Question:

– Hide quoted text — Show quoted text – deleted for space I swear to you, this kid has witnessed no trauma, that I know of, but I do know my proteins, and do extensive research, viruses are very capable entities. you bet they are  My husband comes home from work and we try to eat together as much as possible, which most families don’t.  I teach on Thursday nights and Friday, day.  Big deal, obviously I study, but that’s not going to traumatize a kid, usually they follow the parents lead and it’s a positive thing, teaches them school is important, not TV or video games. The only drug he’s taken was Omnicef did he take  this for more then 7 days?

Yup 20 days!!!!I think, he may have taken it before, not sure… – Hide quoted text — Show quoted text – ever take it before?  Blood work on a standard sma 12 cbc and diff? what were they-did they show any elevated alt, al phos, bun???? Even slightly elevated-omnicef is a good cephalosporin but pretty potent and hard on the liver and kidneys-being your son is a small child it may or could have thrown those systems out of wack-causing a kind of toxic response which in time will go back to normal–just shooting in the dark here- You’re shooting more towards my research and logic.  People need to understand the immense "grey area" and Motrin when he was sick. Then when the GI guy says he had "functional abdominal pain?! in mid March, he was on Carafate and Prevacid, which IMO, he should not have been given Prevacid, and he’s not taking anything now , except Amy.   No antivirals.. I had to add Diovan 80, to my 25mg. Atenolol yesterday, my BP was very high you don’t know from high, mines high-diovan makes me sick and so does atenolol-I will most likely strok eout one day while eating a meatball sub

OMG, atleast you’ll die happy..LOL, I haven’t eaten anything evil and "white" sugar in 2 years, don’t miss it.  Give me a pound of King crab legs, ceasar salad,  with a pound of butter and I’m happy, my tris were 56, so it works…Doesn’t mean I’m still not a mess, just cause my body looks good. and I got extrmely lightheaded in my kitchen, scary, but thankfully he didn’t see me since he was at school.  Today, I’m a walking Zombie, extreme tiredness, but it dropped my diastolic 20+ points overnight, so it’s doing it’s job.  That side effect better go away or people are gonna think I’m stoned. it may very well all be artifacts of his virus load-give it some time and don’t let any psychiatrist start with the med merry go round-get other opinions if needed

Oh absolutely….I know they’re gonna try… thanks for all the awesome advice.  we’re definately on the same page.. – Hide quoted text — Show quoted text -Maria I’ve also signed up for my final classes to go to PA school, which for me is therapy, to get my life back and have some chem. students to teach again, I just hope I don’t get 3 different chem. levels, like I had, that was a bit much.. Thanks again everyone for your support..You guys are great. On a lighter note.  If anyone is from the Philly area and watched channel 6 ABC news last night, I was the person interviewed in front of my garage about having stuff stolen from cars and garages, I said it was beer which was true as well but they edited my social commentary, LOL. My DH actually had his laptop stolen from his car which was property of a Nuclear plant, they left that part out., as I asked them to, but they knew, or why else would they have parked right in front of my house!?.  So FYI, everybody in suburbia, college kids have a racket going where they steal electronic stuff and sell it on EBAY, lock the cars and the garage. It’s great being back… Maria — The charter is available at: http://readystump.algebra.com/~asapm — The charter is available at: http://readystump.algebra.com/~asapm

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

deleted for space I swear to you, this kid has witnessed no trauma, that I know of, but I do know my proteins, and do extensive research, viruses are very capable entities.

you bet they are   My husband comes home from work and we try to eat together as much as possible, which most families don’t.  I teach on Thursday nights and Friday, day.  Big deal, obviously I study, but that’s not going to traumatize a kid, usually they follow the parents lead and it’s a positive thing, teaches them school is important, not TV or video games. The only drug he’s taken was Omnicef

did he take  this for more then 7 days? ever take it before?  Blood work on a standard sma 12 cbc and diff? what were they-did they show any elevated alt, al phos, bun???? Even slightly elevated-omnicef is a good cephalosporin but pretty potent and hard on the liver and kidneys-being your son is a small child it may or could have thrown those systems out of wack-causing a kind of toxic response which in time will go back to normal–just shooting in the dark here-  and Motrin when he was sick. Then when the GI guy says he had "functional abdominal pain?! in mid March, he was on Carafate and Prevacid, which IMO, he should not have been given Prevacid, and he’s not taking anything now , except Amy.   No antivirals.. I had to add Diovan 80, to my 25mg. Atenolol yesterday, my BP was very high

you don’t know from high, mines high-diovan makes me sick and so does atenolol-I will most likely strok eout one day while eating a meatball sub and I got extrmely lightheaded in my kitchen, scary, but thankfully he didn’t see me since he was at school.  Today, I’m a walking Zombie, extreme tiredness, but it dropped my diastolic 20+ points overnight, so it’s doing it’s job.  That side effect better go away or people are gonna think I’m stoned.

it may very well all be artifacts of his virus load-give it some time and don’t let any psychiatrist start with the med merry go round-get other opinions if needed – Hide quoted text — Show quoted text -Maria I’ve also signed up for my final classes to go to PA school, which for me is therapy, to get my life back and have some chem. students to teach again, I just hope I don’t get 3 different chem. levels, like I had, that was a bit much.. Thanks again everyone for your support..You guys are great. On a lighter note.  If anyone is from the Philly area and watched channel 6 ABC news last night, I was the person interviewed in front of my garage about having stuff stolen from cars and garages, I said it was beer which was true as well but they edited my social commentary, LOL. My DH actually had his laptop stolen from his car which was property of a Nuclear plant, they left that part out., as I asked them to, but they knew, or why else would they have parked right in front of my house!?.  So FYI, everybody in suburbia, college kids have a racket going where they steal electronic stuff and sell it on EBAY, lock the cars and the garage. It’s great being back… Maria — The charter is available at: http://readystump.algebra.com/~asapm

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi everyone. I may have violated the posting rules, but I knew the last week would be tumultuous. We took my son to NYU where he had an excellent evaluation.  The doc would have preferred to have admitted him "inpatient" on multiple symptoms, but my DH(take that as you will), didn’t think it would be convenient.. I was NOT in agreement with him, but the doctor really wanted both our consent. Anyway, between the trip, the flooding in NJ, multiple visits from social workers from his school district and numerous phone calls to school administrators I’m back. The local neurologists here feel he has Conversion disorder, which is certainly possible, as far as many of his symptoms, but would be very unusual for a kid his age, then again Kleine-Levin syndrome is unusual also, but who knows, he exhibits elements of both, that’s why I feel the team at NYU would have been optimal in getting to the WHY part of a diagnosis. Either way, these conditions are generally treated on a psychiatric basis. Conversion Disorder bothers me, in that there is no trauma like death in the family, divorce, abuse, etc..  He just got sick, that’s why I firmly believe, there’s an organic overlap from a virus.  I do have an appt. with a psychiatrist on may 2 and he saw his local neurologist yesterday, who is very nice.  But more importantly, he’s doing much better, almost like he did have somewhat of a "spontaneous recovery", but still sleeps 15+ hours a day and is unwakeable at times. The poor kid "falls asleep" at school sitting up, so hopefully the psychiatrist can deal with this aspect.  The EEG done at NYU said it wasn’t a true sleep, so he’s confusing the heck out of me, but as long as he’s so much better than last week, a huge amount of stress is lifted from me, even though the NY doc, made me aware it probably wouldn’t last.  For now, I’m so happy to see my child functional again, compared to what he was.  Margrove, Conversion Disorder in a 9 y/o with extreme hypersomnia and no conscious trauma??????? I’ve also signed up for my final classes to go to PA school, which for me is therapy, to get my life back and have some chem. students to teach again, I just hope I don’t get 3 different chem. levels, like I had, that was a bit much.. Thanks again everyone for your support..You guys are great. On a lighter note.  If anyone is from the Philly area and watched channel 6 ABC news last night, I was the person interviewed in front of my garage about having stuff stolen from cars and garages, I said it was beer which was true as well but they edited my social commentary, LOL. My DH actually had his laptop stolen from his car which was property of a Nuclear plant, they left that part out., as I asked them to, but they knew, or why else would they have parked right in front of my house!?.  So FYI, everybody in suburbia, college kids have a racket going where they steal electronic stuff and sell it on EBAY, lock the cars and the garage. It’s great being back… Maria — The charter is available at: http://readystump.algebra.com/~asapm

Response:

<gently snipped :: For now, I’m so happy to see my child functional again, ::compared to what he was.  Margrove, Conversion Disorder in a 9 y/o with ::extreme hypersomnia and no conscious trauma??????? I’m glad David is doing so much better. Sounds like you got some possible answers. David is in good hands. Wishing David continued improvement. ::I’ve also signed up for my final classes to go to PA school, which for me is ::therapy, to get my life back and have some chem. students to teach again, I ::just hope I don’t get 3 different chem. levels, like I had, that was a bit ::much.. Wishing you lots of success with your last class. Jackie ~*~No matter where you go or what you do, you live your entire life within the confines of your head~*~         – Terry Josephson — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi everyone. I may have violated the posting rules, but I knew the last week would be tumultuous.

rules/ what rules? We took my son to NYU where he had an excellent evaluation.  The doc would have preferred to have admitted him "inpatient" on multiple symptoms, but my DH(take that as you will), didn’t think it would be convenient.. I was NOT in agreement with him, but the doctor really wanted both our consent.

what is your relationship with your dh and when was the break up? How old was your son and how did it effect him? Anyway, between the trip, the flooding in NJ, multiple visits from social workers from his school district and numerous phone calls to school administrators I’m back. The local neurologists here feel he has Conversion disorder, which is certainly possible, as far as many of his symptoms, but would be very unusual for a kid his age, then again Kleine-Levin syndrome is unusual also, but who knows, he exhibits elements of both, that’s why I feel the team at NYU would have been optimal in getting to the WHY part of a diagnosis.

they mentioned KL syndrome? What basis? Hypersomina and personality changes alone aren’t conclusive-did they do any psychological tests or did anyone along the way-if so what? Either way, these conditions are generally treated on a psychiatric basis. Conversion Disorder bothers me, in that there is no trauma like death in the family, divorce, abuse, etc..

Dh means divorced husband no?  There are other subtle forms of trauma you mau need to dig a bit deeper into this  He just got sick, that’s why I firmly believe, there’s an organic overlap from a virus.

could be  I do have an appt. with a psychiatrist on may 2 and he saw his local neurologist yesterday, who is very nice.  But more importantly, he’s doing much better, almost like he did have somewhat of a "spontaneous recovery", but still sleeps 15+ hours a day and is unwakeable at times. The poor kid "falls asleep" at school sitting up, so hopefully the psychiatrist can deal with this aspect.

before elavil, during elavil?   The EEG done at NYU said it wasn’t a true sleep,

you mean in school?  What kind of sleep is true? I would imagine he drops quickly into rem at school or when he seems to drop off into a nap  so he’s confusing the heck out of me, but as long as he’s so much better than last week, a huge amount of stress is lifted from me, even though the NY doc, made me aware it probably wouldn’t last.

Could your son be overempathetic to your gestalt? If your nervous, he’s nervous, you become calm he becomes calm-sort of an empath   For now, I’m so happy to see my child functional again, compared to what he was.  Margrove, Conversion Disorder in a 9 y/o with extreme hypersomnia and no conscious trauma???????

tox screen, therapeutic evaluation, psychometric testing, endocrine and metabolic testing , and a session with you in the room with a psychologist to see how he interacts–does he spontaneously play, have any imaginative friends, any attachments to certain toys or stuffed animals, pets etc-his life under a mircroscope would be helpful for a diff dx and prog and treatment-elavil is pretty safe stuff, he seems to be doing better, since the drug takes about 8 weeks to kick in in terms of depression, he may even get better -his conditon may go away on its own-who knows-I would feel more comfortable knowing more 15 hours of sleep per day for a child his age is not average, nor are many of the things you already reported most importablty seizures and dehydration, passing out etc…  if we lived in Victorian Germany and he was a youg girl who witnessed a rape I could buy a conversion syndrome, or if he saw a naked women and realized she doesn’t have a penis and he was traumatized-but all this is sheere bullshit anyway- unless you  or your ex have traumatized him or some bully at school, a teacher, a class, some nightmares-I would go for a "illness" by virus- what drugs has he ben given over this period of time-any antivirals, antibiotics, antihistamines, antemetics etc…. an enigma it seems – Hide quoted text — Show quoted text -I’ve also signed up for my final classes to go to PA school, which for me is therapy, to get my life back and have some chem. students to teach again, I just hope I don’t get 3 different chem. levels, like I had, that was a bit much.. Thanks again everyone for your support..You guys are great. On a lighter note.  If anyone is from the Philly area and watched channel 6 ABC news last night, I was the person interviewed in front of my garage about having stuff stolen from cars and garages, I said it was beer which was true as well but they edited my social commentary, LOL. My DH actually had his laptop stolen from his car which was property of a Nuclear plant, they left that part out., as I asked them to, but they knew, or why else would they have parked right in front of my house!?.  So FYI, everybody in suburbia, college kids have a racket going where they steal electronic stuff and sell it on EBAY, lock the cars and the garage. It’s great being back… Maria

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

thank you he really is doing "much" better. I love school… Maria

– Hide quoted text — Show quoted text – <gently snipped :: For now, I’m so happy to see my child functional again, ::compared to what he was.  Margrove, Conversion Disorder in a 9 y/o with ::extreme hypersomnia and no conscious trauma??????? I’m glad David is doing so much better. Sounds like you got some possible answers. David is in good hands. Wishing David continued improvement. ::I’ve also signed up for my final classes to go to PA school, which for me is ::therapy, to get my life back and have some chem. students to teach again, I ::just hope I don’t get 3 different chem. levels, like I had, that was a bit ::much.. Wishing you lots of success with your last class. Jackie ~*~No matter where you go or what you do, you live your entire life within the confines of your head~*~        - Terry Josephson — The charter is available at: http://readystump.algebra.com/~asapm

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

– Hide quoted text — Show quoted text – Hi everyone. I may have violated the posting rules, but I knew the last week would be tumultuous. rules/ what rules? We took my son to NYU where he had an excellent evaluation.  The doc would have preferred to have admitted him "inpatient" on multiple symptoms, but my DH(take that as you will), didn’t think it would be convenient.. I was NOT in agreement with him, but the doctor really wanted both our consent. what is your relationship with your dh and when was the break up? How old was your son and how did it effect him?

We’re still married. LOL  DH (dear husband or d*** head) bad web lingo – Hide quoted text — Show quoted text -Anyway, between the trip, the flooding in NJ, multiple visits from social workers from his school district and numerous phone calls to school administrators I’m back. The local neurologists here feel he has Conversion disorder, which is certainly possible, as far as many of his symptoms, but would be very unusual for a kid his age, then again Kleine-Levin syndrome is unusual also, but who knows, he exhibits elements of both, that’s why I feel the team at NYU would have been optimal in getting to the WHY part of a diagnosis. they mentioned KL syndrome? What basis? Hypersomina and personality changes alone aren’t conclusive-did they do any psychological tests or did anyone along the way-if so what?

