Question:

Yes to the baby aspirin……I have anticardiolipids in my blood and the first thing the specialists did was put me on 1 baby aspirin a day even though I bruise easily.  Now with a heart doc they recommend 2 baby asa a day. I am also on estrogen patch and there is a risk but with estrogen it is necessary to help prevent bone loss also….. Hope it helps..Janers

Response:

Thanks, I thought the baby aspirin made sense. I have to take estrogen for my osteoporosis (allergic to Fosamax- getting allergic to most everything anymore).  It seems that the elevated anticardiolipin and estrogen replacement is not a good combination.   You ladies are great and I truly  appreciate the "teaching" and support. Thank You!

Response:

Megan~~Hi! It’s Kim.  What or how did you know you were allergic to Fosomax?  My rheumatologist, my appt. is Tuesday, is talking about putting me on this.  I use the estrogen patch, but with being on prednisone so long now, I am worried about osteoporosis, too.  It’s so confusing with all the over the counter stuff, and the adds on TV.  Thanks for helping—-Kim * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

Hi, Kim.  Let me precede my experience with the comment that I was TOLD that an allergic reaction to Fosamax is extremely rare.  Also, my wonderful pharmacist said I should report any allergic reaction as Fosamax is still in the early stages of use.  I’ve got enough problems without reporting something like that and then being contacted by a major pharmaceutical company – no thanks!  Coward, yes I am<grin

Anyway, the first week of taking Fosamax I started feeling not quite right and getting worse each day – noticed the getting worse happened about 2 hrs. after taking the Fosamax (later learned 2 hrs. is the prime absorption time for Fosamax).  So, I called and talked to the nurse at my docs office.  She said try stopping the Fosamax for a week.  I did and slowly felt better.  Then, she said start taking it again.  Oh, Boy, within a couple days itching, hives, throat closing up – the whole 9 yards!  Stopped Fosamax and gradually the symptoms went away.  My doc said I had "classic" drug allergic reaction. You might try posting to the osteoporosis ng.  There are some really knowledgeable people there who have had positive experiences.  Most everyone on that ng keeps a close eye on the meds for osteoporosis. After my bone density showed such severe osteoporosis, I did a LOT of research on treatment.  I now have mixed feelings.  The Neuro/Pain Specialist I’ve been talking about (very smart man affiliated with Oregon Health Sciences University Research Hospital) told me recently that Calcitonin (aka Miacalcin) thickens the bone but at the expense of good architecture.  So, might be a med to reconsider. It was agreed I should increase my Calcium (Calcium Citrate is supposed to be the best one to take as it is more readily absorbd) daily intake to 1500 mg. with 800 IUs of Vitamin D per day – VERY important especially for those of us who try to stay out of the sun. Hope this helps.  If you have any other questions, let me know.  Good Luck and please let me know what happens.

Response:

<<

(1)  With my elevated Anticardiolipin and recently started taking estrogen replacement (for the osteoporosis) does that put me at increased risk for strokes, etc.?  Would something like even a baby aspirin a day reduce the chance?

There are quite a few doctors yet who are unfamiliar with APLS and may not realize the risks of putting a woman with it on estrgen replacement therapy. When my daughter’s tests came back positive for both IgM and IgG, we were told she shouldn’t ever take estrogen or birth control pills due to the increased risk of clotting. Sandra

Response:

<<  My rheumatologist, my appt. is Tuesday, is talking about putting me on this [Fosamax].  I use the estrogen patch, but with being on prednisone so long now, I am worried about osteoporosis, too.  It’s so confusing with all the over the counter stuff, and the adds on TV.

Fosamax is one of many ways of treating or preventing osteopenia and osteoporosis.  The doctors at NIH in Bethesda, MD, say they commonly give it to patients on a once a week basis as it’s much easier for them to tolerate it that way.  Taken daily, it can sometimes be kind of hard on the stomach.   If Fosamax doesn’t work out, there are still a wide variety of options.  My daughter takes Miacalcin for her Prednisone induced osteopenia.  Fosamax was the first choice for her, but because of her very sensitive stomach, we went with the slightly less desireable (so far as the benefits go) Miacalcin.   BTW, for the person who has severe osteoporosis, you might be interested to know that John Hopkins in Baltimore, MD, has been doing extensive research on severe osteoporosis.  Right now they have a new treatment for preventing fractures in the spine.  They have a new substance they inject into the bones of the spine in order to strengthen it.  So far, according to what I’ve read of this procedure, the results have been very promising and they’ve had substantially fewer spinal fractures in their patients with severe osteoporisis.   Sandra

Response:

I am definitely overwhelmed in trying to put everything together I want to present to the new doctor.  Thus, I suspect, is the cause of my mind functioning at a lower capacity. I have a couple more questions: (1)  With my elevated Anticardiolipin and recently started taking estrogen replacement (for the osteoporosis) does that put me at increased risk for strokes, etc.?  Would something like even a baby aspirin a day reduce the chance? 2)  Regarding retinal vein occlusion (not diagnosed but I’m not getting what I’m reading in my searches) is that something that would normally be seen during an eye exam or is it something that is specifically tested for looked for in particular?  I have experienced with medical specialists that they only look for what I have been referred for and no further. Thank you everyone so much for your help and support.  This is a very stressful and scary time for me as I see the puzzle pieces coming together after all these years.  I don’t know why the doctors couldn’t see it and blamed everything on Fibromyalgia and just brushed off the blood tests as "insignificant." Thanks ever so much.

Response:

On Thu, 20 Jul 2000 11:19:52 -0700 (PDT), Mega…@webtv.net wrote:

I am definitely overwhelmed in trying to put everything together I want to present to the new doctor.  Thus, I suspect, is the cause of my mind functioning at a lower capacity. I have a couple more questions: (1)  With my elevated Anticardiolipin and recently started taking estrogen replacement (for the osteoporosis) does that put me at increased risk for strokes, etc.?  Would something like even a baby aspirin a day reduce the chance?

My understanding is "yes" to the second part of this question.  I don’t know about the first but a baby aspirin is commonly prescribed to control "sticky blood" of APLS.

Thank you everyone so much for your help and support.  This is a very stressful and scary time for me as I see the puzzle pieces coming together after all these years.  I don’t know why the doctors couldn’t see it and blamed everything on Fibromyalgia and just brushed off the blood tests as "insignificant."

Because they have little boxes with labels on them – one box says "lupus", another says "arthritis", another says "FMS" and so on.  The FMS box is bigger than the others – that is, they can lump more symptoms into that one box because they don’t have so many "restrictions" on what constitutes a diagnosis of FMS vs. lupus or other illnesses.  Finally, the biggest box of all is the "Just Stressed/Depressed" box.  It is huge and all the symptoms in the world can be tossed into that box from what I’ve seen. Do I sound cynical? I don’t have an answer for the second question at all… Best wishes KCat – Hide quoted text — Show quoted text -

Thanks ever so much.

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Question:

Go to www.anklejoint.com and you’ll get some information! and Welcome to our group Kate    Send in the clowns I will not drag you along; I will not leave you alone; I will stand by you and have my hand there for you to hold when you need it.

        That page has some excellent information.  If you also would like to see the "patient’s" perspective, see my web page.  Just go to the personal website listed below and click on the little foot icon. — Sharon Guthrie, Stanislaus County Emergency Dispatch email:  sguthrie at stan911 dot com business url:  http://www.stan911.com *  Check out my personal website, *  now with "The Guthrie Library" in association with Amazon.Com: *  http://www.jps.net/red bang head on keyboard to continue….

Response:

Excuse my ignorance, I’ve just joined the group.  My mother has osteoarthritis of the ankle and I’m interested to know why you’d have an ankle replacement?  The only operation we’d heard about involved fusing the bones.  I’d be very grateful if you could enlighten me a little.

– Hide quoted text — Show quoted text – Windy thanks for the update!! I’ve been wondering how it all went and the fact that the tar is more comfortable is comforting;-) Keep us posted- about the time you get your cast off I’ll be gettin mine on- any good books I should read? Hope this recovery just keeps gettin better and better for ya! Pss thanks for the tips- I’m gonna put em to good use. Kate    Send in the clowns I will not drag you along; I will not leave you alone; I will stand by you and have my hand there for you to hold when you need it.

Response:

Go to www.anklejoint.com and you’ll get some information! and Welcome to our group Kate    Send in the clowns I will not drag you along; I will not leave you alone; I will stand by you and have my hand there for you to hold when you need it.

Response:

.  How long do you have to keep any weight off your ankles? Nancy

I will have to be off my feet for about 6 weeks — only 5 more weeks to go! Windy

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Thanks for all the kind words, I’ll keep everybody posted.  There were some ideas that I didn’t think of.  I’ll keep them in mind for my next surgigal endeavor! Windy

Response:

I’m glad it all went well Windy! -g- Kitty

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Windy thanks for the update!! I’ve been wondering how it all went and the fact that the tar is more comfortable is comforting;-) Keep us posted- about the time you get your cast off I’ll be gettin mine on- any good books I should read? Hope this recovery just keeps gettin better and better for ya! Pss thanks for the tips- I’m gonna put em to good use. Kate    Send in the clowns I will not drag you along; I will not leave you alone; I will stand by you and have my hand there for you to hold when you need it.

