I had my first visit with him about 8 weeks ago. I gave him a very detailed typed up account of my last 3 1/2-year history with PMR, including my concern about scalp issues when under 9 or 10 mg (I was at 8 at that time). I then had a follow up visit 10 days ago when I was at 9mg and I told him then that I thought the itching, tingling and tenderness was getting worse. He pressed my temples and asked if I had any pain, which I didn't. He acknowledged what I said about the tingling etc. but then when he was entering in my new prescription for the increased dosage of prednisone (9mg), he questioned why I wanted all 1 mg pills. I told him I split the dose and he was not happy about that at all (it was on my detailed list from the first visit). That became the main topic of conversation and that is when I was instructed to take the prednisone all at one time, once a day. Two days later, I contacted him to let him know how much pain I was in and he then told me to go up to 15 mg (10mg am and 5mg at 2pm) for one day and go back to 9 mg. I was so sore the next few days (weekend) that I stayed at 15 mg and contacted him again on Monday. He said to stay at 10 and 5 for a week.

When I got the notice about the denial for Actemra, I messaged him about the possibility of an appeal and also to update him on the continued pain and my increased concern about GCA as the jaw pain was new. He said, my only options now were prednisone and Leflunomide and he made no comment on my concern about GCA. I responded that I wanted to appeal the Actemra decision and again expressed my concern about GCA. That was Friday, early afternoon but I have no response yet. I hope to hear something on Monday.

It doesn't help that my last CRP was 1.1 and SED was 13 and my WBC was 11.1. I was on 9 mg then. It seems like those numbers have to be high to get anyone's attention.

I have been wanting to go to Mayo's for over a year now but they don't accept my Medicare Advantage Plan.

I am very frustrated!