I was diagnosed with disseminated MAC last October and put on a 3
drug regimen of Clofazimine (Lamprene), ethambutol, and
Clarithymycin (Biaxin.) I had also been earlier diagnosed with
CMV retinitis and was getting ganciclovir IV 2/day for an
induction
phase followed by 1/day for 5 days of the following weeks.
My problem is that the pharmacists tell me they cannot get
Clofazimine any longer. And the ethambutol has its own nasty
visual
disturbances. Lots of floating brown patches.
My understanding is that clofazimine is a fairly important
anti-leprosy drug sold overseas in 3rd world countries. It's
made by Geigy
-- by I don't think the one of Ciba Geigy fame.
My insurance is very forgiving about this sort of gray drug and
I'm sure would pay for it if I could just source it. Any ideas
out there?
Oh, saw someone's discussion of their T4 cells. I no longer
count mine. I'm sure there is lot's of information -- but you
always get into trouble trying to extrapolate downwards. They're
only good as guidelines -- How much of the pop has AIDS, when to
start treatment for CMV or PCP. I'm now taking cytovene by mouth
and will see h0w that works out. My count was less than 10 two
yrs. ago.
--
Jonathan Stanley