Response:

Hi Windy,  I cant believe how well you take all this in stride.  I guess 13 is a lucky number.  Heres wishing you continued improvement. Harv – Hide quoted text — Show quoted text – Hi all, Well I survived my 13th surgery. I had my right ankle replaced  and my left ankle fused in certain spots to re-align it, all, last Monday. I didn’t have as good an anesthesioloist as I had previously, but it’s over, and I’m not complaining! I went in at 6:30 in the morning and was preped for the surgery. I received my twilight dose shortly after and was under general anes. I woke up in a lot of pain in both feet. I should have INSISTED on a block for both feet prior to the surgery — like I had on my preliminary surgery on the right ankle in May. I had the usual morphine drip which I slept with in hand. The pain was much more bearable the next day. Now, a week later, the ankle joint replacement is comfier than the left partially fused ankle. I feel like I could walk on it! I’m looking forward to getting these two "bricks" off my feet and into a regular cast. I do beleive this ankle rep. is going to really comfortable and I have read (via anklejoint.com) that it should last a good while. I do have a few pointers: Insist on a block before the surgery so you wake up pain free. Bring your presc meds in case the pharmacy doesn’t have your presc. on hand, this happened to me. Bring some wipes– the pain meds made me sweat and I wished I had some handy. Stay in the hospital as long as allowed– I lefgt too early last time –this time I stayed 5 days.  What a difference! Remember the 8 hour nurse shift changes at 7 am 3 pm and 11 pm.  Call for any pain med or water etc an hour before the change.  The nuses are doing paperwork before going home and you will have to wait for the next nurse which can take up to an hour after you make a call around shift change, not a good thing… I rented a motorized wheelchair which I have yet to use.  I get around just fine on my wheeled computer chair! Fits though all doors and into the bathroom. Adjust the height of the chair to the height of the toilet– makes sliding on and off a breeze since I can’t use my poor arms/hands. I joined on e of those book clubs and ordered the introductory 6 books for 12.95 after shipping/handling.  They were already delivered when I got home. I bought a new sponge at walgreen’s called Comfort sponge  (in soap isle) for rinsefree bathing. They come in a pack of eight at 3.99 pack. Well, I’ll let you know as I go! Just e-mail with any questions. Windy

Response:

Sounds like your doing great Windy! Keep us updated! Keep Smilin’ ~Krissy Akron, Ohio Visit my web pages at: http://arthritisnet.com http://arthritisnet.com/kids http://members.aol.com/KrissyJo/RA.html http://fadedjeans.com

Response:

- Hide quoted text — Show quoted text -I do have a few pointers: Insist on a block before the surgery so you wake up pain free. Bring your presc meds in case the pharmacy doesn’t have your presc. on hand, this happened to me. Bring some wipes– the pain meds made me sweat and I wished I had some handy. Stay in the hospital as long as allowed– I lefgt too early last time –this time I stayed 5 days.  What a difference! Remember the 8 hour nurse shift changes at 7 am 3 pm and 11 pm.  Call for any pain med or water etc an hour before the change.  The nuses are doing paperwork before going home and you will have to wait for the next nurse which can take up to an hour after you make a call around shift change, not a good thing… I rented a motorized wheelchair which I have yet to use.  I get around just fine on my wheeled computer chair! Fits though all doors and into the bathroom. Adjust the height of the chair to the height of the toilet– makes sliding on and off a breeze since I can’t use my poor arms/hands. I joined on e of those book clubs and ordered the introductory 6 books for 12.95 after shipping/handling.  They were already delivered when I got home. I bought a new sponge at walgreen’s called Comfort sponge  (in soap isle) for rinsefree bathing. They come in a pack of eight at 3.99 pack. Well, I’ll let you know as I go! Just e-mail with any questions. Windy

Ah, but you don’t mention chocolate.  It is essential to your recovery.  Glad things went well.  Let us know what happens when your bricks are taken off. Sarah L Nobody can make you feel inferior without your permission. -Eleanor Roosevelt-

Response:

– Hide quoted text — Show quoted text – Hi all, Well I survived my 13th surgery.   I had my right ankle replaced  and my left ankle fused in certain spots to re-align it, all, last Monday. I didn’t have as good an anesthesioloist as I had previously, but it’s over, and I’m not complaining! I went in at 6:30 in the morning and was preped for the surgery. I received my twilight dose shortly after and was under general anes. I woke up in a lot of pain in both feet. I should have INSISTED on a block for both feet prior to the surgery — like I had on my preliminary surgery on the right ankle in May.   I had the usual morphine drip which I slept with in hand. The pain was much more bearable the next day. Now, a week later, the ankle joint replacement is comfier than the left partially fused ankle. I feel like I could walk on it! I’m looking forward to getting these two "bricks" off my feet and into a regular cast. I do beleive this ankle rep. is going to really comfortable and I have read (via anklejoint.com) that it should last a good while. I do have a few pointers: Insist on a block before the surgery so you wake up pain free. Bring your presc meds in case the pharmacy doesn’t have your presc. on hand, this happened to me. Bring some wipes– the pain meds made me sweat and I wished I had some handy. Stay in the hospital as long as allowed– I lefgt too early last time –this time I stayed 5 days.  What a difference! Remember the 8 hour nurse shift changes at 7 am 3 pm and 11 pm.  Call for any pain med or water etc an hour before the change.  The nuses are doing paperwork before going home and you will have to wait for the next nurse which can take up to an hour after you make a call around shift change, not a good thing… I rented a motorized wheelchair which I have yet to use.  I get around just fine on my wheeled computer chair! Fits though all doors and into the bathroom. Adjust the height of the chair to the height of the toilet– makes sliding on and off a breeze since I can’t use my poor arms/hands. I joined on e of those book clubs and ordered the introductory 6 books for 12.95 after shipping/handling.  They were already delivered when I got home. I bought a new sponge at walgreen’s called Comfort sponge  (in soap isle) for rinsefree bathing. They come in a pack of eight at 3.99 pack. Well, I’ll let you know as I go! Just e-mail with any questions. Windy

Hey John!!!  You were calling ME a pro??!!  I got nothin’ on Windy here, whose got this down to an absolute science. <g Kidding aside Windy, I’m glad it’s over (well, sort of), and all went well.  Definitely sounds like you’re on the up-swing. — Di dabell at access1 dot net

Response:

Hi all, Well I survived my 13th surgery.   I had my right ankle replaced  and my left ankle fused in certain spots to re-align it, all, last Monday. I didn’t have as good an anesthesioloist as I had previously, but it’s over, and I’m not complaining! I went in at 6:30 in the morning and was preped for the surgery. I received my twilight dose shortly after and was under general anes. I woke up in a lot of pain in both feet. I should have INSISTED on a block for both feet prior to the surgery — like I had on my preliminary surgery on the right ankle in May.   I had the usual morphine drip which I slept with in hand. The pain was much more bearable the next day. Now, a week later, the ankle joint replacement is comfier than the left partially fused ankle. I feel like I could walk on it! I’m looking forward to getting these two "bricks" off my feet and into a regular cast. I do beleive this ankle rep. is going to really comfortable and I have read (via anklejoint.com) that it should last a good while. I do have a few pointers: Insist on a block before the surgery so you wake up pain free. Bring your presc meds in case the pharmacy doesn’t have your presc. on hand, this happened to me. Bring some wipes– the pain meds made me sweat and I wished I had some handy. Stay in the hospital as long as allowed– I lefgt too early last time –this time I stayed 5 days.  What a difference! Remember the 8 hour nurse shift changes at 7 am 3 pm and 11 pm.  Call for any pain med or water etc an hour before the change.  The nuses are doing paperwork before going home and you will have to wait for the next nurse which can take up to an hour after you make a call around shift change, not a good thing… I rented a motorized wheelchair which I have yet to use.  I get around just fine on my wheeled computer chair! Fits though all doors and into the bathroom. Adjust the height of the chair to the height of the toilet– makes sliding on and off a breeze since I can’t use my poor arms/hands. I joined on e of those book clubs and ordered the introductory 6 books for 12.95 after shipping/handling.  They were already delivered when I got home. I bought a new sponge at walgreen’s called Comfort sponge  (in soap isle) for rinsefree bathing. They come in a pack of eight at 3.99 pack. Well, I’ll let you know as I go! Just e-mail with any questions. Windy

Response:

windy,         sounds like youve got it under control. all i can do is wish you a speedy recovery and enjoy your reading time. johnie

Response:

Hi Windy, Thanks for the nice update.  How long do you have to keep any weight off your ankles? Nancy

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Hi Wendy, Thanks for the update…and hooray it is done and you can recovery and heal. I will be sending you positive healing thoughts…. Lori V

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Thank you for the report, and those were excellent suggestions about getting along in the hospital and at home.  The only one I would add would be to take your reacher to the hospital with you so that you can reach everything you need after one of the nurses pushes your bedside table 10 feet away and forgets to bring it back to you. Best wishes for a great recovery. Lynette Engebretson – Hide quoted text — Show quoted text – Hi all, Well I survived my 13th surgery. I had my right ankle replaced  and my left ankle fused in certain spots to re-align it, all, last Monday. I didn’t have as good an anesthesioloist as I had previously, but it’s over, and I’m not complaining! I went in at 6:30 in the morning and was preped for the surgery. I received my twilight dose shortly after and was under general anes. I woke up in a lot of pain in both feet. I should have INSISTED on a block for both feet prior to the surgery — like I had on my preliminary surgery on the right ankle in May. I had the usual morphine drip which I slept with in hand. The pain was much more bearable the next day. Now, a week later, the ankle joint replacement is comfier than the left partially fused ankle. I feel like I could walk on it! I’m looking forward to getting these two "bricks" off my feet and into a regular cast. I do beleive this ankle rep. is going to really comfortable and I have read (via anklejoint.com) that it should last a good while. I do have a few pointers: Insist on a block before the surgery so you wake up pain free. Bring your presc meds in case the pharmacy doesn’t have your presc. on hand, this happened to me. Bring some wipes– the pain meds made me sweat and I wished I had some handy. Stay in the hospital as long as allowed– I lefgt too early last time –this time I stayed 5 days.  What a difference! Remember the 8 hour nurse shift changes at 7 am 3 pm and 11 pm.  Call for any pain med or water etc an hour before the change.  The nuses are doing paperwork before going home and you will have to wait for the next nurse which can take up to an hour after you make a call around shift change, not a good thing… I rented a motorized wheelchair which I have yet to use.  I get around just fine on my wheeled computer chair! Fits though all doors and into the bathroom. Adjust the height of the chair to the height of the toilet– makes sliding on and off a breeze since I can’t use my poor arms/hands. I joined on e of those book clubs and ordered the introductory 6 books for 12.95 after shipping/handling.  They were already delivered when I got home. I bought a new sponge at walgreen’s called Comfort sponge  (in soap isle) for rinsefree bathing. They come in a pack of eight at 3.99 pack. Well, I’ll let you know as I go! Just e-mail with any questions. Windy

Response:

Hey all, Well it has been 4 months now since my ankle replacement surgery and I must say: I would certainly recommend the surgery to anyone in need! Don’t wait until the last minute to have the surgery (like I did : (   ) I was almost running, and now, due to my foolishness, I am suffering a stress fracture (weak bones from prednisone) and in a cast until the upcoming Tuesday. I will be happy to answer any questions about surgery/recovery–anything. I’m just plain lovin’ the ankle! Wendy

Response:

Hi Wendy:      I would love to hear about your surgery as I just had a TAJR.  Did you see my recent post: FYI: Ankle joint replacement stats from my doc? What prosthesis did you have implanted? Ruthie — "Contraries are necessary for progression" Before you buy.

Response:

That’s great about your ankle Wendy, but do look after yourself. I also have fractures in my feet due to cortisone.  I am almost a cripple. I am taking Fosamax for my crumbling bones, but the Dr hasn’t told me what to do for my feet and pain in the meantime.  I imagine I should be staying off them.  They are not plastered.  Love to hear form you. Maureen.

– Hide quoted text — Show quoted text – Hey all, Well it has been 4 months now since my ankle replacement surgery and I must say: I would certainly recommend the surgery to anyone in need! Don’t wait until the last minute to have the surgery (like I did : (   ) I was almost running, and now, due to my foolishness, I am suffering a stress fracture (weak bones from prednisone) and in a cast until the upcoming Tuesday. I will be happy to answer any questions about surgery/recovery–anything. I’m just plain lovin’ the ankle! Wendy

Response:

Question:

I am to have it repeated next year and supplement my calcium in the meantime.

