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Are There Guidelines for Prednisone Tapers
Polymyalgia Rheumatica (PMR) | Last Active: Sep 7 7:34am | Replies (54)Comment receiving replies
Thats a good question. I dont think an answer fits everyone. The Dr, after doing tons of testing to determine what you dont have will start you on prednisone and then tell you to start tapering. Most of the data for PMR suggests it can last for years. The fact your sed rate is normal also doesnt catch everyone. My sed rate and crp were never elevated. Yet the fact that prednisone worked in 4 hours was the diagnosis. I think one other issue is , I had never had a crp or sed rate test. What was my normal? Maybe it was elevated for me. Prednisone is a nasty long term drug. I tried to taper several times and could not get below 10mg. Then on month 5 I tried a taper to 5mg and it worked. Over that 5 month I tapered to zero. My cortisol restarted and I moved on. That is not everyone. The longer you are on prednisone the harder this will get. So I say just pay attention to what your body tells you and be determined to not stay on corticosteroids. good luck
Replies to "Thats a good question. I dont think an answer fits everyone. The Dr, after doing tons..."
@tuckerp my PMR journey has been similar to years. My CRP and SED rate were just moderately elevated if at all, but clearly symptoms and Prednisone response said PMR. I’ve been able to taper off prednisone one time, but now back on it for over a year and unsuccessful so far. Appreciate your encouragement-really want to taper off pred. Considering starting Kevzara if I’m unable to taper off. All the best!
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@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!