dose of morphine and similar drugs can be increased virtually without limit when this is necessary in degenerative pain (such as cancer pain), which often gets worse and worse.  Cancer patients can be on levels of morphine which would kill someone not adjusted to it. * Codeine, opium, laudanum and (as far as I know) morphine were freely available to anyone without a prescription in the United States in the 1800’s.  They could be freely purchased at grocery stores and pharmacies. Opium was actually not thought to be much of a problem at the time; alcohol was considered much worse, and, correctly, much more dangerous to the body.  (Historians have even disputed exaggerated stories about usage by the Chinese, and in opium "dens" in the U.S.)  The reasons for the laws which made these natural substances more and more restricted stemmed largely from pharmacists’ and doctors’ desires to have exclusive power over them, and from problems which resulted from the introduction of hypodermic needles and heroin (which was designed by researchers hoping to find a non-addictive morphine analog).  This is not intended to imply that they are without risk, but to bring perspective to the situation we are currently in, in which many doctors are only now "rediscovering" some of the most useful drugs known to medicine.  For those in pain, things might have been much easier about 100 years ago!  Certainly almost no one should feel the need to use suicide to escape from pain. * In addition to pain, opioids have been used to treat an amazing variety of disorders, including depression, anxiety, and schizophrenia, and are still being tested in these capacities (or at least were in the 1980’s). They can be quite effective; this combined with the fact that the brain needs appropriate levels of similar chemicals (endorphins & enkephalins) to function normally suggests an explanation of why street addicts sought out their drugs in the first place (an attetmpt to self-medicate), and why their lives often predictably fall apart as soon as they are "detoxified" because of societal pressure.  When they inevitably return to narcotics, they become closer to what we would consider normal.  In fact, studies in Holland have shown that addicts can function quite normally and be virtually indistinguishable from the rest of us … as long as they get their "medicine" in a timely fashion.  It is when they rely on spurious supplies of overpotent drugs such as heroin that they run into severe problems.  They, too, may have been better off in the 1800’s.

Response:

* Despite its wonderful attributes and very low risk, this drug has been available outside of the U.S. for EIGHTEEN YEARS, thanks to our fabulous F.D.A.  So we have been needlessly suffering for quite some time.

Canada has an even stranger situation. The manufacturer attempted to secure approval to classify the Ultram as non-narcotic and the Canadian officials refused.  They wanted to classify it as a narcotic drug so McNeill withdrew its application. On the other hand, you can get over-the-counter medications in Canada which contain codiene which is a controlled drug in the US. * Ultram often causes drowsiness or even pronounced sleepiness when first used, but as with many drugs this effect can disappear with continued use, so that one becomes able to take it, even at the higher dose, without any tiredness whatsoever.  Even people who take morphine for pain can feel virtually no effects other than the pain relief: no sleepiness, no euphoria, and no "mental clouding" in proper doses.

I noticed a number of side effects when I first took Ultram.  All have disappeared. * Ultram has even less risk of psychological dependence ("addiction") than other opioids (which, indeed, have virtually no such risk to begin with, in chronic pain) because its metabolism is delayed in the body.  The down side of this is that the onset of pain relief is also delayed.  (In my experience, it takes an hour or even two to receive the full effect.  I have tried dissolving it in water ahead of time, although it doesn’t fully dissolve, so I wonder if this method will save any time.)  (Does anyone know if any potentiating drugs such as Vistaril can enhance   the speed or analgesia of Ultram?)

For this reason, it’s important to take the medication regularly for chronic pain and not wait for the pain to become severe or unbearable. According to the manufacturer, other CNS acting drugs will enhance the analgesic effect of Ultram. * Many doctors (not pain specialists, of course) are worried about prescribing more than one tablet several times a day, for occasional use only.  Yet it can be safely used at up to 2 tablets six times daily on a continual basis, and perhaps even more, if effects such as constipation don’t restrict the usage.  (This would be expensive, but so is pain!!) Two tablets 3 times daily is a common dosage.  At high doses you might be better off with another opioid, but the high doses may be useful in acute pain or to prove that your pain can be controlled before going further.  (Has anyone heard of using 3 tablets at once?)

The literature accompanying the drug indicates a maximum daily dose of 400mg. which means two 50mg. tablets four times a day.  I have not exceeded this maximum and do not recommed it to others. snip * Ultram does not exhibit a large degree of tolerance.  However, tolerance is actually not a major problem with opioids because the dose necessary to achieve analgesia generally stabilizes (as opposed to the dose needed to achieve euphoria in recreational use), and because the dose of morphine and similar drugs can be increased virtually without limit when this is necessary in degenerative pain (such as cancer pain), which often gets worse and worse.  Cancer patients can be on levels of morphine which would kill someone not adjusted to it.

I’ve taken it for about five months and it is still effective at the same dose. snip Bob Engelbardt Kailua, Hawaii

Response:

That was quite the reply!  I appreciate all of the information.  I also agree that the risk of addiction is greatly overstated with just about all pain meds.  Soem day, maybe the general medical community wil start reading and believing their own literature! One thought on the FDA.  While they are an easy target of criticism, you have to keep things in perspective.  Yes they are slow, but they have recently made great improvements.  Remember that their primary directive, as established by Congress, is to protect the American people from harmful medications.  For every helpful med that they slow down, there are dozens of harmful meds that they keep out! Also, remember that they can’t approve anything until some company is willing to do the testing necessary and submit the drug for approval.  I am not familiar with Ultram’s case, but I know that, in many cases, the FDA gets complaints regarding their "keeping drugs fron those who need them" on medications that have never been submitted for review. Bottom line is that the FDA is a hard working group of dedicated professionals who are underpaid and under-staffed.  They are doing a difficult job with limited resources.  If you want to see things speed-up, talk to Newt and his budies about providing realistic levels of funding! Walt Hanks Health Education: Bringing perspective, vision, and          individual empowerment to Healthcare.

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: One thought on the FDA.  While they are an easy target of criticism, you : have to keep things in perspective.  Yes they are slow, but they have : recently made great improvements.  Remember that their primary : directive, as established by Congress, is to protect the American people : from harmful medications.  For every helpful med that they slow down, : there are dozens of harmful meds that they keep out! It is hard to say who is correct, but the opposite ratio is often put forth: some harmful medications are kept out, but many useful ones are delayed or kept off the U.S. market.  "Harmful" is a very elusive term because some degree of risk is reasonable when greater benefits are expected.  I think the FDA should require manufacturers to provide information on all known risks to doctors and patients, who should then be allowed to make their own informed decisions about what to use to save or improve their lives. : Also, remember that they can’t approve anything until some company is : willing to do the testing necessary and submit the drug for approval.  I : am not familiar with Ultram’s case, but I know that, in many cases, the : FDA gets complaints regarding their "keeping drugs fron those who need : them" on medications that have never been submitted for review. Of course, the FDA’s approval process is so complex, lengthy, and incredibly expensive that very few companies are willing to submit drugs which they can’t get patent protection on, or which can’t be sold to a large portion of the sick population, or which can’t be sold for very high prices.  The result is that many drugs never make it to the U.S. market, and those that do often have greatly inflated prices.  As a result, many Americans have to purchase drugs from overseas suppliers – if they are able to. The FDA has improved in the case of AIDS, based on the recognization that many patients die while waiting for drugs to be approved.  But the same reasoning should be applied to every illness that threatens life or significantly impairs well-being, not just AIDS.

Response:

I tried Ultram for chronic nerve pain but did not find it very effective for very long. It certainly is better than Tylenol, but… I am now on 120 mgs of MS Contin (morphine) with up to 8 Percocet per day. I didn’t know that Ultram was considered an opoid!

