Thank you for the warm wishes. I began the prednisone at 40 mg., back in 2014, and I didn't have GCA, it was just the PMR, alone. Honestly, I can't remember now what the tapering dosages, the drops down from 40 mg were. We tried over and over again, always going back up to 40 mg, and then dropping down, at first by 10 mg, then 10 mg. Each time I got to 20 mg, the lowering of that failed. If I am remembering correctly, by 5 mg. Then, I'd flare again. So, we'd go back to 40 mg, and try it again. Doing the reductions from 20 mg on down each time less, and less, to try to find a plateau I might maintain at, always failed. That winter I started showing Raynaud's Syndrome too. The end result was too much Prednisone at 40 mg over the time period. It was actually my Opthamologist who convinced me to quit the Prednisone. Oh, and I forgot to tell you I gained 80 lbs! When I hit 80 more pounds than I had begun at, I quit the prednisone and made my plans to move to WA. My immune system was all messed up already, besides this and I'm truly grateful that the PMR in remission. It tried to flare, began to flare, last winter one day while my daughter and I were stuck in an ER for a different problem. The cold in there was just way too bad. I wasn't dressed for it, and no one would give me a blanket or something, or just let me even sit in a chair, in the hallway behind the desks. I understood their reasonings but it turned out my daughter and I were both concerned I'd flare. It has to do with when my feet get extra cold too. We don't know what's wrong with my immune system but it's damaged in some way from chemicals I'm now allergic to. So, we left the ER, after asking for accomodation but they just couldn't. It was a Covid variant run on their ER that week, and the hospital literally was out of beds. I had osteoporosis right after a hysterectomy which traumatized a few parts (ovaries) left, so they shut down. That sets women up for osteoporosis. Then, I did infusions two Fall seasons in a row (which I'd never do again) and those worked to bring my bones up to osteopenia instead. Yes, it's true, the old life is gone. Along with it goes many friends and even some relatives that think "the disabled" just want pity and to "play the victim card." I've learned I just must forgive them, even if it's forgiving them for not forgiving me, and move on. I believe that's what really causes the "depression" people keep harping on. Who would not grieve the loss of things like your oldest and dearest friend. Or your own father turning his back on you when you literally can't work and thus, lose the house. Things really changed for me one day when I thought to myself, "I'm going to live before I die. Really live." Since then, I've travelled to Scotland, UK, and many US States. I now live with a daughter, and we share the rent. It works for both of us.

Jump to this post