I’m just a patient relying on the doctors expertise.
The original diagnosis was the GCA, and it was rather serious with all the side affects, high ESR.
Started prednisone at 60 mg, with a slow decrease over 9 months.
Before the diagnosis I ended up in the hospital with loss of half of my blood, extremely anemic, very low diastolic BP…no solution as to this issue despite every test known to man!
Then the GCA diagnosis a month later, the 9 months of prednisone.
6 months later, a total disabling flare of PMR, hospitalization, 140 ESR and other markers, back on 60 mg meds, decrease, then increase again because of pain but just finished after a full year of meds.
She doesn’t seem to be concerned or even I think , understand how I can have this pain even though I’m on a minimal dose, working down to 1mg.
So I’m unsure, I don’t think I fit her “cookie cutter “ image of GCA although from what I read, there is no consistent evidence of every patient having the exact same issues. Mine ran the whole gamut driving my doctor crazy, calling specialists, finally a hematologist asked him if he had considered GCA. Voila!
Sorry, long story and I’m not doing well, losing ground I feel .
I have labs tomorrow for Phamacotherapy that coordinates labs, drs, meds.
Dr. appt in two weeks…