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Switched from Tacrolimus to Belatacept
Transplants | Last Active: 1 day ago | Replies (77)Comment receiving replies
Hi @geomusser ,
I'm sorry to hear your wife is not feeling well. Did she get her kidney transplant from Mayo Az and do you live locally to the transplant center? Did you advocate Belatacept infusion or did her nephrologist recommend the switch? If she is a good candidate for Belataceot go for it. I have heard mostly positive things, though that is an individualized experience. But at this point, I don't think you have anything to lose?
Unfortunately my hubby would not be a good candidate for Bela. His donor kidney is CMV+ and I do not think he has the EBV antibody. I believe at a minimum the patient has to meet these 2 criteria to be a good candidate. I will bring it up to our home neph, though he would probably defer to the transplant nephrologist.
On regular follow-ups, does your wife see the Mayo transplant nephrologist or do you have a home/local one? Did you ever question the nephrologist why they put her on prednisone? That's what is causing blood sugar mayhem now for my husband. I'm praying that this is only temporarily and that they would remove it from his regimen once we find out what my hubby's immunosuppressants situation is. It is very frustrating for us because we have to work with our home neph, who has to consult with the Mayo transplant nephrologist - we don't have direct access to the Mayo transplant nephrologists.
I'm seeing posts from patients saying they are on a reduced dose of immunosuppressant drugs. For my husband, Mayo out right rejected that when our home neph called to consult with them. He said Mayo Az is "not happy" with the lower Everolimus dose which is tolerable by hubby. We would be perfectly happy if Mayo Az would allow my hubby to restart Everolimus but only at a level that is tolerated by his body(which is different in every patient). We'll have to wait until 09/01 office visit with our local neph to get more information.
Please update us on whether you're able to get Mayo to switch to Balatacept infusion. Would be interesting to hear their reasons for/against it.
Replies to "@geomusser Hi @geomusser , I'm sorry to hear your wife is not feeling well. Did she..."
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@caretakermom @amkaplin @geomusser
First off let me say how sorry I am about the real physical and then emotional struggle dealing with your immunosuppression regimens. Hasan Khumash, Mayo Phoenix, is doing or has completed a research study with Belatacept. https://www.mayo.edu/research/clinical-trials/cls-20318351 (Sorry, I just can't find a date for this study so I don't know how old it is.)
And so I don't know any more about the outcomes of the study or if it is even finished. This is just to say that Mayo/Phoenix doesn't appear to be ignoring the topic. From what I can read, if you are EBV negative then Belatacept is just not an option at all. I'm still trying to sift through the CMV Donor positive/Recipient negative situation. I don't know if Belatacept could still be tried under those CMV conditions. For myself, I am going to at least try to open the conversation. Of course I absolutely want to be open to the expertise of my Mayo docs. I also don't want this quality of life for all of my remaining years. Best wishes to all.