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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 17 minutes ago | Replies (81)Comment receiving replies
@dave923 Thanks Dave. Great to hear accounts of people still doing striong rides despite PMR and Pred....I'm only at the very beginning of this but ewill heed your example. One question....I feel that 20mg is quite a stroing initial does for me, although that being said i think to some extent that';s just to prove i have PMR as I said in my original post. My sypmtoms have vanished. I'm not delusional but i hope that maybe like you I can start at something lower like 12.5mg. I just feel that starting at that reduces the tapering time. Or is that just too simplistic. I guess the body will tell you?
Replies to "@dave923 Thanks Dave. Great to hear accounts of people still doing striong rides despite PMR and..."
@martyn
Sorry to bust your bubble……DON’T taper more than 25%. Then plan to be pain free for minimum 2 weeks and try again. You go too big and end up going back up, into a roller coaster effect.
That is my experience and what I have read here many times.
yes too simplistic.
@martyn the symptoms seem all over the place. I refused pred (side effects) for 2.5 months. Started what I thought was very high 30MG, for 1 week, then taper each week by 5MG. My pain was gone completely 1-2 hours after 1st dose, incredible. Tapered to 10MG, then more slowly to 2.5MG Since my total time on prednisone so far is March 20 to today the tapering has been easy, but PMR pain is definitely there. My last few weeks have been 2.5MG 5 days, 4, then 3 days a week and so on. My doc said 'trust the sediment test, down from 125 to 22, just about normal. I was scared but it is working. There is hope but it takes time.
@martyn
I see that @rosette has given you a very wise answer to tapering. I would add that you need to find your minimum effective dose that manages most of the daily symptoms. I was prescribed 12.5 mg at the start which worked nicely as did 10 mg. From 10, it's important to go much slower only dropping 1 mg at a time and staying at the dose long enough to keep things under control or go to an alternating 10, 9, 10, 9, etc strategy. Hopefully, your doc will be able to help plan with you. As you can see from this forum, everyone's taper program is different and some manage things quicker than others.
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@martyn I agree with @rosette that you shouldn't be too aggressive in tapering off of prednisone. Your goal should be to find the lowest effective dose that controls your PMR, and then stay there for an extended period of time. You can't just keep trying to reduce down to zero. PMR burns itself out in most people, but it usually takes at least a year or two. I have been taking Actemra throughout most of my treatment, and that allowed me to taper off prednisone fairly rapidly. To get from 20 mg prednisone down to 10, I stepped down 2.5 mg every 2 weeks. My rheumatologist had me stay at 10 mg 4 weeks, and then I stepped down 1 mg every 2 weeks to get down to 5.
You need to step down gradually and find the dose that does not control your PMR, and then go back to the last dose that was effective. If you go from 20 to 12.5 in one step and your lowest effect dose is 13, you won't know what the correct dose is to go back to. You would have to start back around 20 and then start stepping down again.
It's better to be cautious and patient, and not have to bounce around with your prednisone dose. That can cause flares.