No..psychological  tests, just a neuro  exam and EEG, same stuff he’s had here, but he was examined for a very prolonged period and just was having a multitude of symptoms at the visit.  They really wanted to admit to study him further.  He "fell" asleep during the EEG there and I guess it wasn’t a true sleep state?!  I don’t know.  You guys are the experts.  The "seizure" activity wasn’t epileptic either, no surprise there.. Either way, these conditions are generally treated on a psychiatric basis. Conversion Disorder bothers me, in that there is no trauma like death in the family, divorce, abuse, etc.. Dh means divorced husband no?  There are other subtle forms of trauma you mau need to dig a bit deeper into this

School, never liked his teacher, but he’s been with her since the end of August, so nothing was sudden.  I’m not totally on board with Conversion Disorder, maybe but everything occurred after getting sick.  He’s very bright, plays guitar, (self taught) and is a good little boy.  All the sudden everything just changed. I’m getting him to the psych, but we all know you can’t get an appt. quickly. – Hide quoted text — Show quoted text – He just got sick, that’s why I firmly believe, there’s an organic overlap from a virus. could be I think the docs were leaning in that direction as well. I do have an appt. with a psychiatrist on may 2 and he saw his local neurologist yesterday, who is very nice.  But more importantly, he’s doing much better, almost like he did have somewhat of a "spontaneous recovery", but still sleeps 15+ hours a day and is unwakeable at times. The poor kid "falls asleep" at school sitting up, so hopefully the psychiatrist can deal with this aspect. before elavil, during elavil?  The EEG done at NYU said it wasn’t a true sleep, you mean in school?  What kind of sleep is true? I would imagine he drops quickly into rem at school or when he seems to drop off into a nap

He falls asleep as soon as I put him in the car or even at the dinner table, just whenever, but he’s unwakeable .  Though yesterday, fine. the kid did his homework as I insturcted him to do then was playing his guitar like nothing was wrong.???? so he’s confusing the heck out of me, but as long as he’s so much better than last week, a huge amount of stress is lifted from me, even though the NY doc, made me aware it probably wouldn’t last. Could your son be overempathetic to your gestalt? If your nervous, he’s nervous, you become calm he becomes calm-sort of an empath

I suppose it’s possible, no doubt, but he’s doing the same kind of behavior with objective outsiders, so who knows. – Hide quoted text — Show quoted text –  For now, I’m so happy to see my child functional again, compared to what he was.  Margrove, Conversion Disorder in a 9 y/o with extreme hypersomnia and no conscious trauma??????? tox screen, therapeutic evaluation, psychometric testing, endocrine and metabolic testing , and a session with you in the room with a psychologist to see how he interacts–does he spontaneously play, have any imaginative friends, any attachments to certain toys or stuffed animals, pets etc-his life under a mircroscope would be helpful for a diff dx and prog and treatment-elavil is pretty safe stuff, he seems to be doing better, since the drug takes about 8 weeks to kick in in terms of depression, he may even get better -his conditon may go away on its own-who knows-I would feel more comfortable knowing more

Hopefully, all you mentioned will be done.  Very strong attatchment to his cat and I mentioned to the doctor a few years ago, whom I worked for that he had a friend named "David", that’s his name, and David tells him things.  He said most kids have imaginary friends, dont’ worry about it. Well, now it may be an issue. 15 hours of sleep per day for a child his age is not average, nor are many of the things you already reported most importablty seizures and dehydration, passing out etc…  if we lived in Victorian Germany and he was a youg girl who witnessed a rape I could buy a conversion syndrome, or if he saw a naked women and realized she doesn’t have a penis and he was traumatized-but all this is sheere bullshit anyway- unless you  or your ex have traumatized him or some bully at school, a teacher, a class, some nightmares-I would go for a "illness" by virus- what drugs has he ben given over this period of time-any antivirals, antibiotics, antihistamines, antemetics etc…. an enigma it seems

I swear to you, this kid has witnessed no trauma, that I know of, but I do know my proteins, and do extensive research, viruses are very capable entities.  My husband comes home from work and we try to eat together as much as possible, which most families don’t.  I teach on Thursday nights and Friday, day.  Big deal, obviously I study, but that’s not going to traumatize a kid, usually they follow the parents lead and it’s a positive thing, teaches them school is important, not TV or video games. The only drug he’s taken was Omnicef and Motrin when he was sick. Then when the GI guy says he had "functional abdominal pain?! in mid March, he was on Carafate and Prevacid, which IMO, he should not have been given Prevacid, and he’s not taking anything now , except Amy.   No antivirals.. I had to add Diovan 80, to my 25mg. Atenolol yesterday, my BP was very high and I got extrmely lightheaded in my kitchen, scary, but thankfully he didn’t see me since he was at school.  Today, I’m a walking Zombie, extreme tiredness, but it dropped my diastolic 20+ points overnight, so it’s doing it’s job.  That side effect better go away or people are gonna think I’m stoned. Maria – Hide quoted text — Show quoted text -I’ve also signed up for my final classes to go to PA school, which for me is therapy, to get my life back and have some chem. students to teach again, I just hope I don’t get 3 different chem. levels, like I had, that was a bit much.. Thanks again everyone for your support..You guys are great. On a lighter note.  If anyone is from the Philly area and watched channel 6 ABC news last night, I was the person interviewed in front of my garage about having stuff stolen from cars and garages, I said it was beer which was true as well but they edited my social commentary, LOL. My DH actually had his laptop stolen from his car which was property of a Nuclear plant, they left that part out., as I asked them to, but they knew, or why else would they have parked right in front of my house!?.  So FYI, everybody in suburbia, college kids have a racket going where they steal electronic stuff and sell it on EBAY, lock the cars and the garage. It’s great being back… Maria — The charter is available at: http://readystump.algebra.com/~asapm

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

Question:

My doctor has me on effexor XR, and on tagamet as needed for a syndrome that seems to be based on a small hiatal hernia.  The result is a pretty raw, stinging, pain in the lower esophagus.  You feel like you’ve tried to digest a ball of barbed wire.  I’m surprised not to be vomiting blood. My GERD must be throwing all kinds of acid, bile, pepsin you name it up my esophagus the past couple week. caises all kinds of erosion.  Quite a flareup.  Makes me not want to leave the house. I’m on the antacid pills, and antacid liquids.   I’ve curtailed eating or drinking within five hours of bed.  So I should be better in a couple days.  But is there any medication or herb or tea that could help the tissues become less inflamed and hot and sensitive.  The pain is rather distracting. Is there any medication that can reduce inflammation in this case?  Is there some sort of deadeaning agent like they use on sore throats that could be drank or otherwise applied to those sensitive tissues?  Seems like a shot of cepostat or Choroseptic should work wonders, right?

Response:

- Hide quoted text — Show quoted text – My doctor has me on effexor XR, and on tagamet as needed for a syndrome that seems to be based on a small hiatal hernia.  The result is a pretty raw, stinging, pain in the lower esophagus.  You feel like you’ve tried to digest a ball of barbed wire.  I’m surprised not to be vomiting blood. My GERD must be throwing all kinds of acid, bile, pepsin you name it up my esophagus the past couple week. caises all kinds of erosion.  Quite a flareup.  Makes me not want to leave the house. I’m on the antacid pills, and antacid liquids.   I’ve curtailed eating or drinking within five hours of bed.  So I should be better in a couple days.  But is there any medication or herb or tea that could help the tissues become less inflamed and hot and sensitive.  The pain is rather distracting. Is there any medication that can reduce inflammation in this case?  Is there some sort of deadeaning agent like they use on sore throats that could be drank or otherwise applied to those sensitive tissues?  Seems like a shot of cepostat or Choroseptic should work wonders, right?

Have you had an *endoscopy*? It seems somebody (preferably a doctor should look inside your esophagus and stomach as you still have so much pain the meds notwithstanding. Philip

Response:

You indeed should be a little better in a couple of days.  If you aren’t, you should see a gastroenterologist.  I personally hate Tagamet (have fought with esophageal problems for about 17 years now) because it interacts with the metabolism of SO many other drugs, including Effexor XR.  Tagamet would have been an ok drug to prescribe back in the 1970’s, but now that we have proton pump inhibitors (PPI’s) like Nexium and Prevacid, Prilosec, Aciphex and Protonix (which will raise the gastric pH significantly more than an H2 blocker like Tagamet), I don’t see why he wouldn’t use one of those for you. Then again, I don’t know your whole situation.  Nonetheless, Tagamet is the oldest one of them all, has the highest capacity for drug interactions, and has a pretty hefty list of potential side effects.  For a few days, it probably won’t matter, but if you end up needing to take a stomach acid reducer for any long-term period, I’d ask for a different one, preferably a PPI.  The one significant disadvantage to PPI’s is that they are quite expensive, averaging about 145.00 a month to take – however the results are so much better that I happily hand it over every month. They do make a 2% viscous lidocaine product, which is added to hospital emergency room "GI cocktail", however I don’t know if that would be appropriate or helpful for you or not.  If you smoke, stop immediately. Discontinue peppermint of any type also.  I doubt that you’ll have any positive result from Chloraseptic or Cepastat; in fact, I’d suspect they will bother your problem more.  If you aren’t better in a few days, call a GI specialist.  Make sure that when you lie down to go to sleep that there is nothing in your stomach except 30 mls of Maalox or a comparable product. Was there any relationship between the onset of this gastric upset and starting Effexor ? Gary ps:  interestingly Xanax is reported to have a somewhat deleterious effect on gastric reflux – I had it before Xanax, and I still have it, so I have nothing to compare to.

– Hide quoted text — Show quoted text – My doctor has me on effexor XR, and on tagamet as needed for a syndrome that seems to be based on a small hiatal hernia.  The result is a pretty raw, stinging, pain in the lower esophagus.  You feel like you’ve tried to digest a ball of barbed wire.  I’m surprised not to be vomiting blood. My GERD must be throwing all kinds of acid, bile, pepsin you name it up my esophagus the past couple week. caises all kinds of erosion.  Quite a flareup.  Makes me not want to leave the house. I’m on the antacid pills, and antacid liquids.   I’ve curtailed eating or drinking within five hours of bed.  So I should be better in a couple days.  But is there any medication or herb or tea that could help the tissues become less inflamed and hot and sensitive.  The pain is rather distracting. Is there any medication that can reduce inflammation in this case?  Is there some sort of deadeaning agent like they use on sore throats that could be drank or otherwise applied to those sensitive tissues?  Seems like a shot of cepostat or Choroseptic should work wonders, right?

Response:

I have fasted a couple nights for five or six hours before sleeping and that has improved me considerably.  I had an endoscopy in the summer of 98 and they saw inflammation and a small hiatal hernia but not a large enough one to recommend surgery.  You brought up some points on the tagemet I did not remember.  I don’t really like Prilosec since it doesnt seem to kick in as soon, but your msg has made me rethink this and perhaps I’ll go with Prilosec if I flare up again. – Hide quoted text — Show quoted text – You indeed should be a little better in a couple of days.  If you aren’t, you should see a gastroenterologist.  I personally hate Tagamet (have fought with esophageal problems for about 17 years now) because it interacts with the metabolism of SO many other drugs, including Effexor XR.  Tagamet would have been an ok drug to prescribe back in the 1970’s, but now that we have proton pump inhibitors (PPI’s) like Nexium and Prevacid, Prilosec, Aciphex and Protonix (which will raise the gastric pH significantly more than an H2 blocker like Tagamet), I don’t see why he wouldn’t use one of those for you. Then again, I don’t know your whole situation.  Nonetheless, Tagamet is the oldest one of them all, has the highest capacity for drug interactions, and has a pretty hefty list of potential side effects.  For a few days, it probably won’t matter, but if you end up needing to take a stomach acid reducer for any long-term period, I’d ask for a different one, preferably a PPI.  The one significant disadvantage to PPI’s is that they are quite expensive, averaging about 145.00 a month to take – however the results are so much better that I happily hand it over every month. They do make a 2% viscous lidocaine product, which is added to hospital emergency room "GI cocktail", however I don’t know if that would be appropriate or helpful for you or not.  If you smoke, stop immediately. Discontinue peppermint of any type also.  I doubt that you’ll have any positive result from Chloraseptic or Cepastat; in fact, I’d suspect they will bother your problem more.  If you aren’t better in a few days, call a GI specialist.  Make sure that when you lie down to go to sleep that there is nothing in your stomach except 30 mls of Maalox or a comparable product. Was there any relationship between the onset of this gastric upset and starting Effexor ? Gary ps:  interestingly Xanax is reported to have a somewhat deleterious effect on gastric reflux – I had it before Xanax, and I still have it, so I have nothing to compare to. My doctor has me on effexor XR, and on tagamet as needed for a syndrome that seems to be based on a small hiatal hernia.  The result is a pretty raw, stinging, pain in the lower esophagus.  You feel like you’ve tried to digest a ball of barbed wire.  I’m surprised not to be vomiting blood. My GERD must be throwing all kinds of acid, bile, pepsin you name it up my esophagus the past couple week. caises all kinds of erosion.  Quite a flareup.  Makes me not want to leave the house. I’m on the antacid pills, and antacid liquids.   I’ve curtailed eating or drinking within five hours of bed.  So I should be better in a couple days.  But is there any medication or herb or tea that could help the tissues become less inflamed and hot and sensitive.  The pain is rather distracting. Is there any medication that can reduce inflammation in this case?  Is there some sort of deadeaning agent like they use on sore throats that could be drank or otherwise applied to those sensitive tissues?  Seems like a shot of cepostat or Choroseptic should work wonders, right?