Don’t forget the Magnesium, and other elements. If I can get away w/o HRT, I’d like to, but if it helps with preventing RA osteoporosis maybe I should consider it.  Anyone got any experience with it?

If you want to consider non-medicinal ways to help bone density, then consider exercise – weight bearing, and dietary – I think I saw a report about onions increasing bone density on the www.nature.com website. — Dr G Chiu http://www.geocities.com/HotSprings/Villa/7472

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One warning about Fosomax–it caused a flare up in my OA in thumbs.  I had to wear a wrist brace on one hand and thumb on the other and go to therapy after taking it.  It happened once after I had been on Fosomax about a month.  My internist and Rheumotologist both said no that wasn’t the cause. I had stopped it–then I started back.  Exactly two weeks to the day, both thumbs were swollen and red and sore again.  Later I read somewhere that in some cases, Fosomax and affect the joints.  Just be aware.  Hope it works wonders for you. Gwen

Response:

I am just entering menopause and have RA.

So the bone density study you got reflects the following things at this point: 1. Your genetic potential for peak bone mass and genetic contribution to osteoporosis – a big amount 2. Whether you achieved your inborn peak bone mass potential – which depends on whether you were healthy as a child and young adult, whether you ingested adequate amounts of calcium and vitamin D during your growing childhood and adolescent years, whether you were on meds such as prednisone, inhaled steroids, etc which caused increased bone loss, whether you had a reasonably average age of your first period and regular periods thereafter. 3. The effect of RA on bone – RA itself, even without steroids, is associated with decreased bone density and osteopenia. If you do nothing and proceed into menopause, you will lose bone very rapidly over the next 6 months to 1 year and more slowly therafter due to withdrawal of estrogen.. Whether you can afford to lose bone depends on how much bone you have, what the numbers are, and what other factors besides estrogen lack will be contributing to bone loss.  These include, steroids, thyroid excess, cigarettes, alcohol consumption, possibly a high protein diet, posslbe colas, other meds such as cyclosporin, anticonvulsants, heparin. My parents have severe osteoporosis.

Genetics will out.  About 70% of peak bone mass is genetics. I had a bone scan done this year to help determine if I need HRT. My back is fine but I’m a little thin in the left hip.

What are the numbers?  Did they look at a wrist as well?  I always find the wrist is a helpful study (except in severe RA where there is a lot of deformity. (This is where I have had RA flairs) It was an enigma to my health care provider who "forgot" I have RA because I am in a current remission.

Many women without RA will turn out to have unrecognized osteoporosis when a scan is done as they are entering menopause. I am to have it repeated next year and supplement my calcium in the meantime.

Not only do you need calcium but you need vitamin D to absorb it – at least 400IU per day. If I can get away w/o HRT, I’d like to, but if it helps with preventing RA osteoporosis maybe I should consider it.  

If you don’t take HRT, you will lose more bone and rapidly as your estrogen levels disappear. Whether you can afford to lose more bone is the decision you and your doc will have to make. If not, you need some kind of antiresoprtive which could be estrogen, or raloxiphene (Evista) or Fosamax, or Didronel or Calcitonin. The other thing you will need to consider is whether you want any of the other real or theoretical benefits of estrogen – helps with hot flashes, dryness of vaginal tissue, lowering of blood lipids, possible prevention of heart disease, possible prevention of Alzheimers and whether you want to risk an increased chance of breast cancer. It’s a tough decision.  Good luck. DrSusan Anyone got any experience with it? – Hide quoted text — Show quoted text – Thanks in advance. Jeri Z

Response:

Hi, I am just entering menopause and have RA. My parents have severe osteoporosis. I had a bone scan done this year to help determine if I need HRT. My back is fine but I’m a little thin in the left hip. (This is where I have had RA flairs) It was an enigma to my health care provider who "forgot" I have RA because I am in a current remission. I am to have it repeated next year and supplement my calcium in the meantime. If I can get away w/o HRT, I’d like to, but if it helps with preventing RA osteoporosis maybe I should consider it.  Anyone got any experience with it? Thanks in advance. Jeri Z The Zezulas

Response:

Jeri, I was just going to post about this subject because I just started Fosamax for osteoporosis. I’ve had RA for 24+ years and am in a surgically induced menopause (I’m 46 years old).  I take HRT (Climara patch).  My GYN said the patch will help my bones, without hurting the liver, since it is a patch and not a pill.  But since I’ve had RA for so long and have been on steroids off and on for many, many years, my bone density test showed decreased bone mass in my hips and femurs.  Hence, I started taking Fosamax along with 1200 mg of Calcium and 400 IU of Vitamin D. The way I found out I needed the bone density done is that I broke the 5th metacarpsal bone in my left foot just by tripping over some mulch in my garden.  My RD felt it was broken too easily and ordered the bone density.  So I’m thinking that I’ve had bone loss prior to my surgery (which was March, 1999). It’s JMO, but I would go with the HRT especially since your Bone Density has already showed some decrease in bone mass.  And maybe start on the Fosamax.  I’m taking 5 mg which is the lower of the two dosages.  It is a pain in the B— to take, many restrictions with the dosing, but if it helps my bones, it’s worth it.  I’m told if taken properly, in 3 months, I should see some improvement in bone density. I fear falling and breaking my hip. Whatever you decide to do, good luck and let me know. Donna

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Question:

writes I’m sorry I just can’t understand why they’ll give you a line for the bisphosphonate & not give you some TPN aswell. It surely is worth asking them about it seeming though you’ll have a line in.

Well, I actually couldn’t have TPN or SPN through the same line — the bisphosphonates are hugely reactive and have to be given through a dedicated line. I agree with you, though, that if my ortho is happy to stick a line in me, then it’s illogical for the gastro to be so paranoid and reluctant about it. But there’s not much I can do about it, as each consultant has to use their own discretion, and the gastro refuses to give me TPN because he says it’s too risky. <shrug. It doesn’t really matter anyway, IMO, since I’m doing okay-ish on the elemental feed via NG tube. (Actually I ended up at the hospital again last night because my GI tract jammed up completely in response to a slight reduction in my domperidone dosage. I also vomited my ng tube, but that’s just a minor annoyance, it happens often and I just insert another tube myself.) I would have to say "go for it" though – can’t really do you any harm & the benefits would outweigh the risks I should think.

Yep, I agree. I’m going for it, despite the risks. Anything that might ease this damned bone pain that I get would be wonderful. The treatment should start within the next 1 to 2 weeks, I’m told. love from Julie (Natalie). Julie_A (Natalie in real life) Julie’s Anorexia Pages:    http://www.dawnmist.demon.co.uk/ed00.htm

Response:

I’m sorry I just can’t understand why they’ll give you a line for the bisphosphonate & not give you some TPN aswell. It surely is worth asking them about it seeming though you’ll have a line in. Also I think the particular drug you are talking about is always given via IV & one of the main side effects occurs around the site of the cannulla so you’ll want to make sure they use a larger vein for access maybe even a sub clavian??? Again, while you have the cannulla in why not see if you could have some TPN. I would have to say "go for it" though – can’t really do you any harm & the benefits would outweigh the risks I should think. Sonjia

Response:

Dear Julie – I’m afraid that with no medical knowledge I cannot begin to offer advice. But, I wanted to wish you well. You are in my thoughts… let us know what you decide. Take care, Reenie Share what you know. Learn what you don’t.

Response:

Hi, Natalie!  Took a fast look at MEDLINE

(snippo) Thanks for doing that, Connie — much appreciated. I was interested to note that Aredia  (Pamidronate)  is one of the biphosphonates, since I’ve been taking Fosamax, another member of that same chemical "family" for several months now.

That’s right. Fosamax is the one that is licenced for (postmenopausal) osteoporosis, but as you say it often leads to GI side effects, and my consultant says I probably wouldn’t even absorb it given the state of my digestion (or lack of digestion, I should say). so  – why not try it? From the way you have described your condition, certainly it couldn’t hurt to take the risk and follow through with this experiment.

I think you’re right. I doubt that my orthopedic consultant (one of the doctors I *do* trust) would be advocating something experimental and drastic if I didn’t really need it. So, unless I suddenly hear something truly alarming about it (which I doubt), I’m taking a deep breath and going for it. Thanks also to the others who responded with their thoughts and support (Jodie, Kevin…). love from Natalie (Julie). Julie_A (Natalie in real life) Julie’s Anorexia Pages:    http://www.dawnmist.demon.co.uk/ed00.htm

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Julie A- My fingers are crossed for you as well.  Your situation is almost unfathomable to me, and I feel for you.  The best of luck from the bottom of my heart. Jodie

Response:

Hi, Natalie!  Took a fast look at MEDLINE and I see what you mean about the risk factors, but it sounds to me as though this experimental infusion of disodium pamidronate could really help more than hurt.   One of the abstracts on MEDLINE mentioned administering calcium simultaneously, so it sounds as though your doc is on the right track with that suggestion, too. I was interested to note that Aredia  (Pamidronate)  is one of the biphosphonates, since I’ve been taking Fosamax, another member of that same chemical "family" for several months now.  I had not heard of Aredia, so was not sure whether or not it is approved for use in the US, but in checking MEDLINE, I found that indeed it is, for therapy of the same situations  you mention: Paget’s and bone CA.  Again, there was no specific indication of clinicians having used it in the way which has been suggested to you, but it sounds like a reasonable approach based on good scientific evidence of success in almost-similar situations, so  – why not try it? From the way you have described your condition, certainly it couldn’t hurt to take the risk and follow through with this experiment.  The literature seems to report good results for pamidronate therapy for  osteoporosis stemming from other causes (liver transplants, etc.) and so why not try it in your particular situation? Definitely by having the IV infusion as opposed to oral intake, you will avoid the gastric distress that sometimes accompanies such meds. That will make it a little easier to tolerate, I’m sure. As you’ve said, you’ve got little to lose…so, I say, go for it! –Connie — "Starving the flesh wastes the spirit." –Kandis Elliot

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Hi Julie, I’m always interested in hearing what is happening with you, as a.s.e-d is a place for support which we all need.  I’m glad you put up your web page with the updates.  Maybe a detailed update there with some sharing here too? My thoughts are as you say: OTOH I’m inclined to feel that I haven’t got a lot to lose at this stage in my life.

If it were me (and its not, and I couldn’t really say unless I were actually in the situation) I think I would be inclined to go ahead with it.  If nothing else, it might be of benefit for others suffering from osteoporosis if the doctors learn some things. Anyway, I really wish you as much peace as possible, and glad that you have some companions during this phase of your life.  Please feel free to write anytime, although I know you already have lots of support. Kevin K trusting the process…..

