How to address PMR pain while decreasing prednisone

It usually isn't recommended to taper down if you are currently in pain. The pain usually means you already aren't taking enough prednisone to control the inflammation in your body. If you go down again, it might only get worse - even invite a flare. That will set you back a lot! You should probably discuss this with your doctor.

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My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

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I’ve been told based on painful shoulder (severe) legs arms and sometimes hands I have Polymylasia Rheumatica also. Very hard to get a diagnosis my Specialist stated as there are no actual tests but like you have all relative symptoms. My Primary Care could wait to pull me off the Prednisone which was for 3 months. We had to wait to see the Specialist Rheumatologist over 5 months. The recent 2nd option specialist said the full course for PMR with Prednisone is a minimum of 18 months. Because of the pain coming back full force after stopping Prednisone she feels I have it for sure. Running more tests to gauge inflammation and rule out other underlying unlikely causes, before I can start back at 15 mg per day! I felt so much better within 3 days, it was amazing. We’ll that’s my experience so far. Please share your symptoms too.
Hang in there!

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Welcome @nativeoregirl, Most PCPs don't have enough experience with PMR and tapering. I was glad that I had a Mayo rheumatologist that told me to listen to my body when tapering and take it very slow. Here's some information that you might want to share with your PCP if you don't have a rheumatologist yet.

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429

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Welcome @nativeoregirl, Most PCPs don't have enough experience with PMR and tapering. I was glad that I had a Mayo rheumatologist that told me to listen to my body when tapering and take it very slow. Here's some information that you might want to share with your PCP if you don't have a rheumatologist yet.

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429

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Can you disclose the name of the Mayo PMR specialist? I would really appreciate these next steps.🙏❤️💯✅👍😊

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Anyone who is not using MSM should try it. It really does help with pain and inflammation. Studies show that it down regulates IL6 which is one of our troublesome cytokines. I take 3 grams everyday with juice and have no side effects from it. One morning, I forgot it , and I had such an ache in my shoulders by noon, I had to stop and think what happened. I remembered that I forgot it, then took it and about two hours later the ache was much better. Made a believer out of me. I use the same one I buy for my horses. It works on their arteritis, too and my large animal vet believes in it. It is the real deal.

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@nativeoregirl, Dr. Thomas G. Osborn at Mayo Rochester was the rheumatologist that diagnosed my PMR.

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