Response:

Question:

Hello: Concerning Prevacid and Nexium. Info on them always says, in effect, not for long term usage; just a few weeks. Is it that they just don’t know the long term effects, or is there a known problem in taking long term (indefinitely) ? I take Prevacid, and my son Nexium. My MD, and my son’s, both say to keep taking, that they don’t really know about long term effects (yet), and that it is O.K. to take on a "maintenace" basis. Seems to be based on the realization that any damage to the esophg. lining is "probably" much worse than any long term effects. Any information, or opinions, on this would be most appreciated. Thanks, Bob

Response:

– Hide quoted text — Show quoted text – Hello: Concerning Prevacid and Nexium. Info on them always says, in effect, not for long term usage; just a few weeks. Is it that they just don’t know the long term effects, or is there a known problem in taking long term (indefinitely) ? I take Prevacid, and my son Nexium. My MD, and my son’s, both say to keep taking, that they don’t really know about long term effects (yet), and that it is O.K. to take on a "maintenace" basis. Seems to be based on the realization that any damage to the esophg. lining is "probably" much worse than any long term effects. Any information, or opinions, on this would be most appreciated. Thanks, Bob

I’ve been taking 30mg of Prevacid for about 7 years and since I take an NSAID on a regular basis, and still experience some reflux problems, it was recommended I continue. I haven’t found any negative effects.  Recently my reflux has gotten worse and I’ve needed to go to 60mg Prevacid a day.  I don’t think, as yet, I’ve experienced negative effects even from this high dose. But I agree with your question and I fear we will only find out after we ourselves provide the data. Louise

Response:

Hi, I am also very concerned about the long-term use of medication, but do not see any alternative for me at the moment. I have been on Nexium for a year now – maintenance dose of 20 mg per day, but started on 40 mg for six weeks until I started to overdose www.rxlist.com www.drugs.com. Currently, I have to notch up the dose to 40 mg a few times a week to keep the disease under control. Untreated or untreatable GERD can lead to complications like narrowing of the oesophagus, Barret’s oesophagus, cancer, etc. Not to mention the miserable quality of life issues that accompany the disease. It is a catch-22 situation. Long-term drug use might also lead to cancer. There was a recent paper on www.medscape.com indicating that even long-term/frequent antibiotic use could be linked to certain types of cancer. I am not considering a operation a) because I have my GERD more or less under control with major life-style changes http://www.gicare.com/pated/ecdgs39.htm and judicious use of the medicine, but b) I have Crohn’s disease and my gut has already been operated on 4 times and I must be able to vomit (side-effect of the fundoplication GERD operation is the inability to vomit thereafter) because I have an intestinal narrowing (possible caused by adhesions), which severely affect what I can eat. The Stretta operation is apparently only 80% successful compared to ~100% for fundoplication (see posts at this newsgroup dated the end of January). All the best, Vanny Hello: Concerning Prevacid and Nexium. Info on them always says, in effect, not for long term usage; just a few weeks. Is it that they just don’t know the long term effects, or is there a known problem in taking long term (indefinitely) ? I take Prevacid, and my son Nexium. My MD, and my son’s, both say to keep taking, that they don’t really know about long term effects (yet), and that it is O.K. to take on a "maintenace" basis. Seems to be based on the realization that any damage to the esophg. lining is "probably" much worse than any long term effects. Any information, or opinions, on this would be most appreciated. Thanks, Bob

Response:

I posted earlier about blood tests showing that I had an inflamed liver and as it was something that had not shown up previously my Doctor suggested that it might have been caused by my recent Barium enema. As I have been having pain under my ribs and a rash on my forearms and blotches in other areas I started to do some searches with Google and found quite a number of references. Omeprazole-induced hepatotoxicity? From a 1998 case report       Discussion –  The WHO Data Base has collected 13,630 ADRs related to omeprazole, with more than 80 cases of hepatitis, 60 of jaundice and about 40 of cholestatic hepatitis. In contrast, only one case of severe symptomatic hepatotoxicity is described in the literature. Clinical studies reported minimal increase of liver enzymes only, in 1-5% of cases.       Conclusion – This case with reexposure, together with those reported internationally, suggests that hepatitis is a possible but obviously rare complication of omeprazole treatment.

Question:

After years of GERD and Prevacid, I’ve had a worsening of the condition over the last year or two and it has effected my voice. With this increased difficulty has come a great deal of bloating and frequent nausea. My doctor doubled the Prevacid, which the insurance wont pay for for very long and although it helped my voice, I still had the bloating and nausea. Dr. suggested I get an EKG to check for length of the Q (?).  It was normal. He then suggested I get a hold of some cisapride from international sources. A very low dose of the cisapride has worked wonders.  All bloating is gone and almost all nausea is gone.  But I do still have the acid refluxing into my throat. Wondering whether it’s safe to take a very small dose of cisapride approx. 2 times per day. Also, I have a feeling that I need to adjust the timing of the cisapride and the prevacid.  I’ve been taking them at the same time.  Any ideas about which might be taken first and how much time should elapse? Louise

Response:

Hi Louise, Have a look here www.rxlist.com for the side-effects and warnings regarding its use. You can consult www.drugs.com for drug interactions. It also recommends taking cisapride at least 15 minutes before meals and prevacid is normally taken an hour before meals. There are some very good recent reviews on GERD at www.medscape.com (requires a log in). I have no experience of using cisapride, but would probably not be prescribed it due to my heart failure. My GERD is also progressing slowly in the same direction as yours. I have started getting sleep apnoea (the cessation of breathing during sleep) as a result of the GERD, which is disconcerting and I am waking abruptly in the middle of the night. I assume that you have made all the lifestyle adjustments that you can http://www.gicare.com/pated/ecdgs39.htm. All the best, Vanny After years of GERD and Prevacid, I’ve had a worsening of the condition over the last year or two and it has effected my voice. With this increased difficulty has come a great deal of bloating and frequent nausea. My doctor doubled the Prevacid, which the insurance wont pay for for very long and although it helped my voice, I still had the bloating and nausea. Dr. suggested I get an EKG to check for length of the Q (?).  It was normal. He then suggested I get a hold of some cisapride from international sources. A very low dose of the cisapride has worked wonders.  All bloating is gone and almost all nausea is gone.  But I do still have the acid refluxing into my throat. Wondering whether it’s safe to take a very small dose of cisapride approx. 2 times per day. Also, I have a feeling that I need to adjust the timing of the cisapride and the prevacid.  I’ve been taking them at the same time.  Any ideas about which might be taken first and how much time should elapse? Louise

Response:

– Hide quoted text — Show quoted text – Hi Louise, Have a look here www.rxlist.com for the side-effects and warnings regarding its use. You can consult www.drugs.com for drug interactions. It also recommends taking cisapride at least 15 minutes before meals and prevacid is normally taken an hour before meals. There are some very good recent reviews on GERD at www.medscape.com (requires a log in). I have no experience of using cisapride, but would probably not be prescribed it due to my heart failure. My GERD is also progressing slowly in the same direction as yours. I have started getting sleep apnoea (the cessation of breathing during sleep) as a result of the GERD, which is disconcerting and I am waking abruptly in the middle of the night. I assume that you have made all the lifestyle adjustments that you can http://www.gicare.com/pated/ecdgs39.htm. All the best, Vanny After years of GERD and Prevacid, I’ve had a worsening of the condition over the last year or two and it has effected my voice. With this increased difficulty has come a great deal of bloating and frequent nausea. My doctor doubled the Prevacid, which the insurance wont pay for for very long and although it helped my voice, I still had the bloating and nausea. Dr. suggested I get an EKG to check for length of the Q (?).  It was normal. He then suggested I get a hold of some cisapride from international sources. A very low dose of the cisapride has worked wonders.  All bloating is gone and almost all nausea is gone.  But I do still have the acid refluxing into my throat. Wondering whether it’s safe to take a very small dose of cisapride approx. 2 times per day. Also, I have a feeling that I need to adjust the timing of

Thanks a lot.  I knew about rxlist.com, but not about drugs.com, which seems to have much more information. Interestingly, I had been taking the prevacid before meals but when I started the cisapride, also before meals, I was experiencing some reflux although the bloating and nausea has all but disappeared. The doctor suggested taking cisapride 15 minutes before meals and prevacid after meals – my one day experiment has been positive, but time will tell. Because I have some concerns about the potential problems with cisapride, I am trying to take as little as possible.   Therefore, I ordered 5 mg tablets and have found that for light meals (breakfast), I can cut that in half and I seem to still avoid the terrible nausea and bloating. Time will tell as it’s really only been a few days. Yes, I have made the "appropriate lifestyle changes" except for the fact that as I get older, it’s easy to put weight on and hard to take it off .  I’m not obese, but I certainly could lose 20 pounds. I will look at medscape as well and thanks again for your post. Louise

Response:

Question:

I have SHS Neocate for sale! TWO factory  SEALED CASES Of NEOCATE. 4 cans in each case. $130 for both cases. SHIPPING IS $20.00! the formula EXPIRES 6/2004!!! email me for more information.

Response:

I know this is really outdated, but I thought I’d give it a try.  My 5 week old daughter has just been prescribed neocate by our pediatrician.  She has severe reflux and protein allergies.  She just switched to prevacid from zantac.  We are hoping that the combo of neocate and prevacid will ease her constant discomfort.  It is heartbreaking to watch her sqirm, cry, grunt, etc. in pain all of the time.  We are just finishing up our first can of neocate. The price is outrageous.  But, she needs it desperately. I am sure you know exactly what we are going through.  If you have any more cans for sale with a good expiration date or if you know how we can get some for a tolerable price, please email me at luckyfounder…@hotmail.com asap.   We would truly appreciate any help with this urgent matter.   Thank you in advance, luckycat

Response:

Question:

– Hide quoted text — Show quoted text – Hey everyone, I posted earlier, two days after I started Paxil… I thought the depression and anxiety were over, but they’re not. I’ve got so much on my mind, I guess I just want to get some of this off my chest. So, after that day, I’ve had mood swings.  Sometimes I feel the medication is working and think, "what was I thinking before?" and other times I feel just as depressed, empty, flat, and anxious as I was before Paxil.  I call the moments where I think the Paxil may be helping "brief flashes of clarity." Let me give a little background on my situation…. Spring of last year, I lost my job at the prestigious university I was attending.  The stress was so severe, I dropped out.  I could no longer afford to pay tuition or rent for the next semester, so I am no longer going to school there.  Yes, I know about all the student aid programs, but I didn’t get everything together in time for the fall. I owe them a ton of money and I didn’t have a place to live. I grew up in an upper middle class city, and I’ve had to come to live with my mom, who moved to an economically depressed city after I graduated from high school (we lived there, it was expensive, only so I could get a good high school public education).  I guess I should be happy I have a place to live, and maybe my mood would be the same no matter where I lived, but the conditions here seem to make things worse.  I see homeless people and drug addicts, and it just seems to make me feel worse. I’m estranged from my friends at my former university — I’m embarrassed and sad that I’m no longer with them at school and I don’t respond to their e-mails.  It just seems too painful. So now, I’m sharing a one bedroom apartment with my mom, still unemployed, and going to the local community college part time.  I just don’t feel any enthusiasm for anything, especially school.  I have to force myself to get any work done.  I’ve been looking for jobs, with no success yet.  I’m young, but I feel old and tired.  I went to visit my grandma this weekend which usually cheers me up, but this time, I felt like I wanted to cry the whole time and I didn’t really have the energy to talk to her, but as always I did and hid my feelings from her, forcing myself to smile and partake in conversation.  I went to a movie but barely enjoyed it.  Energy level is so low. I don’t have a car right now — I could, except I have to pay maybe $1000 in fines for a speeding ticket and two traffic tickets.  I have a ton of bills I can’t pay right now. I think I’m addicted to the Klonopin I’ve been taking.  If I don’t take it every day, the anxiety snowballs.  I’ve told the doc about this and he says it’s such a low dose (0.5mg, twice daily as needed) that it doesn’t concern him.   Well, it does concern me…  I wonder if it’s contributed to the depression. I guess where I’m going with this…. did anybody in their first few weeks/month of Paxil feel brief periods of relief intermingled with mood swings?  And eventually did the effect of the medication even out?  I don’t know what’s worse – depressed 90% of the time and "OK" 10% of the time or depressed 100% of the time.  I’m going to give the Paxil a chance, I just want to hear other people’s perspectives. Ethan

Hi Ethan , Welcolm to ASAP . THese medications do take time to work and what you are experiencing has happened to me , I slowly ramped up in 5mg steps , now at 30 mg . I started having good days then better and bad days as well. If you read the literature that comes with the drug they do say it can 4-8 weeks and YMMV….most of the s/Effects will go too. I know how hard it is , but give it time. ( I always want instant results ).If not there are plenty of others to try , it is the time that is frustrating the most. Be guided by a good PDoc . good luck DEnis.

Response:

Oh pleeze!  Don’t listen to this garbage.  

you are the one spouting gargage I’ve been on Paxil off and on for close to 4-years now.  It’s the only SSRI that works for me.

well good for you. Your Milage May Vary ever thought of that? NAH.. others have a terrible time  It calms my mind and does wonders for my depression.  It takes a while to work — hang in there!

all the way to the dump? – Hide quoted text — Show quoted text – Paxil is dangerous and can cause suicidal thoughts – My friend Timmy Took Paxil and killed himself because of it. Hey everyone, I posted earlier, two days after I started Paxil… I thought the depression and anxiety were over, but they’re not. I’ve got so much on my mind, I guess I just want to get some of this off my chest. So, after that day, I’ve had mood swings.  Sometimes I feel the medication is working and think, "what was I thinking before?" and other times I feel just as depressed, empty, flat, and anxious as I was before Paxil.  I call the moments where I think the Paxil may be helping "brief flashes of clarity." Let me give a little background on my situation…. Spring of last year, I lost my job at the prestigious university I was attending.  The stress was so severe, I dropped out.  I could no longer afford to pay tuition or rent for the next semester, so I am no longer going to school there.  Yes, I know about all the student aid programs, but I didn’t get everything together in time for the fall. I owe them a ton of money and I didn’t have a place to live. I grew up in an upper middle class city, and I’ve had to come to live with my mom, who moved to an economically depressed city after I graduated from high school (we lived there, it was expensive, only so I could get a good high school public education).  I guess I should be happy I have a place to live, and maybe my mood would be the same no matter where I lived, but the conditions here seem to make things worse.  I see homeless people and drug addicts, and it just seems to make me feel worse. I’m estranged from my friends at my former university — I’m embarrassed and sad that I’m no longer with them at school and I don’t respond to their e-mails.  It just seems too painful. So now, I’m sharing a one bedroom apartment with my mom, still unemployed, and going to the local community college part time.  I just don’t feel any enthusiasm for anything, especially school.  I have to force myself to get any work done.  I’ve been looking for jobs, with no success yet.  I’m young, but I feel old and tired.  I went to visit my grandma this weekend which usually cheers me up, but this time, I felt like I wanted to cry the whole time and I didn’t really have the energy to talk to her, but as always I did and hid my feelings from her, forcing myself to smile and partake in conversation.  I went to a movie but barely enjoyed it.  Energy level is so low. I don’t have a car right now — I could, except I have to pay maybe $1000 in fines for a speeding ticket and two traffic tickets.  I have a ton of bills I can’t pay right now. I think I’m addicted to the Klonopin I’ve been taking.  If I don’t take it every day, the anxiety snowballs.  I’ve told the doc about this and he says it’s such a low dose (0.5mg, twice daily as needed) that it doesn’t concern him.   Well, it does concern me…  I wonder if it’s contributed to the depression. I guess where I’m going with this…. did anybody in their first few weeks/month of Paxil feel brief periods of relief intermingled with mood swings?  And eventually did the effect of the medication even out?  I don’t know what’s worse – depressed 90% of the time and "OK" 10% of the time or depressed 100% of the time.  I’m going to give the Paxil a chance, I just want to hear other people’s perspectives. Ethan

__ "If the American people knew what we did, they would chase us down the street and lynch us." –George Herbert Walker Bush, 1992 http://www.eyeambic.com/mp3/highlightofspeech.mp3 "One power with a president who has no foresight and cannot think properly,  is now wanting to plunge the world into a holocaust," Nelson Mandela Bush Property Seized–Trading with the Enemy http://www.tarpley.net/bush2.htm

