Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 , 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.asp?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...
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