(no subject)
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.
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.