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Hi ASED, I’ve just been offered an experimental treatment for my osteoporosis, and after reading up on the medical side of things, thought I’d ask if anyone else here has tried it. The treatment in question is an intravenous infusion of a drug called Aredia (disodium pamidronate), which is normally used for cancers of bone and for Paget’s disease. Because of the extent of my osteoporosis and also malnutrition, my consultant feels that something drastic is required, and says that in some cases this drug has been helpful in treating otherwise-intractable osteoporosis. Because of my wrecked digestive system I don’t absorb a lot of drugs too well by mouth, including the usual estrogen/calcium combo that I’ve been taking for years, so she is also proposing to give me estrogen implants and possibly even intravenous calcium. Anyway, since Aredia is not licenced for osteoporosis and this is all rather experimental (I feel like a guinea pig here!) I wondered if by any chance anyone else here had been offered, or tried, this treatment. The list of risks, cautions and possible side effects is enough to intimidate even a thick-skinned medical person like me, but OTOH I’m inclined to feel that I haven’t got a lot to lose at this stage in my life. Most of my long bones are visibly curved nowadays, I’m three inches shorter than I used to be, and confined to a wheelchair from a combination of bone pain, fibromyalgia, arthritis and muscle depletion. And in constant pain. I’ve lost a further quarter of my bone density in the last year alone, and my consultant feels that unless something is done now, my bones will almost literally fall apart Assuming that I do indeed go ahead with this treatment — I expect to go into hospital in about 2 weeks time — I’ll report back on what happens here, if anyone is interested. Crossing my fingers and worrying… Love from Julie A. Julie_A (Natalie in real life) Julie’s Anorexia Pages:    http://www.dawnmist.demon.co.uk/ed00.htm

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Question:

DG DISPATCH – EULAR: Fosamax Prevents Glucocorticoid-Induced Bone Loss ———————————————————————— ———————————————————————— By David Jack Special to DG News GLASGOW, SCOTLAND — June 11, 1999 — Study results confirm that Merck

Question:

Krystie Rose – Celebrex is an NSAID that targets a certain prostagladins that’s involved in inflammation but not the prostagladins that protects the stomach. It’s known as COX II inhibitor. Celebrex as a NSAID is still a threat to your kidneys so if you have lupus nephritis – you should discuss it’s use w/your nephrologist. Enbrel has been found to cause antibody to double stranded dna – which may prohibit it’s use in SLE. Talk to your rheumatologist about it. Sorry to hear about your back. I know how very painful compression fractures are – I’ll keep you in my prayers. Are you on Fosamax? And have you consulted physical therapist? Toni

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For the osteoporosis I’m taking Miacalcin Nasal Spray (How a naslal spray helps my bones took me a while to understand LOL) So far it’s helped prevent further bone loss but the damage has already been done. I guess, because of Celebrex being an NSAID that isn’t an option. And with Lupus, it appears that Enbrel probably isn’t either. Oh, well. I guess I’m stuck with the wonderful combo of MTX, Cytoxan, Plaquenil, Prednisone and LOTS of pain meds (Thank God for Morphine). Krystie Rose

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YES- HI LADY KRISTY- I HAVE BEEN ON PREDNISONE FOR 5 YEARS- AND HAVE EVERY SIDE EFFECT POSSIBLE-MOON FACE-BUFFALO HUMP -WEIGHT GAIN-STRETCH MARKS(STREA)- AND EVERYTIME I START TO WEEN DOWN ON THEM- MY ARTHRITIS FLARES UP AGAIN. I MUST GET OFF THIS MED.- DR. SAYS MY LIVER IS NOT GOOD.                     JUST STARTED CELEBREX-IT’S WONDERFUL-AND I’VE TRIED EVERY POSSIBLE DRUG- METHOTREXATE-ARAVA- ARE JUST TWO OF THE MANY I’VE BEEN THROUGH. GOOD LUCK- TRY CELEBREX- IT WORKS WONDERS FOR

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In some cases, once the synthetic source is removed, the adrenal glands still don’t kick in and start doing their job again, thus creating dependency on synthetic corticosteroids. (I hope that’s what you wanted to know. LOL)

Yeah, that certainly explains it, but I’m not sure it’s what "I wanted to know." So, what’s the prognosis?  Is there any chance that you will ever get off prednisone? Best wishes… Rick G (in CA) (To reply remove .NO.Spam from my e-mail address)

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So, what’s the prognosis?  Is there any chance that you will ever get off prednisone?

Well, it’s highly doubtfu that I’ll EVER get off it but we keep trying at least once a year. Maybe someday my adrenals will say "Hey, we’re bored, lets start working again." LOL l. Krystie Rose

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For the osteoporosis I’m taking Miacalcin Nasal Spray (How a naslal spray helps my bones took me a while to understand LOL) So far it’s helped prevent further bone loss but the damage has already been done.

I used to be on Miacalcin also.  I am no longer taking it because my bone density has recovered enough to be considered normal and not osteoporosis.   Maybe eventually the Miacalcin will help you to get some of the density back again also.  BTW are you taking calcium also? idydal-Diana Remove nospam from email address.

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BTW are you taking calcium also?

Yup, I swear, I take almost as many vitamins as I do meds. Krystie Rose

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Krystie, I was on it 16 yrs..yes osteoporosis, then the cataracts..I am also on miacalcin and did horrible  till I got off the pred( went on minocin) Now off the Mtx too..Wow..I thought my RD was bad..I was 90 mg a day for 1 yr straight..then I needed plasmapheresis to get down to 15..I was at 10 when i went on the minocin and no problems. I have SLE and RA as well as sjogrens Marge Marge

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Angela – I have been on Prednisone doses at 120mg/day for nephrotic syndrome secondary to membranous nephropathy related to SLE. If kidney function starts to decline than IV Cytoxan is used, perhaps plasmaphoresis. Unfortunately it’s not unusual. In my case, I have always responded to high dose Prednisone – at least, so far,  X 3. Unfortunately the last exacerbation left me w/hypertension. The good news for those w/lupus nephritis is LPJ 394. La Jolla Pharmaceutical’s drug in clinical trials found to supress antibody to ds-dna. It’s in phase III clinical trials now, and outcomes look VERY promising. Toni

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Opps – that’s LJP 394 (not LPJ 394) Toni

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I have heard of people getting off prednisone with Plaquinal (sp?), Metholtraxate (sp?) – I’ve tried both and the plaq helped a little.

I’m on all the above already along with the Prednisone. For pain I’m taking Tyl-3 and percocet. I tried Neurontin (up to 2000mg but I got headaches and was sleepy all of the time. I found with prednisone that there are a host of other medications to take to offset the damage prednisone does (like vitamin D, calcium, stuff to quiet the stomach, antibiotics, etc).

For pain I’m on MS Contin (60mg bid) and Vicodin ES in between for breakthrough pain. I’m on Neurontin for my seizure disorder and that’s helped with my pain a wee bit but not significantly. One thing you might want to check is the use of Naproxin, it really helps me.

Thanks, but I’m allergic to all NSAID’s (yes, all. Sheesh!) Krystie Rose

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Krystie Rose – If you are using the Vicoden too frequently, you need your dose of MS Contin adjusted. There is no ceiling on morphine dosage. Talk to your physician about it. And make sure you’re on good bowel regime Toni

Response:

I am on Plaquenile and Prednisone (no MTX). Never was eable to go below 3 1/2 mg of Prednisone. Maybe now being on Enbrel I will be able to quit both.  Sure will take it slow with the Prednisone though. Nocki – Hide quoted text — Show quoted text – I have been on prednisone since 1981, in the early years the doses were large and made me very hungry, I gained a lot of weight. If you are taking 7mg or less your adrenal glands should start to work and you shouldn’t go into a crisis. When you work your way down on prednisone it has to be VERY (like in one mg for a week or more) gradual and with your doctors permission. I tried to get off prednisone for years and every time I got down to 10mg got real sick and had to take Solu-medrol shots. I, too developed osteoporosis with several FX. I am much older than you – 60 – but understand what you are going through. I have Sjogren’s Syndrome, Lupus, Osteoporosis, pulmonary fibrosis, replaced joints etc. I believe that taking large doses of prednisone caused Avascular Necrosis (5 joints replaced) and the osteoporosis. I have heard of people getting off prednisone with Plaquinal (sp?), Metholtraxate (sp?) – I’ve tried both and the plaq helped a little. For pain I’m taking Tyl-3 and percocet. I tried Neurontin (up to 2000mg but I got headaches and was sleepy all of the time. I found with prednisone that there are a host of other medications to take to offset the damage prednisone does (like vitamin D, calcium, stuff to quiet the stomach, antibiotics, etc). One thing you might want to check is the use of Naproxin, it really helps me. Good luck to you! (If you feel like it, let me know how you are doing)         Karen

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(Prtyobscur) writes: I’m curious about the mega-doses of prednisone.  Is this for something other than arthritis?  When my RD thinks I need a real steroid whack, I’ve used IV soluMedrol…a full gram over 2 hours at an outpatient clinic.  This generally stops my inflammation in a hot NY second but, on the occassion that it didn’t, they repeated the treatment 2 days later.  (BTW, under such circumstances, I’ve been known to eat the paint right off the wall <g ).  The acute delivery is supposed to cause less adrenal suppression.  You might want to ask your RD about it.

The prednisone therapy IS multi-purpose….used to treat systemic lupus, JRA, and severe asthma. I was started on it mainly to control a major JRA flare-up. The doc said it would only be for up to 2 months. How 2 months has turned into 12 years, I’m not quite sure. Hmmm…  Anyway, by the time me or my parents realized what type damage it was doing, it was too late. They’ve tried MANY times to wean me off it but I go into adrenal crisis every time (ICU is NO FUN!!!) Well, now you’ve got the whole story. Krystie Rose

Response:

I’d be interested in knowing more about what you refered to as adrenal crisis. What I experienced was pretty bad, but the term ‘adrenal crisis’ sounds even worse.

Adrenal crisis (also known as secondary Addison’s disease) is where there is an acute lack of natural and/or synthetic corticosteroids in the body. If left untreated, and especially in acute cases, this can be fatal. This happens when the body becomes dependent on the synthetic corticosteroids and the adrenal glands, thinking their work is being done for them, stop producing them naturally. In some cases, once the synthetic source is removed, the adrenal glands still don’t kick in and start doing their job again, thus creating dependency on synthetic corticosteroids. (I hope that’s what you wanted to know. LOL) Krystie Rose

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Dear Kristie- Do not just go off prednisone.  You have to talk to your RA Dr about cutting it all together.  Osteoporosis and stress fractures can be avoided by taking Fosamax or Calcuim with D for absorption.

