Pmr

[Mjhollywood1]

The docs says no Pmr after blood work. But I know my stiff aching thights. He is lost anyone had negative reading but still have the symptoms !! Down to 3 mil grams of predsone

[DorsetLady PMRGCAuk volunteer]

Not personally, but lots never have raised blood markers all the way through. Plus even if you did at the start, once the Pred is working correctly the bloods should be back to around normal. Doesn’t mean the PMR is gone, only the inflammation caused by the PMR - not the same thing at all!

Symptoms are the key - if you still have pains, then you very likely still have PMR - and inflammation that is not being controlled by a high enough dose of Pred.

Try going up to 5mg and see if your symptoms ease.

[Hidden]

I was diagnosed a year ago and have never had elevated blood markers, even when I have had severe symptoms except for elevated ANA, which is non-specific and only indicates that there is inflammation somewhere. There are a substantial portion of people with PMR who do not have any elevation.

[SheffieldJane]

Oh dear Mjhollywood1, You clearly still have live PMR and are not taking enough Prednisalone to control the inflammation. If it was me, I would return to the last dose I felt comfortable at and taper down really slowly thereafter, by tiny amounts, even half a tablet. At this rate you are in danger of a full blown flare, then you would have to go back to the start. That thigh pain is really disabling, I have had it. Others have explained that blood tests can be deceptive, especially after a long time on Pred.

[navejasjoe]

6 months after my wife was diagnosed with PMR, her first rheumy told her that she no longer had PMR and he was ready to have her taper down to almost no prednisone at all. Of course, all her symptoms came back, yet he told her he could no longer do anything for her. Of course, she went to another rheumy who was much more knowledgeable and started her off at 12.5mg and has been tapering ever so slowly. BUT, you mention having stiff aching thighs. Until just yesterday, my wife had never experienced achy "lower" thighs. The last couple of days, she has had difficulty getting up from a sitting position as well as trouble walking. The pain is in the quad area, above the knees. Per PMR aches and pains have generally been back of the thighs, hips and shoulders.

Joe

[bunnymom in reply to navejasjoe]

I do find that my pain can move around

[Sandradsn]

I only had raised blood markers when I was diagnosed with PMR.Since then the pred has brought the inflammation down and so the blood tests are 'normal'.Even when I had a nasty flare a year ago and my arms and thighs were very painful, it didn't show in blood tests, GP said I was atypical .

[Janstr]

My PMR started in my thighs & wasn't diagnosed until I got GCA, as the blood markers were normal for several months

[PMRpro Ambassador]

There are quite a few on the forums with no raised blood markers and it has been shown in studies that up to 20% of patients do not have raised blood markers. What is even more to the point, just because YOUR blood markers are "within normal limits" it does NOT mean they are normal for you. The range is the range of levels found across the entire apparently healthy population - doesn't mean they didn't have some unidentified inflammation somewhere.

During a severe flare and in hospital my ESR ranged around 16-18, well within normal range officially so no-one took any notice of it. However, MY personal normal level is in low single figures so 16-18 is high for me. Although I had some general body stiffness, especially upper arms and shoulders, the worst pain I experienced was claudication in my thighs when I tried to use the cross-trainer at the gym.

While you are on pred the levels SHOULD be normal - and for some people they stay within normal range as long as they are on pred or for a very long time after a flare starts. You have fairly certainly reduced too far - you need to go back to the level that worked.

And probably find another doctor...

[Lafontainepam1]

I’ve had a few flares in my 7 years with PMR, and only had elevated markers when I was first diagnosed. The pain is certainly real, I would say you need to increase for a bit, then try going back to 3mg.

[Telian]

Symptoms mean more that bloods sometimes, listen to your body - it knows - and see another doctor.