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So it looks like the ATG / tacrolimus didn't work, I had ATG in July and am 4 months out. The tacrolimus doesn't have many side effects, but it also doesn't seem to be working.
I am losing my hair. I am not sure if it is the tacrolimus or the fact that I had C diff 3 times, but if it keeps up I will soon need a wig. I asked my hemtologist if I could switch back to cyclosporine but she said no. I kind of had an argument with her, but she doesn't listen anyway. I don't know how much longer I will take the tacrolimus. It costs twice as much as the cyclo, and what's the point if it doesn't work?
Anyway, I started LDN this week. My HGB was at 100 yesterday (I got 3 units last Sat). On Tues I took 1.5 mg, on Wed I took 3 mg and Thurs I took 4.5 mg. I haven't noticed any effects, but I read it can give you insomnia the first week or so. I guess I have been a bit more awake at night, that's why I started at 1.5 mg. I will continue on 4.5 mg and see what happens.
I can feel my HGB is dropping because of the tinnitus - it gets louder. With my HGB at this level I wouldn't expect to feel bad, so I don't know if the LDN is making me feel any better, and how long it would take to kick in. I also started back to work on Monday, so I have a lot going on all at once.
For the LDN, I am just hoping the extra endorphins make me feel better. I don't expect it to make any difference in my counts.
I see another hematologist here next week. Since Sunnybrook gave up on me, there's no point going back.
Deb
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