1. < Polymyalgia Rheumatica (PMR)

Long term Polymyalgia Rheumatica

Posted by flicka @flicka, Jun 22, 2018

I was diagnosed with PMR in 2011 and have never been in remission. I am currently taking 9 mg of prednisone and 20 mg of methotrexate. Most days I feel pretty good (due to exercise and good food) , but am unable to reduce my prednisone dose even 1/2 mg. It seems like there are few people who have PMR this long. I would love to hear stories and suggestions from those who are still dealing with PMR after 7 or more years.

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beryl | @beryl | Aug 4, 2021

@beryl. I am after twelve years in remission so hold on there and don’t lose hope. Taking prednisone slowly down.

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John, Volunteer Mentor | @johnbishop | Aug 4, 2021
In reply to @beryl "Hello John this is @Beryl after twelve years I am in remission and very slowly taking..." + (show)
@beryl

Hello John this is @beryl after twelve years I am in remission and very slowly taking prednisone down. One day five next six mg
I still have pain in my legs but this is from lower back trouble. I had an operation last April and am hoping that in time my pain will go. Hope you are alright and not having too much trouble with pain.

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Hi @beryl, Good to hear that your PMR is going into witness protection 😁 12 years is definitely a long time. I have lower back issues also and it makes it harder to walk. I really think I have the start of Bent Spine Syndrome (BSS or Camptocormia). Just have to take each day one at a time.

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beryl | @beryl | Aug 5, 2021

Aren’t we lucky ha ha! One thing we have is experience of pain …..but we find ways of dealing with it all….Beryl

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