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: Canada has an even stranger situation. The manufacturer attempted to : secure approval to classify the Ultram as non-narcotic and the : Canadian officials refused.  They wanted to classify it as a narcotic : drug so McNeill withdrew its application. That’s interesting.  In the U.S., it is not classified as a controlled substance, which is a major reason why it is so popular with physicians and pharmacists.  The manufacturer information seems written to mildly disguise the fact that Ultram is an opioid.  (Some pharmacists wrongly believe it to be an NSAID!) I should have mentioned in the earlier post that Ultram has less likelihood to be abused recreationally than codeine.  Although the manufacturer information says that "in supra-therapeutic levels, it was recognized as an opioid" (paraphrased), it also states that *psychological* dependence (addiction) has been quite rare. However, as with all opioids, *physical* dependence can and does occur with continuous (round-the-clock) usage, AND is nothing to worry about.   That is, if the drug is _abruptly_ stopped, especially after taking the 100mg dose several times a day for several days, you may experience flu-like symptoms: chills, headache, and a general feeling of being ill, among other things.  These withdrawal symptoms are often milder than the stronger opioids’, but are unpleasant.  The solution is simply to taper off the drug over a short period of time: a few days to a couple weeks.   It has been shown that even patients taking high doses of morphine continuously for *years* can taper off their drug completely in about two weeks with no withdrawal symptoms, provided of course that their pain has been resolved with some other treatment. : For this reason, it’s important to take the medication regularly for : chronic pain and not wait for the pain to become severe or unbearable. Absolutely, although some people do fine when taking it just during the day and skipping the nighttime dose that would normally be used in "around-the-clock" dosing to prevent withdrawal or rebound effects. Incidentally, regular dosing (and adjustment of the dose & timing if any tolerance develops) seems to exempt opioids from the "rebound headache" problems experienced with other medications.  As long as side effects don’t limit the usage, the dose of many opioids can be safely increased until adequate analgesia is achieved – and lasts. : The literature accompanying the drug indicates a maximum daily dose of : 400mg. which means two 50mg. tablets four times a day.  I have not : exceeded this maximum and do not recommed it to others. True, but my doctor said that guidelines provided to him (apparently by the manufacturer) indicate that the higher doses I mentioned may be used if necessary.  Manufacturer information sheets are commonly provided to patients and contain conservative information.  (In fact, the U.S. FDA prohibits manufacturers from listing the many commonly accepted – but technically unapproved – uses of drugs in these pages.)  Doctors have access to numerous guidelines other than the PDR (a compendium of the mfr sheets) which provide more practical information.

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: In the last year, my physician gave me (somewhat) liberal amounts of ultram to : try for pain relief, and I ran into the problem of extreme headache. When I : first took it, I had ended up with head pain, but could not definitively link : it to the ultram. I have since had it prescribed a couple more times, and had : the headache return. It has occurred after a single dose, as well as after a : few doses. I won’t use it anymore except as a last resort, because the near : migraine I get doesn’t justify the minimal pain relief I receive. I have : gotten migraines for years, so I am aware of the degree of head pain I end up : with. So that others don’t ignore Ultram as a potential headache treatment, I should mention that it has been very effective for some people even where practically everything else (except stronger opioids) had failed, including OTCs, NSAIDs, beta blockers, calcium channel blockers, antidepressants, antiseizure medications, Fiorinal, Midrin, dihydroergotamine, etc. etc. Also, headache is a possible side effect associated with, it seems, the majority of prescription medications – even those commonly used to TREAT headache. Finally, some people given morphine for various types of pain experience headaches despite the drug. :  I would recommend trying ultram, however, because the few times when I did : not have a headache, the pain relief was ok. There were really no euphoric or : sleepy side effects, and a mild degree of relief was attained. I told friends : that it was like a step above OTC drugs, and a step below drugs like codeine, : darvocet, etc. My physician indicated that it is stronger than some of the familiar Tylenol-plus-codeine combinations, but weaker than most opiates. Has anyone found Ultram’s effects to be boosted when taken in combination with aspirin or Tylenol, in the way that stronger opioids can be?

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I tried Ultram for chronic nerve pain but did not find it very effective for very long. It certainly is better than Tylenol, but… I am now on 120 mgs of MS Contin (morphine) with up to 8 Percocet per day. I didn’t know that Ultram was considered an opoid!

It’s not.  Ultram works in a similar manner as an opoid but since it doesn’t contain a natural or synthetic narcotic ingredient, it’s not classified as an opoid. Bob Engelbardt Kailua, Hawaii

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It has been shown that even patients taking high doses of morphine continuously for *years* can taper off their drug completely in about two weeks with no withdrawal symptoms …

Say what?

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Has anyone found Ultram’s effects to be boosted when taken in combination with aspirin or Tylenol, in the way that stronger opioids can be?

I tried it combined with extra-strength Tylenol for a few days but didn’t notice any marked difference in its effectiveness.  I understand the manufacturer is looking at combining it with acetaminophen (generic Tylenol). Bob Engelbardt Kailua, Hawaii

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: The literature accompanying the drug indicates a maximum daily dose of : 400mg. which means two 50mg. tablets four times a day.  I have not : exceeded this maximum and do not recommed it to others. True, but my doctor said that guidelines provided to him (apparently by the manufacturer) indicate that the higher doses I mentioned may be used if necessary.  Manufacturer information sheets are commonly provided to patients and contain conservative information.  (In fact, the U.S. FDA prohibits manufacturers from listing the many commonly accepted – but technically unapproved – uses of drugs in these pages.)  Doctors have access to numerous guidelines other than the PDR (a compendium of the mfr sheets) which provide more practical information.

The 400mg. maximum recommended doseage came from the detailed information sheet that accompanied the bulk supply of the drug.  It was not from a patient  information sheet but I don’t disagree that a higher dose might be safe for some people and that other sources of information may differ from these sheets. Bob Engelbardt Kailua, Hawaii

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Has anyone found Ultram’s effects to be boosted when taken in combination with aspirin or Tylenol, in the way that stronger opioids can be? I tried it combined with extra-strength Tylenol for a few days but didn’t notice any marked difference in its effectiveness.  I understand the manufacturer is looking at combining it with acetaminophen (generic Tylenol). Bob Engelbardt Kailua, Hawaii

Has anyone else experienced what is known as an adverse reaction? I took it at night hoping to get a good night’s rest.  Was I suprised. might just have well taken a double dose of pep pills. Stood me on my ear and kept me awake all night.

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: … I must have a physician who is sympathetic to his or her patients’ : chronic pain and not be afraid to prescribe proper medications. : You may fear becoming addicted or dependent on narcotic medications : but it has been shown that when such medications are used to treat : actual chronic pain, the probability of addiction is far less than : when narcotics are used recreationally.  You may become dependent on : the medication because it relieves your pain, not because your body is : craving it. : There is a new drug called Ultram which is non-narcotic and has been : found effective for chronic pain for many people including myself.  I : suggest you discuss this with your physician, assuming he or she is : willing to deal with your pain. Your article was superb! Here are a few interesting things I’ve learned about Ultram & other opioids: * Despite its wonderful attributes and very low risk, this drug has been available outside of the U.S. for EIGHTEEN YEARS, thanks to our fabulous F.D.A.  So we have been needlessly suffering for quite some time.   (Does anyone have an appropriate acronym reversal for "F.D.A."?) * Ultram often causes drowsiness or even pronounced sleepiness when first used, but as with many drugs this effect can disappear with continued use, so that one becomes able to take it, even at the higher dose, without any tiredness whatsoever.  Even people who take morphine for pain can feel virtually no effects other than the pain relief: no sleepiness, no euphoria, and no "mental clouding" in proper doses. * Ultram has even less risk of psychological dependence ("addiction") than other opioids (which, indeed, have virtually no such risk to begin with, in chronic pain) because its metabolism is delayed in the body.  The down side of this is that the onset of pain relief is also delayed.  (In my experience, it takes an hour or even two to receive the full effect.  I have tried dissolving it in water ahead of time, although it doesn’t fully dissolve, so I wonder if this method will save any time.)   (Does anyone know if any potentiating drugs such as Vistaril can enhance    the speed or analgesia of Ultram?) * Many doctors (not pain specialists, of course) are worried about prescribing more than one tablet several times a day, for occasional use only.  Yet it can be safely used at up to 2 tablets six times daily on a continual basis, and perhaps even more, if effects such as constipation don’t restrict the usage.  (This would be expensive, but so is pain!!) Two tablets 3 times daily is a common dosage.  At high doses you might be better off with another opioid, but the high doses may be useful in acute pain or to prove that your pain can be controlled before going further.   (Has anyone heard of using 3 tablets at once?) * Because of its low addiction potential, this is perhaps the only opioid that many doctors are willing to prescribe for ongoing (not acute) pain. (Note that doctors in Texas and California are now protected by laws which prohibit any criminal charges against physicians prescribing controlled painkillers for chronic pain not responsive to other therapies.  Of course, responsible pain specialists are already doing this, and have been for a very, very long time.) * Ultram isn’t chemically related to the natural opiates, but it is a mild opioid because it is a synthetic drug which acts directly on a morphine receptor.  Most pharmacists and doctors seem unaware of this (and we should leave them in that state!), but it’s in the manufacturer sheet. ("Opioid" is an all-encompassing, newer word for "narcotic" without the negative connotation.  "Endorphins", by the way, is a contraction of "Endogenous morphines": literally "the morphines within us".  Everyone is constantly under the influence of chemicals many times more powerful than morphine and even heroin!  Yes, even the DEA regulators…) * Ultram costs $53.00 for 100 tablets at my discount pharmacy.  Can anyone suggest a mail-order pharmacy with better prices, perhaps in quantity? * Ultram does not exhibit a large degree of tolerance.  However, tolerance is actually not a major problem with opioids because the dose necessary to achieve analgesia generally stabilizes (as opposed to the dose needed to achieve euphoria in recreational use), and because the dose of morphine and similar drugs can be increased virtually without limit when this is necessary in degenerative pain (such as cancer pain), which often gets worse and worse.  Cancer patients can be on levels of morphine which would kill someone not adjusted to it. * Codeine, opium, laudanum and (as far as I know) morphine were freely available to anyone without a prescription in the United States in the 1800’s.  They could be freely purchased at grocery stores and pharmacies. Opium was actually not thought to be much of a problem at the time; alcohol was considered much worse, and, correctly, much more dangerous to the body.  (Historians have even disputed exaggerated stories about usage by the Chinese, and in opium "dens" in the U.S.)  The reasons for the laws which made these natural substances more and more restricted stemmed largely from pharmacists’ and doctors’ desires to have exclusive power over them, and from problems which resulted from the introduction of hypodermic needles and heroin (which was designed by researchers hoping to find a non-addictive morphine analog).  This is not intended to imply that they are without risk, but to bring perspective to the situation we are currently in, in which many doctors are only now "rediscovering" some of the most useful drugs known to medicine.  For those in pain, things might have been much easier about 100 years ago!  Certainly almost no one should feel the need to use suicide to escape from pain. * In addition to pain, opioids have been used to treat an amazing variety of disorders, including depression, anxiety, and schizophrenia, and are still being tested in these capacities (or at least were in the 1980’s). They can be quite effective; this combined with the fact that the brain needs appropriate levels of similar chemicals (endorphins & enkephalins) to function normally suggests an explanation of why street addicts sought out their drugs in the first place (an attetmpt to self-medicate), and why their lives often predictably fall apart as soon as they are "detoxified" because of societal pressure.  When they inevitably return to narcotics, they become closer to what we would consider normal.  In fact, studies in Holland have shown that addicts can function quite normally and be virtually indistinguishable from the rest of us … as long as they get their "medicine" in a timely fashion.  It is when they rely on spurious supplies of overpotent drugs such as heroin that they run into severe problems.  They, too, may have been better off in the 1800’s.

