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Switched from Tacrolimus to Belatacept
Hi all. I'm just shy of my one year kidney transplant anniversary. At my four month appointment I asked my doctor if I'd be a candidate to switch from Tacrolimus to Belatacept (I'd done the research and knew that I was). The reason I asked was because despite Tacrolimus being the "gold standard" (combined with Mycophenolate Mofetil) for anti-rejection medications, it comes with side effects. Mine included significant GI issues, hair loss and steadily increasing blood glucose levels. Also, I was concerned with the nephrotoxic effects of the drug (ever notice that as your dosage goes up, your creatinine goes up as well?).
I started the Belatacept infusions at the beginning of July and am loving the change. My hair stopped falling out and started growing back. My blood glucose levels returned to normal. My GI issues are gone. But more importantly, I saw an 0.24 decrease in my creatinine levels and an 11 point increase in my eGFR.
Everyone's experience is different but check it out with your doctor if you're interested in learning more. I'm only 56 so I want to keep this kidney has healthy as possible for as long as possible.
Take care.
Vicki
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@benedict66066 Excited to hear that you're investigating Belatacept. I've been on it for three years now and am not experiencing any side effects. So happy I made the switch. My transplant and followup have been with Mayo-Rochester.
@2gallonhabit I am so happy to hear this!! I have done so poorly on my anti rejection meds even though I am already on a reduced dose. Did you approach the docs about Belatacept or did they offer it according to your medical profile?
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1 Reaction@benedict66066 Great questions. I approached my doctors with research i had done that showed that based on initial studies, my profile fit qualifications (I cant remember them off the top of my head right now). Initially my doctor said that my new kidney would be fine for 20 years... So I asked him if I should plan on a second transplant in my 70s. He responded that he'd bring it up in committee (& so the change in my protocol was approved). 😉 Always advocate for yourself 🙂 Good luck!
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2 Reactions@2gallonhabit Do you know why Belatacept is not used more widely? Why the onus is on the patient to advocate for the change?
@benedict66066 just my opinions but I think its because it's a newer drug and hasn't been integrated into established/proven protocols. Then there's also possible adherence issues since you have to go to an infusion center every 28 days... And the cost... MUCH more expensive than an rx for tacrolimus.
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1 Reaction@2gallonhabit Thanks for this. I'm on Medicare and I am told it is covered. But! I'm still at the beginning stages of investigating this drug. I've watched many videos and read many studies. I appreciate you taking the time. Best to you.
@caretakermom
Hi! I know you were asking questions about Belatacept and I see this new discussion today! I wanted to make sure you saw these positive comments. 😊
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1 Reaction@hello1234
Hi there,
Thanks for notifying me about this thread re Belatacept. Yes I have seen mostly positive feedbacks regarding Belatacept infusions from those who currently using.
As I mentioned, prior to being discharge from transplant I had inquired the txplant nurse coordinator about this and she had nothing but negative things to say about it. So idk if Mayo Az is willing to put him on it, even if he is a good candidate. I have also asked our home neph about it and he has told me (during 1st year post txplant) that it is not proven and it's not the gold standard. I will certainly bring it up to him at the next office appmt and ask for him to talk to Mayo Az about it.
@2gallonhabit, may I ask where you got your kidney transplant? What were their initial response? If they were reluctant, how were you able to convince them to switch? I know that some transplant center (Emory in Atlanta)are more "flexible" to prescribe Belatacept to their patients; however, I'm not certain if Mayo Az is willing to switch him to it even if he is a good candidate. Looking forward to your response.
@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.
@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?
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