I have a wonderful, caring rheumy. She sends me for every test. She calls me at home regularly . She told me she wants to give me the best care possible. I have monthly bloodwork done and a CRP as much as weekly if necessary. I have had PMR for 2 years. I think I have had GCA for a year but kept hoping it would go away. That is when my sore ear started. Now I wake up with headaches. I say headaches because they are more like little hammer hits here and there and pressure on the side of my face. After I am up for a few hours they get better. Not intolerable but annoying and sometimes like movement under the scalp. Sore scalp once in a while.
Appointment with opthemologist was good. Eyes fine. MRI okay, but petscan indicates arteritis. I said is this giant cell arteritis , answer yes. Now here s the kicker,
Just stay on my 7 mg. Pred and waiting for approval for actemra. Not sure what I would have to pay but 2 grand a month won’t be happening, I asked about high dose pred and apparently the new literatures discourages that.
Live in Canada and have never heard anyone not given high dose pred .
Anyone out there dealing with GCA without the high dose hit. ?? Thanks for any input.