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Has anyone else experienced what is known as an adverse reaction? I took it at night hoping to get a good night’s rest.  Was I suprised. might just have well taken a double dose of pep pills. Stood me on my ear and kept me awake all night.

Yup! Same thing here, I wouldn’t/can’t take it after 6pm or I’ll be up climbing the walls, and that’s only 25mg.. Also, I swear that I’m actually feeling worse pain wise, my bad back is acting up, etc. I think it’s back to the hydrocodone for me.. Doug No wired feeling, just a severe headache. It doesn’t happen every time, but when it does it’s a killer. I received e-mail from someone with the same symptom. Good luck to you.         Melissa

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Has anyone found Ultram’s effects to be boosted when taken in combination with aspirin or Tylenol, in the way that stronger opioids can be? I tried it combined with extra-strength Tylenol for a few days but didn’t notice any marked difference in its effectiveness.  I understand the manufacturer is looking at combining it with acetaminophen (generic Tylenol). Geez, I *hope* not.  I *never* take tylenol.  I do take Ultram but if they combine it with tylenol I’ll quit it.

I doubt they will make it available only in combination with tylenol but I’m curious why you are against taking tylenol?

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– Hide quoted text — Show quoted text – Has anyone found Ultram’s effects to be boosted when taken in combination with aspirin or Tylenol, in the way that stronger opioids can be? I tried it combined with extra-strength Tylenol for a few days but didn’t notice any marked difference in its effectiveness.  I understand the manufacturer is looking at combining it with acetaminophen (generic Tylenol). Geez, I *hope* not.  I *never* take tylenol.  I do take Ultram but if they combine it with tylenol I’ll quit it. I doubt they will make it available only in combination with tylenol but I’m curious why you are against taking tylenol?

Because it has never done *anything* for any pain I’ve ever had.  And because, if I’m gonna have liver/kidney damage from a med, it’s gonna be one that works! I’ve often wondered if tylenol simply gets by due to a "placebo" effect… — Jill R.C. Moore                 *  Don’t lose your head to gain a minute. SUNY HSC at Syracuse, NY        *  Your brain is in it.  Burma Shave

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As I remember, it (Ultram) made me sick to my stomach. Very unpleasant reaction. Stopped taking it. If you look around the net, you’ll find a lot of folks don’t tolerate it — some pretty bad reactions to it. My PCP oversold it to me, IMHO.

I also had about two weeks of nausea which I think was due to the Ultram but there is really no way of telling.  I continued to use it along with some medication for my stomach and I have not had any problems since.  I’ve been on Ultran for about four months now and it is a godsend for me but I realize others either can’t tolerate it or do not gain much1 benefit for pain control.

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*

* *Has anyone found Ultram’s effects to be boosted when taken in combination *with aspirin or Tylenol, in the way that stronger opioids can be?         <snip-snip *Has anyone else experienced what is known as an adverse reaction? *I took it at night hoping to get a good night’s rest.  Was I suprised. *might just have well taken a double dose of pep pills. Stood me on my *ear and kept me awake all night. As I remember, it made me sick to my stomach. Very unpleasant reaction. Stopped taking it. If you look around the net, you’ll find a lot of folks don’t tolerate it — some pretty bad reactions to it. My PCP oversold it to me, IMHO.

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: Has anyone else experienced what is known as an adverse reaction? : I took it at night hoping to get a good night’s rest.  Was I suprised. : might just have well taken a double dose of pep pills. Stood me on my : ear and kept me awake all night. : Yup! Same thing here, I wouldn’t/can’t take it after 6pm or I’ll be : up climbing the walls, and that’s only 25mg.. Also, I swear that I’m : actually feeling worse pain wise, my bad back is acting up, etc. : I think it’s back to the hydrocodone for me.. Some people consider Ultram a godsend, while others have unpleasant side-effects from it.  Some people also have strange reactions to Stadol, a relatively new synthetic opioid analgesic, packaged as a nasal spray, and approved for use in migraine. People who have trouble with these drugs may well do better with the traditional opiates, which have been used continuously for decades by many people without serious toxic effects or organ damage.  Who knows whether the newer drugs will prove as safe.

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Has anyone found Ultram’s effects to be boosted when taken in combination with aspirin or Tylenol, in the way that stronger opioids can be? I tried it combined with extra-strength Tylenol for a few days but didn’t notice any marked difference in its effectiveness.  I understand the manufacturer is looking at combining it with acetaminophen (generic Tylenol).

Geez, I *hope* not.  I *never* take tylenol.  I do take Ultram but if they combine it with tylenol I’ll quit it. — Jill R.C. Moore                 *  Don’t lose your head to gain a minute. SUNY HSC at Syracuse, NY        *  Your brain is in it.  Burma Shave

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Has anyone else experienced what is known as an adverse reaction? I took it at night hoping to get a good night’s rest.  Was I suprised. might just have well taken a double dose of pep pills. Stood me on my ear and kept me awake all night.

When I first tried Ultram, it made me feel a little spacey but not the reaction you describe.  Try taking it only in the daytime.  After you have used it for several weeks, try a dose at night and see if it happens again.  People tend to have less adverse reactions after they take the medication for a while. If you are taking it for chronic pain, you may not need it at night anyway.

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Has anyone else experienced what is known as an adverse reaction? I took it at night hoping to get a good night’s rest.  Was I suprised. might just have well taken a double dose of pep pills. Stood me on my ear and kept me awake all night.

