Tacrolimus (aka Prograf) instead of Cyclosporin, anyone else?

[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!

[DKal]

Hi Jennifer - David from Chicago... I was on Prograf for a very short time so I can not give you feedback on this drug... Maybe you can try low dose cyclosporine? Zenapax was also given to me IV. I finally have increased my counts on a low dose steroid called Danazol. Hope all is well - I enjoyed meeting you!

[Laura]

I was first started on CSA. But then switched to Prograf when CSA was not working. Prograf didn't work either. I had bad side effects to the CSA...high BP, severe muscle cramps, etc. I had much less side effects with the Prograf. I really liked the Prograf over the CSA. I was on it about 6-9 months prior to transplant. Then I used it for transplant.

Laura

[Jennifer J]

Hi David, It was so nice meeting you at the conference too! Thank you so much for your feedback. I will talk with my doctor about Danazol and see what he says about it. I hope you are doing well!

[Jennifer J]

Hi Laura,

Thank you so much for your feedback. I really appreciate it. I saw from your signature that you got a MUD bone marrow transplant last year. How are you doing? I hope you are well. At the conference I met a few other people who had bad reactions to cyclosporin and were switched to prograf and most of them did well on it too.

[Laura]

Jennifer my transplant is going well, thanks. I have a post under the transplant section that gives multiple updates if you would like more information.

Laura