Hi John,

I just received word yesterday from my doctor's office that my insurance company had denied the Actemra due to the "diagnosis". I'm sure they are looking for GCA and/or RA. My doctor doesn't seem interested in appealing and said he hasn't had any luck getting anyone approved for Actemra. I plan to see if I can appeal myself. He wants me to try Leflunomide but I'm not sure whether I want to try it or not. Honestly, I'm really not sure I want to try the Actemra either but I'm getting nowhere fast here. I'm back where I was 2+ years ago.

I have subtle GCA symptoms (my opinion), itchy, tingling scalp and some tenderness. Also since I am in a "flare" right now, I have some jaw pain which eases up a few hours after I take the prednisone. I feel like I might have GCA and/or vasculitis but the doc said that even with angio studies that it would be unlikely to show anything since I've been on prednisone for 3 1/2 years.

I have "a new to me" rheumatologist, who didn't like the fact that I have been splitting my prednisone into two equal doses, morning and evening (per my previous rheum advice) so he changed me all at once in the morning.....10 days ago. I am now in a flare and am back up to 15 mg daily (I was at 9 mg when he had me change). After 3 days of agony for 10 hours each day, I called and said, I couldn't take it all at once. So, for a week now, I have been taking 10 mg in the morning and 5 mg at 2pm, like he then suggested. However, I'm still having quite a bit of pain/stiffness from the minute I open my eyes until 2-4pm. So today I took 10 mg this morning and will take 5 mg this evening. If I'm sore in the morning, I'm splitting it evenly again. It's what works for me. He also told me that I have steroid resistant PMR.....is that really a thing?

Thanks for the info and reply!