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Prednisone tapering is challenging. What does remission feel like?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 3, 2023 | Replies (209)Comment receiving replies
I was diagnosed with PMR in April 2022. Started on 15mg of Prednisone and after 4 days I was pain free.
I've been pain free ever since and have slowly tapered to the point where I am on my last month at 1mg.
I have to say that this forum has been my lifeline as I know no one in my situation. All of the comments on this site have made me a smarter person! I also recommended this site to my doctor.
Once I stop the Prednisone I hope to never have a flare up - wishful thinking I guess. But my question is if I do have a flare up, how do you know what dosage to start taking again? I know that in the process of tapering if I had issues I just upped my dosage to where I was pain free. But when not on Prednisone, where do you start?
My doctor has prescribed enough Prednisone so I have a stash that I can start up right away. But again, how do you know when and how much to start?
Replies to "I was diagnosed with PMR in April 2022. Started on 15mg of Prednisone and after 4..."
My journey with PMR sounds like yours. Although I’ve commented before I’ll repeat it for you in case it helps. I am now 75 and was diagnosed in early 2021. I had immediate relief from Prednisone and finished tapering on January 31st 2022. The residual symptoms lasted a while such as leg weakness and butt pain but I’m now symptom free and have good muscle strength back. One day I just realised it was gone. I’ve got a Prednisone stash and if symptoms recur will start at the lowest dose immediately and increase if required . It can take weeks to get medical help where I live. Hopefully the Prednisone will expire and not be needed! These forums are a lifeline and I still read it every day. Good luck to you.
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Hi @lawhoeburg, Connect was really helpful for me also when I was tapering off of prednisone my 2nd time around with PMR. I don't think it's wishful thinking for hoping to never have a flare up again of PMR. I had 6 years of remission after my first occurrence of PMR and I'm now going on 5+ years of remission from my second time around with PMR. I'm definitely hoping it never rears it's ugly head again! I feel a little better this time around even though I just turned 80. Since my first bout of PMR, I started making some lifestyle changes, lost some weight, eating healthier with less inflammatory foods, exercising daily when I can, and eliminating processed foods and greatly reducing the amount of sugar intake.
I think I would check with a pharmacist if you plan to keep a stash around after your PMR goes into remission. Here is some information on expiration dates that might be helpful.
--- Drug expiry debate: the myth and the reality: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040264/