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 | Apr 14 11:37am

In reply to @kidney091967 "May I ask how much Myfortic your taking" + (show)

It is actually Cellcept and I now take 750 mg total - 500 mg and 250 mg pm.

kidney091967 | @kidney091967 | Apr 14 3:10pm

In reply to @pjpanning "It is actually Cellcept and I now take 750 mg total - 500 mg and 250..." + (show)

well im glad you can tolerate your meds and your doing well, Im only taking 180mg Myfortic am and 180 pm makes me so dizzy with blurred vision.

kidney091967 | @kidney091967 | Apr 14 3:16pm

Hi im glad your doing great, Today is 16 years for me, I just started Belatacept 2 weeks ago going for my second infusion tomorrow. Don't feel great with the change but I owe it to myself to try one more infusion. The Myfortic I take along with the infusion is making me feel dizzy with blurred vision. Hopefully my body will adjust.

pjpanning | @pjpanning | Apr 14 3:47pm

In reply to @kidney091967 "Hi im glad your doing great, Today is 16 years for me, I just started Belatacept..." + (show)

I’m so sorry to hear this. Hopefully you can adjust to the Belatacept. The side effects from these drugs can be tough. Hang in there, you will figure it out.

my44 | @my44 | Apr 14 8:37pm

In reply to @kidney091967 "Hi im glad your doing great, Today is 16 years for me, I just started Belatacept..." + (show)

@kidney091967, Congratulations on 16 years! Sorry that you've been experiencing dizziness and blurred vision since you started the Belatacept. Hopefully those side effects are temporary and will be resolved sooner rather than later. Were you switched from Tacrolimus to Belatacept? If so, why did your docs make the change? Wishing you well.

kidney091967 | @kidney091967 | Apr 14 9:13pm

In reply to @my44 "@kidney091967, Congratulations on 16 years! Sorry that you've been experiencing dizziness and blurred vision since you..." + (show)

Hello I was on Rapamune and Myfortic for the entire 16 years, last 5 years just don't feel great so I wanted to try the Belatacept. Myfortic I believe has been my issue.

my44 | @my44 | Apr 14 10:49pm

In reply to @kidney091967 "Hello I was on Rapamune and Myfortic for the entire 16 years, last 5 years just..." + (show)

Hi, @kidney091967. Aside from the dizziness and blurred vision, do you feel better overall on the Belatacept versus the Rapamune? Or is it too soon to tell?

kidney091967 | @kidney091967 | Apr 14 11:26pm

In reply to @my44 "Hi, @kidney091967. Aside from the dizziness and blurred vision, do you feel better overall on the..." + (show)

Aside from bloating and leg swelling I felt good on Rapamune. Belatacept took those symptoms away. I believe myfortic is the one that is causing my issues. Rapamune has anti inflammatory properties which I feel helped me

my44 | @my44 | Apr 14 11:45pm

In reply to @kidney091967 "Aside from bloating and leg swelling I felt good on Rapamune. Belatacept took those symptoms away...." + (show)

@kidney091967, sorry, I do see where you said that. So, was the Myfortic always causing you dizziness and blurred vision, even when you were on the Rapamune,? Or are these new side effects based on taking Myfortic with the Belatacept? I know that drug interactions can be an issue sometimes. It can be complicated.