Switching to Belatacept

[Transplant2018]

Thanks to my amazing donor, I am 6 months post-transplant and my nephrologist is talking with me about switching from tacrolimus to belatacept. I have read there are more acute rejection episodes with belatacept but that it is better for the kidney long term. If you switched to belacept when did you do it and what has been your experience?

[Gardner-NY]

Curious what is the reason to go off Tacrolimus and go to Belatacept? My husband had his transplant Nov 2018 and his body shakes badly after 11am to bedtime mainly due to Tacrolimus. Maybe this is not the only medication causing this, but the primary one. Had not heard of Belatacept. thanks

[Hidden]

Hello. I am not on Belatacept but my friend was on Tac, and had to be switched to Belatacept. She has never had a rejection episode, and is doing great. She had her transplant about 3 1/2 years ago. She gets infusions once a month of Belatacept. I read it was also better long term. I take Envarsus which is a time released Tac. Hope it works for you.

[LGomez17]

Had my kidney transplant 3 years ago and had side effects with Tac. Been on monthly belatacept infusions for about 2 1/2 years with no problems at all. Hope it works just as well for you!

[Gardner-NY in reply to LGomez17]

Hi LGomez17, did the tacrolimus drug or any drug cause you to have shaking/tremors ? My husband has this to his entire body. thanks for your response. Glad you are doing so well.

[Azulwolf in reply to Gardner-NY]

Hi, had my 3rd transplant 12/2017 and about three months later began to have really bad shakes and tremors, doctors said it can be one of the side effects of Tac. Eventually they were able to lower my dosage and the shakes/tremors mostly went away. Still shake a little bit (my hands only) but not like right after transplant. I never had a problem with shakes with my first two transplants but then I was not on Tac, may not have been around then. What are your doctors saying? How long has your husband had his transplant? Hope things turn out well.

[Gardner-NY in reply to Azulwolf]

Glad you are doing well Azulwolf. My spouse had his transplant 7.5 months ago. HE inherited from his mom, familial tremors where his hands shook some for the past many years before the transplant and his nephrologists all day the shaking of hands of all body parts would worsen due to Tacrolimus and it has. My husband is retired 5 yrs now and enjoys making quilts with his own sewing machine (I do so too), but he cannot thread a needle or trust himself to cut fabrics now and I hope in time this all improves, the shaking lessens. Yesterday the shaking was really bad all day more than usual. We don't know why. He is slowly increasing his iron pill intake due to low iron stores/low hemoglobin. That is his biggest challenge the past 5 mos which has him laying/sitting on the couch countless hours in a day "no energy". HE stays in good spirits most of the time. Thanks for your support in writing me.

[JennieZ]

I have been on Belatocept since my transplant a year ago and have zero problems outside a tiny tummy upset day of infusion that goes away. It is so much easier to have it once a month for half hour than another pill. I recommend it if your dr says it is an option! My brother was a very close match and i know that is one of the criteria.

[Transplant2018]

Thanks, JennieZ. My donor's kidney was not a close match but my nephrologist thought I was a good candidate. I read a lot about Belatacept and decided it sounded much better than tacrolimus for the kidney in the long-term. Since i posted my question I did switch and have had my first two Belatacept infusions - no problem thus far!