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A month into my diagnosis with PMR

Polymyalgia Rheumatica (PMR) | Last Active: Nov 14, 2023 | Replies (57)

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@jixster

I hear you - I am an active 68 year old male - my PMR started this September in my hips and groin area then about a week later to my shoulders. I went to my doctor who prescribed Naproxen and Flexiril plus a blood test. My inflammation marker were up as expected but my hemoglobin was down ( we are still not sure why as a recent June blood test had it at excellent) well the naproxen and Flexiril helped - numbing the pain - sleep was almost impossible. I suffered through the term of that prescription and in my own research I went back to my Doctor to ask if it was PMR - he wasn’t convinced but put me on 10mg of Prednisone for 30 days - well 8 days in I called and told him it’s not working so he suggested I try 15 mg for a few days - there was a bit of improvement but still I could not put on a shirt or coat- I had to think about getting up from a sitting position. So he was without an answer - he ordered more blood tests - and put me at 50mg a day . Today is day one - I can finally put a coat on and raise my arms above my head. It took 4 hours to kick in. I read that every person reacts to prednisone differently- my dose is considered high - I don’t know if I will sleep tonight? But I hope so. Tomorrow will be another day - hopefully pain free for the first time since September.
But yes anyone reading this PMR effects people differently some more severe than others- my hope with my high dose that my bout with burn itself out within a year, though I know it can last six years. Cheer

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Replies to "I hear you - I am an active 68 year old male - my PMR started..."

If my case was any indication, PMR can last longer than 6 years ... more like 12 years for me. The majority of people are able to taper off prednisone in 1-2 years. There are a significant number of people who take prednisone for a longer period of time.

I actually lost hope that I would ever be able to taper off prednisone. Some people argued that it was all about quality of life and I should continue taking prednisone.

I would encourage people to taper off prednisone as soon as they can. My "long term" treatment didn't improve my quality of life. It was one "prednisone related" medical complication after another after my first couple of years of treatment with prednisone.

I fit into the profile described in the following link.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844628/
Furthermore, tocilizumab therapy was tried after 12 years of PMR and I was off prednisone a year later. I'm still doing tocilizumab infusions every 4 weeks.

PMR seems to be in remission. Many of my prednisone related complications have resolved or improved given how many other medications I have been able to stop taking.