[Sally D]

Originally Posted by Taralv

I've been lurking around the forums for the last seven months after my ATG/cyclosporine treatment in November, and I have posted some questions about my reaction to be cyclosporine. My numbers have come up slowly - platelets bounce around between 120 and 140, hemoglobin in be 9's and 10's range) and we've been talking about tapering. I have had issues with nausea, and GI issues, but I mostly had them under control (livable - never fun). But this weekend everything just went south. I took my morning dose - I take 300 mg daily in three 100 mg doses) - and my head started hurting, I began dry heaving and it felt like I drank kerosene. I couldn't take anything else that day. Yesterday I tried to go back to taking it but I was so sick I could only manage 2 doses. Today - more of the same. I go into tomorrow for lab work, and I've already called and told them what is going on, but I find that information here is much more reliable/helpful. So, can a body just spontaneously reject cyclosporine? After 6-7 months? I've never had any easy time if it but this is horrible. It feels like I'm poisoning myself. But I am afraid of relapsing! I have 5 children to care for and this situation is not bearable - if anyone has any experienced advice I would appreciate it. Thank you.

Hi Tara, I'm sorry to hear about your very unpleasant experience with Cyclosporine. I was prescribed Cyclosporine in 2008 with my ATG treatment and it worked well but was very hard to take. I also had some beginning kidney problems . I relapsed in 2010 and after another hATG treatment I was given a different immunosuppressant, tacrolimus (Prograf) which was much easier to tolerate and did not damage my kidneys. I agree that you should have your levels checked but also consider this alternate immunosuppressant. Good luck to you and your children.
Sally D