you may remember weeks ago I have been supporting a dear friend of mine who has been suffering with PMR for 4 years.
Currently her pain is still not under control but she refuses to increase her pred more than 12.5 mgs. I have encouraged her to seek medical advice and she has an appointment to have her bloods taken next week followed by a medical review.
She is in pain by 11am having taken her morning dose at 6am . Just a short walk results in muscular pain in her upper thighs and she generally feels unwell.
Her daughter in law ,who is a medical consultant ,( paediatrics ) has suggested it might be Chronic biochemical non inflammatory pain. Obviously I am going to research it but wondered if any one of you had heard of this ?
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larkthebark
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That doesn't really sound like PMR to be honest. One criterion for a PMR diagnosis is a good response to moderate dose pred and one study found that 75% of patients did get relief with 12.5mg in the space of a month - of course most people don't want to wait that long! But 4 years on that much pred should have resulted in a better result than that.
Will read this at some point fully before i talk to my friend. I have been saying for ages that her pain does not sound like PMR any more as her symptoms of pain recurring 3 hours after the pred then improving later in the day are bizarre. She has no joint pain and complains bitterly of thigh pain and feeling as if she is walking on bricks which sounds like a neuropathy.She has been reluctant to seek help during the pandemic but I feel she needs a thorough review as she is becoming increasingly depressed which of course probably makes the pain worse. Hopefully next week she will get her long awaited medical review but I fear her pain control is going to be complex especially as she is very resistant to new treatments and suggestions. Thanks for your reply. It is very frustrating for us both.
Did they diagnose PMR and stop there? Something doesn’t quite fit.
I had a little read about the non-biochemical pain and came across this paper saying that all pain is biochemical but that different syndromes have a different biochemical profile in terms of pain mediators and should be classified as such.
yes , from what I understand PMR was diagnosed after fairly extensive tests as CRP never elevated. muscle biopsy ultrasound scan etc all negative but response to steroids initially good.As we live miles apart and my friend has limited medical knowledge some of her history is patchy but she was seen by a rheumatologist 2 years ago who saw her once and discharged her back to her GP.
She is , or was , an extremely active person with a positive outlook but I think with Covid and not being able to see her family or go to her holiday home in Madeira there could be a psychological element here. Either way she need expert help but i promised i would try to find out more for her.
I wonder if the niece thinks it may have been PMR originally but in the meantime she is suffering with "learned" pain because she never got it properly managed? The other term I was wondering about is complex regional pain syndrome.
yes, I think that is what she is thinking. It was definitely PMR to start as her classic symptoms responded so well to steroids. i fear my friend is a complex case and she may well need some specialised pain management input.thanks so much for your input.
She needs to get a new referral to see a consultant and start afresh with all the hassle can now present. Sounds really tough for her. She's got a good friend in you.
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