I've certainly been off the grid with my trip to Maine and then an eight-day visit from my 19-year-old granddaughter from Canada. My brain and heart are just full of wonderful memories.
I am still doing weekly injections of Actemra and am certain my rheumatologist will continue that. I remained on .5 mg of prednisone until I returned from Maine and unpacked. I stopped pred on June 27; so far, so good. I started this GCA journey in August of 2019 at the ripe age of 78, this September, I will turn 84....so much for Grammy 80!! I owe you all so many thanks because, without your support and knowledge, I know my mental state wouldn't have been able to be so strong. And I realize my journey is not over.
About midway through my month of taking half a one-milligram tablet, I began to notice soreness I didn't have before, and it has become more noticeable. Yes, when I wake and sit, my joints and even fingers on one hand are sore. That darn shoulder replacement last summer didn't help either. I'm feeling things there that I hadn't noticed. I feel fortunate to be as old as I am; quality of life is most important; moving around! I'll be seeing my rheumy the second week in August. Is it possible that just one milligram can make that difference? I guess it is because I had a friend in New Hampshire, GCA, who told me she tried for 22 years and couldn't shed that one mg!!
(One little story) That NH friend, who passed at age 90, was the wife of an orthodontist I worked for. Back in the 1980s...he told me about a rare disease his wife had..head..arteries...blood flow..possible sight loss. When GCA raised its head, and I was in the ER, all of his words came flooding back. I called him on my cell and talked to both of them, and, yes....it was GCA she had...and we bonded~ again. Life is amazing....so many teachers come our way....like all of you.💞💞💞
Actemra at 3mg prednisone for GCA
Reducing prednisone to zero
At zero prednisone, almost a week
Day 2 at Zero Prednisone and counting
Finally reached zero preds!
