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Switched from Tacrolimus to Belatacept
Transplants | Last Active: Aug 30 1:19am | Replies (91)Comment receiving replies
Dealing with the medication and side effects is challenging. I started on Tac, but was having hallucinations. I was put on Bela about 4 years ago. I gained a lot of weight. I was subsequently taken off the Bela by another nephrologist and put on Everolimus. My doctor reduced my Mychrophenolate by 250 mgs. because I was pre diabetic. After 5 years, My kidney is doing well.
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@amkaplin
Hi there,
I was going thru this thread and saw your post which caught my attention because you mentioned Everolimus.
My husband was switched to Everolimus from Myfortic - over-immune and causes CMV recurrence during 1st year post transplant. The regimen for him has been since Dec '22 was Tac and Everolimus and has done well until an increase of Everolimus dose, to meet trough range, that started in Mar '26. He has developed anemia which got progressively worse. We discovered his hemoglobin dropped by 30% at office visit with home neph this past July, about 4 months after previous check up in Mar. Saw GI doctor - no internal bleeding. Next saw UCLA hematologist/oncologist ran tests showing no hemolysis and the labs consistent with bone marrow suppression (very likely by Everolimus). Labs not showing leukemia or lymphoma either. Mayo Az suggested bone marrow biopsy which have been scheduled for next Wed.
They've taken him off Everolimus so that he can recover from anemia and replaced with prednisone which is a horrible drug for him. He is type 2 diabetic pre-transplant and the prednisone jacks up his blood sugar greatly. Hematologist says may take a while to recover from anemia. Our next appointment with home neph is not till 09/01 and we'll have to talk changing transplant regimen. I'm very concerned about whether they(home neph with conultation with Mayo Az) can find something that works well for hubby. Will bring up with home neph but I don't think Bela is an alternative therapy because hubby is NOT EBV-seropositive nor is he is CMV negative, based on studies.
Anyways, there is a lot more involved but questions for you: do you have any side effects with Everolimus and if you don't mind sharing what are your daily doses? Have you ever had to adjust your Everolimus dose from time to time? What is your Everolimus trough level and is it individually tailored to your medical profile? Mayo Az likes it to be 4 - 7. Looking forward to your response. TIA!