PMRGCAuk
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Post PMR pains??

Hi, I was diagnosed with PMR just over 3 years ago. Started on 15mg pred and reduced to nothing (last 12 months on 1 or 2 mg only) a few months ago. I must say I was never fully free of the symptoms of PMR and even now have some stiffness in legs, neck and back muscles. I also get the back muscle pain overnight when turning in bed. I recently went to see a rheumatologist who told me it was wear and tear 'background osteoarthritis' and I didn't have PMR but I just seem to have the same sort of symptoms (less the chronic fatigue I had at times) in the same places that I've had all the time. It feels to me that I had PMR and still got the after effects of it if that makes sense.

Any thoughts appreciated. Ta Dave

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On what grounds does he say it isn't PMR?

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That he didnt say but gp independently said same. I guess its put up with it or back on the pred which im not keen on

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Given the years of untreated PMR that I lived with - it's somewhere I never want to go back to!

I'd suspect they are members of the "PMR only lasts 2 years" club. Which is rubbish. And a top PMR expert at the Mayo has said so recently.

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David, I experienced some stiffness in knees and ankles for many months during my first year following remission - it can take that length of time for the body to adapt/return completely to normal. However, your mention of difficulty turning over in bed at night would ring some alarm bells for me. If you only came off the steroids a few months ago, it will be well worth your while trying a 5mg dose for a couple of weeks and seeing if those symptoms improve. If they do, you will have your answer. I know two people for whom getting back on just this small dose within a few months of getting off the steroids has proved successful. Unlikely to be any side effects from this low dose. If the trial doesn't work, you can always come off the steroids after just a short time. If it is PMR, leaving it much longer may mean starting back at square one.

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Tks for reply. Its just when i turn over onto my back i get the back muscle pain but it doesnf last for long. Not sure what to do. Would be good to speak tk a rheumy whi specializes in pmr but not many around i guess

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Roughly whereabouts are you, David, in case we can recommend someone?

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I'm in Hertfordshire

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A gentle daunder round the M25 to Chertsey sounds called for. Dr Rod Hughes, private and NHS. Google him

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thanks for that

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Have you seen this doctor yourself?

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I saw Dr Hughes last year after repeated PMR bouts over 15 years. He confirmed refractory PMR and advised me to stay on a low dose, I'm currently on 4mg. Several others on this forum have seen him and he is generally acknowledged to be one of

the best in the south.

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Me? No, I live in Italy but I am a patient research partner for a group he is involved with - and I have several friends with PMR/GCA who have been under him.

Not only does he know his stuff - he listens to his patients.

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I got down to 1mg at Christmas,the pains returned.I had to crawl upstairs,so painful to get dressed,turn over in bed and wash hair.My arms and thighs were the worst.I am now back up to 5mg and feel so much better!(My Dr belongs to the 2yr and stop club)!

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