Prophylaxis while on Cyclosporin or Tacrolimus

[michelle_lapuz]

Hi there:

My name is Michelle, I'm a 34-year old female and a mother to an 8-month old and a 3-year old and was diagnosed with AA in late September of this year. I've been through ATG (rabbit lymphocyte) with subsequent serum sickness (due to a premature Prednisone taper)...it really sucked. Right now, I'm on Tacrolimus which is similar to Cyclosporin and on a ton of prophylaxis medications. Right now my biggest concern is the Valtrex (to suppress viral infections) - my husband read somewhere that in a small number of cases it was found to be the cause of aplastic anemia (1-2%) and in a study of transplant patients it caused neutropenia (10%) and in HIV+ patients it caused an even higher rate of neutropenia. My other big concern is the Dapsone that causes hemolysis (used as a prophylactic against PCP). I read in another thread that inhaled Pentamidine is a way around this but heard the taste is horrible, is this true? Anyway, if anyone has just decided to go off Tacrolimus or Cyclosporin and ditch all these prophylactics I would like to hear your outcome....the transfusions are a pain in the butt while waiting for a response but better than all those medications!!

Thanks,

Michelle

[Ruth Cuadra]

Hi, Michelle.

I had Pentamidine treatments after ATG too. The stuff does taste terrible. I'd describe it as a bitter aftertaste in the back of your mouth as you inhale. But it's not so horrible as to make the treatments impossible to tolerate. It was most important for me to have Albuterol as a pre-med before the Pentamidine to reduce the wheezing that always followed a treatment. Without the Albuterol, I would wheeze for an entire day and night, which was very unpleasant. It just takes a couple of extra minutes to do the Albuterol (also inhaled) and it saved a lot of discomfort.

Don't worry about the taste. Pentamidine is important to ward of lung infections that can be very nasty in an immune-suppressed person.

I don't have any experience with Valtrex or Dapsone, but I'm sure others who do will chime in.

Regards,
Ruth

[Murphy]

Hi Michelle,

I was instructed to stop cyclosporin a month ago after almost 2 years on the medication. I had serum sickness just like you due to the same reason and I remembered that my blood counts did not show any sign of improvement in the first seven month, meaning periodic transfusion during the first seven months.

We are keeping an eye on how it goes from here.

Murph