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Switched from Tacrolimus to Belatacept

Transplants | Last Active: 2 hours ago | Replies (89)

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@geomusser

It's a good thing that your wife's nephrologist did not outright reject the option to do Bela. Did she go over what are the criteria are to use Bela? Is this the same nephrologist you wife has had since transplant? We are from out-of-state so we have a home/local nephrologist who is working with Mayo to resolve my husband's issue with Everolimus(we think it's the drug that's causing his anemia). You are fortunate to be able to meet directly with the transplant nephrologist! We were told after 3 years post transplant, we're pretty much "on our own" - we do not have anymore follow-ups with Mayo Az.
With regards to Everolimus, the most common side affects are anemia, hyperlipidemia, mouth sores, edema, and proteinuria. I have not heard that high blood pressure is one of its side effects. My husband had mild edema - he can live with that but he cannot live with the anemia, which in his case is bordering on severe if left unchecked. So at the moment, he has been told by his home nephrologist to pause the Everolimus and take the dreaded prednisone instead. We are waiting for my husband to recover from the anemia before any changes be made to his long-term transplant medication.

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Replies to "@geomusser It's a good thing that your wife's nephrologist did not outright reject the option to..."

@caretakermom

Hi Mom

It seems like anemia is a very common side effect with all these immuno supressant drugs. My wife has had problems with it off and on over the years. So far this year she has had 2 Ferritin infusions and I can't even tell you how many shots of Aranesp (or something similar) 5 ish.

Anything more you can tell me about Everolimus? It sounds like that will be her Nephrologist's choice. How long has your husband been taking it? Does he take CellCept and/or Prednisone with it? My wife has some edema nor but it is every likely caused by the Hydralazine she is taking (for reasons I can't begin to understand). She is also taking 25 mg of Carvedilol twice a day and seems to tolerate that very well. But that is pretty new to her as she started it after she came out of the hospital about a month ago.

Thanks again for your help and best of luck with the anemia. It's always a struggle but it looks like we are in it together.