On three occasions this year I have had flares following a reduction in pred.
Shoulder, neck & back pain returned. On each occasion I had a blood test & my PV levels were around 1.81, well above normal range. The PV test supported my symptoms.
Flare protocol was followed with Pred & after a few days all was ok. More blood tests followed & PV levels were back in range.
At back end of August this year, the same pain & stiffness returned in the same areas.
A further blood test followed & my PV levels showed within range. I carried on at 10mg a day....the pain & inflammation stayed the same & has done so until 2 weeks ago.
Following another check up with my GP, he questioned if the PMR had some how 'gone' and I have something else as the PV levels were in range?
Despite my protests, the GP decided to crash the pred from 10mg to 5mg a day for 2 weeks ' to see what happens'
I said this was not wise, however I was asked to give it a go.
In last 2 weeks my symptoms have slowly got worse to the point were pain is now in my sides & chest in the mornings as well.
Exactly as was, pre diagnoses over a year ago.
Yesterday I had more bloods done to check my PV levels and yet again they are within range.
I am due to see my GP again tomorrow & no doubt the PV levels will be used to support I do not have PMR any more.
Is that possible?...what can I do to challenge the likely outcome? I will be seeking a rheumy consultation after tomorrow but have read all the horror stories regarding them.
Is there a good one in the East Midlands?
I have classic PMR symptoms. I still have extreme fatigue & cognitive issues in waves everyday.
My symptoms do also fit with MS.
I'm pulling my hair out π₯Ί