Switching from Tacrolimus to Cyclosporine post kidney transplant

Posted by benedict66066 @benedict66066, Apr 17 9:51am

The folks at Mayo are switching me from Envarsus (tacrolimus) to Cyclosporine due to side effects post kidney transplant. Can anyone who has had this happen tell me what it was like? Did it help you feel better? Were there unforeseen problems?

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I had liver and kidney and originally on tac but had some bad side effects so switched to cyclosporine and it is working much better. Only thing with cyclosporine is they will most likely have you do a weekly blood test for the level. Hope this helps

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Hi @benedict66066
It's very nice to meet you. May I ask you how many years you ago you had your transplant? And what side effects TAC is giving you?
I am 5 years post kidney transplant and started growing squamous cell skin cancer on my scalp, so I think a change of meds is in my future too.

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Profile picture for hello1234 @hello1234

Hi @benedict66066
It's very nice to meet you. May I ask you how many years you ago you had your transplant? And what side effects TAC is giving you?
I am 5 years post kidney transplant and started growing squamous cell skin cancer on my scalp, so I think a change of meds is in my future too.

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@hello1234 it has only been 13 weeks since my transplant. I was suffering, extreme weakness and fatigue. Also extreme stomach bloating, and some pain associated with that. I also developed some cardiac issues.These are only my first days in taking cyclosporine, so we’ll see if there’s any improvement.

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I should just say, too, that they really didn’t wanna make the change as tacrolimus is the front line for anti-rejection therapy. We’ll see how it goes for me.

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Profile picture for jeffhuegel @jeffhuegel

I had liver and kidney and originally on tac but had some bad side effects so switched to cyclosporine and it is working much better. Only thing with cyclosporine is they will most likely have you do a weekly blood test for the level. Hope this helps

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@jeffhuegel yes, that does help. I appreciate your response.

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Profile picture for benedict66066 @benedict66066

@jeffhuegel yes, that does help. I appreciate your response.

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@benedict66066 Two cents from the peanut gallery. After my liver transplant 2 years ago I had severe headaches every night/day and Mayo attributed it to a TAC side effect. They offered to switch me to "something else". But as I read that TAC was the gold standard I stuck with it, muddled through and eventually the headaches lessened. And went away 100% after my dose was reduced. Good luck, hope it works out. (---:

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Profile picture for craigcraig @craigcraig

@benedict66066 Two cents from the peanut gallery. After my liver transplant 2 years ago I had severe headaches every night/day and Mayo attributed it to a TAC side effect. They offered to switch me to "something else". But as I read that TAC was the gold standard I stuck with it, muddled through and eventually the headaches lessened. And went away 100% after my dose was reduced. Good luck, hope it works out. (---:

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@craigcraig So happy it has worked out for you. Good to hear all experiences. Thanks for your reply. ~at what tac dose did your headaches go away?

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Profile picture for benedict66066 @benedict66066

@craigcraig So happy it has worked out for you. Good to hear all experiences. Thanks for your reply. ~at what tac dose did your headaches go away?

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@benedict66066 By the time I left AZ (two months after transplant) I was down to 4 mg a day and still had the headaches but not nearly as bad. 6 months later down to 3 and it was barley an issue. Now 1.5 and never a headache. Best of luck !

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Profile picture for jeffhuegel @jeffhuegel

I had liver and kidney and originally on tac but had some bad side effects so switched to cyclosporine and it is working much better. Only thing with cyclosporine is they will most likely have you do a weekly blood test for the level. Hope this helps

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Hi @jeffhuegel
May I ask what your symptoms were before they switched TAC to Cyclosporine? I am very happy to hear that the bad side effects of TAC resolved with the med change!

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Yeah I had cognitive issues, couldn’t figure out how to use silverware or even draw a clock

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