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Are There Guidelines for Prednisone Tapers
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (51)Comment receiving replies
@tuckerp I'm interested to know a bit more how you succeeded on month 5 and how long it took you to get to zero. In reference to the original question we're all on our individual taper journeys and I've read a lot of them here on this site and am very grateful for all the info. I've probably learned a lot more here than in reading all the scientific and clinical reports/guidelines (which I have been doing a lot in the past 3 months since my PMR started). My docs (a general internist and a family doc) don't seem to know a lot about PMR and it would probably be a year before I could get an appointment with a rheumatologist knowledgeable about PMR (live in Canada). I'm at high risk for osteoporosis and sarcopenia and want to be off prednisone as quickly as possible (my twin sister snapped her femur head while on bisphonates to treat her osteoporosis several years ago). If anyone is willing to chime in please do. My initial taper was very fast starting at 12.5 mg for a week, to 10 for a week to 7.5 for a week then 5 for a week. Needless to say I only made it to 7.5 for a few days before the pain was getting unbearable, having to start again. However, this next taper was for 2 weeks at each dose. 12.5 mg controls my PMR very well, 10 is not bad with a couple extra hours of discomfort in the morning. My sed rate was not elevated on first testing (has not been tested since) but CRP was 21 pre-prednisone (all my previous CRP tests pre-PMR have been around 1.0). I managed to get it to 15 on the first taper to 7.5 mg. On the 2nd taper, after 2 weeks at 12.5 mg, my CRP was down to 7.5 so I was getting quite happy. Instead of listening to my doc I started tapering 1 mg at a time when I got to 10 and I've been able to get down to 7 mg but CRP has inched up again as has the pain level and length of pain in the morning/early afternoon. I seem to tolerate the pain much better now knowing it's just a fact of life until it eventually "burns out". So should I keep going at 7 mg and hope my CRP goes down eventually or should I go back up for a while to 10 where things were better controlled? I don't see my doc for another 10 days. Sorry for the longwinded story. I know @dadcue had lots of problems getting from 10 to 7 before getting a biologic eventually and others have struggled in this dosing range. I'm especially interested in hearing from people who had a normal ESR but elevated CRP and who had it measured quite often. Thanks everyone!
Replies to "@tuckerp I'm interested to know a bit more how you succeeded on month 5 and how..."
@dave923 thanks for asking but I am not sure I can help. We are all so different. My wife was diagnosed just a few months before my PMR with GBM. They put her on Dexamethasone. Large doses to start. I was her caretaker so I learned what corticosteroids can do to the body. My PMR started right after our covid shot. I spent 2 months trying to diagnosis. X-rays, MRI, 3 doctors. My sed rate and CRP were normal range. My HS-CRP was elevated. Dr said thats related to other issues. I then researched and found a site on PMR. I was convinced this was me. I tried my wifes Dexamethasone and in 4 hours was cured. I speak on this site as if I took prednisone but it was Dex at a 5 to 1 ratio. So I started on 4mg Dex calling that 20mg prednisone. I read from my wife that you can play around with dosage in the first 2 weeks and not suffer any withdrawals. I did 4mg for 3 or 4 days then went to 3(15 prednison) for about 3 days then went to 2mg(10mg prednisone) then went to 1mg dex or 5mg prednisone and the pain came back. So I went back to 2mg or 10mg prednisone. I tried every other week for next 5 months to go to 1mg and I could not do it. Then at month 5 I dropped and it was painful but not unbearable. I stayed on 1mg for about 2 weeks and dropped to a half tablet and I made it. I statyed on .5 tablet for 2 weeks and then quit. After I had started the dex I had made an appointment at Mayo clinic. I got in within a couple weeks. He ran every test he could think of and finally agreed I had PMR. He did not want to keep me on Dex but agreed since I was already on it. He allowed/encouraged me to taper and sort of treat myself. Dex is a stronger longer lasting version of prednisone . Maybe that made a difference. When I was doing .5 tablets it was about half the size of a grain of rice. Thats my version of PMR. Its been 5 years and no return. My wife passed and that was most of the stress I believe.
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@dave923
I had problems right from the start of PMR. It took me 10 years to go from 35 mg down to 10 mg. My diagnosis of PMR was complicated by being diagnosed with inflammatory arthritis at the age of 32. PMR was added on at the age of 52.
The lesson I learned was that having multiple autoimmune conditions makes it nearly impossible to get off prednisone. The biologic that was tried when I was stuck on 10 mg of prednisone made tapering relatively simple.. Even with the biologic, tapering off prednisone has been a long ordeal. I was just lucky to be able to taper off prednisone.