Response:

See!  A lunatic jacked up on paxil! – Hide quoted text — Show quoted text – Oh pleeze!  Don’t listen to this garbage.  I’ve been on Paxil off and on for close to 4-years now.  It’s the only SSRI that works for me.  It calms my mind and does wonders for my depression.  It takes a while to work — hang in there! Paxil is dangerous and can cause suicidal thoughts – My friend Timmy Took Paxil and killed himself because of it. Hey everyone, I posted earlier, two days after I started Paxil… I thought the depression and anxiety were over, but they’re not. I’ve got so much on my mind, I guess I just want to get some of this off my chest. So, after that day, I’ve had mood swings.  Sometimes I feel the medication is working and think, "what was I thinking before?" and other times I feel just as depressed, empty, flat, and anxious as I was before Paxil.  I call the moments where I think the Paxil may be helping "brief flashes of clarity." Let me give a little background on my situation…. Spring of last year, I lost my job at the prestigious university I was attending.  The stress was so severe, I dropped out.  I could no longer afford to pay tuition or rent for the next semester, so I am no longer going to school there.  Yes, I know about all the student aid programs, but I didn’t get everything together in time for the fall. I owe them a ton of money and I didn’t have a place to live. I grew up in an upper middle class city, and I’ve had to come to live with my mom, who moved to an economically depressed city after I graduated from high school (we lived there, it was expensive, only so I could get a good high school public education).  I guess I should be happy I have a place to live, and maybe my mood would be the same no matter where I lived, but the conditions here seem to make things worse.  I see homeless people and drug addicts, and it just seems to make me feel worse. I’m estranged from my friends at my former university — I’m embarrassed and sad that I’m no longer with them at school and I don’t respond to their e-mails.  It just seems too painful. So now, I’m sharing a one bedroom apartment with my mom, still unemployed, and going to the local community college part time.  I just don’t feel any enthusiasm for anything, especially school.  I have to force myself to get any work done.  I’ve been looking for jobs, with no success yet.  I’m young, but I feel old and tired.  I went to visit my grandma this weekend which usually cheers me up, but this time, I felt like I wanted to cry the whole time and I didn’t really have the energy to talk to her, but as always I did and hid my feelings from her, forcing myself to smile and partake in conversation.  I went to a movie but barely enjoyed it.  Energy level is so low. I don’t have a car right now — I could, except I have to pay maybe $1000 in fines for a speeding ticket and two traffic tickets.  I have a ton of bills I can’t pay right now. I think I’m addicted to the Klonopin I’ve been taking.  If I don’t take it every day, the anxiety snowballs.  I’ve told the doc about this and he says it’s such a low dose (0.5mg, twice daily as needed) that it doesn’t concern him.   Well, it does concern me…  I wonder if it’s contributed to the depression. I guess where I’m going with this…. did anybody in their first few weeks/month of Paxil feel brief periods of relief intermingled with mood swings?  And eventually did the effect of the medication even out?  I don’t know what’s worse – depressed 90% of the time and "OK" 10% of the time or depressed 100% of the time.  I’m going to give the Paxil a chance, I just want to hear other people’s perspectives. Ethan

Response:

Oh pleeze!  Don’t listen to this garbage.  I’ve been on Paxil off and on for close to 4-years now.  It’s the only SSRI that works for me.  It calms my mind and does wonders for my depression.  It takes a while to work — hang in there! – Hide quoted text — Show quoted text – Paxil is dangerous and can cause suicidal thoughts – My friend Timmy Took Paxil and killed himself because of it. Hey everyone, I posted earlier, two days after I started Paxil… I thought the depression and anxiety were over, but they’re not. I’ve got so much on my mind, I guess I just want to get some of this off my chest. So, after that day, I’ve had mood swings.  Sometimes I feel the medication is working and think, "what was I thinking before?" and other times I feel just as depressed, empty, flat, and anxious as I was before Paxil.  I call the moments where I think the Paxil may be helping "brief flashes of clarity." Let me give a little background on my situation…. Spring of last year, I lost my job at the prestigious university I was attending.  The stress was so severe, I dropped out.  I could no longer afford to pay tuition or rent for the next semester, so I am no longer going to school there.  Yes, I know about all the student aid programs, but I didn’t get everything together in time for the fall. I owe them a ton of money and I didn’t have a place to live. I grew up in an upper middle class city, and I’ve had to come to live with my mom, who moved to an economically depressed city after I graduated from high school (we lived there, it was expensive, only so I could get a good high school public education).  I guess I should be happy I have a place to live, and maybe my mood would be the same no matter where I lived, but the conditions here seem to make things worse.  I see homeless people and drug addicts, and it just seems to make me feel worse. I’m estranged from my friends at my former university — I’m embarrassed and sad that I’m no longer with them at school and I don’t respond to their e-mails.  It just seems too painful. So now, I’m sharing a one bedroom apartment with my mom, still unemployed, and going to the local community college part time.  I just don’t feel any enthusiasm for anything, especially school.  I have to force myself to get any work done.  I’ve been looking for jobs, with no success yet.  I’m young, but I feel old and tired.  I went to visit my grandma this weekend which usually cheers me up, but this time, I felt like I wanted to cry the whole time and I didn’t really have the energy to talk to her, but as always I did and hid my feelings from her, forcing myself to smile and partake in conversation.  I went to a movie but barely enjoyed it.  Energy level is so low. I don’t have a car right now — I could, except I have to pay maybe $1000 in fines for a speeding ticket and two traffic tickets.  I have a ton of bills I can’t pay right now. I think I’m addicted to the Klonopin I’ve been taking.  If I don’t take it every day, the anxiety snowballs.  I’ve told the doc about this and he says it’s such a low dose (0.5mg, twice daily as needed) that it doesn’t concern him.   Well, it does concern me…  I wonder if it’s contributed to the depression. I guess where I’m going with this…. did anybody in their first few weeks/month of Paxil feel brief periods of relief intermingled with mood swings?  And eventually did the effect of the medication even out?  I don’t know what’s worse – depressed 90% of the time and "OK" 10% of the time or depressed 100% of the time.  I’m going to give the Paxil a chance, I just want to hear other people’s perspectives. Ethan

Response:

This happened to me too. It took me about two months (including dosage adjustment) to feel better on Paxil. But I was patient and it paid off. Now, even though I am in a seemingly stressful situation, I feel no anxiety. Paxil is great. California Bob

Hi Ethan. I have to agree with California Bob. Bearing in mind that all people don’t respond the same way to Paxil, or any of the other SSRIs, it took me a little over 6 weeks to adjust to Paxil. Having said that, for me, Paxil is the greatest thing that has ever happened to me. I used to have panic attacks just thinking about hospitals. After a little over two months on Paxil I was able to go into the hospital for major surgery, get a full night’s sleep the night before and walk into the operating room while joking with the surgeon and surgical staff. My wife, who doesn’t have a problem with anxiety or depression, was in far worse shape than I was. It’s changed my life. James

Response:

This happened to me too. It took me about two months (including dosage adjustment) to feel better on Paxil. But I was patient and it paid off. Now, even though I am in a seemingly stressful situation, I feel no anxiety. Paxil is great. California Bob – Hide quoted text — Show quoted text -I guess where I’m going with this…. did anybody in their first few weeks/month of Paxil feel brief periods of relief intermingled with mood swings?  And eventually did the effect of the medication even out?  I don’t know what’s worse – depressed 90% of the time and "OK" 10% of the time or depressed 100% of the time.  I’m going to give the Paxil a chance, I just want to hear other people’s perspectives. Ethan

Response:

- Hide quoted text — Show quoted text – Unfortunately that article is rather outdated in some respects. As for Paxil withdrawal, it’s very much an YMMV kind of thing, like most things rergarding anxiety. Many people take much longer than 7 days to get off of Paxil or have to switch to Prozac first, for others it’s easier but 7 days is *very* optimistic IMO. Here is a naive question:  If Paxil is working for my PA’s;  why do I ever want to get off it?  Isn’t this a medication I can just take for the rest of my life?

Some people need medication for some time, others only when their cyclic PD flares up and yet others (like me ands possibly you) will take meds for the rest of their lives. Some people want to try if they can do without meds when they have been able to live anxiety-free for half a year or so. Sometimes they can and sometimes they can’t and sometimes they will have to get back to meds later. In principle you can be on Paxil indefinitely, nobody is an *obligation* to try and do without meds, it’s a personal choice and sometimes a good pdoc can be helpful in making the right decision. Paxil *can* "poop out"on you (but it doesn’t always, it’s just something that occurs) in which case you can always switch to a different AD. Philip – Hide quoted text — Show quoted text –

Response:

Unfortunately that article is rather outdated in some respects. As for Paxil withdrawal, it’s very much an YMMV kind of thing, like most things rergarding anxiety. Many people take much longer than 7 days to get off of Paxil or have to switch to Prozac first, for others it’s easier but 7 days is *very* optimistic IMO.

Here is a naive question:  If Paxil is working for my PA’s;  why do I ever want to get off it?  Isn’t this a medication I can just take for the rest of my life?

Response:

Talk to your Doctor about any questions you have regarding medication. – Hide quoted text — Show quoted text – Here is a naive question:  If Paxil is working for my PA’s;  why do I ever want to get off it?  Isn’t this a medication I can just take for the rest of my life?

Response:

Talk to your Doctor about any questions you have regarding medication.

Response:

Absolutely.  And *DO NOT* take more than you need to.  My Internist suggested I go from 20 to 30 when it was not working at the 2 month mark.  I refused to go up and am glad I did.  Been at 20 now for almost 3 years and have had to take a valium or two maybe 4 or 5 times in the past 3 years.  If you read that article I linked you to –  it says you are better off with Paxil than some of the others.  Paxil has only a 7 day withdrawal.  Some of the other SSRI’s were much longer than a week.

THis all depends on your perspective.  The first ssri i took was prozac…it has a half life of around 12 days.  The stuff made me a rapic cycling bipolar although my highs weren’t all that high It took me six damn weeks to get it out of my system Perhaps moderate periods are better, less withdrawal easier to get rid of if they cause problems Marcie YMMV

Response:

Liar! You killed my friend with your medication advise! – Hide quoted text — Show quoted text – Unfortunately that article is rather outdated in some respects. As for Paxil withdrawal, it’s very much an YMMV kind of thing, like most things rergarding anxiety. Many people take much longer than 7 days to get off of Paxil or have to switch to Prozac first, for others it’s easier but 7 days is *very* optimistic IMO. Philip

Response:

- Hide quoted text — Show quoted text – Quite often, Paxil patients, who are unaware of withdrawal, go to doctors who are also unaware of the withdrawal and the ignorant doctor diagnoses the withdrawal symptoms as depression or anxiety "relapse." The doctor will then try to actually INCREASE the patients Paxil dosage. When you withdraw from Paxil, it’s not always pleasant but have some judgment here, especially if your doctor tries to increase your dosage and starts talking about ‘relapse’ returning. This mistake of doctors diagnosing ‘withdrawal’ as being ‘relapse’ has been noted and journaled in several medical publications. Make sure your doctor knows about and ACCEPTS the fact of withdrawals from this drug. If not, find a new doctor that does. Absolutely.  And *DO NOT* take more than you need to.  My Internist suggested I go from 20 to 30 when it was not working at the 2 month mark.  I refused to go up and am glad I did.  Been at 20 now for almost 3 years and have had to take a valium or two maybe 4 or 5 times in the past 3 years.  If you read that article I linked you to –  it says you are better off with Paxil than some of the others.  Paxil has only a 7 day withdrawal.  Some of the other SSRI’s were much longer than a week.

Unfortunately that article is rather outdated in some respects. As for Paxil withdrawal, it’s very much an YMMV kind of thing, like most things rergarding anxiety. Many people take much longer than 7 days to get off of Paxil or have to switch to Prozac first, for others it’s easier but 7 days is *very* optimistic IMO. Philip – Hide quoted text — Show quoted text –

Response:

- Hide quoted text — Show quoted text – Hey everyone, I posted earlier, two days after I started Paxil… I thought the depression and anxiety were over, but they’re not.   I’ve got so much on my mind, I guess I just want to get some of this off my chest. So, after that day, I’ve had mood swings.  Sometimes I feel the medication is working and think, "what was I thinking before?" and other times I feel just as depressed, empty, flat, and anxious as I was before Paxil.  I call the moments where I think the Paxil may be helping "brief flashes of clarity." Let me give a little background on my situation…. Spring of last year, I lost my job at the prestigious university I was attending.  The stress was so severe, I dropped out.  I could no longer afford to pay tuition or rent for the next semester, so I am no longer going to school there.  Yes, I know about all the student aid programs, but I didn’t get everything together in time for the fall. I owe them a ton of money and I didn’t have a place to live. I grew up in an upper middle class city, and I’ve had to come to live with my mom, who moved to an economically depressed city after I graduated from high school (we lived there, it was expensive, only so I could get a good high school public education).  I guess I should be happy I have a place to live, and maybe my mood would be the same no matter where I lived, but the conditions here seem to make things worse.  I see homeless people and drug addicts, and it just seems to make me feel worse. I’m estranged from my friends at my former university — I’m embarrassed and sad that I’m no longer with them at school and I don’t respond to their e-mails.  It just seems too painful. So now, I’m sharing a one bedroom apartment with my mom, still unemployed, and going to the local community college part time.  I just don’t feel any enthusiasm for anything, especially school.  I have to force myself to get any work done.  I’ve been looking for jobs, with no success yet.  I’m young, but I feel old and tired.  I went to visit my grandma this weekend which usually cheers me up, but this time, I felt like I wanted to cry the whole time and I didn’t really have the energy to talk to her, but as always I did and hid my feelings from her, forcing myself to smile and partake in conversation.  I went to a movie but barely enjoyed it.  Energy level is so low. I don’t have a car right now — I could, except I have to pay maybe $1000 in fines for a speeding ticket and two traffic tickets.  I have a ton of bills I can’t pay right now. I think I’m addicted to the Klonopin I’ve been taking.  If I don’t take it every day, the anxiety snowballs.  I’ve told the doc about this and he says it’s such a low dose (0.5mg, twice daily as needed) that it doesn’t concern him.   Well, it does concern me…  I wonder if it’s contributed to the depression. I guess where I’m going with this…. did anybody in their first few weeks/month of Paxil feel brief periods of relief intermingled with mood swings?  And eventually did the effect of the medication even out?  I don’t know what’s worse – depressed 90% of the time and "OK" 10% of the time or depressed 100% of the time.  I’m going to give the Paxil a chance, I just want to hear other people’s perspectives. Ethan

Hi Ethan, Antidepresants rarely work that fast. It often takes them up to eight weeks to kick in properly. So I’d suggest you give Paxil a fair chance and don’t worry about the Klonopin, it’s a first choice med for anxiety/panic and the combination of an AD and a benzo is common for anxiety disorders. I am sorry that your living circumstances are not as you would like them to be. I hope that you can do something to change that when you will feel better due to the meds kicking in. I’d also suggest Cognitive Behavioural Therapy which is a very helpful kind of here-and-now therapy and rightly makes you feel that you can take your life in your own hands. Philip – Hide quoted text — Show quoted text –

Response:

Always talk with your Doctor about medications! – Hide quoted text — Show quoted text – Quite often, Paxil patients, who are unaware of withdrawal, go to doctors

Question:

I believe (about 95% sure) in Massachusetts, Pharmacists are required to give you generic prescription, unless MD specifies "no substitution", or something along those lines.

