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Switched from Tacrolimus to Belatacept
Transplants | Last Active: 1 day ago | Replies (77)Comment receiving replies
@caretakermom Hi there! I had my live donor transplant at Mayo Rochester on 12/13/2022. I think that because I'd not been on dialysis, recovery from the surgery went very well. I started investigating the immunosuppressants that I'd been prescribed - mycophenolate mofetil and tacrolimus - and discovered that tacro has nephrotoxic effects. So I started researching alternatives and found Belatacept. Mayo Rochester had actually been doing studies on using it as a protocol so at my Month 4 appointment I basically presented my research to the doctor. His first response was that my new kidney would be good for 20 years. Since I had the transplant at 55, I asked him if I should plan on dialysis and a second transplant at age 75 (which - since I'm Type O - would probably preclude me from ever coming up on the deceased donor list... but that's a different discussion 😉 ). His response was a slight pause and then he said that he would bring it up to the transplant committee. They approved it and I started Belatacept in July 2023. So I was very fortunate that I was in Rochester and that transplant team had already been studying Belatacept's use. I'm curious as to what your coordinator said was so bad about the drug. Good luck! Let me know if you have any questions.
Replies to "@caretakermom Hi there! I had my live donor transplant at Mayo Rochester on 12/13/2022. I think..."
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@2gallonhabit
My husband received his kidney txplant at Mayo Clinic Az in March 2022, at 62 years old. When I asked the txplant coordinator about Belatacept (during the first year post txplant), she said that it can cause brain damage - she did not elaborate. That was the first time I ever heard anything bad about it because online the it was all positive comments..
At the time, I was quite active in reading online posts about alternatives to the usual transplant meds. Like you, I have heard that these meds can cause nephrotoxicity over time. All of the online feebacks regarding Belatcept were positive and so I was very surprised about the nurse's comment.
My husband recently developed a severe case of anemia and we think the culprit is one of his transplant meds(Everolimus). Hematologist/oncologist ran tests howing no hemolysis, all labs consistent with bone marrow suppression. Mayo Az said to get a bone marrow biopsy to show it's working well ()this will point to the Everolimus as the cause of the anemia).
We have a local/home neph and Mayo Az txplant center is out-of-state. We are working with home neph who is in actual contact with the Mayo Az txplant team. We are not sure if they're going to restart Everolimus, once anemia is recovered, or change of medication. If the latter, not sure what to change to because he has already tried Mycophenolate/Myfortic during the first year - did not work because too overly suppressive causing CMV reccurence. Everolimus worked well until this past March when dose had to be increased to meet trough range. So I'm thinking of asking if Belatacept could be an option. I have not done any "research" regarding whether my husband would be a good candidate but would willing to try anything to save his graft.
There is also the question of whether insurance would cover Belatacept which is an expensive therapy(so is Everolims compaared to the other ones). We have Anthem PPO commerical/employer health insurance because husband is still working full-time.
Questions:
How long did it take for your insurance to approve it? Do you have to get prior authorization once a month when you get your infusion? Do you get your infusion at the transplant center?