blood test

Not sure if you mean ESR or CRP ?? The first time I had PMR only my CRP was really elevated and not much higher than that and I believe my ESR was only 12 at the most My PMR was confirmed by a Rheumatologist and responded well to steroids and cleared in 2 years after 3 years it came back This time around both CRP and ESR were elevated only in the 30s though My Doctor thinks they are under control at about 5 and when they went down to that level I felt great after a few steroid reductions they went up to about 14 and I didnt feel good and my Dr made me up the steroids slightly until they went down again You know how you feel and if you are not happy ask to see a Rheumatologist but we are all individuals and I have read very different levels here But I think where you started at is important and I have kept good records this time but persist as my Doctor said I should have seen her earlier this time as definately it is taking longer to reduce the steroids Good Luck

You might be experiencing steroid withdrawal symptoms - that is, your adrenal system has not yet started to produce (or is not yet producing enough of) the natural cortisol to replace the artificial steroids you were taking. This would explain the doctor's comment that the pain wasn't PMR related. Possibly you reduced the dose and/or stopped too quickly, it varies so much from person to person as to how much can be reduced and when. Perhaps you could ask for a further set of blood tests to determine if there is still inflammation present and if not, ask if you can have more pain relief - also maybe look into alternative therapies for this. There are also natural supplements available to support the adrenal system. If you look at other postings here most of us support the idea of as much exercise as possible and even if that is limited to a 10-minute \"plod\" it is still helping. Good luck!

Thank you for your comments. I don't actually know what CRP is!! ESR is the only one that has ever been mentioned!

I think that maybe it's best that i just plod on, take a little excersise and maybe try an alternative. I don't particularly want to go back on to the steroids....it takes such a long time to get off them that's quite apart from the side effects.

I keep telling myself to think positive!!! Like Nefret says it could be withdrawal symptoms...I hadn't even given that a thought. I've tried Nurefen Express recently and at first it seem to help but I think that how I feel tends to depend on what I was doing the day before!!

It's great to know that there are other people who have experienced this

I have been told that the symptons and the blood tests results can vary greatly between people who have PMR. Some have high ESR levels and symptons, other have symtoms but normal ESR (0-20) and again some have high ESR and minor symtons. I have been diagnosed with PMR 3 1/2 years ago and take since the prednisolone daily. Last year mercaptopurine has been added to reduce the use of steroids but my ESR is rarely under a reading of 30. At the time I was diagnosed and before I started on the steroids I had an ESR of 86.

Thank you, Mrs B for your comments. I was interested to see that you said that normal ESR is 0 - 20.

Both the doctor and the nurse that did the test keep telling me that a \"normal\" ESR is 0 - 39 and therefore when I had the last test (which was 20) and the previous test (which was 24) they tell me that both of those are normal and the pain that I am experiencing cannot be PMR!!

Having said that I'm not altogether sure that doctors know an awful lot about it!!

whatapainthisis

I have watched this correspondence, hoping against hope that you would get a definite diagnosis - looks like my hopes did not come to fruition.

email pmrfighters@yahoo.co.uk - tell us if you have broadband - we can send you a series of papers which will be of help to you.

We are now subsumed into a newly formed National Charitable Organisation called PMR-GCA UK. Aims: Support, Self Help, Education and Research into Cause and Cure and Raising Awareness.

Dont' blame your GP too much, he has 10,000 patients on average and may only come across a few with pmr. Even less with GCA. You need referral to a Rheumatologist.

By the way, a normal ESR is generally half your age. But some people's ESR rate just does not rise even though they have PMR Ask your GP to do a CRP (Creatine Re-active Protein Test as well). In fact ask for a full spectrum test.

Contact us for more info.

mrs K