It is not often that generics are different from the brand-name items, although sometimes there are slight differences.   But the "equivalents" in the "cheapest drugs" involved are NOT equivalent, and this is a good case for YMMV. My insurance decided that the proton inhibitor I was taking was too expensive for the best coverage it offered, and suggested nine alternatives.  Four of them were in no way conceivable as substitutes.   What is better for one is not for another; trying to save money this way is pound foolish. — This address is for information only.  I do not claim that these views are those of the Statistics Department or of Purdue University. Herman Rubin, Dept. of Statistics, Purdue Univ., West Lafayette IN47907-1399

Response:

- Hide quoted text — Show quoted text – Daniel … It’s not obvious to me that the pragmatic result differs very much from the *formulary* concept used by many (most?) HMO and PPO insurance plans (other than the attempt to assess the *effectiveness* of some prescription drugs vs. over-the-counter products). Some other states have used the *formulary* concept w.r.t. medicaid patients for quite a few years … California, for example. Ted Rodrick T2; Dx 1979; Metformin and Insulin

Indeed, Ted. The major difference is this was initiated by our current governor (who also happens to be a medical doctor). How long have you been on metformin? Any side effects? I’m about to start on it, since my glucophage XL is almost gone now. Daniel B. Wheeler www.oregonwhitetruffles.com T2, Dx 1999; Glucophage, Amaryl

Response:

Daniel … It’s not obvious to me that the pragmatic result differs very much from the *formulary* concept used by many (most?) HMO and PPO insurance plans (other than the attempt to assess the *effectiveness* of some prescription drugs vs. over-the-counter products). Some other states have used the *formulary* concept w.r.t. medicaid patients for quite a few years … California, for example. Ted Rodrick T2; Dx 1979; Metformin and Insulin – Hide quoted text — Show quoted text – From The Oregonian, June 15, 2002, p A1 State’s first lists of best, cheapest drugs rile industry The formulary of preferred drugs aims to curb rising costs while taking effectiveness into account By DON COLBURN, The Oregonian         Health officials have compiled the first lists of cost-effective prescription drugs for priority use by the Oregon Health Plan. It’s a cost-curbing approach drawing national attention – and the wrath of the pharmaceutical industry.         As Oregon Health Plan officials made their choices, the focus shifted from drug effectiveness to price.         "It’s exactly what the industry has been afraid of all along," said James Gardner, lobbyist for the Pharmaceutical Research and Manufacturers Association.         Doctors will be encouraged to turn first to the lists of cost-effective drugs – called a formulary – when treating patients on the health plan, the state’s Medicaid program for the poor. The lists could apply to health plan patients not covered by health maintenance organizations, which have their own formularies.         Prescription drugs account for 30 percent of the Oregon Medicaid budget and 62 percent of the increase in Oregon Health Plan costs during the past decade. They are expected to total nearly $900 million in the current two-year budget cycle.         What health officials envision – and drug industry leaders fear – is that the lists of preferred drugs will give the state more leverage in negotiating a lower price with pharmaceutical companies.         "The state wants to pit us against one another in a price war," said one drug company lobbyist, whose company forbids him to speak with reporters on the record.         A series of expert panels has been working for months to distill the evidence for effectiveness of four classes of drugs: opioid pain-killers, anti-ulcer and heartburn drugs, cholesterol-lowering drugs and nonsteroidal anti-inflammatory drugs. Each includes many similar drugs with widely varying costs.         For three of the four classes of drugs studied so far, the Health Resources Commission found insufficient scientific evidence to rate one drug higher than another in effectiveness. In the fourth group, the commission identified three cholesterol-lowering drugs – lovastatin, pravastatin and simvastatin – as effective in reducing the toll of coronary heart disease.         For example, one panel concluded that there is "no evidence to demonstrate a significant difference in efficacy" between newer drugs known as COX-2 inhibitors and traditional nonsteroidal anti-inflammatory drugs such as ibuprofen, or Advil.         For a Medicaid program looking for ways to cut costs, "that has profound policy implications," said Dr. John Santa, administrator of the Oregon Office for Health Policy and Research.         If three painkillers are deemed equally effective for most paitents, the reasoning goes, why not try the least expensive first?         In a speech this month to the Portland City Club, Gov. John Kitzhaber said there is "no evidence whatsoever" that for an otherwise healthy patient with no history of gastrointenstinal problems, the pain reliever Celebrex works any better than over-the-counter ibuprofen, or Advil. Yet Celebrex costs more than 10 times as much.         "Oregon is charting new territory," said Tricia Neuman, vice president of the Kaiser Family Foundation and director of its Medicare Policy project. "Nationally, there is a lot to learn from what Oregon is pursuing."         All states are searching for ways to curb rising Medicaid budgets. Many have formularies – lists of preferred drugs based partly on price. But most health plan formularies are negotiated privately.         "What makes Oregon different is the transparency of its process," Neuman said.         Kitzhaber, a former emergency room physician, outlined the new drug lists last week in a "Dear Colleague" letter to 14,000 doctors, dentists, nurse practitioners and pharmacists throughout the state. He said Oregon was the first state to base its Medicaid prescription drug plan on "evidence-based evaluations of the effectiveness of similar medications.         The drug industry is "used to formularies being worked out in private and all on the basis of price," Santa said. "We’re 180 degrees away from that. It’s public, and it’s all about effectiveness."         But if all drugs of a given type are deemed equally effective, price differences loom large.         Under proposed rules filed Friday by Oregon Health Plan officials, the preferred drug lists would go into effect Aug. 1 for two classes of medication: long-acting opioids for chronic pain and anti-ulcer or heartburn drugs. Others lists will follow.         For anti-ulcer medications, the benchmark drug is Protonix. Two others, Aciphex and Prevacid, also made the list because of their comparable price.         For opioid chronic pain drugs, the benchmark drug is generic morphine. Eight others made the list.         After Aug. 1, claims for nondesignated competing drugs in those classes would not be paid by the health plan unless the prescribing doctor requests an exception. The doctor can do so with a simple directive on the prescription.         Dr. Frank Baumeister, chairman of the Health Resources Commission, said it would be easy for doctors to make an exception for any patient. "This is not Big Brother with a hammer here."         But drug industry representatives expressed dismay that the state was moving so quickly to compile a preferred lists of drugs.         "We think (the health plan) is misusing the information and the data you have furnished themn," Bruce Bishop, representating Astra-Zeneca Pharmaceuticals, told the Health Resources Commission on Thursday evening.         He questioned how officials could pick a benchmark anti-ulcer drug and add two others on the basis of low price, excluding two others, when the expert panels found insufficient evidence to rank the drugs on effectiveness.         Because the expert panels were in many cases unable to single out one or more drugs as superior on the basis of effectiveness, price becomes a determining factor for the preferred lists.         That means some top-selling but expensive drugs – such as the cholesterol-lowering drug Lipitor and the anti-inflammatory painkiller Celebrex – may not make the lists.         "The fact that we’re doing this shouldn’t come as a surprise to anyone," said Hersh Crawford, administrator of the Office of Medical Assistance Programs, which runs the health plan. It was the clear intent of the bill adopted last year by the Legislature, he said.         That law directed the state to ensure that Oregon Health Plan members "receive the most effective prescription drug available at the best possible price." Three large classes of drugs are exempt: those used to treat cancer, mental illness and AIDS.         The expert panels evaluated each drug class on the basis of published evidence with help from Oregon Health and Science University’s Evidence-Based Practice Center. Comment by poster: My endocrinologist just changed my glucophage XL Rx to metformin, which may save me considerable $$$. Check with your physician if you are on glucophage XL. It maybe that metformin is a better and cheaper Rx. Posted as a courtesy by Daniel B. Wheeler www.oregonwhitetruffles.com

Response:

From The Oregonian, June 15, 2002, p A1 State’s first lists of best, cheapest drugs rile industry The formulary of preferred drugs aims to curb rising costs while taking effectiveness into account By DON COLBURN, The Oregonian         Health officials have compiled the first lists of cost-effective prescription drugs for priority use by the Oregon Health Plan. It’s a cost-curbing approach drawing national attention – and the wrath of the pharmaceutical industry.         As Oregon Health Plan officials made their choices, the focus shifted from drug effectiveness to price.         "It’s exactly what the industry has been afraid of all along," said James Gardner, lobbyist for the Pharmaceutical Research and Manufacturers Association.         Doctors will be encouraged to turn first to the lists of cost-effective drugs – called a formulary – when treating patients on the health plan, the state’s Medicaid program for the poor. The lists could apply to health plan patients not covered by health maintenance organizations, which have their own formularies.         Prescription drugs account for 30 percent of the Oregon Medicaid budget and 62 percent of the increase in Oregon Health Plan costs during the past decade. They are expected to total nearly $900 million in the current two-year budget cycle.         What health officials envision – and drug industry leaders fear – is that the lists of preferred drugs will give the state more leverage in negotiating a lower price with pharmaceutical companies.         "The state wants to pit us against one another in a price war," said one drug company lobbyist, whose company forbids him to speak with reporters on the record.         A series of expert panels has been working for months to distill the evidence for effectiveness of four classes of drugs: opioid pain-killers, anti-ulcer and heartburn drugs, cholesterol-lowering drugs and nonsteroidal anti-inflammatory drugs. Each includes many similar drugs with widely varying costs.         For three of the four classes of drugs studied so far, the Health Resources Commission found insufficient scientific evidence to rate one drug higher than another in effectiveness. In the fourth group, the commission identified three cholesterol-lowering drugs – lovastatin, pravastatin and simvastatin – as effective in reducing the toll of coronary heart disease.         For example, one panel concluded that there is "no evidence to demonstrate a significant difference in efficacy" between newer drugs known as COX-2 inhibitors and traditional nonsteroidal anti-inflammatory drugs such as ibuprofen, or Advil.         For a Medicaid program looking for ways to cut costs, "that has profound policy implications," said Dr. John Santa, administrator of the Oregon Office for Health Policy and Research.         If three painkillers are deemed equally effective for most paitents, the reasoning goes, why not try the least expensive first?         In a speech this month to the Portland City Club, Gov. John Kitzhaber said there is "no evidence whatsoever" that for an otherwise healthy patient with no history of gastrointenstinal problems, the pain reliever Celebrex works any better than over-the-counter ibuprofen, or Advil. Yet Celebrex costs more than 10 times as much.         "Oregon is charting new territory," said Tricia Neuman, vice president of the Kaiser Family Foundation and director of its Medicare Policy project. "Nationally, there is a lot to learn from what Oregon is pursuing."         All states are searching for ways to curb rising Medicaid budgets. Many have formularies – lists of preferred drugs based partly on price. But most health plan formularies are negotiated privately.         "What makes Oregon different is the transparency of its process," Neuman said.         Kitzhaber, a former emergency room physician, outlined the new drug lists last week in a "Dear Colleague" letter to 14,000 doctors, dentists, nurse practitioners and pharmacists throughout the state. He said Oregon was the first state to base its Medicaid prescription drug plan on "evidence-based evaluations of the effectiveness of similar medications.         The drug industry is "used to formularies being worked out in private and all on the basis of price," Santa said. "We’re 180 degrees away from that. It’s public, and it’s all about effectiveness."         But if all drugs of a given type are deemed equally effective, price differences loom large.         Under proposed rules filed Friday by Oregon Health Plan officials, the preferred drug lists would go into effect Aug. 1 for two classes of medication: long-acting opioids for chronic pain and anti-ulcer or heartburn drugs. Others lists will follow.         For anti-ulcer medications, the benchmark drug is Protonix. Two others, Aciphex and Prevacid, also made the list because of their comparable price.         For opioid chronic pain drugs, the benchmark drug is generic morphine. Eight others made the list.         After Aug. 1, claims for nondesignated competing drugs in those classes would not be paid by the health plan unless the prescribing doctor requests an exception. The doctor can do so with a simple directive on the prescription.         Dr. Frank Baumeister, chairman of the Health Resources Commission, said it would be easy for doctors to make an exception for any patient. "This is not Big Brother with a hammer here."         But drug industry representatives expressed dismay that the state was moving so quickly to compile a preferred lists of drugs.         "We think (the health plan) is misusing the information and the data you have furnished themn," Bruce Bishop, representating Astra-Zeneca Pharmaceuticals, told the Health Resources Commission on Thursday evening.         He questioned how officials could pick a benchmark anti-ulcer drug and add two others on the basis of low price, excluding two others, when the expert panels found insufficient evidence to rank the drugs on effectiveness.         Because the expert panels were in many cases unable to single out one or more drugs as superior on the basis of effectiveness, price becomes a determining factor for the preferred lists.         That means some top-selling but expensive drugs – such as the cholesterol-lowering drug Lipitor and the anti-inflammatory painkiller Celebrex – may not make the lists.         "The fact that we’re doing this shouldn’t come as a surprise to anyone," said Hersh Crawford, administrator of the Office of Medical Assistance Programs, which runs the health plan. It was the clear intent of the bill adopted last year by the Legislature, he said.         That law directed the state to ensure that Oregon Health Plan members "receive the most effective prescription drug available at the best possible price." Three large classes of drugs are exempt: those used to treat cancer, mental illness and AIDS.         The expert panels evaluated each drug class on the basis of published evidence with help from Oregon Health and Science University’s Evidence-Based Practice Center. Comment by poster: My endocrinologist just changed my glucophage XL Rx to metformin, which may save me considerable $$$. Check with your physician if you are on glucophage XL. It maybe that metformin is a better and cheaper Rx. Posted as a courtesy by Daniel B. Wheeler www.oregonwhitetruffles.com

Response:

Question:

My doctor told me that if the pain is in the front of the hip, like the groin area, its the RA and if it’s in the back like you described it’s probably the FMS.  For what it’s worth.

What if it’s both? Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

My doctor told me that if the pain is in the front of the hip, like the groin area, its the RA and if it’s in the back like you described it’s probably the FMS.  For what it’s worth.

