Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 , I just came off of predisone after nine years. It is hard getting off the drug. I did it by dropping the dosage a 1/2 mg, a month. I did it very slowly and it took a long time. Sometimes I would have to go back up for a few days. Yes, my pain is worse now but for me, I think I am better off. I am off of it but there are times when I over do or a flare and I have to take it, to get out of the flare. I just took my time and went very slowly. Lynn (MeMom) [ ] Re: haven't been around much lately > > >> Boy, it sounds like exactly what has been happening to me! I was so >> thrilled when the Embrel seemed to be really helping, but as soon as >> we started weaning the prednisone again, I started having more >> trouble. I went from 15mg, to 12.5 for a month which was not TOO >> bad, to now I've been on 10 for 3 weeks and am absolutely miserable >> still. >> >> The current plan is that after I've been on 10 for a full month, I'm >> supposed to start decreasing by just 1mg per month from then on. >> But if I never get on an even keel at 1mg, I'm afraid of what a >> further reduction will bring. >> >> I REALLY want to get off the prednisone. I haven't been on it as >> long as you have, but I've been on it since January, and have gained >> 25 pounds since then. I haven't had any other serious problems from >> it yet, but I don't want to get them either! >> >> OTOH, my quality of life right now is pretty miserable, and at this >> rate of reduction, it's going to take me 10 more months to be off >> the stuff. I'm not serious, and I know you can't do this, but >> sometimes I wish it were safe to just stop " cold turkey " and get it >> over with, even if it meant I was going to feel REALLY terrible for >> a couple of weeks! >> >> Then I was talking to my new " case manager " nurse who is assigned by >> my health care plan, and she told me that some people have to take >> prednisone indefinitely to control their RA, even with other drugs. >> I'd heard of that, but the people I'd heard of doing that were >> taking really small doses, like 2-5mg daily, not 15 (which is where >> I've been comfortable) She said that there are people who end up >> taking that much long term, that anything under 20mg was >> considered " low dose " , and that although it was best not to need >> any, when you were balancing quality of life vs. the meds, sometimes >> you just need to take the prednisone. >> >> So now I don't know what to think. >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Thanks, . That's kind of what I'd learned previously. I've been a little nervous about how long I've been on this much prednisone, but until I had been on the Enbrel a few weeks nothing seemed to be working well enough (except the Arava, which I can no longer take because of my liver) to even attempt coming off it. I just wish it didn't take so darned long to reduce it, and that I didn't feel so crummy each time we take a step down. > > , > > Sorry that you are having such a hard time weaning off the prednisone. An > endocrinologist may be of help. > > A couple of things about what the nurse said: > > > 1) It's NOT true that anything under 20 mg daily for longterm use in RA is > generally considered low dose. The majority of researchers and > rheumatologists would more likely set the cutoff at 10 mg (this is the upper > limit for " low dose " as defined by the 2002 ACR guidelines). Some would set > the bar even lower at 5 mg. Others define low dose at 7.5 mg or lower since > 7.5 mg is thought to be close to the physiologic dose. But up to 20 mg daily > longterm for RA considered as low dose? - no way. That would not be the > majority opinion. > > 2) The problem with taking prednisone indefinitely is that there is a > growing body of evidence that the clinical and radiological benefits are > short-lived, but the deleterious effects are not. > > While attempting to wean, it's hard to sort out whether the pain is due to > an increase in disease activity or due to withdrawal of the drug itself. > There is evidence that the pain is often due to withdrawal of the drug > (because the adrenal gland is no longer functioning normally) and not > because of a flare. For example, patients who have been given prednisone for > conditions other than RA, such as after an organ transplant, experience pain > (and/or other symptoms) while trying to wean off of it. They didn't have > pain before, but they do when they try to discontinue the prednisone that > they have been taking daily to prevent rejection. > > > Check out the editorial I sent earlier today from the journal Rheumatology. > It's a very recent review of the evidence to date: > http://rheumatology.oxfordjournals.org/cgi/content/full/45/9/1058 > > > American College of Rheumatology (ACR) 2002 RA treatment guidelines: > http://www.rheumatology.org/publications/guidelines/raguidelines02.as p?aud=mem > > > " Steroid withdrawal after long-term medication for immunosuppressive therapy > in renal transplant patients: adrenal response and clinical implications " : > http://ndt.oxfordjournals.org/cgi/content/full/19/10/2615 > > > > > Not an MD > > I'll tell you where to go! > > Mayo Clinic in Rochester > http://www.mayoclinic.org/rochester > > s Hopkins Medicine > http://www.hopkinsmedicine.org > > > [ ] Re: haven't been around much lately > > > > Boy, it sounds like exactly what has been happening to me! I was so > > thrilled when the Embrel seemed to be really helping, but as soon as > > we started weaning the prednisone again, I started having more > > trouble. I went from 15mg, to 12.5 for a month which was not TOO > > bad, to now I've been on 10 for 3 weeks and am absolutely miserable > > still. > > > > The current plan is that after I've been on 10 for a full month, I'm > > supposed to start decreasing by just 1mg per month from then on. > > But if I never get on an even keel at 1mg, I'm afraid of what a > > further reduction will bring. > > > > I REALLY want to get off the prednisone. I haven't been on it as > > long as you have, but I've been on it since January, and have gained > > 25 pounds since then. I haven't had any other serious problems from > > it yet, but I don't want to get them either! > > > > OTOH, my quality of life right now is pretty miserable, and at this > > rate of reduction, it's going to take me 10 more months to be off > > the stuff. I'm not serious, and I know you can't do this, but > > sometimes I wish it were safe to just stop " cold turkey " and get it > > over with, even if it meant I was going to feel REALLY terrible for > > a couple of weeks! > > > > Then I was talking to my new " case manager " nurse who is assigned by > > my health care plan, and she told me that some people have to take > > prednisone indefinitely to control their RA, even with other drugs. > > I'd heard of that, but the people I'd heard of doing that were > > taking really small doses, like 2-5mg daily, not 15 (which is where > > I've been comfortable) She said that there are people who end up > > taking that much long term, that anything under 20mg was > > considered " low dose " , and that although it was best not to need > > any, when you were balancing quality of life vs. the meds, sometimes > > you just need to take the prednisone. > > > > So now I don't know what to think. