After several months of getting stiffer and stiffer..knees,arms,feet,hands I realised I was totally exhausted and took myself to my GP. He gave me amatryptaline but other than helping me sleep it made no difference! I then saw a rheumy who said my bloods were irregular but not outrageously high and put me on pred:20mg a day. All my peripheral aches vanished but my hips just got worse and worse!
Now he says I should start to taper off...but I can hardly walk! Sitting still is my best time...is this really pmr?
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juliaselsey
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Maybe - but it may be in concert with trochanteric bursitis and that can take a while to respond much to oral pred, local steroid injections are far more effective. Has anyone examined you for that?
Hi there, my upper body has responded well to prednisalone, but like you my hip pain and mobility has got worse, although stiffness is quite a lot better. I have a trochanteric bursitis like PMRpro talked about also, so wonder if it is actually the cause of this? Sitting is the only thing to help relieve it along with strong painkillers at the moment. I am on a waiting list to see an orthopaedic surgeon, so hopefully he will have some answers.
That is where I and a few friends have used Bowen therapy and it did help a lot. I was lucky and the local pain clinic provided more concrete therapy in the form of steroid/muscle relaxant injections, manual mobilisation of the myofascial pain syndrome trigger points (different from fibromyalgia) and needling. Rather difficult to find in the UK, less so in the USA (I live in Italy). But Bowen is available in both UK and USA and really is worth a trial - if it is going to make a difference you will know within 3 sessions so it isn't an open-ended commitment like chiropractic always seems to be. It kept me upright during the 5 years I had PMR without pred - it doesn't help the PMR but it often makes a bit difference to the "add-ons" and every little helps!
where the use of Bowen in PMR is discussed in some depth - with both anti and pro opinions. It may not work for you - but on the other hand, perhaps it will relieve some of the pain. For most of us who have used it we have left with a distinct feeling of "wellness". Which can't be bad can it?
Saw GP today who says that my hip pain can't be a flare as i:ve ONLY reduced from 20 to 15 and was ONLY on 20 for six weeks. He says I have fibromyalgia and should come off steroids asap.
I don't know where they get their ideas from. If the pain went with 20mg pred it isn't fibromyalgia - pred does nothing for that. If it is bursitis - oral pred isn't ideal and it could well get worse after being better. And a 5mg drop is 25% - way above the recommended "not more than 10%" touted by top US experts for PMR some years ago.
I can only suggest seeing another GP - and failing that, go back to the rheumy.
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