Have any of you taken Belatacept infusions?
Belatacept infusions for immunosupression - Kidney Transplant
Belatacept infusions for immunosupression
Written by
Bird_watcher
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27 Replies
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Yes, I developed an allergic reaction to tacrilomus and have been on Bella since my transplant 8 months back. Did you want to know anything in particular about it ?
Bird_watcher in reply to
I was concerned about the side effects & if my husband would feel worse on the Belatacept than he does on Tacrilomus.
in reply to Bird_watcher
Ok. Just feel very tired after the infusion. Otherwise no discernible changes in blood work. But I’ve not had tac at all. But have had all other kinds - chemo, imuran , cellcept - and think the reactions are more or less the same. Hope that helps.
LisaSnow in reply to
What other medications are you on?
in reply to LisaSnow
Myfortic is the other immune suppressant.
LisaSnow in reply to
Thank you. Are you still taking Prednisone?
in reply to LisaSnow
No. No pred. Other meds are for hypertension, diabetes, high cholesterol and hypothyroidism.
LisaSnow in reply to
You must be followed by a steroid-free protocol center. Many centers in the USA do not remove steroids especially within the first few years.
in reply to LisaSnow
Perhaps. But I suffered from an immune system disorder which has been under remission since 2017. From 2004-2014 I was on steroids and chemo and on ritux for 3 years. Plus have a history of aggressive side effects with oral steroids. Perhaps that’s why.
I had tremors on Tacrolimus so I was switched to Belatacept about 18 months ago.
Did the tremors improve, and do you feel better on the Belatacept?
I believe tremor is an unique side effect to tacrolimus and only at high doses. What other tacrolimus associated side effects are bothering your husband?
He has had numbness/tingling in hands & feet. Nausea/vomiting, constipation, diarrhea, tremor. Has been living with it but since he has antibodies to EBV his doctor thinks Belatacept would be a better choice since Tacrolimus seems to cause hardening of the arteries (in the kidneys & heart). We are just concerned about the chance of developing cancer, PTLD or PML. I guess it’s a risk with either drug.
Cancer is indeed a risk with all immunosuppressive meds. My take is that in the absence of better long term data go with a drug combo that prolongs the life of the transplant while maximizing quality of life for the recipient. It may take a little time to settle on the best meds but worth the effort.
Thank you for your advice. It is appreciated ☺️
I switched to Belatacept six months after my tx because it appears to be better long-term for the kidney than tacrolimus. That was two years ago; my creatinine levels have remained stable (hope that continues!) and I haven't noticed any side effects.
Thank you! That is encouraging!
It doesn't make me sick or tired, I feel better.beware of sun exposure
That’s good to know😉
What other medications are you on?
Myfortic and prednisone
Thanks! I heard there are several "pairing options". Hoping the others will answer also.
I’m on belatacept. Have been from the start. (That’s only from March of this year) I have had no side effects that I have noticed.
What other medications are you on?
Celcept, prednisone, and tacrolimus, but the last one will drop off at the one year mark.
Yes have been on Bella for 7 yrs. Stay out of sun or wear protection. I go to dermatologist every 6mo.always have small lesions to be removed. I am recovering from cancer on lip ,they removed my entire upper lip going thru reconstruction surgery now ,have had 1 surgery 2 more to go.any immune supresent drug has side effects.some worse then others
Wow the skin cancer is troubling! Must be diligent with protection! Thanks.
