Delayed diagnosis of a pmr flare!

[Kentishgirl]

Hi everyone, I was diagnosed about a year ago, with both pmr/gca, just after Christmas I had terrible neck, shoulder arm pains, had blood tests, but it showed my numbers were in the normal range? my GP who read the results said one marker was up slightly, but not enough to cause these pains.

My question is, did I read after answer to a post, stating that your test results can lag behind your symptoms?? any help would be appreciated, today my Rhumy, uped my pred an additional 40 mgs!, so I can only summit I am having a flare? and as the pain has existed since christmas, it must have started back then?

Kentishgirl

[PMRpro Ambassador]

For some people the markers are NEVER raised - or not out of the "normal range" which is a range for a population of thousands, not your personal normal range. All through a flare where I could barely move my ESR was never above 18 (my normal is 4) so no-one thought twice about it. The CRP has never been raised. And for others, even if the levels were raised before diagnosis once they are on pred they fall and don't rise again.

The markers don't "cause" the pains - they are an aid, not gospel. You treat the patient and their symptoms, not the lab results. Obviously your rheumy is a bit brighter than the GP. Wonder what he'll say...

[Kentishgirl in reply to PMRpro]

Hello PMpro, it is so reassuring to talk to experienced people in this situation, the experience and gained knowlege you folks have, is so helpful to us nubies!, I am feeling better, a little pain here and there, but it will ( I hope ) retreat soon, thank you for your help, concern, it is such a comfort to me,

❤ Kentishgirl.

[Soraya_PMR]

Are you feeling better on the higher dose?

[DorsetLady PMRGCAuk volunteer]

Looking at your previous post of 3 months ago when you said you were down to 5mg, all I can say is no wonder you had a flare!

Yes you are correct in that blood tests can lag behind symptoms, and as PMRpro says some patients blood are never raised.

That’s why we’re always saying “symptoms, symptoms, symptoms!”

Hopefully you will have a more sensible tapering regime this time around.

Good luck.

[Kentishgirl in reply to DorsetLady]

Hello DorsettLady, thank you for contacting me, your know leg of these blank blank desese's is so comforting, as with everyone who cares and responds, to us nubies crise for help, it is scary when you feel your body, freezing up on you, accompanied by horrendous pain! my poor husband so eager to help, but feeling impotent as to what to do, he did however call the doctors office, on a sunday, ( no one home ) and told the doctor, where the bear crap in the woods!! Monday morning at 8 am we had the doctor on the line, he gave us the word FLARE!! take 40mg's pred, and be here tomorow!.

I don't know about the UK? but here in the States, you have to be proactive, more and more with the medical profession! that Sunday call was the third time we had called hs office to complain about my symptoms, and each time he blew it off as something else, but this time my husband's voice inflection did the trick! thank God! thank you again DorsetLady,

❤Kentishgirl