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Well you'll never guess what. I saw the hematologist and she said because my tacrolimus levels were so low, she looked up drug interactions. Turns out, rifampin is a metabolic inducer of tacrolimus, so it makes your body metabolize it way too fast and keeps the trough levels low.
This week my level has been rising after I stopped the rifampin. She says we may even need to reduce the dose of tacrolimus, I am currently taking 10mg a day and it is $$$$$. I'm kind of annoyed at wasting 2 weeks of expensive tacrolimus while taking rifampin, and I was right about not feeling any effects from it.
She thinks my counts were bad due to not having enough immunosuppression. (I have a philosophical problem with immunosuppression but I am doing it anyway, 75-80% chance of remission seems like good math to me). So then I asked - does that mean the ATG did not work? (my burning question)
She said my lymphocyte count of 0.3 shows the ATG is working.
I am not sure why, if the ATG is working, that my counts are so bad, but I am willing to accept that and see what happens.
Interestingly, I had been on minocycline for the 5-6 weeks before my ATG treatment as part of the Marshall Protocol. My lymphocyte count went down to 0.4, which was my lowest count to that date. I wasn't on it long enough or at a high enough dose to see if it would have helped, and I was also only taking 25mg every 2 days (I have to work up to 100mg every 2 days). Also interestingly, my other counts weren't trashed by the minocycline. Mino is also cheap, which is really only of any consequence if it works.
There are studies showing mino modulates T cells, which is why I am mentioning it.
Anyway, she wants me to take bactrim to prevent PCP (pneumonia). Bactrim is one of the MP antibiotics, so I will be taking that on Mondays & Thursdays. I am back on 25mg mino on Mon, Wed & Fri.
I refused to take acyclovir, as it makes me feel sick. I have had shingles before and it is NO fun. If I get shingles again I will take acyclovir but until then, I think I am on enough meds.
Also starting back on exjade any day now. I am half scared to start it because I've been off the c diff abx just over a week. After my first round of flagyl, it took about 10 days for the c diff to come back. Since exjade gives you diarrhea, I thought I would wait another couple of days, but I think the c diff is gone now.
Deb
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