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Hi All -
First of all, I'm so happy I found this forum. The support and encouragement that is shared is extremely positive - it gives our family lots of energy to deal with this horrible disease.
I'm mainly writing for my father - who was diagnosed November 2017 with MPA. Here is the timeline in condensed form of his development:
- Late November, blood in sputum
- Late December, admitted to ICU with kidney failure and lung filled with blood
- 3 week ICU stay including ventilator support, continuous dialysis, and immunosuppresants
- 2 cycles of cytoxan total during 4 week stay in hospital. once a week cycle of rituxan (4 total)
- He came home with great lung function, creatinine at 2.7 (no dialysis) and down to 2.5 after a month.
- Weekly physical therapy, on large doses of prednisone and tapering
My father is in decent health, but I believe he is getting impatient. I've explained that people don't kick this disease after 3 months from diagnosis, I think he was optimistic because the improvement was so drastic in the first several weeks he was off the ventiator. Now that the progress is slowed, he feels like he's back tracking.
I wanted to ask the group if they've experienced the following:
- Small amounts of blood still in sputum (only in mornings)
- NEW symptoms that he's never experienced before AFTER being sent home from the hospital after his first rounds of immunosuppresent infusions - this one mainly being joint pain in his knees (having trouble walking on it)
Are these normal? He's scheduled for more rituxan 6 months after he's left the hospital (in July,) but i just wanted to make sure he's experiencing typical symptoms pre-remission. Any advice will help tremendously.
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