My joyful excitement over finally wearing a bathing suit I’d never worn? The peaceful swim in the salty sea ended in disaster within just a few days.
On Friday the allergic and autoimmune symptoms were so bad I took 5mg prednisone. On Saturday they were no better and I upped the dose by 2.5mg to 7.5mg. I moved forward my absurdly expensive biologic injection by a day. I haven’t been able to convince my health insurance to get them more frequently so it’s a risk.
I’m doing better today. My pain is abated to an almost unnoticeable level at a 2. That’s rare for me. And it makes me want to rush into as much work, chores and activity as possible just to enjoy it.
I’m typically working with a 5-6 level of pain on any given day but I can work (with medication) up to a 7 within reason. Past 8 I’m in bed and struggling.
The downside is of course that prednisone just sucks. It messes up your appetite. You balloon up almost instantly with side effects like moon face. And your body develops a dependency quite rapidly.
Titration off of steroids like prednisone require a steady and slow discipline so you don’t get “blow back” as it can make your symptoms even worse.
I’ll have titration for a few days ahead of me. But maybe I’ll get to enjoy the lack of pain. Already I’ve cleaned for an hour, done laundry, checked off a number of small “to do” list items and I am blessedly free of the exhaustion that comes from working with moderate to severe pain that is my normal daily experience.
I was sent a study in the journal Nature about a team who used CAR T therapies to achieve total remission in 3 patients. And I see hope on the horizon.
One woman and two men with severe autoimmune conditions have gone into remission after being treated with bioengineered and CRISPR-modified immune cells1. The three individuals from China are the first people with autoimmune disorders to be treated with engineered immune cells created from donor cells, rather than ones collected from their own bodies. Nature