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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my44 | @my44 | Apr 15 12:38am

In reply to @kidney091967 "Yes myfortic has been horrible for me since transplant but has been much worse in the..." + (show)

@kidney091967, I wonder if you would do better on Cellcept instead of the Myfortic. You could check with your docs if you haven't already had that discussion. It's interesting how different we all are. Somebody can do well on a certain drug that's disastrous for somebody else. How we respond to a particular drug is usually also dependent on what other drugs we take and the medical conditions we're dealing with. It's a delicate balancing act and often trial and error. Anyway, I'm hoping for a quick resolution to the side effects you're currently dealing with.

kidney091967 | @kidney091967 | Apr 15 4:26am

In reply to @my44 "@kidney091967, I wonder if you would do better on Cellcept instead of the Myfortic. You could..." + (show)

Thank you! I have been very sensitive to all medications. It's nice to talk with someone other than a Doctor. Other people's stories can be helpful. I may look into cellcept.

my44 | @my44 | Apr 15 11:30am

In reply to @kidney091967 "Thank you! I have been very sensitive to all medications. It's nice to talk with someone..." + (show)

@kidney091967, I'm not very sensitive to most medications, but a lot of people here on Mayo Connect are. So, you are not alone. I'm a firm believer that we can learn and get so much from others who have similar experiences to what we experience. If you end up going on Cellcept, let us know how you do with it. I've been on it since my transplant (16 months ago), with no major side effects so far, but that might not be your experience. All the best to you as you and your docs try to figure this out and get you some relief.

kidney091967 | @kidney091967 | Apr 15 12:06pm

In reply to @my44 "@kidney091967, I'm not very sensitive to most medications, but a lot of people here on Mayo..." + (show)

Thank you. It's definitely helpful to talk to others and hear their stories... Thanks again and wish you the best of luck as well.

my44 | @my44 | Apr 15 12:12pm

In reply to @kidney091967 "Thank you. It's definitely helpful to talk to others and hear their stories... Thanks again and..." + (show)

Thanks, @kidney091967. Good talking to you. Stay safe and stay well.

kidney091967 | @kidney091967 | Apr 15 1:04pm

In reply to @my44 "Thanks, @kidney091967. Good talking to you. Stay safe and stay well." + (show)

Same to you!

my44 | @my44 | Apr 15 1:20pm

In reply to @kidney091967 "Same to you!" + (show)

Thanks.

kidney091967 | @kidney091967 | Apr 16 8:31am

Good Morning
May I ask what is your dose of Belatacept? I believe my dose is too high based on my body weight. probably why im having all the side affects.