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Switched from Tacrolimus to Belatacept
Transplants | Last Active: 1 day ago | Replies (77)Comment receiving replies
@caretakermom
Hi Caretakermon
I expect that there is a lot about all this that Mayo is not telling us. I am a kidney donor and a caretaker as well. My wife got a transplant July 11, 2018 and has been up and down ever since (in all fairness much more up than down). She has been on the standard Tacrolimus, CellCept and prednisone all 8 years and has had issues. She has been losing sodium for years. She has been hospitalized numerous times with critically low sodium and they keep putting her in the SIADH basket, which has not seemed helpful for her. Limiting water intake does keep her from losing sodium but it also causes large spikes in Tacrolimus, potassium and many other things. Her lab work is pretty much laughable (if it wasn't so sad) almost every value is marker as "outside the range".
Now it seems that we have reached a turning point as she has something like 30% scarring of her kidney (likely from Tacrolimus - but no one at Mayo will admit that). Her GFR bounces between 20 some odd and less than 15 depending on the day and her level of compliance with their 1.5 L water restriction and she is still seeing substantial leg swelling late in the day. We are meeting with her Nephrologist at Mayo again next week and are hoping that we can get her onboard for the transition to Belatacept but it's kind of like jumping out of a plane for us. We have been asking about a change of medication for years, but her doctor has been strongly resistant for reasons we don't understand (and she can't explain).
Does anyone know why the Mayo staff is so reluctant to change patients to Belatacept? We understood there was a supposedly shortage of Belatacept during COVID but now I hear it is compounded at Mayo in Phoenix. Since the Mayo Specialty Pharmacy in Rochester no longer handles the standard trio (Tacro, CellCept, and pred) does that mean that Mayo is "transitioning" too? It's a real puzzle to us. The stories of how well so many are doing on Bellacept is encouraging but I am afraid the transition at this point will be very risky.
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@geomusser
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.