Josi (O-Josi-O) (eris_devotee) wrote,
Josi (O-Josi-O)
eris_devotee

Good news for a change!

My new rheumy supports my need and desire to be treated with rituximab infusions. Additionally, she did a complete panel of blood tests (SEVEN vials) and is evaluating my overall immune system situation. I presented with actual joint swelling, too, which normally mysteriously vanishes when I have a rheumy appointment. The doc wants an MRI of my ankles before she'll call it RA. She also heard a friction rub in my heart.

It may seem bizarro, and it does to me, to be happy that I have signs of active, and multiple, and organ-threatening diseases, but getting the right treatment paid for by insurance all depends on a fairly arbitrary rubric and now I finally have enough boxes checked off. Yes, I am walking like a gimp because any pressure on my heels causes my ankles to sing and I've had persistent (and getting worse) chest pains with each prednisone step-down.

So pred was masking all this stuff, and now it's not, and the treatment for the sum total is not steroids, it's a biologic. And even though it is off-label and in trials, rituximab has already become a doctor-preferred standard when it comes to serious forms of Grave's disease... because it is *that* successful.

I could see remission as early as January.

I'll then have a significantly hindered immune system. But, if it works, I won't have to worry about waking up blind and all these surgeries won't be for nothing.

Now I just have to be chill until the 21st (next eye surgery). Then all the docs will email conference, and put the next part of the plan into action.
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