Switched from Tacrolimus to Belatacept

Posted by 2gallonhabit @2gallonhabit, Nov 20, 2023

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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pjpanning | @pjpanning | Sep 21, 2024

Thanks for sharing your experiences with me. So glad to hear you are doing better.
The drugs can be pretty tough on some people and seem just fine for others.
Congratulations- you are almost 6 months!!

ehu | @ehu | Sep 21, 2024

In reply to @colleenyoung "@ehu, a belated welcome. Did you switch to Belatacept? How are your eGFR levels? How are..." + (show)

Hi. I haven’t switched to Belatacept yet because I’ve read that you have to be ebv positive, and I’m not. My egfr is not that great. I’m hoping that there’s some way to increase my egfr.

ehu | @ehu | Sep 21, 2024

My doctor has advised me to switch from Tacrolimus to Belatacept, but I’m not Epstein Barr virus positive. I’ve been reading that I should not take Belatacept if I’ve never been exposed to EBV. Has anyone been taking Belatacept without having tested positive for EBV? If so, what is your experience?

pjpanning | @pjpanning | Sep 22, 2024

In reply to @ehu "Hi. I haven’t switched to Belatacept yet because I’ve read that you have to be ebv..." + (show)

My donor and I were both EBV positive. My latest EGFR was 59.7.
I feel good about that. Highest it has been in over 20 years.

Colleen Young, Connect Director | @colleenyoung | Sep 27, 2024

In reply to @ehu "My doctor has advised me to switch from Tacrolimus to Belatacept, but I’m not Epstein Barr..." + (show)

@ehu, good for you for researching and advocating. I think you're asking the right questions and should ask your transplant team about switching if you are not Epstein Barr positive. I'd be interested in hearing what you learn.

Rosemary, Volunteer Mentor | @rosemarya | Sep 29, 2024

I'm doing well on Tacrolimus, and the doseage have been adjusted over the years (15) since my liver /kidney transplant. One thing that I have experienced and would like to share is that anytime there is a change in my dosage, there is always a repeat(s) of my labs and Tacrolomus level to be sure that everything is okay.
I am followed locally and also by the Mayo Transplant dept, and I not sure if all doctors or transplant teams follow patients as closely as Mayo does. So I just want to suggest, that you inquire about how any new medication or dosage adjustment will be monitored. I hope this is helpful in decision about switching medications.

amkaplin | @amkaplin | Oct 4, 2024

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.

kidney091967 | @kidney091967 | Apr 13 7:27pm

In reply to @pjpanning "Hi all, I am suppose to switch to Belatacept next Wednesday. I’m really excited because besides..." + (show)

Hi how are you doing on Belatacept? It’s giving me blurred vision and dizziness.

pjpanning | @pjpanning | Apr 14 6:38am

In reply to @kidney091967 "Hi how are you doing on Belatacept? It’s giving me blurred vision and dizziness." + (show)

I feel like I am doing well. I feel so much better than I was feeling on Tacro. I have not experienced blurred vision or dizziness. I am so happy to be rid of the side effects I was having with Tacro.
I have had a problem with Thrush, but don’t know that that has anything to do with Belatacept. They lowered my Mycophenolate.
Good luck to you.