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Kidney Transplant - Side Effects of Immunosuppressants

Posted by taco @taco, May 9 7:13pm

Hi, I have a kidney transplant and am talking to my doctors later this year about addressing possible side effects from immunosuppressants. My platelets started dropping recently and I have a long-standing low red/white blood cell count. I just learned that a possible cause of my pancytopenia might be mycophenolate, which is known to suppress bone marrow. I take 500 mg am and pm. I am told that lowering the dose or switching to a drug like azathioprine might help.

I also learned that switches should be gradual, so my question about reducing my tacrolimus to address the anxiety and memory loss that I have especially upon waking is secondary. Anyone here have experience addressing these side effects at the Mayo Clinic? My tacrolimus level is 5-7 ng/mL. I also take 5 mg of prednisone in the morning, which they tell me is too low a dose to cause anxiety?

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taco | @taco | May 29 2:23pm

Thank you all for the comments! Does anyone have experience lowering the Tac Dose?

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dotygl | @dotygl | May 29 2:32pm
In reply to @stephanierp "@dotygl I am so sorry to hear this. I will share I did not feel good..." + (show)
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@dotygl
I am so sorry to hear this. I will share I did not feel good on Tac either. i switched from Tac to modified Cyclosporine 4 years ago and do better on that drug. It is a delicate balance - quality of life vs health of transplant. I pray you are able to communicate clearly and your physician can listen and also communicate clearly, so you may find the best answer for your husband❤️

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@stephanierp Thanks for your caring spirit and that the change to another drug has you feeling better. Happy for you. I feel like we have talked ourselves to death to deaf ears about new changes. With a rejection of organ in first 2.5 mos and taking 14 mos for kidney to work well and blood chemistry in labs to be good----changing anything now is not on the playing table. We went down that intense journey for 14 mos . Since the kidney works the doctors are severely hestitant to change anything. We live on east coast . After a while you get tired of being poked and prodded on too. I am so very out of ideas to improve his or my lives. Never in a million years saw this coming. His chemo long ago for cancer was a picnic compared to all this.

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craigcraig | @craigcraig | May 29 2:55pm
In reply to @taco "Thank you all for the comments! Does anyone have experience lowering the Tac Dose?" + (show)
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Thank you all for the comments! Does anyone have experience lowering the Tac Dose?

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@taco Hi Taco. I had a full liver transplant two years ago. After 2 months in AZ Mayo sent us back home to CO. And while I have had issues (still have stenosis, CMV, blood clots, etc.) My only reaction to TAC was headaches at first and gut issues still. But Mayo has reduced my dosage of TAC a number of times over the last two years. While I have been careful always and do the right things I have only been sick with stuff I caught two times in two years. I now go to the stores , grocery shopping, ball games, we have even hosted a party with 30 friends and family at our house. No issues. I get out of the house every day. They have steadily reduced my TAC from 4 mg per day ( 2 am, 2 pm) to now 1 a day (.5 am, .5 pm). Best of luck.

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taco | @taco | May 29 3:24pm
In reply to @craigcraig "@taco Hi Taco. I had a full liver transplant two years ago. After 2 months in..." + (show)
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@taco Hi Taco. I had a full liver transplant two years ago. After 2 months in AZ Mayo sent us back home to CO. And while I have had issues (still have stenosis, CMV, blood clots, etc.) My only reaction to TAC was headaches at first and gut issues still. But Mayo has reduced my dosage of TAC a number of times over the last two years. While I have been careful always and do the right things I have only been sick with stuff I caught two times in two years. I now go to the stores , grocery shopping, ball games, we have even hosted a party with 30 friends and family at our house. No issues. I get out of the house every day. They have steadily reduced my TAC from 4 mg per day ( 2 am, 2 pm) to now 1 a day (.5 am, .5 pm). Best of luck.

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@craigcraig Thank you. I started this post for information like that. I looked around mayoconnect last year and recall a number of people taking 1mg a day. I am going to talk to my transplant clinic nephrologist about it in a couple weeks, and possibly get a consult at the Mayo Clinic on this issue. I also need to address my low red blood call and platelets though! I believe Tac is mainly affecting my mood and memory.

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