[Jennifer J]

Hi, My name is Jennifer and I was diagnosed with AA ten years ago at the age of 18. I do not have any siblings so I received horse ATG followed by tacrolimus (aka prograf) instead of cyclosporine. We asked the doctor why he chose tacrolimus instead of cyclosporine. He said that tacrolimus does the same thing as cyclosporine but appears to have fewer side effects. I responded well to ATG, my counts went up to just below normal within about 3-4 months. The tacrolimus was slowly tapered down over a period of 1.5 years. I had a relapse a few years later in 2005. Tacrolimus alone didn't improve my counts so we decided to do rabbit ATG in 2006 followed by tacrolimus again, same as before, but this time the taper would be much longer. Again, I responded well to ATG, counts up to just below normal within about 3-4 months after ATG. The tacrolimus has been slowly tapered down but I am still on it now, it has been a little over 4 years. I heard that some people have to stay on low doses of cyclosporin (or in my case tacrolimus) indefinitely, otherwise they relapse. I am fine with that, but I was just wondering if anyone else in the forum has been on cyclosporin or tacrolimus for this long or longer? And if so, do they have any side effects? I have been getting headaches all the time for over a year and I think they are caused by the tacrolimus. I just attended the AAMDS conference in Bethesda, MD and I found only one other person who had been on Tacrolimus so I am trying to find anyone else who is on it too.

Any insights you may have would be great. Thank you!