Hip pain in the back and side for me is usually burisitis ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s eBay Auctions Plus Size and Vintage Clothing http://www.fadedjeans.com/tina/

Response:

Hi Becky, Sorry to hear that you’re hurting and confused.  When you’re hurting and the docs can’t pin down a firm diagnosis, arthritis just sucks. The first thing you need to know about this illness is that nothing is cut and dried.  Not the symptoms, not the meds, not the docs.  Different strokes for different folks. One thing I learned is that some docs love to diagnose but not treat.  Some docs relate well to patients right away but are not up-to-date on new treatments, while some are arrogant but better informed.  I tend to go with the latter, but I like technology and new treaments for RA. I would make sure that the new doc gets your feet xrays and call her back to see if she revises her diagnosis.  She is right that other things can cause erosions in the feet, such as Morton’s neuroma (a callused nerve) and bursitis.  Pain in your feet will make you walk funny, which then sets off a chain of pain up through your ankle, knee and hips. I have RA and fibromyalgia and keeping the two separate is impossible.  My RA tends to hit the tendons where they connect to the joints, so I get alot of nerve pain & bursitis.  The worst pain I’ve had with my RA/fibro has been from large joints (shoulder and hip) piching a nerve.  Sends me to the emergency room.  But enough about me… Both docs could be right on the meds to take, because different meds work for different folks.  I felt like dieing on mtx, but am doing much better on Arava & Enbrel.  Same with fibromyalgia; some folks get relief with pain killers, some with antidepressants, and so on. The same goes for your stomach pain.  My stomach got so bad I couldn’t tolerate any NSAIDs (like Advil and Vioxx), so I switched to pain pills. Just got done seeing a gastro doc, got an upper GI and found out that I had a hiatel hernia.  So the gastro doc has me on Protonix in the morning and Gaviscon at night and I’m doing much better. It’s just going to take time for you and your doc (whichever one you choose) to figure out what works for you.  Stick with this group, the good folks who post here will give you information and support when you feel nothing is helping.  ASA has been invaluable to me the three years I’ve had RA. Hang in there, things will get better. Jean Mc

– Hide quoted text — Show quoted text – I worte a post early but can’t find it so sorry here it goes again, I was told I have RA and the last set of xrays should a lot of eroisons in the feet, I was told to start methortrexate, but most of my pain is in my hips, and when you sit the done in the bottom side of each butt, hope that makes since,anway was told that is not RA and don’t know what it is, so I thought I would get a second opionon for the methortrexate beacause of the side effects, went to a new doctor in Seattle, WA she couldn’t belive that I had erooisons in my feet my looking at them and the xrays never made it down there, anyway she said that she would start me on Arva before meth. becasue of lesser side effects, I had never heard of that one. but ready about it it doesn’t sound any better that the other one. She also said just becasue you have eroisons in your feet it does not been you have RA, I do have a high rh factor and have never had a high sed rate. She prescibed mobic or difsomething that is and anitfliamotry and previcid becasue my stomach is so bad, I am so confused as to who to believe, my feet hurt sometimes as well as my ankle, but my hips and the bone  on each side of your check where you sit is really bad, any suggestions would be helpful., Thanks in advance. Oh I also said about fibromaylaa because I was told I had that and I have alot of stiffness in neck and shoulders, and she said fm is only a pain syndrome

Response:

– Hide quoted text — Show quoted text – I can’t thank you all enough for your repsonses, the doctor I was seeing is supposed to be the best specialist around but I am starting to think the other one I saw in the smaller town close to me is better, I have another appointment May 30th unitl then I am taking mobic and prevacid for the stomach pain, thanks again, this group is wonderful! Becky My doctor told me that if the pain is in the front of the hip, like the groin area, its the RA and if it’s in the back like you described it’s probably the FMS.  For what it’s worth. — Cyberhugs, DianeW Becky, I also have hip pain with RA.  Although symptoms of RA tend to be more prevalent in the small joints, it can affect larger joints, too.  My RD has told me the RA is the cause of my hip pain.  I believe that FM can also cause pain around that region, though I’ll leave that to the people on here with FM to verify. As for the MTX/arava issue, MTX has a lot longer track record than Arava. You can take folic acid with the MTX to help decrease any side effects. The GI symptoms seem to be reduced even more by taking the MTX as an injection. The only real side effect I get from the MTX injection is some dizziness during the afternoon and evening of the day I take my shot. I hope that you can get some answers.  Hip pain can be very bothersome, so hopefully you’ll find something to help soon! Lindsey I worte a post early but can’t find it so sorry here it goes again, I was told I have RA and the last set of xrays should a lot of eroisons in

I have been on MTX orally for 6 years, and am now having the injections. I was taking Arava for about 4 months,  but noticed my feet were going numb, but very painful at night, after a few tests they decided I had nerve damage and stopped the Arava.  I would recommend the MTX for a few months before even thinking about Arava.  Best of luck with whatever you have. —   Remove NOSPAMMAN from address when replying

Response:

Hip pain in the back and side for me is usually burisitis ~KJ

Me too KJ.  Gonna get another shot on Thursday. Anne AAC/AAF/AFBV62.0844.AZ http://www.tckworld.com/opfoot

Response:

I can’t thank you all enough for your repsonses, the doctor I was seeing is supposed to be the best specialist around but I am starting to think the other one I saw in the smaller town close to me is better, I have another appointment May 30th unitl then I am taking mobic and prevacid for the stomach pain, thanks again, this group is wonderful! Becky

– Hide quoted text — Show quoted text – My doctor told me that if the pain is in the front of the hip, like the groin area, its the RA and if it’s in the back like you described it’s probably the FMS.  For what it’s worth. — Cyberhugs, DianeW Becky, I also have hip pain with RA.  Although symptoms of RA tend to be more prevalent in the small joints, it can affect larger joints, too.  My RD has told me the RA is the cause of my hip pain.  I believe that FM can also cause pain around that region, though I’ll leave that to the people on here with FM to verify. As for the MTX/arava issue, MTX has a lot longer track record than Arava. You can take folic acid with the MTX to help decrease any side effects. The GI symptoms seem to be reduced even more by taking the MTX as an injection. The only real side effect I get from the MTX injection is some dizziness during the afternoon and evening of the day I take my shot. I hope that you can get some answers.  Hip pain can be very bothersome, so hopefully you’ll find something to help soon! Lindsey I worte a post early but can’t find it so sorry here it goes again, I was told I have RA and the last set of xrays should a lot of eroisons in the feet, I was told to start methortrexate, but most of my pain is in my hips, and when you sit the done in the bottom side of each butt, hope that makes since,anway was told that is not RA and don’t know what it is, so I thought I would get a second opionon for the methortrexate beacause of the side effects, went to a new doctor in Seattle, WA she couldn’t belive that I had erooisons in my feet my looking at them and the xrays never made it down there, anyway she said that she would start me on Arva before meth. becasue of lesser side effects, I had never heard of that one. but ready about it it doesn’t sound any better that the other one. She also said just becasue you have eroisons in your feet it does not been you have RA, I do have a high rh factor and have never had a high sed rate. She prescibed mobic or difsomething that is and anitfliamotry and previcid becasue my stomach is so bad, I am so confused as to who to believe, my feet hurt sometimes as well as my ankle, but my hips and the bone  on each side of your check where you sit is really bad, any suggestions would be helpful., Thanks in advance. Oh I also said about fibromaylaa because I was told I had that and I have alot of stiffness in neck and shoulders, and she said fm is only a pain syndrome

Response:

My doctor told me that if the pain is in the front of the hip, like the groin area, its the RA and if it’s in the back like you described it’s probably the FMS.  For what it’s worth. — Cyberhugs, DianeW

– Hide quoted text — Show quoted text – Becky, I also have hip pain with RA.  Although symptoms of RA tend to be more prevalent in the small joints, it can affect larger joints, too.  My RD has told me the RA is the cause of my hip pain.  I believe that FM can also cause pain around that region, though I’ll leave that to the people on here with FM to verify. As for the MTX/arava issue, MTX has a lot longer track record than Arava. You can take folic acid with the MTX to help decrease any side effects. The GI symptoms seem to be reduced even more by taking the MTX as an injection. The only real side effect I get from the MTX injection is some dizziness during the afternoon and evening of the day I take my shot. I hope that you can get some answers.  Hip pain can be very bothersome, so hopefully you’ll find something to help soon! Lindsey I worte a post early but can’t find it so sorry here it goes again, I was told I have RA and the last set of xrays should a lot of eroisons in the feet, I was told to start methortrexate, but most of my pain is in my hips, and when you sit the done in the bottom side of each butt, hope that makes since,anway was told that is not RA and don’t know what it is, so I thought I would get a second opionon for the methortrexate beacause of the side effects, went to a new doctor in Seattle, WA she couldn’t belive that I had erooisons in my feet my looking at them and the xrays never made it down there, anyway she said that she would start me on Arva before meth. becasue of lesser side effects, I had never heard of that one. but ready about it it doesn’t sound any better that the other one. She also said just becasue you have eroisons in your feet it does not been you have RA, I do have a high rh factor and have never had a high sed rate. She prescibed mobic or difsomething that is and anitfliamotry and previcid becasue my stomach is so bad, I am so confused as to who to believe, my feet hurt sometimes as well as my ankle, but my hips and the bone  on each side of your check where you sit is really bad, any suggestions would be helpful., Thanks in advance. Oh I also said about fibromaylaa because I was told I had that and I have alot of stiffness in neck and shoulders, and she said fm is only a pain syndrome

Response:

FM is a whole lot more than that.  It is pain, and muscle cramps, and disturbed sleep patterns, and fatigue, and lelthargy, and and—— Dont let her discount what you are going through.

Char, you beat me to it.  :) As for the Arava vs Methtorexate-I think you should try the Methotexate first. This has been used for quite a long while, and it has a really good track record.  Arava is a much newer drug, and long term (5 yrs or more) are not known. This doctor sounds very young and sure of herself.  But that is not necessarily a good thing.  Because she also sounds inexperienced.  Of course that is only my opinion and important only to me.

FWIW, that’s what I thought as well.  She isn’t the only doctor who doesn’t know jack about fibromyalgia, though.  With FMS it’s vital to educate yourself.  There’s a lot of information out there on the web, and here is a good starting place: http://www.arthritisinsight.com/medical/disease/fms/  Our small town library has a fairly good selection of books about FMS, so if that’s any indication, the information is out there.  You just have to make a point of looking for it. Becky Becky Ratliff

Response:

Becky, I also have hip pain with RA.  Although symptoms of RA tend to be more prevalent in the small joints, it can affect larger joints, too.  My RD has told me the RA is the cause of my hip pain.  I believe that FM can also cause pain around that region, though I’ll leave that to the people on here with FM to verify. As for the MTX/arava issue, MTX has a lot longer track record than Arava. You can take folic acid with the MTX to help decrease any side effects.  The GI symptoms seem to be reduced even more by taking the MTX as an injection. The only real side effect I get from the MTX injection is some dizziness during the afternoon and evening of the day I take my shot. I hope that you can get some answers.  Hip pain can be very bothersome, so hopefully you’ll find something to help soon! Lindsey

– Hide quoted text — Show quoted text – I worte a post early but can’t find it so sorry here it goes again, I was told I have RA and the last set of xrays should a lot of eroisons in the feet, I was told to start methortrexate, but most of my pain is in my hips, and when you sit the done in the bottom side of each butt, hope that makes since,anway was told that is not RA and don’t know what it is, so I thought I would get a second opionon for the methortrexate beacause of the side effects, went to a new doctor in Seattle, WA she couldn’t belive that I had erooisons in my feet my looking at them and the xrays never made it down there, anyway she said that she would start me on Arva before meth. becasue of lesser side effects, I had never heard of that one. but ready about it it doesn’t sound any better that the other one. She also said just becasue you have eroisons in your feet it does not been you have RA, I do have a high rh factor and have never had a high sed rate. She prescibed mobic or difsomething that is and anitfliamotry and previcid becasue my stomach is so bad, I am so confused as to who to believe, my feet hurt sometimes as well as my ankle, but my hips and the bone  on each side of your check where you sit is really bad, any suggestions would be helpful., Thanks in advance. Oh I also said about fibromaylaa because I was told I had that and I have alot of stiffness in neck and shoulders, and she said fm is only a pain syndrome

Response:

I also said about fibromaylaa because I was told I had that and I have alot of stiffness in neck and shoulders, and she said fm is only a pain syndrome

FM is a whole lot more than that.  It is pain, and muscle cramps, and disturbed sleep patterns, and fatigue, and lelthargy, and and—— Dont let her discount what you are going through. As for the Arava vs Methtorexate-I think you should try the Methotexate first. This has been used for quite a long while, and it has a really good track record.  Arava is a much newer drug, and long term (5 yrs or more) are not known. This doctor sounds very young and sure of herself.  But that is not necessarily a good thing.  Because she also sounds inexperienced.  Of course that is only my opinion and important only to me. I hope you get some answers and help, VERY soon.  Let us know what happens. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

I worte a post early but can’t find it so sorry here it goes again, I was told I have RA and the last set of xrays should a lot of eroisons in the feet, I was told to start methortrexate, but most of my pain is in my hips, and when you sit the done in the bottom side of each butt, hope that makes since,anway was told that is not RA and don’t know what it is, so I thought I would get a second opionon for the methortrexate beacause of the side effects, went to a new doctor in Seattle, WA she couldn’t belive that I had erooisons in my feet my looking at them and the xrays never made it down there, anyway she said that she would start me on Arva before meth. becasue of lesser side effects, I had never heard of that one. but ready about it it doesn’t sound any better that the other one. She also said just becasue you have eroisons in your feet it does not been you have RA, I do have a high rh factor and have never had a high sed rate. She prescibed mobic or difsomething that is and anitfliamotry and previcid becasue my stomach is so bad, I am so confused as to who to believe, my feet hurt sometimes as well as my ankle, but my hips and the bone  on each side of your check where you sit is really bad, any suggestions would be helpful., Thanks in advance. Oh I also said about fibromaylaa because I was told I had that and I have alot of stiffness in neck and shoulders, and she said fm is only a pain syndrome

Response:

Question:

I have great news.  My doc fit me in today and he decided to cut back my mtx by a third, my Vioxx in half and my prevacid in half, keeping the Arava as is.  My blood work was perfect and he thinks the symptoms WERE a result of the meds. but that my joints are doing so well we can cut back on the meds.!  He believes, and he said this with caution, that after three years in remission, albeit on meds., that I may be looking at a full remission so we are going to go with the new plan and if all stays well with the reduced dosages, he will reduce again in 2-4 months.  Just being off the vioxx and prevacid for 2 days, I saw a difference in the lightheadedness and the nausea.  So, keep you fingers crossed that this works.  Thanks for all the wonderful advice and support.  I will keep you posted.

Response:

I have great news.

That is EXCELLENT news! WoooHoo Nan! ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s eBay Auctions Plus Size and Vintage Clothing http://www.fadedjeans.com/tina/

Response:

My doc fit me in today and he decided to cut back my mtx by a third, my Vioxx in half and my prevacid in half, keeping the Arava as is.

