Once again, whenever I make plans, everything seems to go to hell in a handbasket. Two days after my transplantaversary, I broke out in a skin rash. At that time, I had just gone down to 7mg on my prednisone, stopped taking Jakafi, and started taking Imbruvica, so I didn't know if I was having an allergic reaction to the Imbruvica, or if I was developing skin GVHD. It started with my scalp itching, which I didn't initially pay any attention to, as I keep my hair squished under a hat 90% of the time, and thought that it was just hat itch, but then, my neck, arms and chest started to look blotchy and got very itchy - and weird - my lower face felt so so dry. Like I kept going in and putting moisturizer on my chin and around my mouth, because it just felt so dry. And then I got patchy spots between my knees. Ug. I immediately started taking benedryl and put hydrocortisone cream on it, and that helped with the itch, but it didn't go away. This rash wasn't like the rash that I got when I started taking Bosutinib, back in the day, it was much more subtle and faint, but it itched like crazy.
 |
| Faint Rash |
I was scheduled to see my dr the next day, so I just kept up with the benedryl and hydrocortisone until my appointment. When she saw it, she was of the opinion that it was GVHD, as she felt that a drug rash would be much more raised and welt-y looking. So back up to 20mg of steriods for me. (Which literally made me cry, because I've been working so hard to get off prednisone, and going back up to 20mg pretty much undid 3 months worth of tapering in one fell swoop.) I continued taking the Imbruvica, and with the increased dosage of prednisone, the itch went away, although my arms are still a bit blotchy. Sigh. Which means that it probably was skin GVHD. Sigh. Which means that it's going to be hard to get off steroids without a flare. Sigh. The dr. also nixed vaccinations, as she didn't feel like I should have any while I was having an immune flare. So I'm still unvaccinated. Now, a month later, I've been able to taper back down on my prednisone to 12.5mg without any GVHD flares, and I've decided to stop taking the Imbruvica, as I don't feel like I'm getting any benefit from it. My joint pain is the same/worse as it has been, and I'm having some bleeding issues, despite the fact that my platelet count is fine. (Petechiae rash on my arms, bruising all over my legs, several bloody noses, and more!) The dr would like for me to try Rituxan next but right now, I say no. I'm tired. I need a break.
I don't get a break, but I need one. Since last month, I am on a bunch of new meds. I've been prescribed Gabapentin as my fingers have been getting stiffer and the joints actually "get stuck" or locked into position sometimes. I've also been prescribed an additional blood pressure medication, as it seems like one is just not enough to control it at this time. Electrolytes have been coming back consistently low, so I've added more magnesium, and started taking potassium. I've been getting lots of leg and foot cramps, so I suspect that even with the additional supplements, my levels are probably still lower than they need to be. Also, the dr has encouraged me to try Ritalin to help with my fatigue. (Haven't started that one yet, maybe next week.) My tremors and shaking has gotten much worse for some reason, and at last count my tacrolimus level was high (11.9), despite the fact that I am on a very low dosage (.5mg daily) so I do get to start taking tacro every other day instead of every day. My breakfast is seriously more pills than food.
Aside from all the medical nonsense, which is basically my whole life, time marches on. The fall is absolutely lovely up here this year, I'm glad I'm here to see it. In more ways than one.