Yup! Same thing here, I wouldn’t/can’t take it after 6pm or I’ll be up climbing the walls, and that’s only 25mg.. Also, I swear that I’m actually feeling worse pain wise, my bad back is acting up, etc. I think it’s back to the hydrocodone for me.. Doug

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Question:

Bands, Thanks for posting the yohimbe review.  It does, however, contain a misprint that could confuse people.  The review stated that yohimbine is an "alpha, adrenergic agonist."  It is actually an alpha 2 ANTAGONIST.  An agonist stimulates the target receptor and an antagonist blocks the target receptor and prevents endogenous (produced in the body) hormones from stimulating the receptor.  Yohimbine is one of the most selective alpha 2 antagonists (1). Reference list 1.) LAFONTAN, M. et. al.  "Evidence for the alpha 2 nature of the alpha-adrenergic receptor inhibiting lipolysis in human fat cells."   Eur J Pharmacol (1980 Aug 22) Vol 66,  No 1,  Pg 87-93. "THE ORDER OF POTENCY OF THE ALPHA-ANTAGONISTS for the human alpha-adrenoceptor of adipocytes was: YOHIMBINE piperoxane phenoxybenzamine prazosin … it is noteworthy that although localized postsynaptically this alpha-receptor can be classified as ALPHA 2 like the commonly known presynaptic alpha-adrenergic receptor which INHIBITS NORADRENALINE RELEASE FROM SYMPATHETIC NEURONS." [Emphasis added] — Free Medical Abstracts:  http://www.ncbi.nlm.nih.gov/PubMed/boolean.html Procite (database for medical articles):  http://sun.risinc.com Life Extension Foundation:  http://www.lef.org Libertarian Party:  http://www.lp.org DISCLAIMER: The author is a self-educated man who has no formal medical education. This post is not intended to diagnose or treat any condition. Nothing in this post should be construed to be a substitute for appropriate medical treatment. The authors comments are offered for information purposes only. It is my belief that the free exchange of information, and the availability of free medical abstracts, enables people to intelligently choose medical professionals and treatments. The most fertile soil for unnecessary human suffering is the combination of ignorance and a worldwide medical/drug monopoly. Live long and prosper. DrumLib (Drummer & Libertarian)

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Thank you very much for the post! Do you happen to know if you can get yohimbine via ’scrip or OTC? Thanks. J

As far as I know, pure Yohimbine is prescription only. It’s relatively cheap too. Brenda

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Thank you very much for the post! Do you happen to know if you can get yohimbine via ’scrip or OTC? Thanks. J — Men are from Mars. Women are from Venus. Computers are from Hell. -Byte Magazine

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Ok, here it is, so I only have to type this once. =) From the Sports Supplement Review 3rd issue by Bill Phillips: Yohimbe – or more specifically Yohimbine hydrochloride (HCL) – may indeed be an herbal nutrient which will get your blood pumping – quite literally. Although this product has been on the market for quite some time, I think some of the new research information on this nutrient is going to help catapult it to a new level of popularity in the very near future. The yohimbine hydrochloride chemical is found as a natural component of yohimbe bark. It is, apparently, this chemical extract which is the active component of yohimbe powder. Pure yohimbine hydrochloride has been used in the medical profession for a number of years to treat male impotence. Its action as an "alpha, adrenergic agonist" appears to increase the flow of blood into the penis, while at the same time preventing blood from flowing out. This would obviously have strong implications for male sexual function. It also appears to increase libido, and it’s even been written in the Physicians’ Desk Reference that it "may have activity as an aphrodisiac." Not only does this stuff appear to improve sexual function and drive, it has also been shown to actually decrease fat synthesis in the body as well as increase fatty acid mobilization from fat stores in women (especially in the hips). The combination of these two effects may, indeed, position this herb/chemical as a viable aid to bodyfat loss. As if these two rather attractive effects weren’t enough, there appear to be other health benefits attached to the use of this product. Doses between 1- and 2- mg/day have been shown to decrease platelet aggregation in the bloodstream – which basically means it can help prevent arteries from becoming clogged and causing strokes or heart attacks. It has also been used in the treatment of congestive heart failure. Although further studies regarding its effectiveness as a sexual performance and libido enhancer are warranted, I think yohimbe/yohimbine holds some promise – expect to see it being used extensively in male potency products in the future. However, as I’ve reported before, yohimbe/yohimbine does not appear to increase testosterone production as some marketers contend. There is, however, the ongoing concern that products containing yohimbe bark extract may or may not contain viable doses of the yohimbine HCL chemical. Always make sure to check the label of any products you purchase containing this ingredient to ascertain the actual amount to true yohimbine HCL. The safest way to assure that you have a quality product is to call the company and request a certificate of analysis, which they should be able to supply. DOSAGE: The common dosage of yohimbine HCL used in the medical field is one 5.4-mg tablet 3 times/day. I suggest looking for products which mimic this intake, but don’t take the "more-is-better" attitude when using this product. Studies have shown that increased dosages may be less effective than the doses mentioned here.

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There are hundreds of places on the net selling Yohimbe. Since it’s an herb, I don’t know if you could even get it with a prescription. At least it’s not in my PDR. Barbara

It may be under the brand name Yocon Barb. As far as I know the only way to get "pure" Yohimbine is with a prescription. Brenda

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As far as I know, pure Yohimbine is prescription only. It’s relatively cheap too. There are hundreds of places on the net selling Yohimbe. Since it’s an herb, I don’t know if you could even get it with a prescription. At least it’s not in my PDR. Barbara

Just an anal note: Yohimbe is an herb, yohimbine is the active chemical in the herb. J — Men are from Mars. Women are from Venus. Computers are from Hell. -Byte Magazine

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As far as I know, pure Yohimbine is prescription only. It’s relatively cheap too.

There are hundreds of places on the net selling Yohimbe. Since it’s an herb, I don’t know if you could even get it with a prescription. At least it’s not in my PDR. Barbara Barbara Hirsch, Publisher Obesity Meds and Research News OMR Web Site: http://www.obesity-news.com

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Yohimbe appears to be a worthwhile extract to look into for a lot of problems. Are you able to inform any contra-indications that may be involved with this herb.    In particular, does it affect the bodies metabolism or react with any other medication???   Thanks for your help   Vee

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Question:

Tonya     I think the most common dosages are 50mg and 100mg.  I’m on 100mg, my mother is on 50mg.  It helps… – Hide quoted text — Show quoted text – I have just been taken off of Effexor and Remeron and put on Zoloft. Could some of you tell me what a common dosage is?  I am curious. Thank you, Tonya

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My understanding is that it’s anywhere from 50 to 200 mg. – Hide quoted text — Show quoted text – Could some of you tell me what a common dosage is?  I am curious. Thank you, Tonya

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Dosage The administration should be initiated at 50 mg daily and increased gradually if needed, noting carefully the clinical response and any evidence of intolerance. It should be kept in mind that there may be a lag in therapeutic response. Increasing the dosage rapidly does not normally shorten this latent period and may increase the incidence of side effects. Initial Treatment: As no clear dose-response relationship has been demonstrated, a dose of 50 mg/day is recommended as the initial dose. A gradual increase in dosage may be considered if no clinical improvement is observed. Based on pharmacokinetic parameters, steady-state sertraline plasma levels are achieved after approximately 1 week of once daily dosing; accordingly, dose changes, if necessary, should be made at intervals of at least 1 week. Doses should not exceed a maximum of 200 mg/day. As with other antidepressants, the full antidepressant effect may be delayed until 4 weeks of treatment or longer. Sertraline should be administered with food once daily preferably with the evening meal, or, if administration in the morining is desired, with breakfast. As with many other medications, sertraline should be used with caution in patients with renal and/or hepatic impairment (see Precautions). Maintenance: When a satisfactory clinical response has been obtained, the dosage should be reduced (within the 50 to 200 mg range) to the minimum that will maintain relief of symptoms. source http://www.mentalhealth.com/fr30.html – Hide quoted text — Show quoted text – I have just been taken off of Effexor and Remeron and put on Zoloft. Could some of you tell me what a common dosage is?  I am curious. Thank you, Tonya I don’t know what the PDR says, but I think anywhere from 25 to 100 mg per day is pretty average.  Anything more or less might be less than average, but not necessarily totally wacko.  I have heard of people doing 200 mg per day. Sincerely Stewart — The Metaphor Man  *and*  The Great Defender of the Self

Response:

I have just been taken off of Effexor and Remeron and put on Zoloft. Could some of you tell me what a common dosage is?  I am curious. Thank you, Tonya

I don’t know what the PDR says, but I think anywhere from 25 to 100 mg per day is pretty average.  Anything more or less might be less than average, but not necessarily totally wacko.  I have heard of people doing 200 mg per day. Sincerely Stewart — The Metaphor Man  *and*  The Great Defender of the Self

Response:

I have just been taken off of Effexor and Remeron and put on Zoloft. Could some of you tell me what a common dosage is?  I am curious. Thank you, Tonya

Response:

Question:

who the fuck wants U40?

