I was tentatively diagnosed with PMR august 22, 2023. The blood work showed normal blood markers but I had been put on 40 mg prednisone right away . The pain went away within 4 hours. The doc wanted me to taper to zero in one month. Pain came back at 20 mg so she said to stay there and got me a referral to a rheumatologist. Of course now my blood tests won’t be accurate and the rheumatologist isn’t convinced it’s PMR since blood markers for autoimmune inflammation were normal.
Anyone else have normal blood tests but confirmed PMR diagnosis?
I’m worried about pain returning (I couldn’t use my arms or wipe my bottom. It was totally debilitating) and about being on prednisone if not needed and what else could mimic PMR so well.
Any ideas? Thanks I’m advance. You’re my lifeline.
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Alohaoillady
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Whilst not the majority, people can have normal markers and have PMR or GCA. It is also a question of your quality of life which the doctor doesn’t have to experience if they start experimenting, luckily for them.
Have a read of this but if the words start to blur, go to the conclusion and table 1.
Where did these people get trained? If you are taking steroids and they are working of course your blood markers should be normal. I just despair of the medical profession, roll on AI. Also PMR is a chronic illness that can last around two years or more. Also tapering to zero so quickly could cause adrenal problems and make you very ill.
Various studies show that up to 20% of patients do not have raised markers…. But unfortunately many doctors don’t read the small print…even those that should!
This link gives info on other diseases that mimic PMR - but as the saying goes -
‘If it looks like a duck, walks like a duck and quacks like a duck, then it just may be a duck’
40mg to zero in a month?! That's madness.... It took me nearly 3 years to get to zero from an initial dose of 15mg. Maybe you should ask for a different GP?
If 20mg is keeping the symptoms at bay, then I would stay there for a month before starting a very slow reduction using one of the tapering plans.
I agree that seems madness. I too was diagnosed almost 2 years ago and started on 15 and gave been trying to reduce them. I have been up and down as when I get down to 7 the symptoms all come back! My doctors all ask well what’s the level you last felt ok at? I recently had a blood test and my crp was 10 but other tests have shown normal! I went back up to 10 for a week but reduced it to 8 now and splitting my dose as realised it is not covering me for 24 hrs and feel really stiff in the mornings! It’s just an experiment but will see if I can get any lower!
Thank you for your help. It’s difficult to know when to try to reduce as have been doing so every 8 weeks. Also tried 6 weeks and 4 weeks although gave to say I am currently also recovering from a mastectomy op. Consider myself very lucky as not going to need further treatment other than hormone tablets so maybe I’m expecting too much! I have found all your advice so valuable on here since finding it!
If you have got stuck at the same dose a couple of time - take a rest from tapering for a few months. Forget all about it. And if you are recovering from big surgery, you shouldn't be tapering anyway, Allow your body to heal and only then start to think about a tiny reducton.
PMR has given good advice, and agree with her about not trying to reduce Pred any time soon , but just wanted to say good luck with recovery from surgery.
Thank you. I really value your advice and has been a big help where my doctors don’t really seem to be able to advise other than try to get me off the steroids! I am recovering well and building my strength up with daily walks. Just need to work on my mind now as a bit scatterbrained! 😂 Been hard coping with my PMR as well and trying to get it back under control! 😊
I haven't had raised inflammatory markers since my tentative diagnosis of PMR in Nov 2022. I didn't start prednisolone until Feb 2023 and I experienced the immediate and miraculous relief on 15mg. My diagnosis appears to remain tentative, as both rheumatologists and the various GPs that I have seen, continue to say, "it seems to be PMR" and I carry on with the prednisolone. So far, RA and lupus have been excluded as possibilities. The grumpy rheumatologist that I saw in August says that he doesn't think that I have PMR any more and wants me off the prednisolone because he says that it is masking what is really going on. I have seen my GP a few times since and her view is that my body might have other ideas about the need for pred and not to mess with the dosage until I get back from my holiday, which is in 2 weeks time. She is exploring other options too. Sjogrens may be on the cards. It also seems that I may have an enlarged thyroid , even though T3 and TSH are normal, and I am due to have a neck ultrasound next week. There has been a question mark over my thyroid for years and I have been having annual blood tests, which always show normal thyroid function, so I am glad that I am getting the scan now, as thyroiditis can give some of the same symptoms as PMR.
Personally, I do think that I have PMR, that I have had it for a very long time and that I still have it. It is clear that I have "a" polymyalgia that is extremely responsive to prednisolone, but I don't believe it is the whole picture. I'm realising that diagnosis may be a long road for some people, especially as there is no specific test for PMR. It is frustrating and disheartening to live with the uncertainty, but you have to stay with it. You need to be pretty dogged at making sure that you get a full investigation. This forum has helped a lot in knowing what to ask for. Be as well informed as possible and keep asking questions.
My markers - which are for any form of inflammation, not just autoimmune so no idea what they are on about - were never out of normal range. I have PMR.
None of the usual ests for autoimmune disorders are raised in PMR - there are no identified autoantibodies and it is a clinical diagnosis which is what seems to put a lot of doctors off their stride when they don't get help from the lab!
As I keep saying - PMR isn't the disease, it is the name given to a set of symptoms that appear in the absence of any other identifiable underlying illness. It is responsive to pred and there is no other management besides pred to manage the inflammation and, as a result, the symptoms. It ISN'T a benign short term illness, it is real and can be long lasting. But many rheumies think it isn't a really illness and beneath them so aren't interested. Mercifully, a few know better.
Hi, Aloha. My two cents: stick with the level of pred that kills the pain and keeps you mobile—don’t worry about confused docs. Deal with thyroid as it comes. Going from 40 to 0 mgs in a month is nuts. PMR isn’t something that goes away with a big slug of pred then nothing. Based on my experience, start the slow reduction as soon as you are able. I waited too long to start reducing, and have all the crazy and unexpected side effects. I was buried in grief and traveling like a madwoman so not paying attention to need to reduce steroids. Also, though I am on methylprednisolone, I think I preferred prednisone. Good luck. I am grateful for this website.
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No inflammatory markers in my blood You don,t have PMR
Chronic prednisone use and inflammation markers
PMR flare symptoms but bloods clear.
PMR with normal blood work. Spacey on prednisone 
raised Inflammation markers, pain not typical
