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What are your rheumatologists using to stop the pain from PMR.?
What type of treatments are your rheumatologists using for your PMR? I was diagnosed April 2023. I have been on prednisone since that day starting at 10 mg every three weeks I keep reducing it by 1 mg until I will be finished middle of November. I was told by my doctor that she does not believe in giving prednisone for more than two rounds. If I still have a lot of pain she will start me on methotrexate. She did mention over-the-counter anti-inflammatories like ibuprofen which I really didn’t sound interested in. have any of you had any luck with the over-the-counter anti-inflammatories? She did mention that she does not believe in medication unless your pain is intolerable. do any of you have the same situation with your rheumatologist?
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I am starting my 4th year of PMR and, for me, Ibuprofen was the only thing that saved me. Nobody could figure out what I had since my myriad of blood tests were all normal and I lived thru the brutal first year on massive doses of it. After joining this blog I realized all my symptoms were spot on. Still wouldn't prescribe anything (I live far from effective medical care, but even so saw 4 different specialists) because of normal tests. I gradually weaned off the ibuprofen and only take it when having a bad day. I manage to do everything I want, including riding my horse (I am 76.) I know what everyone says about Ibuprofen not working on PMR but I would have died without it so it helped me. Since I am a cancer survivor (think chemo) I wasn't anxious for prednisone anyway.
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3 ReactionsWow, @gailg—you are a rock star! I admire your strength. I pray that your pain completely disappears and never returns. ❤️
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1 ReactionWhat a terrible doctor. I wonder what her response would be if she got hit with PMR pain! You definitely need to find another doctor who cares about your pain. Prednisone is the only thing that works for PMR. NSAIDS and acetaminophen do not help. Never take NSAIDS with prednisone, by the way.
Most doctors are not knowledgeable, or experienced enough with PMR. Their goal is to get you off the prednisone, but their goal should be to get you to the lowest dose possible without a flare. The new Biologics are holding some promise at getting people tapered off of prednisone faster. But without them, you should be tapering very slowly, especially once you get to 7 mg. to avoid a flare. Prednisone is really controlling your condition. Not curing it. PMR is a self limiting inflammatory autoimmune disease that runs its course until it’s ready to release you. The literature says most people have it for 1 to 2 years, but from different groups I am in I am finding that it’s more like 2 to 5 years average. So it’s probably a good idea to change your mindset to think that you’ll probably have this for a couple of years and that you need to find the lowest dose of prednisone to keep you from having a flare. For a lot of people that’s around 2 or 3 mg, after a slow taper.
The biologics, like Actrema, help some people get off Prednisone. They have less direct side effects, but they lower your immunity so you will have to be very vigilant about infections. You will need to mask up when in groups for your own safety.
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