Me! U100 isn’t granular enough for me to get the best dosage and I don’t want to mess around with syringes and dilution kits. I want a U40 pen! Even better, U25. The most H that I shoot in one dose is 10-12 witth 6-8 being the more common dosage. For NPH, it’s 7 when I wake up and 5 at night before bed, and this is even more critical. 7/5 is slightly too low; I get "bg creep" in the day and dawn phenomenon in the morning, but with 8/6 dosages I’m chasing lows all of the time. If I could better tune my basil dosages, I’d get better overall control. As it is, my last HbA1c was 6.5 but that’s with a lot of effort to compensate and adjust around "this is too much and this is not enough" dosages for both H and NPH. Lastly, please don’t say "pump". That’s a different solution. I want a better pen solution. -B

Response:

O without getting into other shit (like beef, pork, other), have you got any sense of who the heck did in U40 heres

I suspect the FDA  effectively did it as a safety issue.  I suspect it was a side effect of the standards for insulin  syringes. (A medical device called an Insulin Syringe has a very specific FDA definition, and U40 is a problem within that definition).

Response:

Hi Bill, you asked about U40 insulins some time ago. This is, what the folks in the german NG came up with. I am not sure, whether these insulins are sold everywhere under the same name. Regulars: Lilly                   Humainsulin normal Berlin-Chemie           Insulin SNC(U40) Berlin-Chemie           Insulin S(U40) Novo                    Velasulin Human (U40) Novo                    Actrapid HM U40 Suspended insulins: Berlin-Chemie           L-Insulin SNC(U40) Berlin-Chemie           B-Insulin S(U40) Berlin-chemie           B-Insulin SC(U40) Novo                    Insulatard Human (U40) Novo                    Monotard HM(U40) Novo                    Ultratard HM (U40) Novo                    Novo (Semi)Lente (U40) But what already said was confirmed again. The companies seem to take U40s slowly but surely off the market. The say, there is no market for those anymore. One reason for this could be, that pens are becoming more and more popular. And most people want to use U100, so they don’t have to change cartridges too often. When using syringes, this doesn’t really matter, but people tend to become lazy, when the respective methods are offered. I asked a friend of mine, who is working as representative for Lilly in the diabetes-products-section, about all this, but she didn’t answer me yet. best wishes andy r.

Response:

Hi Bill, you asked about U40 insulins some time ago. This is, what the folks in the german NG came up with. I am not sure, whether these insulins are sold everywhere under the same name. Regulars: Lilly                      Humainsulin normal Berlin-Chemie              Insulin SNC(U40)

Berlin-Chemie              Insulin S(U40)

Novo                       Velasulin Human (U40) Novo                       Actrapid HM U40

andy, thanks for helping with info on U40 from Germany.  :)  !! 1. who is "Berlin-Chemie" and do they have a web site    (with English!) ?????    and what is "SNC" and "S" ???? two other things/comments: 2. VERY interesting that Novo offers Velosulin in U40    i assume this is their current rDNA Velosulin-BR???    ("BR" = Buffered Regular which can be used either       in pumps or taken via separate syringe shots.) 3. as you noted several months ago, Lilly doesn’t offer    Humalog in U40. Suspended insulins: Berlin-Chemie              L-Insulin SNC(U40) Berlin-Chemie              B-Insulin S(U40) Berlin-chemie              B-Insulin SC(U40) Novo                       Insulatard Human (U40) Novo                       Monotard HM(U40) Novo                       Ultratard HM (U40) Novo                       Novo (Semi)Lente (U40)

of the above suspended (i.e. time release) insulins, the Novo is likely all "human" but it’s interesting to see that Novo offers SemiLente (SL)!!    i thought that SL was only still in Switzerland.   since it’s likely "human" SL, i’ve got no interest. could you find out some specifics on what the above 3 Berlin-chemie U40 insulins are??? and are they all "human" or what? But what already said was confirmed again. The companies seem to take U40s slowly but surely off the market. The say, there is no market for those anymore.

nah.  there’s a market, but it’s a *SMALL* market. and BIG companies like Novo/Lilly/Aventis are allergic to small. who is in the U40 market? young t1 kids.   but there’s not that many of them. and as they grow up they need more insulin. but there’s also interest from insulin sensitive MDI diabetics. e.g. wombn. will she import U40??? like most, it’s highly doubtful. it’s more money and more hassle. and now that she knows she can get dilution kits for free, i’m sure she’ll give that a try. for that matter, so will i. One reason for this could be, that pens are becoming more and more popular. And most people want to use U100, so they don’t have to change cartridges too often. When using syringes, this doesn’t really matter, but people tend to become lazy, when the respective methods are offered. I asked a friend of mine, who is working as representative for Lilly in the diabetes-products-section, about all this, but she didn’t answer me yet. best wishes     andy r.

if she’s got a brain, you’ll at best get a very carefully worded answer, if any answer at all. iow, from what i’ve seen, people in the biz tend to keep as low a public profile as possible. fwiw, my own view is that there really *is* enough of a market for U40 to survive.   only time will tell. thanks again for your help and any further inputs will also be very appreciated. bill, t1 since ‘57 Before you buy.

Response:

O – Hide quoted text — Show quoted text – But what already said was confirmed again. The companies seem to take U40s slowly but surely off the market. The say, there is no market for those anymore. nah.  there’s a market, but it’s a *SMALL* market. and BIG companies like Novo/Lilly/Aventis are allergic to small. who is in the U40 market? fwiw, my own view is that there really *is* enough of a market for U40 to survive.   only time will tell. thanks again for your help and any further inputs will also be very appreciated.

U40’s are being sold in Europe and India. Market in India may go south, but the European U40 market will continue to exist for as long as European Governments are actively involved in Health Care and paying for it, and I suspect that is gong to be a VERY LONG TIME.

Response:

herr rodemann scribe: But what already said was confirmed again. The companies seem to take U40s slowly but surely off the market. The say, there is no market for those anymore. nah.  there’s a market, but it’s a *SMALL* market. and BIG companies like Novo/Lilly/Aventis are allergic to small. who is in the U40 market?

matt, jeez this is where yew snipped the best part. who the fuck wants U40? iow, is there really a real market??? fwiw, i believe that there is. doc alteripse (a pediatic endo who posted here a year ago) also hopes that a lower dose insulin would be sold commercially.   if i remember correctly, his vote would go for U20. fwiw, my own view is that there really *is* enough of a market for U40 to survive.   only time will tell. thanks again for your help and any further inputs will also be very appreciated. U40’s are being sold in Europe and India. Market in India may go south, but the European U40 market will continue to exist for as long as European Governments are actively involved in Health Care and paying for it, and I suspect that is gong to be a VERY LONG TIME.

matt, politics is clearly part of the bloody U40/100 equation. no two ways about it. without getting into other shit (like beef, pork, other), have you got any sense of who the heck did in U40 here i’d REALLY appreciate an answer to this. i mean was it our wondiferous FDA????   or who??? bill t1 since ‘57, ex 8-yr pumper, beef-L 1x, simple MDI Before you buy.

Response:

Hi Bill, willbill schrieb: 1. who is "Berlin-Chemie" and do they have a web site    (with English!) ?????

Berlin-Chemie is part of the Menarini-Group. Didn’t find much information on their site, but then again I didn’t look into it too deep. http://www.menarini.com/english/company/welcome.html    and what is "SNC" and "S" ????

No idea, as of today. Could be just the names of their insulin. Maybe I’ll ask. two other things/comments: 2. VERY interesting that Novo offers Velosulin in U40    i assume this is their current rDNA Velosulin-BR???    ("BR" = Buffered Regular which can be used either       in pumps or taken via separate syringe shots.)

can’t confirm that either. of the above suspended (i.e. time release) insulins, the Novo is likely all "human" but it’s interesting to see that Novo offers SemiLente (SL)!!    i thought that SL was only still in Switzerland.   since it’s likely "human" SL, i’ve got no interest.

Well, they still use semilente here quite often, but only for dawn-phenomeners. Otherwise we prefer N as background. could you find out some specifics on what the above 3 Berlin-chemie U40 insulins are??? and are they all "human" or what?

I’ll ask. will she import U40??? like most, it’s highly doubtful. it’s more money and more hassle.

and I don’t know, if it’s possible to import from Germany. Insulin is a drug that is only available from pharmacies and only on a prescription. But maybe the manufacturers can help, I don’t know. and now that she knows she can get dilution kits for free, i’m sure she’ll give that a try.

dilution will be the easiest way. I asked a friend of mine, who is working as representative for Lilly in the diabetes-products-section, about all this, but she didn’t answer me yet. if she’s got a brain, you’ll at best get a very carefully worded answer, if any answer at all.

we are friends and she owes me something, even if it’s classified information. best wishes andy r.