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(STSK61) writes: Dear Kristie- Do not just go off prednisone.  You have to talk to your RA Dr about cutting it all together.  Osteoporosis and stress fractures can be avoided by taking Fosamax or Calcuim with D for absorption.

Och!!! No! That’s not what was thinking of doing. To go off prednisone would be suicide, literally. I’m completely dependent on it as my sole source of adrenocorticoids. My adrenal glands have stopped producing them naturally. To prevent further bone loss, we are keeping my Prednisone dosage to a minimum possible (10mg/day) and I’m taking Miacalcin. Krystie Rose

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<<How 2 months has turned into 12 years, I’m not quite sure. Dear Lady K, And they say time flies when you’re having fun!  It doesn’t sound like fun at all! Warm regards, Angela "We are the heros of our own stories"  –Mary McCarthy

Response:

I have been on prednisone since 1981, in the early years the doses were large and made me very hungry, I gained a lot of weight. If you are taking 7mg or less your adrenal glands should start to work and you shouldn’t go into a crisis. When you work your way down on prednisone it has to be VERY (like in one mg for a week or more) gradual and with your doctors permission. I tried to get off prednisone for years and every time I got down to 10mg got real sick and had to take Solu-medrol shots. I, too developed osteoporosis with several FX. I am much older than you – 60 – but understand what you are going through. I have Sjogren’s Syndrome, Lupus, Osteoporosis, pulmonary fibrosis, replaced joints etc. I believe that taking large doses of prednisone caused Avascular Necrosis (5 joints replaced) and the osteoporosis. I have heard of people getting off prednisone with Plaquinal (sp?), Metholtraxate (sp?) – I’ve tried both and the plaq helped a little. For pain I’m taking Tyl-3 and percocet. I tried Neurontin (up to 2000mg but I got headaches and was sleepy all of the time. I found with prednisone that there are a host of other medications to take to offset the damage prednisone does (like vitamin D, calcium, stuff to quiet the stomach, antibiotics, etc). One thing you might want to check is the use of Naproxin, it really helps me. Good luck to you! (If you feel like it, let me know how you are doing)         Karen

Response:

<<For the osteoporosis I’m taking Miacalcin Nasal Spray (How a naslal spray helps my bones took me a while to understand LOL) So far it’s helped prevent further bone loss but the damage has already been done. Dear LK, The good news is that with supplementation, my bone density improved between tests (about a year and a half).  I’m also using miacalcin now and find it really easy to use. I’m curious about the mega-doses of prednisone.  Is this for something other than arthritis?  When my RD thinks I need a real steroid whack, I’ve used IV soluMedrol…a full gram over 2 hours at an outpatient clinic.  This generally stops my inflammation in a hot NY second but, on the occassion that it didn’t, they repeated the treatment 2 days later.  (BTW, under such circumstances, I’ve been known to eat the paint right off the wall <g ).  The acute delivery is supposed to cause less adrenal suppression.  You might want to ask your RD about it. Warm regards, Angela "We are the heros of our own stories"  –Mary McCarthy

Response:

I have been on Prednisone daily since I was 8 (that’s 12 years now)… Because of it, I now have osteoporosis w/ 2 compression Fx @ L2 & L3. I am also dependent on it and every time I’ve tried to get off it I go into adrenal crisis. Has anyone else had the same probs with it?

Krystie, I’ve had problems but they probably weren’t as bad as yours.  When I was first diagnosed with PA 20 years ago my rheumatologist made a reference to there being some osteoporosis, but I never heard anything about it since that time. At least not until… About 10 years ago I became a member of an HMO and was assigned to a doctor that wasn’t a rheumatologist (which surprised me when I found out since he had some kind of certificate on his wall that was written in Latin and had the word "Rheum…" on it.  I assumed he was a rheumatologist.  Wrong!)  But, anyway, at one point I fell and injured my back and because of the pain I couldn’t sleep and developed fibromyalgia (althouth the doctor didn’t diagnose it).  When I complained about the pain, that dorktor started prescibing prednisone, which did nothing for the back pain or the pain from the fibro.  Everytime I kept complaining about the pain he would increase the dosage of the prednisone. Eventually, after I figured out that the guy was worthless and found out that he wasn’t a rheumatologist and figured out that I wasn’t getting any better, I insisted to the HMO that I be assigned to a rheumatologist and get a complete review of my medical condition.  They did it, and I was assigned to a good rheumatologist who almost immediately recognised my fibro.  And he acted VERY shocked that I was on prednisone and had me start reducing it immediately.  At the same time he did do a complete review of my medical condition – I had dozens and dozens of various tests, one of which was a "bone densitometry" which indicated osteopososis.  The tests also indicated 2 or 3 vertibral compression fractures.  One was apparently from my recent back injury, and one or two were apparently quite old. I was on 10 mg of prednisone, which compared to your dosage is nothing!  I don’t know what "adrenal crisis" consist of, but I sure didn’t have any fun eliminating the prednisone.  I would cut down 1 mg every two weeks.  When I cut down I would be ok for a couple days, then I would be in severe pain for about 7 days, then I would be ok for a couple days until it would be time to cut down again.  This went on over and over again.  I took a ‘break’ after I cut down to 2 mg, but it took me 8 months to get off of the stuff… and it was hell.  (I suspect that the fibro that I was experiencing at the same time, might have increased the pain.)  But I am very happily off of that poison now! And no doctor that knows what is good for him should ever even mention the posibility of me taking prednisone again!!!!! I was originally prescribed Didronel for the osteopososis, and at some point I was prescribed fosamax, instead.  That’s apparently doing some good, since I had another ‘bone densitometry’ 2 weeks ago, and although I haven’t had an appointment with my doctor, he did send me copies of all the reports, and he had written on it "This is improved since 5/96!" I’d be interested in knowing more about what you refered to as adrenal crisis. What I experienced was pretty bad, but the term ‘adrenal crisis’ sounds even worse. Rick G (in CA) (To reply remove .NO.Spam from my e-mail address)

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I have been on Prednisone daily since I was 8 (that’s 12 years now)… Because of it, I now have osteoporosis w/ 2 compression Fx @ L2 & L3. I am also dependent on it and every time I’ve tried to get off it I go into adrenal crisis. Has anyone else had the same probs with it? Krystie Rose

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Ouch!  Kristie Rose. How much prednisone are you taking?  Have you been taking calcium supplements.  I’ve been on lose dosage pred for 4-5 yr. and my bone density was OK in 96.  Hope to wear from pred if I pass the Celebrex trial.  Marj LadyKrysti wrote – Hide quoted text — Show quoted text -I have been on Prednisone daily since I was 8 (that’s 12 years now)… Because of it, I now have osteoporosis w/ 2 compression Fx @ L2 & L3. I am also dependent on it and every time I’ve tried to get off it I go into adrenal crisis. Has anyone else had the same probs with it? Krystie Rose

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Ouch is right. I’m no longer able to walk and can barely move my legs at all (thanks to steroid myopathy). My lowest dosage has been 10mg/day with the highest at over 120mg/day. I’ve been hearing a lot about both Celebrex and Enbrel. Are either of them NSAID’s. I can’t take NSAID’s due to a severe allergy (anaphylaxis) to every single one. – Hide quoted text — Show quoted text -Ouch!  Kristie Rose. How much prednisone are you taking?  Have you been taking calcium supplements.  I’ve been on lose dosage pred for 4-5 yr. and my bone density was OK in 96.  Hope to wear from pred if I pass the Celebrex trial. Marj LadyKrysti wrote I have been on Prednisone daily since I was 8 (that’s 12 years now)… Because of it, I now have osteoporosis w/ 2 compression Fx @ L2 & L3. I am also dependent on it and every time I’ve tried to get off it I go into adrenal crisis. Has anyone else had the same probs with it? Krystie Rose

Krystie Rose

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Celebrex is a new form of NSAID, I don’t know about anaphylaxis problems associated with it.  Check out: http://www.searlehealthnet.com/pr/pi-html.html.  I have OA so don’t know much about Enbrel except it is for RA and is an injectable.  If you are being followed by a rheumatologist, he/she will know about these new drugs.  If for some reason you are not seeing one, get an appointment ASAP! Never hear of steroid myopathy, it must have developed from your huge doses of pred.  The highest I was ever on was 20 mg for 4-6 months and the doctor was none too pleased that I upped it for so long above my then 10 mg dose. Marj

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Question:

Hmmmmm. I get numb toes, I have OA in lumbar spine. What do I do about it? Basically wiggle my toes and squirm in my chair until they have feeling again. I also have OA in my cervical spine and get numb fingers. The RD didn’t seem to think it was serious enough to get upset over. I’ve always had poor circulation in my extremeties. DeeTee OK, Own up who gets numb feet and what do you do about it ? I have OA in lumbar spine, this is what causes this problem. I would appreciate any advice. Nan from Sydney Australia

  We have electric heat. How does Santa fit      through those tiny little wires???

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My toes on my right foot get numb too. I know I have somthing wrong with my back and hips but I haven’t been diagnosed yet as to the problem. I guess I will tell my RD about it Thurs. I do have RA. Cindy Houston

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I have a numb toe on my left foot and when I told my Rheumy about it. He said it is a nerve being compressed and to forget about it. I have MCTD and OA of the hips and back. I also have a herniated disc.I am taking fosamax for the OA and of course calcium.  ….Gigi

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This really scares me……my legs and feet go numb no matter if I’m sitting or standing but when I stand my leg goes numb even more. My knees are at the point that I need TKR. Just wondering if it is the bad knees that is doing this. Barbara Ga

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Hi Gigi, I have a numb toe on my left foot and when I told my Rheumy about it. He said it is a nerve being compressed and to forget about it. I have MCTD and OA of the hips and back. I also have a herniated disc.I am taking fosamax for the OA and of course calcium.  ….Gigi

I have a numb big toe on my right foot, and both my RD and my ortho say the same thing. I feel like it’s kinda easy for them to say. <g But I guess I at least know my toe isn’t going to drop off or something. Robin — Robin Mayhall Director, Physical Conditions Community Dr. Koop’s Community http://www.drkoop.com

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I have a numb toe on my left foot and when I told my Rheumy about it. He said it is a nerve being compressed and to forget about it.