That is great news!  Got everything crossed that this remission holds. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

says… I have great news.  My doc fit me in today and he decided to cut back my mtx by a third, my Vioxx in half and my prevacid in half, keeping the Arava as is.  My

Wow that is great news! Congratulations much better news than you expected. — MZ — Visit my website: http://www.mzuschlag.com

Response:

I have not been feeling well (headaches,

 nausea, lightheadness, abdominal discomfort Hi Nan,   Actually, these are the same side-effects I get from methotrexate. Unfortunately, they’re quite common and can occur from the beginning or over time. I take leucovorin 12 hours after my mtx dose and it has calmed the side-effects considerably. So, it might not be Arava causing the problem. Though, Arava and Vioxx can also cause the same problems. Might take some time finding out which one is making you feel so bad. Also, if your liver functions and labs are all normal, you might want to weigh the pros and cons of going off of your meds. Can you tolerate the side-effects in order to keep your disease process in check? Or are they too much to handle and should you try another drug? Hope you’re able to figure this out quickly and that you’re soon feeling better!                                             Be well,  Patty *~A friend is someone who reaches out for your hand, and touches your heart.~*

Response:

Kelly and all:  Thanks so much for your input.  I have been doing so well prior to this.  3 years in medical remission thanks to meds. I work full time, am busy with three boys and a hubby, jog, play tennis, roller blade and strength train.  Phew, sounds more crazy than it is.  This really threw me a curve ball but so far today I am ok.  My bloodwork up until now has been fine.  He will do new work up on Monday and we will go from there.  I have been on many other meds. and Arava has been the best, by far.  Have not moved on to the newer ones so that may be next.  We’ll see. I can’t imagine why else I would be feeling so lousy if it is not the meds.  But then a gal posted to me that dehydration can cause headaches and lightheadedness and I have developed Sjogrens Syndorme with the RA so that may explain a lot of this…..  thanks again and take care.

Response:

Thanks MZ.  Sorry about the remicade mix up.  Don’t mean to spread innacurate information!  I know that part of the discussion on Monday will be alternatives to the Arava and I want to hear from others what has worked for them and potential side effects.  Any problems with the remicade?  Thanks for your input

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says… Thanks MZ.  Sorry about the remicade mix up.  Don’t mean to spread innacurate information!  I know that part of the discussion on Monday will be alternatives to the Arava and I want to hear from others what has worked for them and potential side effects.  Any problems with the remicade?  Thanks for your input

No problems at all.  I don’t have side effects from it.  Many folks take it with mtx, which can be a problem for some people.  Some Drs are prescribing it without mtx. A few people have had reactions with infusion and have to quit but most people tolerate it well.  It is a special anti-body that blocks the cytokine TNF (tumor necrosis factor).  The infusion are easy and painless, less prick then a blood test.  If you go on Remicade they will likely test for TB before you start.  Remicade can activate TB that might be latent, so they test for it. — MZ — Visit my website: http://www.mzuschlag.com

Response:

Hi Nan, I have taken Mobic and did very well with it.  I could not take Celebrex or Vioxx, but Mobic had no side effects for me. Why would he take you off all meds without giving you something in place. That sounds cruel to me. I hope that you find something else very soon! debbie m. http://www.angelfire.com/ga2/angels1/

– Hide quoted text — Show quoted text – Hi all:  I have not posted here in quite awhile but I do read the posts often. My doctor has ordered me off all my arthritis meds as of today until I see him Monday.  I called his office today as I have not been feeling well (headaches, nausea, lightheadness, abdominal discomfort) for about a month off and on. I had already taken my weekly mtx. but will be off the Arava and Vioxx until at least Monday.  I am anxious about being off everything after three years of blessed remission, give or take a few minor flares. I do appreciate his caution especailly given the recent reports about both Arava and Vioxx and there potential side effects. I am going to lay low (stay home from work) and not exercise till I see him.  I was hoping some of you might share your medication choices with me.  I know many take remicade and enbrel but I don’t think either are available right now due to shortages.  I also wondered about Kineret(sp)?  What is that and how is it taken?  Also, alternative NSAIDS, like Mobic or Celebrex?  Any luck with these?  Thanks so much for any advice you might offer. Nan Hart

Response:

3 years in medical remission thanks to meds. I work full time, am busy with three boys and a hubby, jog, play tennis, roller blade and strength train.

Nann, honey?  Maybe you are just tired?  WHEW girl.What a lot of stuff you are doing.  Considering that walking across the room is a major hurdle for me, you wear me out just writing about what you do. Hope they find some answers for you soon. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

I also wondered about Kineret(sp)?  What is that and how is it taken?

Kineret is a daily injection, similar to Enbrel and Remicade, but it works ona different component of inflammation. I’m on it and it’s working. http://www.arthritisinsight.com/medical/meds/kineret.html ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s eBay Auctions Plus Size and Vintage Clothing http://www.fadedjeans.com/tina/

Response:

http://www.arthritisinsight.com/medical/meds/kineret.html

KJ, your link on the bottom of this page, for Kineret, actually goes to — Di "May all your weeds be wildflowers." Anonymous dabell at optonline dot net www.pbase.com/di www.loveyourmother.homestead.com

Response:

KJ, your link on the bottom of this page, for Kineret, actually goes to —

What are you talking about? Works fine for me! <beg ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s eBay Auctions Plus Size and Vintage Clothing http://www.fadedjeans.com/tina/

Response:

Hi KJ:  I haven’t been posting here for some time but I do follow the posts and it is good to hear that something is finallly working for you.  I remember that you have had a difficult time to say the least finding something that would work!  That is geat news. Nan Hart

Response:

That is geat news.

Thanks nan! How are you doing? Haven’t heard from you in awhile. ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s eBay Auctions Plus Size and Vintage Clothing http://www.fadedjeans.com/tina/

Response:

Nan, Please don’t panic and assume you will be taken off both.  Many times I have been taken off for a couple of days until side effects subside and then put back on and been fine.  Are you blood tests all coming back okay??  Liver function okay?  Those are the crucial ones for Arava. I am assuming you have tried everything else like gold, sulfasalazine, pennicillamine etc.  Some people are also doing well on arava only every second day.  The enbrel is in shortage but hopefully by September that will totally be cleared up (Ms. optomistic here!) and remicade is not in shortage at all.  Kineret is available and some are doing well on that.  There are at least a half a dozen trials if you are eligible for those. Lots onthe horizon. In the meantime since you were doing so well on Arava I have my fingers crossed that everything will be okay.  My doctor personally does not feel that if people are not having problems and have not had problems with liver function etc. in the past that it is still a good drug (with the caveat that it is treated with respect, blood pressure monitored regularly, regular blood tests etc, no alcohol).  Really these restrictions are the same as the restrictions on some of our tried and true drugs.  Less blood tests than I had with gold! Kelly

– Hide quoted text — Show quoted text – Hi all:  I have not posted here in quite awhile but I do read the posts often. My doctor has ordered me off all my arthritis meds as of today until I see him Monday.  I called his office today as I have not been feeling well (headaches, nausea, lightheadness, abdominal discomfort) for about a month off and on. I had already taken my weekly mtx. but will be off the Arava and Vioxx until at least Monday.  I am anxious about being off everything after three years of blessed remission, give or take a few minor flares. I do appreciate his caution especailly given the recent reports about both Arava and Vioxx and there potential side effects. I am going to lay low (stay home from work) and not exercise till I see him.  I was hoping some of you might share your medication choices with me.  I know many take remicade and enbrel but I don’t think either are available right now due to shortages.  I also wondered about Kineret(sp)?  What is that and how is it taken?  Also, alternative NSAIDS, like Mobic or Celebrex?  Any luck with these?  Thanks so much for any advice you might offer. Nan Hart

Response:

@aol.com says… I know many take remicade and enbrel but I don’t think either are available right now due to shortages.  I also wondered about Kineret(sp)?  What is that and how is it taken?  Also, alternative NSAIDS, like Mobic or Celebrex?  Any luck with these?  Thanks so much for any advice you might offer.  

I am on Remicade and there is no shortage!  Only Enbrel has a shortage so lets not get rumors started. LOL!  Remicade and mtx are my miracle combo.  Remicade is given by infusion every 6 to 8 weeks.  Celebrex is a good alternative to Vioxx. I’m sure your Dr has several other choices that will be effective for you.  I hope you are back on Arava soon or have an effective alternative. — MZ — Visit my website: http://www.mzuschlag.com

Response:

Hi all:  I have not posted here in quite awhile but I do read the posts often. My doctor has ordered me off all my arthritis meds as of today until I see him Monday.  I called his office today as I have not been feeling well (headaches, nausea, lightheadness, abdominal discomfort) for about a month off and on.  I had already taken my weekly mtx. but will be off the Arava and Vioxx until at least Monday.  I am anxious about being off everything after three years of blessed remission, give or take a few minor flares.  I do appreciate his caution especailly given the recent reports about both Arava and Vioxx and there potential side effects. I am going to lay low (stay home from work) and not exercise till I see him.  I was hoping some of you might share your medication choices with me.  I know many take remicade and enbrel but I don’t think either are available right now due to shortages.  I also wondered about Kineret(sp)?  What is that and how is it taken?  Also, alternative NSAIDS, like Mobic or Celebrex?  Any luck with these?  Thanks so much for any advice you might offer.   Nan Hart

Response:

Question:

Mary-My insurance doesnt cover injectibles either.  But I have failed multiple DMARDS and my RD sent a letter to the insurance company stating this, and that it was a medical necessity, and they now cover it. Get your RD to send a letter of medical necessity to your insurance company. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

Hi Mary,    I know you are kind of stressed out with the virus and changing medicine and all.   I think you have a really good idea to wait until you are over the virus before changing to Arava.  Having the flu can cause your liver enzymes to go up in a blood test and you do not want your doctor thinking the Arava caused this.  That happened to me by the way.   Only a few people have a blood pressure problem with Arava and you could very well NOT be one of those people.  Please do not borrow trouble before it happens.  That kind of thinking causes stress and high blood pressure all by itself without a new medicine.  IMO you are going to be OK, Mary.  Lots of folks that have post here have real good results with Arava and inflamitory arthritis. Harv – Hide quoted text — Show quoted text – I am supposed to start Arava, the MTX bottomed out my stomach even with the folic acid.  I read in previous posts that some people had their blood pressure skyrocket w/ it.  I already have hbp and had to increase my bp meds from the prednisone pushing it up.  I’m a bit worried that I will have a BAD problem if it shoots it up.  My doc didn’t seem worried. I, on the other hand, having lived thu a few bad side effects and reactions of meds am much more cautious.   I feel trapped because I need something to stop this, but I’m scared about this drug.  I know that from the insert only 6% had an increase and of that 6% a lot already had hbp.  My insurance won’t pay for injectables (if I had to pay it would take all and more of what I make each month to cover).  What do I do here?  After this is Enbrel and Remicade.  With my allergies I am sure to have a problem with the mouse protein one.   Can you tell I am a blithering idiot at the moment?  I am home from work sick today with a virus.   One of the nurses at work brought her sick kids in last week since the sitter wouldn’t watch them.  She works next to a friend of mine who is HIV+.  No common sense at all.  He’s been sick with the cold thing since Christmas and broke his ribs in a fall about a week ago.  At any rate, I’ve finally succumbed to the *&%#$ thing which makes me a total basket case on top of this drug deal.  I am going to wait to start it (Arava) till I am over the virus, so I have some time to think and decide.   If you can shed some light into what experience you have had with it I would most appreciate it.  If you had a bad bp, what did you do to keep from stroking out? Thanks, Mary  

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Hi Mary, About the time I started Arava, my blood pressure became slightly elevated.  I now take 1/2 the normal does of high blood pressure medicine and it is fine.  I had loose bowels when I started, but it went away.  The other side effect has been a lot more energy. The really good news is that it pretty much stopped my RA and AS! Ray – Hide quoted text — Show quoted text – I am supposed to start Arava, the MTX bottomed out my stomach even with the folic acid.  I read in previous posts that some people had their blood pressure skyrocket w/ it.  I already have hbp and had to increase my bp meds from the prednisone pushing it up.  I’m a bit worried that I will have a BAD problem if it shoots it up.  My doc didn’t seem worried. I, on the other hand, having lived thu a few bad side effects and reactions of meds am much more cautious. I feel trapped because I need something to stop this, but I’m scared about this drug.  I know that from the insert only 6% had an increase and of that 6% a lot already had hbp.  My insurance won’t pay for injectables (if I had to pay it would take all and more of what I make each month to cover).  What do I do here?  After this is Enbrel and Remicade.  With my allergies I am sure to have a problem with the mouse protein one. Can you tell I am a blithering idiot at the moment?  I am home from work sick today with a virus.   One of the nurses at work brought her sick kids in last week since the sitter wouldn’t watch them.  She works next to a friend of mine who is HIV+.  No common sense at all.  He’s been sick with the cold thing since Christmas and broke his ribs in a fall about a week ago.  At any rate, I’ve finally succumbed to the *&%#$ thing which makes me a total basket case on top of this drug deal.  I am going to wait to start it (Arava) till I am over the virus, so I have some time to think and decide. If you can shed some light into what experience you have had with it I would most appreciate it.  If you had a bad bp, what did you do to keep from stroking out? Thanks, Mary

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I am supposed to start Arava, the MTX bottomed out my stomach even with the folic acid.  I read in previous posts that some people had their blood pressure skyrocket w/ it.  I already have hbp and had to increase my bp meds from the prednisone pushing it up.  I’m a bit worried that I will have a BAD problem if it shoots it up.  My doc didn’t seem worried. I, on the other hand, having lived thu a few bad side effects and reactions of meds am much more cautious.   I feel trapped because I need something to stop this, but I’m scared about this drug.  I know that from the insert only 6% had an increase and of that 6% a lot already had hbp.  My insurance won’t pay for injectables (if I had to pay it would take all and more of what I make each month to cover).  What do I do here?  After this is Enbrel and Remicade.  With my allergies I am sure to have a problem with the mouse protein one.   Can you tell I am a blithering idiot at the moment?  I am home from work sick today with a virus.   One of the nurses at work brought her sick kids in last week since the sitter wouldn’t watch them.  She works next to a friend of mine who is HIV+.  No common sense at all.  He’s been sick with the cold thing since Christmas and broke his ribs in a fall about a week ago.  At any rate, I’ve finally succumbed to the *&%#$ thing which makes me a total basket case on top of this drug deal.  I am going to wait to start it (Arava) till I am over the virus, so I have some time to think and decide.   If you can shed some light into what experience you have had with it I would most appreciate it.  If you had a bad bp, what did you do to keep from stroking out? Thanks, Mary  

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@webtv.net says… I feel trapped because I need something to stop this, but I’m scared about this drug.  I know that from the insert only 6% had an increase and of that 6% a lot already had hbp.  My insurance won’t pay for injectables (if I had to pay it would take all and more of what I make each month to cover).  What do I do here?  After this is Enbrel and Remicade.  With my allergies I am sure to have a problem with the mouse protein one.  

