Not PMR

[cynbil]

I went to see my rhuemy last week , feeling dreadful and barely walking with two sticks. He listened while I told him i had pain in my shoulders hips buttocks amd right thigh. He then told me that I no longer had P M R as It burns itself out in two years.( I have now had PMR for 7 and half years) Sorry I should have mentioned I have weakness in my right thigh and My leg keeps giving. way. He then tells me that i am suffering Pred damage and I am to reduce !mg of pred a month until I am off them ( i currently take 12mg daily). I am also to resist increasing the pred no matter what my pain levels are.My Daughter thought this was great news and was very optimistic for me. I only wish I could feel the same. Is he right do you think I would like to know what you good people think. Thank you in advance Cynthia Cynbil x x.

[Hidden]

Cynthia,

PMR usually presents with acute stiffness in the major muscles in and around the trunk area, as well as pain. Are you still stiff, particularly in the mornings?

I am on 6/6.5mg and am often in pain, particularly my joints, but I am sure it is not due to PMR, but to pred damage plus side effects from drug reducing. I developed PMR 3+ years ago and have had a couple of relapses, but, apart from the symptoms I have described and loss of strength and vitality, I feel that I am on the mend.

I use ibuprofen as and when I need it and it does the trick, but I am aware that many folks cannot use this drug. I have tried paracetamol, but for me it does not compare.

Your GP could be right, but you need help to function whilst you are reducing pred, and by the way, setting a rigid time table for reductions is not the way to go. You have to play it by how you feel and only reduce after feeling reasonable for a week or so.

Have you ever been down on the lower doses - below 10mg. If you have then I'm sure you can do it again.

Do try to pace yourself as much as possible because, even if you have beaten PMR your body will be battered and weak - I know mine is.

Best wishes, Pats.

[Pipistrelle]

I'd certainly consider trying a different rheumatologist. PMR often does not burn itself out after two years -- some have it for years longer and do have problems with reductions. There are some other potential approaches a good rheumatologist might recommend. He doesn't sound like he is offering you any other approach to managing severe pain. I don't like the sound of that, or the misinformed view of PMR. In your shoes, I'd really want a second opinion.

[PMRpro Ambassador]

There is something that is not uncommon alongside PMR which is called myofascial pain syndrome and can cause shoulder, lower back and leg pain - I'm not sure that it is recognised generally in the UK, I learnt about it at an international meeting from an orthopaedic specialist who has been doing research in it (not alternative medicine I hasten to add). He has been looking at the trigger points in the lower back, alongside the spine and in the shoulders and found they are foci of cytokines, the substances that are made in the body in the early morning and are what cause our morning stiffness. They cause knots in those places, these can pinch the nerves and cause referred pain - and what you describe in the buttock and leg is a typical sign.

I have had it dealt with by my local pain clinic here in Italy - unlike in the UK they used injection techniques. In the UK, during the first 5 years of PMR when I was not diagnosed and was not on pred, I had an osteopath who helped me on occasions but the biggest improvement came from trying Bowen therapy - a very gentle physical therapy. I don't know how it really works - I only know that it DOES work. Another contributor on the forum had similar problems to you before Christmas, could barely walk even with a zimmer frame, and eventually decided she would try Bowen. She lives near where I used to live in the north and went to the same practitioner. After the first treatment she walked to the car - she had hardly been able to get into the building with assistance beforehand! She has had a few sessions - and is almost pain-free now. A good practitioner will tell you you will know within 3 sessions if something can be achieved - this isn't something you need every month for the rest of your life like some complementary techniques say. It isn't free like the NHS of course - but I really believe it would be worth you trying it.

The fact you are still not getting any help from 12mg does suggest that there is something else going on - unless you have been trying to reduce the pred too fast in the past. I don't agree with the rheumy "it burns out after 2 years" - if so there are vast numbers of typical PMR patients around for whom it didn't and I'm one of them. I think it maybe has burnt out now - it took nearly 10 years if it has - but I have also been using a "dead slow and nearly stop" approach to reducing which quite a few others are finding is working where no other reduction scheme has worked. I have also suffered pred-related myopathy (your muscles deteriorating with pred) but it wasn't the same as the pain you describe that I recognise - it was simply weakness, not very painful at all.

But it could be worth trying Bowen or finding a physio privately - a physio here also worked on the trigger points for me.