Hi, I have numb big toes and the inside of my feet and inside ankles. It is tarsal tunnel sydrome, like carpal tunnel in the hands, except this is in the feet. I am having surgery to release the compressed nerve. The longer this goes on the more damage and the more permanent the damage and the less likely that

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I get cortizone injections for my OA in L5 and it stops the numbing in my feet.  when my feet start getting numb I know it is getting time to get another injection.  the doc that does the injs thought it was peripherial neuropathy but my neuro tested me and I do not have that.  So the next time I get my inj I’ll let the doc know and see what he thinks, again.  I believe it is a compressed nerve or something like that. Shirley

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OK, Own up who gets numb feet and what do you do about it ? I have OA in lumbar spine, this is what causes this problem. I would appreciate any advice. Nan from Sydney Australia — Do you wish the world were happy? Then remember day by day, just to scatter seeds of kindness as you pass along lifes way.(Patience Strong) — Do you wish the world were happy? Then remember day by day, just to scatter seeds of kindness as you — Do you wish the world were happy? Then remember day by day, just to scatter seeds of kindness as you

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I got them, numb feet that is.  May be from spinal fusion or diabetes E. Henry – Hide quoted text — Show quoted text – OK, Own up who gets numb feet and what do you do about it ? I have OA in lumbar spine, this is what causes this problem. I would appreciate any advice. Nan from Sydney Australia — Do you wish the world were happy? Then remember day by day, just to scatter seeds of kindness as you pass along lifes way.(Patience Strong) — Do you wish the world were happy? Then remember day by day, just to scatter seeds of kindness as you — Do you wish the world were happy? Then remember day by day, just to scatter seeds of kindness as you

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Question:

dh wrote:

(snip)  The doctor wants me to start taking Fosamax but I’m scared.  (snip)  Has anyone else taken this drug without side effects?

Yes, I have taken it for a couple years and my bone density is good. I’m 49 and my Mom has osteoporosis so I thought it would be a good idea to take it before I had the problem, too.  I take it in the morning a half hour before breakfast and always sit up or nearly upright in a recline chair after taking it.  No stomach or throat problems so far.  They say that the stomach or throat problems are more likely if you lie down after taking the pill. Good luck.  If you have taken steroids, this may counteract the effect they have on bone density. Lois in Michigan

Response:

I  was diagnosed with MS three yrs ago.  2 weeks ago I was diagnosed with osteoporosis,also.  I’m only 46 and I don’t have any of the risk factors for this. Blood tests are all normal.  The doctor wants me to start taking Fosamax but I’m scared.  I don’t want to upset anything because I’m finally able to handle all the other stuff.  I’m in enough pain I don’t need stomach or throat problems,too.  Has anyone else taken this drug without side effects?  Help! I’m supposed to start taking it tomorrow morning.

Response:

Lorraine, sorry I can’t help you re Valium usage, but I do wish you best luck with your treatment.  BTW, I’d be interested to know if your doctor had any ideas about why you developed osteoporosis at such a young age. Drema

Hi Drema and all on-line         In answer to your question, I had known something was up some while ago (I think we all know when something is amiss with our bodies, I’d started shrinking and looking lobsided) but was ‘fobbed’ off, as "osteoporosis doesn’t happen in the young only in the over 60’s", I had had a bone density scan taken some while ago, and was asked back for another one earlier this year in March, (it was a few days after my wedding actually), and it wasn’t until June that it was actually confirmed as osteoporosis, over the telephone.  It could be due to my sedate lifestyle (though I’ve been disabled over 8 years and it didn’t show up in the first scan), it could be due to being put on a drug called Provera to stop my menstrual cycle, (I was on that for over a year) – at the moment nobody can put there finger on the answer.  So now I’m on Diazepan<sp

to control my anxiety (I hyperventilate all the

time), I’m trying out these new ‘tin’ pants, stops fracture of hips when falling, I had trouble with shoulder (physio didn’t help), not broken according to x-ray but put in sling due to mad muscle tremors, (that hasn’t been answered either, nobody can tell me why,) have terrible head and neck pains (thats not answered either).  Anyway, walking is null and void.  Luckily I think I’ve still got my sense of humour left (somewhere).  Keep smiling, Lorraine

Response:

i’m a proponent that MS is caused, in most people by food allergies. statistically gluten is one of the most likely food allergens amongst the population. i have just read of a possible link between osteoporosis and gluten consumption. this is an excerpt: "there are several studies which demonstrate (often coincidentally) that a much larger group than those with celiac disease are mounting an immune response against gluten, and that this response is causing or contributing to serious illness. Phytic acid in whole cereal grains binds to minerals, including calcium. This chemical bond is not broken in the GI tract. The net result is the binding and wasting of much-needed dietary  calcium, even among those whose immune systems can tolerate gluten, and these grains may be implicated in osteoporosis " is it coincidental that you have osteo resulting from a high gluten diet and MS from being allergic to at least gluten? the article re osteo and gluten is at: http://www.panix.com/~donwiss/hoggan/ and the article is entitled Gluten is a Dubious Luxury of Non-Celiacs in this archieve is an also an article entitled MS and Gluten/Casein Cheers Nick – Hide quoted text — Show quoted text -Lorraine M Money wrote:

Hi, In June I was diagnosed with osteoporosis, I’m 34, and have been put on Didronel PMO (tablets and drink).  I’d be interested in ‘talking’ to those with osteoporosis, my levels are high unfortunately, and have been told that if I went to see an osteopath (for example) I’d end up paralaysed.  I’ve been put on Diazapam (driving me up the wall), as my anxiety levels are sky high.  Anyone else been on Diazapam? Keep in touch. I  was diagnosed with MS three yrs ago.  2 weeks ago I was diagnosed with osteoporosis,also.  I’m only 46 — Lorraine

Response:

hi, I’m taking a half dose of Fosomax also for bone loss, and have had no side effects. Just follow the directions- empty stomach, lots of water, and don’t lie down.  Hope that you have no problems with it, ’cause I’ve had friends who’ve had excellent results from this drug.  One friend had lost a lot of bone mass and was in danger of fractures, in part because she’d taken oral steroids for long periods of time and in part because she’d gone through menopause and not known it (because of hysterectomy).  Anyway, her bones have improved a great deal since taking the drug. We’re the same age.  I went to my gynecologist because I was hot all of the time  and a bone density scan showed that I’d lost bone mass.  He did a blood test for FSH (follicle stimulating hormone), and the level was sky high.  Although I’d been menstruating, apparently no eggs were released and I was definitely menopausal.  Was FSH the test that you had? good luck, jan g – Hide quoted text — Show quoted text -dh wrote in message …

I  was diagnosed with MS three yrs ago.  2 weeks ago I was diagnosed with osteoporosis,also.  I’m only 46 and I don’t have any of the risk factors

for

this. Blood tests are all normal.  The doctor wants me to start taking Fosamax but I’m scared.  I don’t want to upset anything because I’m finally able to handle all the other stuff.  I’m in enough pain I don’t need

stomach

or throat problems,too.  Has anyone else taken this drug without side effects?  Help! I’m supposed to start taking it tomorrow morning.

Response:

dh wrote:

I  was diagnosed with MS three yrs ago.  2 weeks ago I was diagnosed with osteoporosis,also.  I’m only 46 and I don’t have any of the risk factors for this.

I’ll bet you do have some of the risk factors.  Have you taken steroids for the MS?  You are approaching menopause and your hormones are likely slowing down in production.  Have you decreased the exercise you did when you were 40 and since you were diagnosed?  Are you more sedentary in your work and forms of play?

Blood tests are all normal.

This has little to do with it.  Your body will keep the mineral levels up (calcium) in the blood by stealing the minerals from other places (bones and teeth for calcium).

 The doctor wants me to start taking Fosamax but I’m scared.  I don’t want to upset anything because I’m finally able to handle all the other stuff.  I’m in enough pain I don’t need stomach or throat problems,too.  Has anyone else taken this drug without side effects?  Help! I’m supposed to start taking it tomorrow morning.

Pain from what?  If it’s the MS, there are things that can help with some of that.  But we need to know more to help you. Fosamax is fairly safe and it helps replace the bone you have already lost.  If you keep losing bone, you could be in for lots of fractures from relatively minor injuries.  Fractures can even occur from just turning over in bed if the bone gets thin enough.  There are tests for bone density.  Did your doc do xrays to determine the diagnosis? Please let us tell you our experiences.  But we need more info.  And it won’t hurt to put off the first Fosamax dose until later tomorrow or start the next day.               L

Response:

Lorraine, sorry I can’t help you re Valium usage, but I do wish you best luck with your treatment.  BTW, I’d be interested to know if your doctor had any ideas about why you developed osteoporosis at such a young age. Drema

Response:

"I  was diagnosed with MS three yrs ago.  2 weeks ago I was diagnosed with osteoporosis,also.  I’m only 46 and I don’t have any of the risk factors for this. Blood tests are all normal.  The doctor wants me to start taking Fosamax but I’m scared.  I don’t want to upset anything because I’m finally able to handle all the other stuff.  I’m in enough pain I don’t need stomach or throat problems,too.  Has anyone else taken this drug without side effects?"   My uncle has been taking Fosamax for more than a year and it’s been the first drug which has actually increased his bone density.  He never mentioned any side effects. My mother has also been on it for some months now and she too hasn’t had problems so far.   I think the most important thing is to take it exactly as directed, even though the delayed breakfast is not much fun.   There’s some stuff about Fosamax on the web and a deja-news search may bring additional information.      Bye,             Rene

Response:

Hi, In June I was diagnosed with osteoporosis, I’m 34, and have been put on Didronel PMO (tablets and drink).  I’d be interested in ‘talking’ to those with osteoporosis, my levels are high unfortunately, and have been told that if I went to see an osteopath (for example) I’d end up paralaysed.  I’ve been put on Diazapam (driving me up the wall), as my anxiety levels are sky high.  Anyone else been on Diazapam? Keep in touch.

I  was diagnosed with MS three yrs ago.  2 weeks ago I was diagnosed with osteoporosis,also.  I’m only 46

— Lorraine

Response:

Hi, I am 51 and just had a bone density test ,at my insistence. I am 3/4" shorter at my last physical. I have moderate osteoporosis slightly below the fracture line, whatever that means. My doctor has’nt called me yet. I’m confused about what kind of calcium to take or if I should take Fossamex. We’ll see what she says.

