Can your body just reject cyclosporine?

[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.

[2BPilot]

My son, age 12 just started with the hATG, and is on cyclosporine. We have an excellent medical team here in Canada. My son has sever IAA, and we have been warned that the treatment will (if it works)take at least 4-6 months. I know he has had different reactions even at this point, and is on steroids to help with the reactions.

I can't really answer your question, but I know one thing we have found is to try to stay as positive as possible. We are constantly reminding ourselves to look at the what is, not the what ifs (easier said than done).

My son keeps looking at this as "an adventure"...it is not easy, but you can make it through this....

[Taralv]

Thank you for taking the time to reply! I think the hardest part for me is trying to balance taking care of my kids with all of this crazy process. I was diagnosed during pregnancy last year and spent the whole pregnancy receiving weekly transfusions - platelets and blood. But even as hard as that was, struggling with being so sick and the fear of relapse has just taken its toll. Still, it helps to know that I am not alone. Best of luck to and to your son - he sounds like he has a great attitude!

[evansmom]

Hi Tara.

This sounds more to me like your cyclo blood level is too high, hence the worsening of your symptoms or the development of new issues. Have your level checked ASAP.

[sues]

I've been on cyclosporine since April after doing the Atg treatment and I have to say it is pure poison. I think the treatment is very hard on the body, but I continue to take it 150mg x 2 because it can make me better. I'm still having red blood and platelets transfusions, but my reticulocyte count is way up, so I guess it is working.

[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