Reducing slowly, I am down to 2.5mg pred daily with no signs of a flare. However my ESR remains around 29 and CRP 14. When I was at 3mg pred in May (and I'd been at 3mg for a couple of months) I had a blood test with these same levels, and my GP advised increasing back up to 5mg for a week even though I didnt feel like I was having a flare. I did increase as instructed, then dropped back to 3.5mg. Over the next eight weeks I reduced to 3mg and another 8 weeks to 2.5. I have no PMR symptoms at present and feel more energetic than I have in ages. I'm just back from a week in Scotland where I was walking 6 miles every day (blood test was taken before holiday- I just got results after) with no problems at all! I'm worried my GP might want me to increase the dose again because of the blood markers. If my current dose is managing symptoms effectively but inflammatory markers are still raised, which should be the decider? (I should probably point out that ESR & CRP are pretty much what they were on first diagnosis two years ago; they only went down significantly when I was on 10-15mg pred). Any thoughts?
Symptoms reduced but ESR/CRP unchanged - PMRGCAuk
Symptoms reduced but ESR/CRP unchanged
My ESR and CRP are consistently high. CRP around 29 and ESR around 50. I feel fine. Every now and then they leap over 100 for no apparent reason and then the GP takes some notice and does some tests. I would love to know why I have such high inflammation markers. My GP has now decided it is just me.
How you feel is more important in this case.
just treat the symptoms..lots of reasons why those values go up
I think ESR and CRP indicate inflammation in the body but for many reasons. There may be another source of infection that is not caused by PMR. Could there be anything else?
I was the same and so Rheumatologist sent me for MRI. This is how they identified GCA/LVV.
Thanks. Have a phone appt with GP on Thursday
Lemonzest has a point - LVV can show no symptoms at all but be present. There is obviously some longstanding inflammation around that needs a lot more pred to eliminate it. It really ought to be investigated, What dose of pred did you start on?
20mg in August 2021
Did you taper fairly fast? To get the lowest markers at 15mg is not uncommon.
I thing it was by 2.5mg every 6 weeks til I got to 12.5, then by 1mg til I got to 7, then I started reducing by 0.5mg. I was on 3.5 for several months after a flare, and have been doing dsns since then. Now at 2.5, and have just added in one day a week at 2.
That is a difficult one. Especially as you are feeling so well and can walk miles without exhaustion or walk at all! However I do remember my Rheumatologist saying GCA could be symptomless! For that reason I always have CRP and ESR tested. Have you any tests that show what your CRP ESR makers were before PMR? Mine never went higher than yours are now. We are all different.
But not only symptomless - signless too and markers can be "within normal range" even if normal for you.
Ohh crumbs!! Oh dear! Can the worst suddenly happen then?
There is a form of GCA where the first sign is visual loss, they call it occult GCA. Written about extensively by a chap called Hayreh
pubmed.ncbi.nlm.nih.gov/127...
He has a few debatable points but this is one to hang on to:
"Our study showed that no generalization is possible for tapering down of prednisone and there is no set formula because of the infinite variation between individuals. Only 10 (7 without visual loss, 3 with visual loss) of 145 patients were able to stop the therapy and maintain stable ESR and CRP levels"
Shame a few more didn't subscribe to his ideas!
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