Response:

On Tue, 27 Oct 1998 03:36:40 GMT, "dh" <dhic…@home.com

wrote: .  The doctor wants me to start taking Fosamax but I’m scared.  I don’t want to upset anything because I’m finally able to handle all the other stuff.  I’m in enough pain I don’t need stomach

I am taking Fosamax for osteoporosis.  I also have significant pain from fibromyalgia and have GERD — gastro-esophageal reflux disease. So I already have heartburn. My doctor helped with prilosec which reduced my heartburn a lot. This is a balancing act for me.  I’ve already had compression fractures in my back and have pretty constant back pain.  I fall when I lose my balance.  I don’t want the pain of a broken hip or ankle. It is certainly worth trying the fosamax, along with whatever antacids your doctor recommends.  There is another drug which can be taken by inhaler if the fosamax doesn’t work. Kate

Response:

Question:

My mother is 87 and has been taking fosamax for four months.  She has noticed that she fills up quicker at meals, and has lower tolerance for alcohol, but neither of these bothers her whereas she is very upset (oh, vanity!) that her cheeks, beginning a week ago, have suddenly turned brown, in a racoon mask shape, first the right cheek and then the left, one day later. Her other meds are Ativan .5mg approx. 3-4 days per week (and she was trying the generic tablet for about 2 weeks up til 2 weeks ago) for about 6 months, HCTZ 50mg on alternate days, for blood pressure, for a long time, thyroid 90mg also for a long time, and Centrum Silver vitamins.  She uses Ti-Screen SPF 30+ sunblock daily (she lives in So. Cal. and is outside, with a hat, for about an hour daily), and her new bottle of it was made in Israel whereas the old bottle, which she finished 2 weeks ago, was made in California.  Comparing the ingredient labels, they seem to be pretty similar but not excactly the name chemical names.  She has an excellent diet tho she eats as much chocolate as she can get and also has been gorging on strawberries for last month. What could be causing the skin darkening? Jim

Response:

AApapele…@pacbell.net wrote:

My mother is 87 and has been taking fosamax for four months.  She has noticed that she fills up quicker at meals, and has lower tolerance for alcohol, but neither of these bothers her whereas she is very upset (oh, vanity!) that her cheeks, beginning a week ago, have suddenly turned brown, in a racoon mask shape, first the right cheek and then the left, one day later.

I can’t speak to the Fosamax question, but the "raccoon mask" sounds like melasma, or chloasma, sometimes called the "mask of pregnancy." It’s a brownish discoloration, often in that raccoon pattern you describe, mostly seen in women and associated with pregnancy, taking birth control pills and other hormonal shifts (it’s listed as a side effect of Depo Provera, for instance); exposure to the sun seems to bring it on. I’ve noticed a touch of it this past summer, although when I stay out of the sun it fades pretty quickly (I’m very fair-skinned to begin with). There are several places on the Web you can search for information about the condition; a quick search turned up http://www.dermnet.org.nz/dna.chloasma/chloasma.html a pretty comprehensive site sponsored by the New Zealand Dermatological Society, which explains the condition in some detail and suggests various treatment options. –Pat Kight kig…@peak.org

Response:

My mother is 87 and has been taking fosamax for four months.  She has noticed that she fills up quicker at meals, and has lower tolerance for alcohol, but neither of these bothers her whereas she is very upset (oh, vanity!) that her cheeks, beginning a week ago, have suddenly turned brown, in a racoon mask shape, first the right cheek and then the left, one day later.

It’s interesting that you mention decreased tolerance of alcohol as a possible side effect of Fosamax.  What symptoms does she get? My mother, age 77,has been on it for over a year and has developed increasingly serious symptoms when she drinks even a little alcohol, beer or wine.  A couple of weeks ago she got serious hives and illness from a beer. I have researched it and do not find that as a side effect, but now I am wondering if this is an undocumented side effect,  since your mother has it too. Cindy meht…@azstarnet.com

Response:

Question:

- Hide quoted text — Show quoted text -Robert Ames wrote: <snip

Does this indicate that Fosamax is a dangerous drug?  No.  That is an unethical conclusion based on poor science and the use of figures to manipulate people. What does the site say about Fosamax? Out of 1000 people who take it, 35 complain about it. 16-17 of those people stop taking it the first day. 3-4 people stop taking it/complain about it because it doesn’t work quickly enough to assuage their symptoms. Another 1-2 people stop taking it because it gave them a headache, or they thought it did. Another 2-3 people stop taking it or complain because they get a rash or other reaction to it. Another 1-2 people stop taking it or complain because they felt it gave them diarrhea. No, I’m sorry, that is not what the FDA report says.  It only shows the number of complaints per symptom for the entire dataset.  The number of patients complaining that Fosamax gives them headaches, diarrhea, etc. is not shown in the FDA report.  In fact, if we applied those numbers, we’d have to conclude that 1.4% suffered lost their hair (alopecia).

<snip

I notice that Grey posted at 4:20 AM.  This was probably just one of those bloopers that gets posted in the wee hours of the morning. I’ve done it myself, a few times.

Exactly.  I did make a mistake in interpretation, which I addressed in another post.  However, although the *site* does not give the numbers I listed, it is possible to take their percentages and figure out how many people who complained about a drug complained about which problem.  The largest category of complaints was ineffectiveness, at a bit over 33%. So, about 1/3 of people who complain about a drug complain that it did nothing.  The other two thirds of the ranked reasons given for complaints included things such as headache, gastric problems, etc. Other information on the site indicates that a good many people stop taking a drug within the first 24 hours. I think my first point is still true–the evidence on that site is useful, but not for proving that a particular drug is dangerous or for making recommendations about whether it should be on the market or not. Incorrect conclusions drawn from that information were being presented here on ASM. Also included in that point is the idea that it’s good to learn to read research and to find out for ourselves what something really says. — -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~- -Grey- -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~-

Response:

shelly (she…@rain.org) wrote:

: :       Yup, posting to this newsgroup is like getting hit in a drive-by : shooting. I never said it was the 10 most "dangerous" drug list. But : Wendy said that -someone- said that, and that she was darned irritated : that someone had. So take that, you someone. : shelly         My apologies to you Wendy, for my drive-by hit on you, when in fact the public record states it was Grey who made the charge that "someone" had turned the list of top 10 adverse drugs into a list of the top ten most dangerous drugs. Still looking for that "someone" who did that. shelly

Response:

Hypoint (hypo…@aol.com) wrote: : Shelly wrote:

    Yup, posting to this newsgroup is like getting hit in a

: drive-by :

shooting. I never said it was the 10 most "dangerous" drug list. But

:

Wendy said that -someone- said that, and that she was darned irritated

:

that someone had. So take that, you someone.

: : Doing a powersearch in Dejanews for the period of time from jul  1 1998 thru : Aug 12 1998  I find 5 posts I made that contain the word dangerous and none of : them were about the adverse experience list, and the only one that contained : the word irritated had it as part of Shelly’s post.         Wendy, you are right. It was my error to get your name mixed up with Grey, who was infact the one making the allegation. Please accept my apologies. shelly

Response:

- Hide quoted text — Show quoted text -she…@rain.org wrote:

Grey (Astra…@pacbell.net) wrote: : I was mainly objecting to the labeling of this list as a list of the ten : most dangerous drugs, when they are the ten most complained-about : drugs.  Please note that cocaine, barbiturates, amphetamines, and : -Grey-         My deepest apology to Wendy for mistating her position. I was clearly misquoting her as the public record shows. It was Grey who found that "someone" had labeled this list of top ten adverse drug reactions as the list of the ten most dangerous drugs. The search for that "someone continues." shelly

I think the post you are looking for was made under a thread called "Evista and Osteoporosis" by Robert Ames on July 22nd.  The list is from "ADE Reports by Top-10 Ranked Suspect Drugs: 1996" and I quote the drugs (without the number of complaints).  I printed this list because it was of personal interest to me:  RuthJ Fosamax Norplant Prozac Pepcid AC Estraderm Femstat Rogaine Paragard T380A Nix Zoloft

Response:

shelly (she…@rain.org) wrote: : :   Yup, posting to this newsgroup is like getting hit in a drive-by : shooting. I never said it was the 10 most "dangerous" drug list. But : Wendy said that -someone- said that, and that she was darned irritated : that someone had. So take that, you someone. : shelly    My apologies to you Wendy, for my drive-by hit on you, when in fact the public record states it was Grey who made the charge that "someone" had turned the list of top 10 adverse drugs into a list of the top ten most dangerous drugs. Still looking for that "someone" who did that.

Shelly, Thanks.  But I don’t need apologies.  Just wanted the public record straight. Word of reminder and personal request. Grey said when she posted that night that she had been up all night with insomnia.  Could  we please could consider it an honest mistake and move on? Wendy hypo…@aol.com

Response:

On Fri, 7 Aug 1998 20:59:38 -0700, shelly <she…@rain.org

wrote:    Also on another thread. How many calories in a few teaspoons of heavy creme? Why not use it. Who says the world "accepts" that a "high-fat" diet is a current no-no? Show me the proof for anything about diet, drugs and cholesterol, especially for women.

Heh, heh — touche’ Shelly.  :-) I believe that a high fat diet isn’t good for us, but you’re right — I don’t think there’s proof, yet. As for calories, the chart in my Laurel’s Kitchen cookbook gives 32 calories for a tablespoon of light cream.  Heavy cream’s value is only listed by the cup — 838 calories, which if divided by 16 (approximate no. of tablespoons in a cup measurement) comes out to 52.37 calories, or 52 (rounded off). Lianne To reply by e-mail, remove "seesig." from my address.  No spam, no announcements, no commercial e-mail, no mailing lists.

Response:

- Hide quoted text — Show quoted text -shelly wrote:

On Fri, 7 Aug 1998, Grey wrote: I was mainly objecting to the labeling of this list as a list of the ten most dangerous drugs, when they are the ten most complained-about drugs.  Please note that cocaine, barbiturates, amphetamines, and morphine were conspiciously absent from this list…they are all probably far more dangerous than any of the drugs on the list…but, few people on them complain about them. -Grey-         Who ever labeled it the 10 Most Dangerous Drugs?          I know I referred to this list as the 10 most complained about drugs listed by the FDA. Or is this an example of the distortion of the record that goes on here all too frequently, and mere repetition of a charge takes on a life of its own? Like the old "telephone game" children play?         Can you direct me to the post where it was claimed that the FDA List was the 10 Most Dangerous Drugs?<snip Thank you for clearing this up for me.

If you’re interested in that information, I suggest you go to Dejanews and look it up, rather than assigning this task to someone else. <snip

        Also on another thread. How many calories in a few teaspoons of heavy creme? Why not use it. Who says the world "accepts" that a "high-fat" diet is a current no-no? Show me the proof for anything about diet, drugs and cholesterol, especially for women.

This newsgroup is about menopause. — -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~- -Grey- -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~-

Response:

- Hide quoted text — Show quoted text -On Sat, 08 Aug 1998 15:45:30 -0700, Grey <Astra…@pacbell.net

wrote: shelly wrote: On Fri, 7 Aug 1998, Grey wrote: I was mainly objecting to the labeling of this list as a list of the ten most dangerous drugs, when they are the ten most complained-about drugs.  Please note that cocaine, barbiturates, amphetamines, and morphine were conspiciously absent from this list…they are all probably far more dangerous than any of the drugs on the list…but, few people on them complain about them. -Grey-         Who ever labeled it the 10 Most Dangerous Drugs?          I know I referred to this list as the 10 most complained about drugs listed by the FDA. Or is this an example of the distortion of the record that goes on here all too frequently, and mere repetition of a charge takes on a life of its own? Like the old "telephone game" children play?         Can you direct me to the post where it was claimed that the FDA List was the 10 Most Dangerous Drugs?<snip Thank you for clearing this up for me. If you’re interested in that information, I suggest you go to Dejanews and look it up, rather than assigning this task to someone else.

