Flare

Posted by gingergirl24 @gingergirl24, 1 day ago

I was diagnosed with PMR June 24 and began Prednisone 15mg x1 month. Saw Rheum and began weaning schedule: 12.5mg x 2 weeks, 10mg x 2 weeks and then
decreasing by 1 mg every 2 weeks. I did fine until I got to 3 mg. I developed one sided hip/buttock pain, L thigh pain. The pain has been significant but has me uncertain if this is a flare of my PMG as the sites of my pain are not the same as where they were in my initial diagnosis ( wrist, shoulders, hip all bilateral). I increased my Prednisone to 4mg but increased again to 5 mg after just a few days. Its been a week at 5 mg with minimal improvement. Should I continue or increase Prednisone or assume my pain has another cause? Thanks.

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John, Volunteer Mentor | @johnbishop | 1 day ago

@gingergirl24, Sorry to hear you are struggling with the tapering schedule. I'm not a doctor and can only relate from my experience with 2 occurrences of PMR. It sounds like the prednisone controlled your pain until you tapered down to 3 mg and then it kicked up it's ugly head again. Being diagnosed in June of this year is still pretty early in the tapering game to be at the 3 mg dose from my experience but everyone is different. I think I would have a discussion with my doctor or rheumatologist again. There are alternative treatments that work with prednisone and might be helpful. Do you keep a daily log of your level of pain when you first get up in the morning along with your prednisone dose for the day?

megz | @megz | 1 day ago

1mg reduction every 2 weeks is a very fast reduction schedule, hardly enough time for your body to get used to each dosage drop before doing another one. It may just have caught up with you. You did well to get to 3mg before pain returned. I think most people here would be reducing more slowly. I reduce by .5mg a month which is 1mg every 8wks - the reduction instructions were 1mg every 4-8wks and I'm taking the slower option after having a flare.

How often do you meet with your rheumatologist, or can you ring them for advice to ask about what to do in your current situation and about the pace of reductions under 5mg?

jenbillig | @jenbillig | 23 hours ago

I have managed this PMR for the last 7 years. Up and down with prednisone. Today I am at 5mg trying to bring it down but frankly would not be surprised if I have to stay on 5 mg the rest of my life. At least I have absolutely no pain,,

brian326 | @brian326 | 4 hours ago

I’m new to PMR as well but I wanted to give my thoughts. PMR pain and stiffness is supposed to be well confined to specific muscles and generally equally bilateral. Seems very possible that your pain is from something else, especially if you are increasing your dose without a change. My rheumatologist instructed me if I taper and I have significant pain to go to the last effective dose (seems like 4 mg in your case). I personally wouldn’t keep increasing but would seek advice from my rheumatologist. I wish you all the best and commend you on getting to 3 mg since June without much issue.