A few months ago I was diagnosed by biopsy with GCA during my 2 weeks at Mayo when I was admitted from their ER, very sick. Since being home I have been tapering from 60 mg. of prednisone to my current dose of 15mg. My rheumatologist added Actemra weekly injections to help me reduce or hopefully eliminate prednisone due to side effects of steroids. I’m doing ok on taper but some symptoms of GCA are returning. They are all mild, headaches, hip pain, scalp tenderness & fatigue. My eyesight has never improved 100% even on very high IV steroids in the hospital with blurry vision, my left eye being worse. Sometimes the blurry vision is much better & lately it’s been a little worse. I have never lost sight or had white flashes. The Opthamologist thinks my glaucoma, diagnosed when I was in my early fifties 12 years ago, was worse with GCA inflammation. Probably no chance of real improvement in sight but the goal is to stop it from getting worse. Wearing my glasses more often helps a bit.
My question is regarding my returning symptoms. I need to reduce the prednisone due to the side effects so how much of the GCA symptoms is ok to accept? Mine are all mild, tolerable but is it harmful to my health? Is a certain level of symptoms to always be expected with GCA? I want to keep going with the prednisone taper & Actemra. My rheumatologist is having me keep a journal of symptoms & any changes so he can determine appropriate dosage of taper. I’m having regular bloodwork to check inflammation & Actemra effects on liver & blood clotting issue. I have a follow up very soon with rheumatologist but until then just wanted to hear if anyone else has been through this. Thanks in advance!