So you made a baseless allegation, then?  I don’t get the opportunity to check deja news as often as I used to, but I was wondering what you were referring to so I took the time to search for this.  I can’t find where it was referred to as the ten "most dangerous" drugs… Maybe it wasn’t. Lianne To reply by e-mail, remove "seesig." from my address.  No spam, no announcements, no commercial e-mail, no mailing lists.

Response:

On Wed, 12 Aug 1998, Lianne McNeil wrote:

If you’re interested in that information, I suggest you go to Dejanews and look it up, rather than assigning this task to someone else.

Wendy

So you made a baseless allegation, then?  I don’t get the opportunity to check deja news as often as I used to, but I was wondering what you were referring to so I took the time to search for this.  I can’t find where it was referred to as the ten "most dangerous" drugs… Maybe it wasn’t. Lianne

        Yup, posting to this newsgroup is like getting hit in a drive-by shooting. I never said it was the 10 most "dangerous" drug list. But Wendy said that -someone- said that, and that she was darned irritated that someone had. So take that, you someone. shelly

Response:

Shelly wrote:

      Yup, posting to this newsgroup is like getting hit in a

drive-by

shooting. I never said it was the 10 most "dangerous" drug list. But Wendy said that -someone- said that, and that she was darned irritated that someone had. So take that, you someone.

Doing a powersearch in Dejanews for the period of time from jul  1 1998 thru Aug 12 1998  I find 5 posts I made that contain the word dangerous and none of them were about the adverse experience list, and the only one that contained the word irritated had it as part of Shelly’s post. Wendy hypo…@aol.com

Response:

Grey (Astra…@pacbell.net) wrote:

: I was mainly objecting to the labeling of this list as a list of the ten : most dangerous drugs, when they are the ten most complained-about : drugs.  Please note that cocaine, barbiturates, amphetamines, and : -Grey-         My deepest apology to Wendy for mistating her position. I was clearly misquoting her as the public record shows. It was Grey who found that "someone" had labeled this list of top ten adverse drug reactions as the list of the ten most dangerous drugs. The search for that "someone continues." shelly

Response:

On Fri, 7 Aug 1998, Grey wrote:

I was mainly objecting to the labeling of this list as a list of the ten most dangerous drugs, when they are the ten most complained-about drugs.  Please note that cocaine, barbiturates, amphetamines, and morphine were conspiciously absent from this list…they are all probably far more dangerous than any of the drugs on the list…but, few people on them complain about them. -Grey-

        Who ever labeled it the 10 Most Dangerous Drugs?          I know I referred to this list as the 10 most complained about drugs listed by the FDA. Or is this an example of the distortion of the record that goes on here all too frequently, and mere repetition of a charge takes on a life of its own? Like the old "telephone game" children play?         Can you direct me to the post where it was claimed that the FDA List was the 10 Most Dangerous Drugs? I would hate to think that you were some how implying that I was making this claim as I was the one who mentioned this list again, after Robert’s original posting of it. Thank you for clearing this up for me.         What struck me was how many of the drugs were prescribed more to women out of the top 10. But that could be because women may complain more readily, where as men may just stop taking the drug.         Also it is interesting that often the placebo is a milk-sugar (lactose) pill which can explain why so many of the placebo takers register in with the intestinal ailments, many are lactose intolerant. Do you suppose this is intentionally done to skew some observations about placebos? Why not just use a sucrose pill?         Also on another thread. How many calories in a few teaspoons of heavy creme? Why not use it. Who says the world "accepts" that a "high-fat" diet is a current no-no? Show me the proof for anything about diet, drugs and cholesterol, especially for women.  shelly

Response:

In article <35CAE3FC.637FF…@pacbell.net

, Grey  <Astra…@pacbell.net wrote: Exactly.  I would add my encouragement that people learn how to draw conclusions from statistical information that is presented.  The information on that site doesn’t have Fosamax leading a list of dangerous drugs.  It has Fosamax receiving the most complaints about drugs, which is still only 3.5% of complaints about all drugs.  This means that out of 1000 people taking Fosamax, 35 complain about it.

Just a question for clarification, Grey — wouldn’t the "3.5 percent of complaints about all drugs" statement actually translate to "Out of 1000 people complaining about the drugs they take, 35 complained about Fosamax?" That seems to me a subtle but important difference from the way you put it. (I really don’t know or care a thing about Fosamax, per se; this is just part of my lifelong effort to wrap my brain around statistical information). –Pat Kight kig…@peak.org

Response:

- Hide quoted text — Show quoted text -Pat Kight wrote:

In article <35CAE3FC.637FF…@pacbell.net, Grey  <Astra…@pacbell.net wrote: Exactly.  I would add my encouragement that people learn how to draw conclusions from statistical information that is presented.  The information on that site doesn’t have Fosamax leading a list of dangerous drugs.  It has Fosamax receiving the most complaints about drugs, which is still only 3.5% of complaints about all drugs.  This means that out of 1000 people taking Fosamax, 35 complain about it. Just a question for clarification, Grey — wouldn’t the "3.5 percent of complaints about all drugs" statement actually translate to "Out of 1000 people complaining about the drugs they take, 35 complained about Fosamax?" That seems to me a subtle but important difference from the way you put it.

Yes, I think that is right.  I wrote that post towards the end of a bout of insomnia–I was probably running a few cells short of a full charge. By the way, this morning beginning at one I watched a great HBO movie about a women’s choir started by internment camp prisoners in Sumatra during WWII, then watched, "Silkwood," then read a chapter or so of "A Passage to India," then jumped on the Internet when I got tired of flopping around the bed looking for passive entertainment.

(I really don’t know or care a thing about Fosamax, per se; this is just part of my lifelong effort to wrap my brain around statistical information).

I don’t either, and I asked at the nursing department at work and they had no clue, either!   I was mainly objecting to the labeling of this list as a list of the ten most dangerous drugs, when they are the ten most complained-about drugs.  Please note that cocaine, barbiturates, amphetamines, and morphine were conspiciously absent from this list…they are all probably far more dangerous than any of the drugs on the list…but, few people on them complain about them. — -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~- -Grey- -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~-

Response:

Hypoint wrote:

Thank you.  Found it.  It would be interesting to see a cross correlation with # of prescriptions for the year.

I would like to see this, too. What I *did* see there was a percentile ranking of drugs by number of ADE (adverse drug experiences). For Fosamax, the MOST COMPLAINED ABOUT DRUG… the number of ADE complaints was 3.5%  THREE AND ONE-HALF PERCENT. That’s percentage of all complaints made about all drugs, not even percentage of people on Fosamax who complain. This is a great example of how it’s possible to skew statistics without even changing the numbers. "Fosamax is the MOST COMPLAINED ABOUT DRUG ON THE MARKET!" "Fosamax is responsible for 3.5% of all drug complaints, and is the drug with the most reported adverse reactions, the largest of which is probably that it doesn’t work as well as people had hoped." Both these statements are true. I checked out some more of the information on that site, and I found that there are breakdowns for the type of complaints and the duration of complaints.  The overwhelming majority of complaints were during the first day of taking any medication.   The reason for complaint that presented most often (10% of cases) was that the drug didn’t affect symptoms, i.e., "didn’t work." Also presented on that site was information that showed that repeat occurrences were not applicable 99% of the time. This means that people have an adverse effect, then stop taking the medication.

Re Estraderm.  Since Rashes / Skin adverse effects was relatively high for hormones / synthetics I would expect there was a significant number of reactions to the adhesive  used.

I agree, and I also think it should be noted that "hormones" means ALL drugs in that class, including drugs such as Prednisone.  I have had to take Prednisone for asthma; it is an awful drug.  The side effects are terrible. Still, if the only thing that helps one to breathe…  One of its side effects is rashes and skin disturbances.

It is an interesting site.  I would encourge people to browse it to put quotes about information on it into perspective.

Exactly.  I would add my encouragement that people learn how to draw conclusions from statistical information that is presented.  The information on that site doesn’t have Fosamax leading a list of dangerous drugs.  It has Fosamax receiving the most complaints about drugs, which is still only 3.5% of complaints about all drugs.  This means that out of 1000 people taking Fosamax, 35 complain about it. According to information given at the site, probably the majority of these complaints are that the medication doesn’t work (or, since the majority of complainants stop taking the medicine within the first day, it means that the majority of people complaining about Fosamax complain because they take a dose and it doesn’t "work," i.e., they don’t feel better).  The issue here might be that the medication doesn’t work fast enough.  The overwhelming reason people give for complaining about a drug?  Whole-body discomfort, i.e., they just don’t feel good on the drug.  Besides the drug just plain not working (or not working fast enough), the next reasons for stopping appear to deal with side effects…headache (3.2% of all complaints), rash/skin reaction (4.8%), diarrhea (1.5%). Does this indicate that Fosamax is a dangerous drug?  No.  That is an unethical conclusion based on poor science and the use of figures to manipulate people. What does the site say about Fosamax? Out of 1000 people who take it, 35 complain about it. 16-17 of those people stop taking it the first day. 3-4 people stop taking it/complain about it because it doesn’t work quickly enough to assuage their symptoms. Another 1-2 people stop taking it because it gave them a headache, or they thought it did. Another 2-3 people stop taking it or complain because they get a rash or other reaction to it. Another 1-2 people stop taking it or complain because they felt it gave them diarrhea. What these numbers say (I rounded to avoid having .5 people, etc.) is that of 1000 people taking Fosamax, 35 people have problems.  11 of these people have problems that are not life threatening in the least. Three or four of those people will stop taking Fosamax the first day. 1-2 more will stop within the first week, and another 3-5 will stop taking it within the first month. THAT IS ALL THOSE NUMBERS SAY!!!!!   These aren’t "dangerous," i.e., life-threatening reasons to stop taking a drug.  It’s simply people’s preferences based on drug effectiveness versus uncomfortable side effects.  It’s ridiculous to conclude from data like these that Fosamax is a harmful or dangerous drug.  I just chose the first drug on the list and crunched some numbers.  I encourage everyone else to go to this site and crunch the numbers for yourselves vis-a-vis hormone therapy. I do agree with the person who said that this group is a far cry from a peer-reviewed board.  This group is full of people who want to sell you something.  It may be their yam cream…or it may be their ideology. THINK for yourselves.  The yam creamers aren’t the only ones on this group who don’t know squat about science and who are peddling crap. Fear tactics aren’t the exclusive domain of the pharmaceutical companies. — -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~- -Grey- -~~*~~-~~*~~-~~*~~-~~*~~-~~*~~-*~~-*~~-*~~-

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