Response:

Question:

I have been taking 380Mg of Feverfew daily to ward off migraines, which has been working very well. I have developed a painful facial rash on one cheek and have no idea what caused it. Could it be a reaction to Feverfew ? I also take 120Mg of Ginkgo Biloba daily, could the two be interacting ? Before you buy.

Response:

you should post this on alt.folklore.herbs. my guess is that it very well could be the feverfew causing the reaction. here is some info for you to further research: "The bitter-tasting herb should be taken with food. Because its main side effect is that it inhibits platelet coagulation, feverfew should not be taken with drugs that do the same. It also should not be taken simultaneously with a serotonin antagonist. Other side effects may include mouth ulcers or sores and contact dermatitis; feverfew may induce cross-sensitivity with other members of the daisy family (Asteraceae).7 It also should not be used by women who are pregnant or breastfeeding. Symptoms of withdrawal from feverfew can include nervousness, tension, insomnia, and joint stiffness. Therefore, users should gradually decrease their dosage over the course of a week rather than stop suddenly." "It is controversial whether or not it has an effect on thromboxane, but it warrants caution in patients taking anticoagulants, since it has been shown to affect platelet aggregation. Feverfew also is a potent inhibitor of serotonin release, which may explain its role in treating headaches." more info at: http://www.amfoundation.org/herbs/Tanacetum.htm http://www.herbalgram.org/catalog/thirdparty/feverfew.html there are several other herbs you can research for headache relief: meadowsweet, willow bark, skullcap, wood betony….. i would suppose that you have already seen a physician? if not, that would of course be the thing to do for recurring headaches. I have been taking 380Mg of Feverfew daily to ward off migraines, which has been working very well. I have developed a painful facial rash on one cheek and have no idea what caused it. Could it be a reaction to Feverfew ? I also take 120Mg of Ginkgo Biloba daily, could the two be interacting ? Before you buy.

– "Christina Aguilera should take a good look at Tammy Faye [Bakker] because this is what she’s going to look like in 20 years."-RuPaul http://www.primenet.com/~lippard/stupid-skeptic-tricks.txt

Response:

I have been taking 380Mg of Feverfew daily to ward off migraines, which has been working very well.

btw, 380 mg is apparently a fairly high dosage for prophylactic use…..i think the common dosage is more like 125mg (dried). you may want to look into that further as well…… (ingesting a fresh leaf a day–without chewing–is what many herbalists suggest—–if you can grow your own plant) one other good source of info on botanicals is: http://www.ars-grin.gov/duke/ — "Christina Aguilera should take a good look at Tammy Faye [Bakker] because this is what she’s going to look like in 20 years."-RuPaul http://www.primenet.com/~lippard/stupid-skeptic-tricks.txt

Response:

Question:

Thanks for your reply.  I am more concerned about the possibility of contamination than the potency after storage.  I keep my PGE for several months, and my urologist puts a disposal date on the jar.  I assume you are following the interesting Dr. Wyllie thread with me on this subject.  I learn more every time I read postings here. – Hide quoted text — Show quoted text – I’ve accidentally buried a mixed vial in the refrigerator for over two months and later used it with no noted difference.  I wouldn’t use it if showed cloudiness, discoloration or sedimentation, though. I am told that compounding pharmacists mix it in 100cc bottles and advise that it can be kept under refrigeration for up to a year, but I’d want some competent confirmation of this. I have been on PGE injections, and was just given an RX for Caverject to take with me while I travel for 4 months this summer, since it does not need constant refrigeration.  I am on 0.3 ml and the caverjet reconstitutes to 1.0 ml.  Seems a shame to waste the leftover after one use, and I wonder if it can be refrigerated in the liquid form and reused for a second injection. My doc gave me a supply of thin needle to use in place of the larger Caverject needles. Has anyone tried this, and can it be done?  Or must it be discarded as the instructions say.  I can keep PGE as long as it is refrigerated. It’s expensive stuff to waste and throw away if it can be used.  I would use new needles and alcahol swabs. Any advice is appreciated. Also, Doc Casey, any thoughts? Shelly in Ft. Lauderdale

Response:

Dr. Wylie’s advice is irrefutable from the standpoint of medical prudence. From the standpoint of practicality, though, I haven’t seen any indication that the medium is subject to contamination, given refrigeration, use of single-use sealed syringes, liberal use of alcohol swabs on the vial stopper, etc.  Also, the Caverject diluent contains 0.5% alcohol. I think the determining factor is your confidence in your procedures for assuring continued sterility.

Thanks for your reply. I am more concerned about the possibility of contamination than the potency after storage.  I keep my PGE for several months, and my urologist puts a disposal date on the jar.  I assume you are following the interesting Dr. Wyllie thread with me on this subject.  I learn more every time I read postings here.

<snip for brevity

Response:

When I used injections (Viagra works great!) I always stored the bottle in a pill bottle to further reduce the chance of anything touching the stopper. I used single use sealed needles, plenty of alcohol on the stopper and if anything went wrong, ie dropped uncapped needle, forgot to wipe off the stopper or anything else I thought might comprimise sterility the needle and the dose of Caverject went into the trash. When I was a paramedic part of my training was sterile technique. We started IV’s and administered drugs mostly during AMI incidents or by order over the radio. During training we were shown pictures and taken on rounds to see patients that had raging bacterial infections. Most people have no idea what these little vermin can do to a person both inside and outside. Don’t take any chances! If you think it’s "dirty" it is! Ed – Hide quoted text — Show quoted text – Dr. Wylie’s advice is irrefutable from the standpoint of medical prudence. From the standpoint of practicality, though, I haven’t seen any indication that the medium is subject to contamination, given refrigeration, use of single-use sealed syringes, liberal use of alcohol swabs on the vial stopper, etc.  Also, the Caverject diluent contains 0.5% alcohol. I think the determining factor is your confidence in your procedures for assuring continued sterility. Thanks for your reply. I am more concerned about the possibility of contamination than the potency after storage.  I keep my PGE for several months, and my urologist puts a disposal date on the jar.  I assume you are following the interesting Dr. Wyllie thread with me on this subject.  I learn more every time I read postings here. <snip for brevity

Response:

Sorry. The point I was trying to make is that every time you make a manipulation you could introduce a micro-organism. If you did it at time of first reconstitution it wouldn’t be unsafe as there would be few micro-organisms present (assuming you tend to inject within a few hours of reconstitution). However, if you then kept your solution for days (particularly if unrefrigwerated) the micro-organisms could multiply exponentially in that solution….if that was the case there could be problems at the time of your next injection. Dr Mike Wyllie – Hide quoted text — Show quoted text – Dr. Wyllie, thanks. But I am confused.  If I reconstitute as directed, with sterile equipment. Then use a NEW sterile needle for the injection and immediately refrigerate the solution.  Then 5 days later, use it again with a NEW sterile needle and new sterile swab, right from the rfrigerator, where would the micro-organism come from.  And, if I introduce it during reconstitution, isn’t it there and unsafe during the first injection? With my Prostaglandin, I use the soluteion for 10-12 shots with refrigeration, per my urodoc’s instructions.  I thought caverject and PGE were the same. There is always a possibility that during the reconstitution process you could introduce a micro-organism. Therfore even assuming the solution is sterile at the time of first injection, it may not be on storage. Personally I wouldn’t want to run the risk of injecting a lot of bacteria or fungii into myself. Dr Mike Wyllie Has anyone tried this, and can it be done?  Or must it be discarded as the instructions say.  I can keep PGE as long as it is refrigerated. Shelly in Ft. Lauderdale ==—– newsreading

Response:

Yes, that’s what I thought you meant and understand your point.  But I understand the risk is minimal if I reconstitute and use the first shot immediately and refrigerate immediately. Wouldn’t the same possibility of introduction of micro-organisms hold true for my PGE which is furnished in liquid form and used 10-12 times over period of several months if refrigerated.  Seems to me, that the same possibility exists. As a side note, my Urodoc insists that I refrigerate the PGE within 10 minutes of use.  This may be the reason. – Hide quoted text — Show quoted text – Sorry. The point I was trying to make is that every time you make a manipulation you could introduce a micro-organism. If you did it at time of first reconstitution it wouldn’t be unsafe as there would be few micro-organisms present (assuming you tend to inject within a few hours of reconstitution). However, if you then kept your solution for days (particularly if unrefrigwerated) the micro-organisms could multiply exponentially in that solution….if that was the case there could be problems at the time of your next injection. Dr Mike Wyllie Dr. Wyllie, thanks. But I am confused.  If I reconstitute as directed, with sterile equipment. Then use a NEW sterile needle for the injection and immediately refrigerate the solution.  Then 5 days later, use it again with a NEW sterile needle and new sterile swab, right from the rfrigerator, where would the micro-organism come from.  And, if I introduce it during reconstitution, isn’t it there and unsafe during the first injection? With my Prostaglandin, I use the soluteion for 10-12 shots with refrigeration, per my urodoc’s instructions.  I thought caverject and PGE were the same.

