PMR or Not
Posted , 6 users are following.
Hi
I have just finished steroids which I was prescribed for GCA which my Rheumy said I did not have....
Since finishing the steroids I have been suffering with a deep ache in my shoulders, hips and thighs. Having been reading this site I thought I may have PMR my doc sent blood for testing and has just told me that there were no inflammatory markers so it could not be PMR. I was diagnosed with Fibromyalgia several years ago but this new pain is different and I don't think it is Fibro.
My question is this: Can you have PMR but no inflammatory indicators in your blood, and if so what's the best way forward with my GP.
Thanks so much
0 likes, 19 replies
lodgerUK_NE pam33879
Posted
And fibro does not respond to pred either.
You need to google BSR Guidelines fo Treatment and Diagnosis of Polymyalgia Rheumatica, download, read and take to your GP. He probably uses this site as well and they are also on this site. under 'Health Problems'.
karen48559 pam33879
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pam33879 karen48559
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karen48559 pam33879
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I haven't yet spoken again to my own GP and don't until next week. That'll be an interesting conversation! I feel for you as it's bad enough suffering from PMR never mind having to fight for a diagnosis.
Nefret pam33879
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My lack of them delayed my diagnosis for about 5 years in all, so please do as lodger said and take the guidelines to your doctor. don't let them fob you off.
karen48559 Nefret
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pam33879 Nefret
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I have grave doubts that I'm going to be able to convince my GP to refer me but I'll have a damn good try
lodgerUK_NE pam33879
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GCA is not to be messed around with, your sight is at risk.
EileenH karen48559
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Hallelujah that a GP can and did recognise PMR without the support of lab results - it is and should be a clinical suspicion, supported by tests but not negated by normal values.
EileenH pam33879
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karen48559 EileenH
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beatrice74480 pam33879
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lodgerUK_NE beatrice74480
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2 years is quoted but we don't know how many get through it in two years as they are probably people who sail through it. I have only met five people in the last 8 years whose pmr has gone into remission within 2-3 years and 3 of them were men.
Don't be bullied into dropping your steroids - have another go at him or go talk to your GP and discuss how you feel about it all.
Fight your corner, it is your life and your quality of life that matters, not what they think they know.
EileenH beatrice74480
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As Lodger says, there are probably far more people who get through PMR in 2 years than we know about - by definition people without problems don't figure highly on forums. However, there was one review paper that reckoned that about a quarter are off pred in under 2 years but are at a higher risk of relapse than others. German textbooks are quite clear: an average of 5 years but may be much longer in some patients. Why doctors are so fixated on the 2 year figure I have no idea since definitely the majority are more than 2 years.
linda17563 EileenH
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EileenH linda17563
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We asked them why they say it - it's to avoid depressing the patient they claim. But we then have to present the reality to patients who after a time are still at 10mg and being made to feel it is their fault or who are on a low dose but unable to get further after 3 or 4 years - or longer. Some of these patients are in a real tiswas about it and really getting depressed. I'm on 4mg, inflammation well managed and able to do most things - and my GP thinks that is fine, even after 3 1/2 years since the last major flare and starting on this in a different way. I am so lucky.
pam33879 EileenH
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I'm lucky in that I don't have the GCA symptoms now but am left with such an ache in my hips that it is difficult to walk any distance and my shoulders are painful especially in the morning.
I am dreading having to take the steroids again as they caused me so many side effects (gastritis, gall bladder infections,) and now my hair is falling out ....where will it all end!!
linda17563 EileenH
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Yes, we would all like to be off steroids and healthy...without the weight gain, hairloss, and other side affects, but we have to do what we have to do, to get through our days!....
EileenH linda17563
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