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Did you try reducing by larger amounts first, and have trouble with it? Did you try reducing by 1mg at a time? How did you hit on the 1/2 mg reduction scheme? Thanks, --- In , " Ruf-Caimi " <ruf-caimi@...> wrote: > > , > I just came off of predisone after nine years. It is hard getting off the > drug. I did it by dropping the dosage a 1/2 mg, a month. I did it very > slowly and it took a long time. Sometimes I would have to go back up for a > few days. Yes, my pain is worse now but for me, I think I am better off. I > am off of it but there are times when I over do or a flare and I have to > take it, to get out of the flare. I just took my time and went very slowly. > Lynn (MeMom) > [ ] Re: haven't been around much lately > > > > > >> Boy, it sounds like exactly what has been happening to me! I was so > >> thrilled when the Embrel seemed to be really helping, but as soon as > >> we started weaning the prednisone again, I started having more > >> trouble. I went from 15mg, to 12.5 for a month which was not TOO > >> bad, to now I've been on 10 for 3 weeks and am absolutely miserable > >> still. > >> > >> The current plan is that after I've been on 10 for a full month, I'm > >> supposed to start decreasing by just 1mg per month from then on. > >> But if I never get on an even keel at 1mg, I'm afraid of what a > >> further reduction will bring. > >> > >> I REALLY want to get off the prednisone. I haven't been on it as > >> long as you have, but I've been on it since January, and have gained > >> 25 pounds since then. I haven't had any other serious problems from > >> it yet, but I don't want to get them either! > >> > >> OTOH, my quality of life right now is pretty miserable, and at this > >> rate of reduction, it's going to take me 10 more months to be off > >> the stuff. I'm not serious, and I know you can't do this, but > >> sometimes I wish it were safe to just stop " cold turkey " and get it > >> over with, even if it meant I was going to feel REALLY terrible for > >> a couple of weeks! > >> > >> Then I was talking to my new " case manager " nurse who is assigned by > >> my health care plan, and she told me that some people have to take > >> prednisone indefinitely to control their RA, even with other drugs. > >> I'd heard of that, but the people I'd heard of doing that were > >> taking really small doses, like 2-5mg daily, not 15 (which is where > >> I've been comfortable) She said that there are people who end up > >> taking that much long term, that anything under 20mg was > >> considered " low dose " , and that although it was best not to need > >> any, when you were balancing quality of life vs. the meds, sometimes > >> you just need to take the prednisone. > >> > >> So now I don't know what to think. > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 , I kept it at the 1/2 mg from the start. had sent me a site, I think the same one she sent you. Read it,it is interesting and helpful. From that I knew I had to be careful and patient. When I hit the 1/2 mg. I went to every other day. Stretched it out from there. At that point the doctor told me once you get to 1/2 mg you can stop the drug. I always did the 1/2 mg, never 1 mg. You just have to be careful. Predisone was helpful and harmful to me. As I said I do notice a lot more pain. Even pain in places I didn't feel it before. Also the stiffness is much worse. I think it is still wise, if possible, to get off the drug. However, if you can't or you have to have it then that is the way it is, nothing wrong with that. I was upset because I was having eye problems and they told me it was from the predisone. Good luck with this, you just have to be patient and go slow. If I can help let me know, Lynn [ ] Re: haven't been around much lately > >> > >> > >> >> Boy, it sounds like exactly what has been happening to me! I > was so >> >> thrilled when the Embrel seemed to be really helping, but as > soon as >> >> we started weaning the prednisone again, I started having more >> >> trouble. I went from 15mg, to 12.5 for a month which was not > TOO >> >> bad, to now I've been on 10 for 3 weeks and am absolutely > miserable >> >> still. >> >> >> >> The current plan is that after I've been on 10 for a full > month, I'm >> >> supposed to start decreasing by just 1mg per month from then on. >> >> But if I never get on an even keel at 1mg, I'm afraid of what a >> >> further reduction will bring. >> >> >> >> I REALLY want to get off the prednisone. I haven't been on it > as >> >> long as you have, but I've been on it since January, and have > gained >> >> 25 pounds since then. I haven't had any other serious problems > from >> >> it yet, but I don't want to get them either! >> >> >> >> OTOH, my quality of life right now is pretty miserable, and at > this >> >> rate of reduction, it's going to take me 10 more months to be > off >> >> the stuff. I'm not serious, and I know you can't do this, but >> >> sometimes I wish it were safe to just stop " cold turkey " and > get it >> >> over with, even if it meant I was going to feel REALLY terrible > for >> >> a couple of weeks! >> >> >> >> Then I was talking to my new " case manager " nurse who is > assigned by >> >> my health care plan, and she told me that some people have to > take >> >> prednisone indefinitely to control their RA, even with other > drugs. >> >> I'd heard of that, but the people I'd heard of doing that were >> >> taking really small doses, like 2-5mg daily, not 15 (which is > where >> >> I've been comfortable) She said that there are people who end up >> >> taking that much long term, that anything under 20mg was >> >> considered " low dose " , and that although it was best not to need >> >> any, when you were balancing quality of life vs. the meds, > sometimes >> >> you just need to take the prednisone. >> >> >> >> So now I don't know what to think. >> >> >> >> >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
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