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Weaning off of prednisone & pain management

Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:23am | Replies (156)

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@dadcue

The following link spells it out. However, there is considerable controversy about what the "best way" actually is for weaning off prednisone while still managing the pain.
https://emedicine.medscape.com/article/330815-treatment
"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"

From my personal experience of 12 years taking prednisone for PMR, there are no magic ways that work the best for everyone. There were some approaches that worked best for me personally.

I have decided there is no "best way" and you have to do "what works best for you." That doesn't mean to "self-medicate" and go it alone. I tried that too and it didn't work.

You need to work with your doctor until you find a way that works for both you and your doctor. Easier said than done! I gave my rheumatologist most of the credit but WE eventually found a way. I have been off prednisone for 2 years with minimal pain. I have mostly recovered from prednisone side effects.

The link above also provides some alternatives to long term prednisone when the recommendations don't work. I think you still need to give prednisone a year or two before the alternatives are tried. This time frame is usually followed unless you experience considerable side effects from prednisone earlier than some people.

Sometimes PMR isn't "self-limiting" like it is supposed to be. However, the side effects from long term prednisone use are well documented. In fact, any dose of less than 7.5 mg is extremely problematic and may also be a prednisone side effect acquired from long term use. This probably explains why you need to go slower when you reach single digits of prednisone.

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Replies to "The following link spells it out. However, there is considerable controversy about what the "best way"..."

Thank you for the info! I am leaning towards slow weaning because of the severe pain I recently experienced. I will be talking to my doctor about this. I've been seeing a PA that is currently filling in for my original doctor that diagnosed me, so if I'm not comfortable with what she is recommending I will be sure to let her know, and try to come up with something that is comfortable for me as well as her.

My Mother has been on prednisone for 2 years and has weaned off. She is still very sore but just hated being on prednisone. She now has swollen feet and hands. Has anyone else had this?

I am tapered down to 4 from 15. For the last month my hands have been sore. My question is if I continue to taper and most of my discomfort is sore hands can I safely live with that without causing some other damage? My rheumatologist is nervous about my continuing to taper. Current plan is taper one mg per month so ideally I have 4 months left on prednisone.

I also have a theory that splitting my dose into twice a day might be helpful so that is what I am trying. I don't want my body to think there is an abundant extra supply but I am not a doctor and have no way to substantiate my theory.

I also am experiencing some light headedness which I had investigated at the emergency room with no definitive finding. Investigation included catscan ekg and bloodwork.