First off injectable MTX is very inexpensive. I just checked on the internet and a 250 mg vial costs $20 so if you are taking 25 mg, a vial would last about 2 1/2 months.  Thats less than $10 per month at the high dose, even cheaper at the lower doses. Syringes are inexpensive about 25 cents or slightly more depending on how many you buy (so $1-$2/month). Many folks here don’t even bother hassling with insurance because the co-pay is about the same as the actual cost, so don’t reject the mtx option out of hand.  Arava is known to cause BP increases, and I am surprised your Dr is not more concerned about it.  You might try the Arava and monitor the BP carefully, because not everyone has trouble.  Enbrel is a great option but it is an injectable, so would your insurance company cover it?   Last option is Remicade which is given as an out-patient procedure, so it might be covered differently by your insurance.  I would call your insurance company and find out about the coverage.  The reaction issue is more common with Remicade, generally few people react to Enbrel.  Hope that helps. — MZ — Visit my website: www.mzuschlag.com reply to my e-mail: mzuschlag at attbi dot com

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I am at two months on the Arava, so far bp is still up, not being too well controlled by the increased bp meds; the anxiety feelings I have been having are now bona fide anxiety attacks…horribly bad… red faced, skin crawly, pulse pounding in my head, rapid heart beat.  My doc is out till Monday and the nurse said to stop taking it and see how I feel.  I had a friend suggest that I try alternate day dosing of the Arava.  I don’t want to stop taking it because it has given me such improvement.  Any one have experience with the anxiety/bp and tried the alternate day??  I don’t want to go through this, especially w/ the bp.  He wanted me to start a diuretic w/ my bp med but every one they called in was a sulpha derivitave….no no for me.  I can only take Ace inhibitors (Prinivil), allergic to Calcium blockers and can’t take Beta blockers b/c of asthma.  Each week the bp rises more and more and now this anxiety stuff.  Cripes.  I want off this bus. Mary

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Any one have experience with the anxiety/bp and tried the alternate day??

Mary, I did alternate day, not for those problems but because of the runs. It did help the side effects, and what releif I did get from Arava was the same as when I was taking it every day. ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s eBay Auctions Plus Size and Vintage Clothing http://www.fadedjeans.com/tina/

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Careful there – don’t stop taking the Arava without chatting with your Dr first — there is a special way of stopping this medication. tanya TACHANKA SIBERIANS "All Four Paws Rolling" Wenatchee, WA

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Hi Mary, Others have mentioned anxiety with Arava.  I was so laid back that it just gave me more energy, but i can see how it could turn into anxiety.  My bp went up slightly, but is controlled by 1/2 the normal dose of a blood pressure medicine.  There have been studies that say diuretics do just as good as blood pressure medicine and are much less of a health hazard.  But, I wonder if diuretics will help the Arava induced high blood pressure. You might want to skip every other dose until you see your Doctor. Ray – Hide quoted text — Show quoted text – I am at two months on the Arava, so far bp is still up, not being too well controlled by the increased bp meds; the anxiety feelings I have been having are now bona fide anxiety attacks…horribly bad… red faced, skin crawly, pulse pounding in my head, rapid heart beat.  My doc is out till Monday and the nurse said to stop taking it and see how I feel.  I had a friend suggest that I try alternate day dosing of the Arava.  I don’t want to stop taking it because it has given me such improvement.  Any one have experience with the anxiety/bp and tried the alternate day??  I don’t want to go through this, especially w/ the bp.  He wanted me to start a diuretic w/ my bp med but every one they called in was a sulpha derivitave….no no for me.  I can only take Ace inhibitors (Prinivil), allergic to Calcium blockers and can’t take Beta blockers b/c of asthma.  Each week the bp rises more and more and now this anxiety stuff.  Cripes.  I want off this bus. Mary

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Careful there – don’t stop taking the Arava without chatting with your Dr first — there is a special way of stopping this medication. tanya TACHANKA SIBERIANS "All Four Paws Rolling" Wenatchee, WA

Well said,,,,,,And please print a copy of your own post and hand it to the doctor. Harv

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Hi Mary, Here are some thoughts I had about this situation. 1. You do not mention what dose of Arava you are taking.  It comes as 20 mg and 10 mg.  If you are on 20 mg,, why not decrease to 10 mg? If on 10 mg, you could certainly consider going to every other day. Arava stays around for a long time because it is excreted primarily by the liver with bile acids.  The bile acidsare then reabsorbed in the intestine and some of the Arava with them.   If you want to get the Arava out of your system (for example if you are having an allergic reaction), you need to take activated charcoal and/or Cholestyramine to bind the Arava and bile acids. 2. Regarding your blood pressure, you have mentioned some but not all the types of anti hypertensive.  You have left off two whole classes of drugs for blood pressure, the angiotensin receptor blocking drugs or ARBs – such as Cozaar or Losartan and drugs like clonidine or catapres (Catapres comes as a patch).  In addition, there are a couple of diuretics such as ethacrynic acid which are not sulphonamides.   Hope this is helpful. DrSusan – Hide quoted text — Show quoted text -I am at two months on the Arava, so far bp is still up, not being too well controlled by the increased bp meds; the anxiety feelings I have been having are now bona fide anxiety attacks…horribly bad… red faced, skin crawly, pulse pounding in my head, rapid heart beat.  My doc is out till Monday and the nurse said to stop taking it and see how I feel.  I had a friend suggest that I try alternate day dosing of the Arava.  I don’t want to stop taking it because it has given me such improvement.  Any one have experience with the anxiety/bp and tried the alternate day??  I don’t want to go through this, especially w/ the bp.  He wanted me to start a diuretic w/ my bp med but every one they called in was a sulpha derivitave….no no for me.  I can only take Ace inhibitors (Prinivil), allergic to Calcium blockers and can’t take Beta blockers b/c of asthma.  Each week the bp rises more and more and now this anxiety stuff.  Cripes.  I want off this bus. Mary

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My doc is out till Monday and the nurse said to stop taking it and see how I feel.

Arava stays in your body for quite a long while.  Skipping a few doses is probably not going to do much.  If the Arava is indeed the culprit, they can give you another drug to wash it out of your system.  Cant think of the name right now. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

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Dr. Susan-We have missed your wise head around here.  REALLY glad you are back. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

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Hi I was taking Arava 20mg every other day and doing fine with it, but will admit the FDA  situation made me nervous due to my history with lymphoma.  I talked to my doctor and a pharmacist and they both told me I could drop it cold. someone here said that shouldn’t be done.  What’s the scoop???? Janet

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Hi I was taking Arava 20mg every other day and doing fine with it, but will admit the FDA  situation made me nervous due to my history with lymphoma.  I talked to my doctor and a pharmacist and they both told me I could drop it cold. someone here said that shouldn’t be done.  What’s the scoop???? Janet

Hhhhhhm, Your history is important and should of been considered when starting you on the drug.  Having inflam.arth. is important too and a different drug suggested by your RD should be in place before stopping Arava.  I do not know of any reason that you could not stop Arava cold except for the fact that you might go into a strong flare. Harv

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Hi I was taking Arava 20mg every other day and doing fine with it, but will admit the FDA  situation made me nervous due to my history with lymphoma.  I talked to my doctor and a pharmacist and they both told me I could drop it cold. someone here said that shouldn’t be done.  What’s the scoop???? Janet

I don’t know of any reason you can’t drop it cold except the possibility of a flare as Harv mentioned.  Maybe what the person meant was that it takes up to 2 years to completely leave your system after you stop taking it, hence the strong recommendation against it for women of child bearing potential. — Nann cut the Gator cheer to email me I like nonsense; it wakes up the brain cells. – Dr Seuss

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Hi guys, Thanks for the replies.  I am on 20mg now and am trying e/o day…so far so good.  I went to my pcp Friday to get a check on the bp and his ideas on the Arava.  BP was much better-close to normal after 2 days off the Arava.  Considering how long it’s in your system I wonder if it was just a tiny overload that was doing it or maby hysteria setting in.  Two days should not make such a big difference. I did notice yesterday when I took it that I was ‘up’ more than on Friday.  He said don’t stop it..to titrate it to a bearable level (and talk to the RD this week).  Thank you Dr. Susan for your input.  I think the newer ACB inhibitor(s) would be a good choice- no more coughing too.  I’ll see how I do..going to monitor the bp some more and continue increasing my exercise (I feel that good {{major smiles}}).  I’ve lost 10 pounds since the start of the Arava and that is helping too. I’m not too concerned about the **new warnings** on the Arava. Frequent blood work and paying attention to how you feel will catch any problems quickly.  Anyone with a hepatic co-morbidity should think twice before using it though (i.e. hepatitis, cirhosis etc..).  My pcp put it well…it’s a drug best left to the specialists until it’s been around a long, long time. I wouldn’t trade how I’ve improved for anything.  The pcp mentioned that it’s been almost two years since I’ve felt this close to normal – maby I forgot what it feels like.  He could be right.  All I’ve known since this crap started has been exhaustion, immobility and pain.  I’m sure the inactivity has NOT helped the bp one bit. ~Mary

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From the Arava insert: PRECAUTIONS General Need for Drug Elimination The active metabolite of leflunomide is eliminated slowly from the plasma. In instances of any serious toxicity from ARAVA, including hypersensitivity, use of a drug elimination procedure as described in this section is highly recommended to reduce the drug concentration more rapidly after stopping ARAVA therapy. If hypersensitivity is the suspected clinical mechanism, more prolonged cholestyramine or charcoal administration may be necessary to achieve rapid and sufficient clearance. The duration may be modified based on the clinical status of the patient. Cholestyramine given orally at a dose of 8 g three times a day for 24 hours to three healthy volunteers decreased plasma levels of M1 by approximately 40% in 24 hours and by 49 to 65% in 48 hours. Administration of activated charcoal (powder made into a suspension) orally or via nasogastric tube (50 g every 6 hours for 24 hours) has been shown to reduce plasma concentrations of the active metabolite, M1, by 37% in 24 hours and by 48% in 48 hours. These drug elimination procedures may be repeated if clinically necessary. tanya TACHANKA SIBERIANS "All Four Paws Rolling" Wenatchee, WA

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Thanks for the replies.  After resisting meth and arava for 5 yrs, I went into major problems this summer and was totally dependent and bedbound for 3 months with another two  months of assisted limited functioning.  Meth was started and made a big difference, but not enuf to break the cycle to make me somewhat independent again.  The decision to do arava was heavily discussed with all my doctors and pharmacists.  It was the icing on the cake with regards to getting me back to "normal".  I am heavily screened blood level wise biweekly to monthly.  However,  i am willing to regress some by  giving up arava to feel more secure at this point.  Unlike most I don’t seem to go into periodic flares, just major outbursts and am now on meth, duralgesic patches, lortabs, pred, muscles relaxers also, most of which I wasn’t on when the flare from hell hit.  Thanks for your concern.  Janet

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Careful there – don’t stop taking the Arava without chatting with your Dr first — there is a special way of stopping this medication.

I was orderd off my meds just yesterday because of some symptoms the doctor wants to check out.  I will be off both Arava and Vioxx until Monday.  I had already taken my weekly mtx so that is all set till next wednesday.  I have been having lightheadedness, nausea, abdominal pain and wicked headaches.  I often get this mildy but for the last month or so they have been much more frequent.  I am wondering what the issue is with stopping suddenly?  Any suggestions for how to get through till Monday without these meds.?

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Does anyone know what the signs of trouble are in regard to side effects with Arava?  my print out from the pharmacy is just the standard….I am wondering if there are any symptoms of liver problems?

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You probably won’t even notice going off the arava for that short a time.  I never did (except maybe in my head). The arava stays in the system for up to two years although it does wain! Kelly

– Hide quoted text — Show quoted text – Careful there – don’t stop taking the Arava without chatting with your Dr first — there is a special way of stopping this medication. I was orderd off my meds just yesterday because of some symptoms the doctor wants to check out.  I will be off both Arava and Vioxx until Monday.  I had already taken my weekly mtx so that is all set till next wednesday.  I have been having lightheadedness, nausea, abdominal pain and wicked headaches. I often get this mildy but for the last month or so they have been much more frequent.  I am wondering what the issue is with stopping suddenly?  Any suggestions for how to get through till Monday without these meds.?

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The Arava will stay in your system.  Probably wont even notice you have stopped than. The Vioxx is a different matter.  If it is working well for you, you could have some increase pain and inflammation. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

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Kelly, no offense, but you make it sound like it is working for that long.  The effects will lessen with in a month.  It has a half life, which I can not remember right off hand, and once it gets to a certain level it will not help you. – Hide quoted text — Show quoted text – You probably won’t even notice going off the arava for that short a time.  I never did (except maybe in my head). The arava stays in the system for up to two years although it does wain!

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Sorry Dan – I did make it sound that way – and I sure did not mean it too. It did take quite a while to leave my system though.  Going from full to 1/2 dose it took a few months to really notice a major change.  Not that it did the whole trick anyhow.  But for a week or so (as I understood Nan to mean that she was going off it) it should not noticably matter.  Probably matter more that she wasn’t taking the vioxx in my experience. No offense! Nice to see someone catch my brainfog! Kelly

– Hide quoted text — Show quoted text – Kelly, no offense, but you make it sound like it is working for that long. The effects will lessen with in a month.  It has a half life, which I can not remember right off hand, and once it gets to a certain level it will not help you. You probably won’t even notice going off the arava for that short a time.  I never did (except maybe in my head). The arava stays in the system for up to two years although it does wain!

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So glad to hear.  3 years of remission is something of a miracle these days – would have been a shame to lose it. Kelly

– Hide quoted text — Show quoted text – I have great news.  My doc fit me in today and he decided to cut back my mtx by a third, my Vioxx in half and my prevacid in half, keeping the Arava as is.  My blood work was perfect and he thinks the symptoms WERE a result of the meds. but that my joints are doing so well we can cut back on the meds.!  He believes, and he said this with caution, that after three years in remission, albeit on meds., that I may be looking at a full remission so we are going to go with the new plan and if all stays well with the reduced dosages, he will reduce again in 2-4 months.  Just being off the vioxx and prevacid for 2 days, I saw a difference in the lightheadedness and the nausea.  So, keep you fingers crossed that this works.  Thanks for all the wonderful advice and support. I will keep you posted.

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So glad to hear.  3 years of remission is something of a miracle these days – would have been a shame to lose it. Kelly

So true.  Three years before a cut back.  It is a lesson to us all when we feel good and think about cutting back.  Good luck with it. Harv

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I have great news.  My doc fit me in today and he decided to cut back my mtx by a third, my Vioxx in half and my prevacid in half, keeping the Arava as is.  My blood work was perfect and he thinks the symptoms WERE a result of the meds. but that my joints are doing so well we can cut back on the meds.!  He believes, and he said this with caution, that after three years in remission, albeit on meds., that I may be looking at a full remission so we are going to go with the new plan and if all stays well with the reduced dosages, he will reduce again in 2-4 months.  Just being off the vioxx and prevacid for 2 days, I saw a difference in the lightheadedness and the nausea.  So, keep you fingers crossed that this works.  Thanks for all the wonderful advice and support.  I will keep you posted.

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