Well the summer is over for me as I find myself back at school for work this week. Things are going well so far. I've had plenty of energy throughout the day, which was the big issue last spring when I went back. My GVHD symptoms are also under control right now. The rash on my arms and legs faded away and my skin looks very clear. The rest of my skin has improved as well, and there isn't any itching or peeling to worry about right now. Swallowing isn't difficult and the mouth pain and discomfort is under control. So while things aren't quite perfect, I'm not complaining much either.
Since starting the prednisone in the beginning of the summer I've had to visit NIH twice a week for a microfungin injection. I was taking fluconazole as my prophylactic anti-fungal, but apparently it doesn't react well with the level of prednisone I was taking. So the bi-weekly microfungin injection wasn't so bad during the summer when I had nothing to do during the day. Now that I'm back to work it would be a bit more of a disturbance to head across the beltway to NIH twice a week.
So I made it to NIH today and my nurse let me know that my infusion had been put on hold. I also had picked up some prednisone at the pharmacy, and they had a bottle of some other anti-fungal, voriconazole. It turns out that my NP and the GVHD team decided to put me on this new antifungal rather than the microfungin. The reason I hadn't been taking the voriconazole before was that it has adverse reactions with sirolimus. Since I am no longer taking that drug, voriconazole is now an option. So I'm happy that I won't have to head over to NIH twice a week at this point. The less time spent at the hospital, the more free of this disease I feel.
Unfortunately I'll have to head over to NIH tommorow and be late for work in the morning. My tacrolimus dosage was raised when the sirolimus was discontinued, and the blood test which gives the team the tacrolimus level in my system is time sensitive. So its a nuisance to miss time from work during the first week, but I have to remember to be thankful that at least I'm able to work right now. I'll still need to miss work for appointments now and then, but a few hours missed here and there is certainly an improvement over 5 months out of work.
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