Response:

Dr. Wyllie, thanks. But I am confused.  If I reconstitute as directed, with sterile equipment. Then use a NEW sterile needle for the injection and immediately refrigerate the solution.  Then 5 days later, use it again with a NEW sterile needle and new sterile swab, right from the rfrigerator, where would the micro-organism come from.  And, if I introduce it during reconstitution, isn’t it there and unsafe during the first injection? With my Prostaglandin, I use the soluteion for 10-12 shots with refrigeration, per my urodoc’s instructions.  I thought caverject and PGE were the same. – Hide quoted text — Show quoted text – There is always a possibility that during the reconstitution process you could introduce a micro-organism. Therfore even assuming the solution is sterile at the time of first injection, it may not be on storage. Personally I wouldn’t want to run the risk of injecting a lot of bacteria or fungii into myself. Dr Mike Wyllie Has anyone tried this, and can it be done?  Or must it be discarded as the instructions say.  I can keep PGE as long as it is refrigerated. Shelly in Ft. Lauderdale

Response:

I’ve accidentally buried a mixed vial in the refrigerator for over two months and later used it with no noted difference.  I wouldn’t use it if showed cloudiness, discoloration or sedimentation, though. I am told that compounding pharmacists mix it in 100cc bottles and advise that it can be kept under refrigeration for up to a year, but I’d want some competent confirmation of this.

– Hide quoted text — Show quoted text -I have been on PGE injections, and was just given an RX for Caverject to take with me while I travel for 4 months this summer, since it does not need constant refrigeration.  I am on 0.3 ml and the caverjet reconstitutes to 1.0 ml.  Seems a shame to waste the leftover after one use, and I wonder if it can be refrigerated in the liquid form and reused for a second injection. My doc gave me a supply of thin needle to use in place of the larger Caverject needles. Has anyone tried this, and can it be done?  Or must it be discarded as the instructions say.  I can keep PGE as long as it is refrigerated. It’s expensive stuff to waste and throw away if it can be used.  I would use new needles and alcahol swabs. Any advice is appreciated. Also, Doc Casey, any thoughts? Shelly in Ft. Lauderdale

Response:

I have been on PGE injections, and was just given an RX for Caverject to take with me while I travel for 4 months this summer, since it does not need constant refrigeration.  I am on 0.3 ml and the caverjet reconstitutes to 1.0 ml.  Seems a shame to waste the leftover after one use, and I wonder if it can be refrigerated in the liquid form and reused for a second injection.  My doc gave me a supply of thin needle to use in place of the larger Caverject needles. Has anyone tried this, and can it be done?  Or must it be discarded as the instructions say.  I can keep PGE as long as it is refrigerated. It’s expensive stuff to waste and throw away if it can be used.  I would use new needles and alcahol swabs.  Any advice is appreciated. Also, Doc Casey, any thoughts? Shelly in Ft. Lauderdale

Response:

There is always a possibility that during the reconstitution process you could introduce a micro-organism. Therfore even assuming the solution is sterile at the time of first injection, it may not be on storage. Personally I wouldn’t want to run the risk of injecting a lot of bacteria or fungii into myself. Dr Mike Wyllie – Hide quoted text — Show quoted text – Has anyone tried this, and can it be done?  Or must it be discarded as the instructions say.  I can keep PGE as long as it is refrigerated. Shelly in Ft. Lauderdale

Response:

DP asks: The doctor just gave me a Rx for Caverject… I will be able to get it Monday… I have a few questions first…

(snip) What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use?

Your first dose should really REALLY be in the doctor’s office. With that said, Caverject comes in different strengths, and you did not say what strength the doctor prescribed. Go to: http://www.caverject.com/ Read the prescribing information.   Ignatz’s Bricks.

Response:

No… he did not have any caverject at his office…. I told him about it  and he looked it up…. he did not want to prescribe it at first… he set  me up with a uro after the 1st of the year… I talked him into the  caverject after I told him I had been researching it on the news group and  WWW….. I told him that if it stayed hard for more than 2 hrs I would take  120mg  Sudafed  ……. and if it lasted 4 hours I would go to the E.R……  He did agree    to let me try it…. so here I am  D

Response:

How long does it take to work?

It’s quick. In under a minute you’ll begin to see swelling. I am single and don’t want to tell someone right away that I inject for ED…. would I have time to excuse myself to go to the restroom, inject and go get romantic or does it get hard as soon as you inject…

Wear jockey shorts and loose shirt. You should be able to conceal it. When you find your proper amount to inject, you’ll have better control. You’ll get about half hard and it will conceal okay. When stimulated you’ll get full hard in 10-seconds. Coming down is very slow or not at all, depend on the shot. Then, after climax it should drop to about half erect. —- This is all a generality, but close. Do you inject both sides of the penis?

No. The crossover effect is 100% complete. Can you still feel everything or is your dick numb?

No difference in feelings. What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use?

I’m not overruling your doctor (although he doesn’t seem up to speed), but Initial injection should be less the first time, just in case you very receptive to it. But it’s usually very forgiving. It it’s too little, you may have just as good an erection, but it might only last 20-min. Time and repeated use will make you a pro. This is kinda spooky… at first..

Only the first time. Then you’ll like it.

Response:

Gads, didn’t you ask your doc any of these questions?  Didn’t he demonstrate for you? – Hide quoted text — Show quoted text – The doctor just gave me a Rx for Caverject… I will be able to get it Monday… I have a few questions first… How long does it take to work?     I am single and don’t want to tell someone right away     that I inject for ED…. would I have time to excuse     myself to go to the restroom, inject and go get romantic     or does it get hard as soon as you inject… Do you inject both sides of the penis? Can you still feel everything or is your dick numb? What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use? This is kinda spooky… at first.. D

Response:

The doctor just gave me a Rx for Caverject… I will be able to get it Monday… I have a few questions first…

I think you saw my post earlier this week where I said I ordered the Caverject from Argentina, did you see my follow up on 12/17 where I related my first try experience.  I certainly am no experienced expert like some of these guys in this group but I can give you the newbie perspective since you are about in the same situation as me. How long does it take to work?    I am single and don’t want to tell someone right away    that I inject for ED…. would I have time to excuse    myself to go to the restroom, inject and go get romantic    or does it get hard as soon as you inject…

Once I got a proper dosage it took about 5 minutes to kick in.  You could excuse yourself to the restroom but you will have to be a little discrete after about 5 minutes . Last night I went to Tijuana for a $20 hooker to do some more "testing".  I’m not stupid enough to wander around in Mexico with a syringe full of unidentified liquid in my pocket so I had to inject in my car in a parking lot in San Ysidro before walking across the border into Mexico.  I managed to do it somewhat discreetly.  Just wear loose clothes and tuck it in the waist band of your underwear .  If the girl notices anything just tell her she is very beautiful and she is really turning you on and making you excited. Do you inject both sides of the penis?

No, but on the first try only, if you don’t receive a response you can inject more within the first hour.  I did this and chose to inject in the opposite side to rotate the injection sites.  In your case this would be done in the doctors office.  After the first time and when your dosage is determined it is only one injection at a time. Can you still feel everything or is your dick numb?

Sensitivity was excellent, maybe even better due to it being so hard. But I did experience some mild to moderate "aching".  Certainly not enough to put me off the stuff or ruin my fun but irritating none the less. What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use?

2.5mcg is the standard dosage for the first injection.  This will be done in the Doctors office.  Most people will not respond to that but you start their to be safe.  I had little response to 2.5mcg.  If you don’t respond to that you can inject another 5 mcg within an hour for 7.5mcg total.  I had a major response to that.  Last night I tried 5 mcg thinking I had overshot with 7.5 mcg and had only a partial response.  I think I will try 6.6 mcg next (1/3 of a 20 mcg vial). The literature says the most common dosage is between 15 mcg and 20 mcg.  Your doctor will work you up to the proper dosage. This is kinda spooky… at first..

