1. < Transplants

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

Interested in more discussions like this? Go to the Transplants Support Group.

yys | @yys | Aug 7 9:10pm

thank you for your reply @rosemarya . I am 6 month post kidney transplant. I will be having labs drawn regularly each time I have my infusion. as for when to expect improvement it ll depends on every person is different. finger crossed. wish me good luck!

REPLY
1 reply
pjpanning | @pjpanning | Aug 10 3:54pm

Hi all,
I am suppose to switch to Belatacept next Wednesday. I’m really excited because besides the headaches, hair loss and flushing face, it is the tremors, and shaky body that I find very hard to tolerate. I am so curious if anyone has had any side effects from Belatacept. I am 10 months out on my kidney transplant and labs seem to be great. My Tacro is always in range now, but tremors are getting worse.
How long after starting on Belatacept before you noticed an improvement in side effects?
Thanks for the help.

REPLY
1 reply
bobinnevada | @bobinnevada | Aug 22 10:44am

I'm 3 years into my transplant and my new nephrologists wants me to switch over to Belatacept. I'm always nervous about switching meds
My creatinine is rising a bit, 1.26 last time I was at 1.00 for a long time. Taking 1mg bid of Prograf right now.
Will be switching over sometime in Oct or Nov.
Glad to see you are doing well with it
Bob

REPLY
ehu | @ehu | Sep 6 8:24pm
In reply to @yys "thank you for your reply @rosemarya . I am 6 month post kidney transplant. I will..." + (show)
@yys

thank you for your reply @rosemarya . I am 6 month post kidney transplant. I will be having labs drawn regularly each time I have my infusion. as for when to expect improvement it ll depends on every person is different. finger crossed. wish me good luck!

Jump to this post

Hi. I’m curious, and am replying to you because I wonder if we’re in the same boat. I’m 7
months post transplant, and my eGFR is still
relatively low. My doctor has recommended switching to Belatacept. Is this the reason that you’re switching or for some other reason?

REPLY
2 replies
yys | @yys | Sep 6 9:09pm
In reply to @ehu "Hi. I’m curious, and am replying to you because I wonder if we’re in the same..." + (show)
@ehu

Hi. I’m curious, and am replying to you because I wonder if we’re in the same boat. I’m 7
months post transplant, and my eGFR is still
relatively low. My doctor has recommended switching to Belatacept. Is this the reason that you’re switching or for some other reason?

Jump to this post

hello,
I was on prograf and experienced hair loss, switched to cyclosporine but I can't tolerate the side effects so my transplant dr switched me to Belatacept. my gfr has been fluctuating with prograf and cyclosporine.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 9 7:40pm
In reply to @pjpanning "Hi all, I am suppose to switch to Belatacept next Wednesday. I’m really excited because besides..." + (show)
@pjpanning

Hi all,
I am suppose to switch to Belatacept next Wednesday. I’m really excited because besides the headaches, hair loss and flushing face, it is the tremors, and shaky body that I find very hard to tolerate. I am so curious if anyone has had any side effects from Belatacept. I am 10 months out on my kidney transplant and labs seem to be great. My Tacro is always in range now, but tremors are getting worse.
How long after starting on Belatacept before you noticed an improvement in side effects?
Thanks for the help.

Jump to this post

@pjpanning, How are you getting along? I've taken tacrolimus for 15 years for my liver and kidney transplant, so I have no experience with Belatacept. So, I'm wondering whether you began the Belatacept prescription as planned for earlier in August. Have your tacrolimus side effects eased and how are the labs reacting with the Belatacept?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 18 4:10pm
In reply to @ehu "Hi. I’m curious, and am replying to you because I wonder if we’re in the same..." + (show)
@ehu

Hi. I’m curious, and am replying to you because I wonder if we’re in the same boat. I’m 7
months post transplant, and my eGFR is still
relatively low. My doctor has recommended switching to Belatacept. Is this the reason that you’re switching or for some other reason?

Jump to this post

@ehu, a belated welcome. Did you switch to Belatacept? How are your eGFR levels? How are you doing?

REPLY
1 reply
2gallonhabit | @2gallonhabit | Sep 18 9:36pm

So it's been about 14 months since switching from Tacrolimus to Belatacept and things are going well. My eGFR is 13 points higher than it was with Tac + blood sugar is normal. Hope all are doing well. I'm back in Minnesota for my 2 year transplant anniversary in December. Life is good.

REPLY
pjpanning | @pjpanning | Sep 19 9:05am
In reply to @rosemarya "@pjpanning, How are you getting along? I've taken tacrolimus for 15 years for my liver and..." + (show)
@rosemarya

@pjpanning, How are you getting along? I've taken tacrolimus for 15 years for my liver and kidney transplant, so I have no experience with Belatacept. So, I'm wondering whether you began the Belatacept prescription as planned for earlier in August. Have your tacrolimus side effects eased and how are the labs reacting with the Belatacept?

Jump to this post

I am a week now without taking any Tacro. I feel so much better. I may have slight tremors, but so minor compared to what they were. Very hard to know on the hair loss, I think that will be a year before that is better. I still get some headaches, but that is probably just me. I noticed a huge difference in blood pressure right after I started cutting back on the Tacro. It is now back to normal. My lab numbers have always been good so that is the same. Creatinine is 1.02. I am back at Mayo for 1 year checkup mid October. I’ll let you know what they think.

REPLY
1 reply
greek03 | @greek03 | Sep 21 5:40pm
In reply to @pjpanning "I am a week now without taking any Tacro. I feel so much better. I may..." + (show)
@pjpanning

I am a week now without taking any Tacro. I feel so much better. I may have slight tremors, but so minor compared to what they were. Very hard to know on the hair loss, I think that will be a year before that is better. I still get some headaches, but that is probably just me. I noticed a huge difference in blood pressure right after I started cutting back on the Tacro. It is now back to normal. My lab numbers have always been good so that is the same. Creatinine is 1.02. I am back at Mayo for 1 year checkup mid October. I’ll let you know what they think.

Jump to this post

Glad to hear you are doing better. I had a bad experience from the Tacro. I actually had some Seizures and tremors really bad after getting out of the hospital. Had my Transplant 3 27 24. I was out of the hospital in 6 days only to return right back the very same night. The tacro just didn't seem to work for me so they switched it to Cyclosporine which has been great so far. Im post op 6 months. Still having some issues. But better than i was. I hope you're well. Just thought id share my experience with the Tacro. Blessings to you.

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