I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up happening a few weeks earlier than I was scheduled to see them.
My endocrinologist was stumped about all that had gone on at the hospital - so many tests and such severe symptoms that it seemed impossible that they found nothing that would explain what was going on. My hemolysis seemed to get a lot worse while I was off dapsone, my hemoglobin dropping below 10. Because of all this, she thought it was reasonable to stop the dapsone all together, as it may be a cause of the symptoms I have had, but wanted me to check with rheumatology first to see if they agreed. I also had labs to check that my ACTH came down, and my electrolytes were normal.
I emailed my rheumatologist to see if he thought it was okay to stop the dapsone, and he asked me to come in the next day to discuss options. Immediately I knew I didn't have a lot of options if they wanted me to come in the office, usually this kind of thing can be done over the phone or email. The drug he recommends is Rituxan, which has to be infused via IV. It comes with a risk of severe allergic reaction, infection, and my most hated side effect - nausea. I can deal with pain no problem, but make me too warm or nauseated - forget it.
I asked if there were any other options, like plasmapheresis, which where they take my blood plasma, which holds antibodies that attack my red blood cells, and infuse a donor's plasma which has correctly functioning antibodies. He didn't think this would be a good option because I would need either a central line, or PICC line, to handle the frequency of these treatments, which could be as frequent as once a week. Having these lines also means increased risk of infection, blood clots, and of course, more time in the hospital.
I am very hesitant to try the Rituxan, because of the dangers and side effects, but my only other option would be plasmapheresis, or a bone marrow transplant. He did say we could watch my blood counts for a while and as long as my hemoglobin stays above 10, we can wait to treat this, but I have a feeling the hemolysis is a part of the hypoxia and shortness of breath.
I just don't know what to do. If any of you have experience with Rituxan or hemolytic anemia let me know!