From a newbie perspective I can say it was really no big deal.  I skipped the doctor but I hesitated for about 2 minutes before my first injection building up my nerve.  Then I did it and it was nothing. Not even a pinprick. One piece of advice though is get some 30 gauge insulin syringes instead of the one supplied with the Caverject.  That makes it a lot easier.

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I will be meeting with the doctor after the Rx is in… he is not a uro but has scheduled me to see one… he did not have caverject at the office to do the test run (very small town) but he will as soon as it comes in… the uro can’t see me until after 15th of Jan… D

– Hide quoted text — Show quoted text – I question a Doctor who would give you caverject and not take the time to have already answered these questions for you.  First, I would suggest you look for a new uro, who knows ED and will give you good treatment. I dont have any experience with caverject.  I have been using trimix for a year.  So I can only relate that to you. Trimix, for me, takes about 15 minutes for an erection.  Inject one time on one side. Dosage: I dont know, with trimix the Dr. starts with a test dose in his office. Trimix: all feeling is there– no numbness. If you have proper guidance etc, you will find that there is nothing to fear and it is not painful. Good luck. The doctor just gave me a Rx for Caverject… I will be able to get it Monday… I have a few questions first… How long does it take to work?     I am single and don’t want to tell someone right away     that I inject for ED…. would I have time to excuse     myself to go to the restroom, inject and go get romantic     or does it get hard as soon as you inject… Do you inject both sides of the penis? Can you still feel everything or is your dick numb? What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use? This is kinda spooky… at first.. D

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The doctor just gave me a Rx for Caverject… I will be able to get it Monday… I have a few questions first… How long does it take to work?     I am single and don’t want to tell someone right away     that I inject for ED…. would I have time to excuse     myself to go to the restroom, inject and go get romantic     or does it get hard as soon as you inject… Do you inject both sides of the penis? Can you still feel everything or is your dick numb? What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use? This is kinda spooky… at first.. D

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I question a Doctor who would give you caverject and not take the time to have already answered these questions for you.  First, I would suggest you look for a new uro, who knows ED and will give you good treatment. I dont have any experience with caverject.  I have been using trimix for a year.  So I can only relate that to you. Trimix, for me, takes about 15 minutes for an erection.  Inject one time on one side. Dosage: I dont know, with trimix the Dr. starts with a test dose in his office. Trimix: all feeling is there– no numbness. If you have proper guidance etc, you will find that there is nothing to fear and it is not painful. Good luck.

– Hide quoted text — Show quoted text – The doctor just gave me a Rx for Caverject… I will be able to get it Monday… I have a few questions first… How long does it take to work?     I am single and don’t want to tell someone right away     that I inject for ED…. would I have time to excuse     myself to go to the restroom, inject and go get romantic     or does it get hard as soon as you inject… Do you inject both sides of the penis? Can you still feel everything or is your dick numb? What dosage should I start with… my Doc said .25 mcg or cc or something like that… but does everyone else use? This is kinda spooky… at first.. D

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Are you trying on EMPTY stomach (at least 4hrs since last meal)?

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Responding to Viagra Dosage question by Lewis, Has anyone who has had a RP had good response from Viagra.  Would also like to here from some who have not.

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Responding to Viagra Dosage question by Lewis, Has anyone who has had a RP

had good response from Viagra.  Would also like to here from some who have not. << I had a PR almost 2 years ago and can get a usable erection with 100mg Viagra.  As I have venous leakage I must use a constriction ring with Viagra or trimix injections     Good luck, Julian

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Responding to Viagra Dosage question by Lewis,

I had RP 5 years ago   Without Ring – no Go; With Ring – almost there Back to shots and ring – not perfect but it works Gus

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Viagara seems to work better if a regular exercise or walk regimes are practiced. – Hide quoted text — Show quoted text – Had RP just over three years ago. Tried Viagra for the first time last week 50mg very little reaction greg

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Its a matter of personal experience. You may benefit by only 50mg. The other may not do by 100mg.

– Hide quoted text — Show quoted text -Responding to Viagra Dosage question by Lewis, Has anyone who has had a RP had good response from Viagra.  Would also like to here from some who have not.

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Had RP just over three years ago. Tried Viagra for the first time last week 50mg very little reaction Last night tried 100mg improvment on 50mg but not quite good enough for the job. Has anyone tried a higher dosage than 100mg? thanks greg

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Tried Viagra for the first time last week 50mg very little reaction Last night tried 100mg improvment on 50mg but not quite good enough for the job.

[edit] Sounds like my expereince with Viagra. I have MS, and last year’s exacerbations took a toll on my erectile functionality. Got some 50mg Viagra, took 100mg (2 of ‘em), with some OK results, but hardly (no pun) spectacular.  So I went to the urologist to investigate the needle! 8:20AM in the uro’s office, he injected 7 microg’s of prostaglandin (I believe). 15 minutes later, wow!! 19 again, no lie!!  He gave me two 5 microg syringes to take with me. I walked home, masturbated with a firmer erection I’ve had for a long time! Orgasm was great, and I stayed hard post-orgasm, so I dressed and went to work. The problem, it lasted *too damned long*!! 5 hours to be quasi-exact! I was starting to think "’nother visit" for an adrenaline shot or (ecch!) bleeding!!  But it finally went down, thank god! Wow, I never knew *not* having an erection could feel so good!! Can’t wait to share it with "her", though! — First Job of Government:  Protect people from government.|     www.i1.net/    | Second Job of Government: Protect people from each other.| ~akravetz/mwa.html | It must *never* become the job of government to protect people from themselves!

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I have no trouble achieving an erection….. the problem I have is sustaining arousal and an erection.  Upon intercourse, I can usually only last about a minute…. the second time around, my erection is very weak.  I decided to try Viagra to give me more staying power, or atleast make it easier for me to regain my erection.  I am 27 years old, 5′9" and 155lbs.  The dosage I tried was 50mg.  From what i’ve read this is a common dosage.  Is it possible I may need a higher dosage, given my size?  Is what I am attempting reasonable for Viagra to be successful? Thanks, Matt

Matt, It’s not clear to me whether you mean you lose your erection after about a minute, or you ejaculate after a minute.  If the latter, Viagra probably won’t help since it’s not designed to help premature ejaculation, although it may help to regain your erection quicker after ejaculation.  If the problem is losing your erection after penetration, then that’s one of the things Viagra does best. If premature ejaculation is your problem, you might want to try a cock ring especially made for the purpose.  Penimax makes one called the "Contrex Ejaculation Control Band" that’s supposed to help. You can read about it (and order it if you want) at: http://www.penimax.com/ I can’t vouch for it, since I haven’t tried it. As to the Viagra dosage, it varies with individuals and doesn’t seem to have a lot to do with body size and weight.  More important is your body’s condition when you take it.  Your stomach should be empty, and the more rested and less tense you are the better.  You may find you need a larger dose in the evening than you do first thing in the morning. Just use the minimum dosage that works for you under particular circumstances.  You can only find this out by trial and error. A larger dose than you need to sustain an erection just increases the side effects without helping your erection. There’s lots more information on Viagra and other impotence remedies in the alt.support.impotence FAQ’s.  You can read them at: http://www.chesco.com/~fps/index.html Good luck! -Fred-

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I have no trouble achieving an erection….. the problem I have is sustaining arousal and an erection.  Upon intercourse, I can usually only last about a minute…. the second time around, my erection is very weak.  I decided to try Viagra to give me more staying power, or atleast make it easier for me to regain my erection.  I am 27 years old, 5′9" and 155lbs.  The dosage I tried was 50mg.  From what i’ve read this is a common dosage.  Is it possible I may need a higher dosage, given my size?  Is what I am attempting reasonable for Viagra to be successful? Thanks, Matt

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I have started taking viagra after a radical prostectomy (both nerves spared).  The 100 mg. just gets me about 60% there.  Has anyone tried 150 mg or higher? Is there a problem with going over 100mg?  Thanks.

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I have started taking viagra after a radical prostectomy (both nerves spared).  The 100 mg. just gets me about 60% there.  Has anyone tried 150 mg or higher? Is there a problem with going over 100mg?  Thanks.

You should not take very large doses of Viagra. If you’re not getting there, I highly recommend that you switch to Prostaglandin E1 injection or some mixture. The injection is a tiny diabetic syringe, and many people here say it is utterly painless. C/

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I have started taking viagra after a radical prostectomy (both nerves spared).  The 100 mg. just gets me about 60% there.  Has anyone tried 150 mg or higher? Is there a problem with going over 100mg?  Thanks.

You don’t mention how long post-op you are.  Possible you just aren’t quite ready yet? Jim Share what you know. Learn what you don’t.

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