Belatacept infusions for immunosupression

[Bird_watcher]

Have any of you taken Belatacept infusions?

[Hidden]

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 Hidden]

I was concerned about the side effects & if my husband would feel worse on the Belatacept than he does on Tacrilomus.

[Hidden 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 Hidden]

What other medications are you on?

[Hidden in reply to LisaSnow]

Myfortic is the other immune suppressant.

[LisaSnow in reply to Hidden]

Thank you. Are you still taking Prednisone?

[Hidden in reply to LisaSnow]

No. No pred. Other meds are for hypertension, diabetes, high cholesterol and hypothyroidism.

[LisaSnow in reply to Hidden]

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.

[Hidden 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.

[Trident6656]

I had tremors on Tacrolimus so I was switched to Belatacept about 18 months ago.

[Bird_watcher in reply to Trident6656]

Did the tremors improve, and do you feel better on the Belatacept?

[LisaSnow in reply to Bird_watcher]

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?

[Bird_watcher in reply to LisaSnow]

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.

[LisaSnow in reply to Bird_watcher]

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.

[Bird_watcher in reply to LisaSnow]

Thank you for your advice. It is appreciated ☺️

[Transplant2018]

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.

[Bird_watcher in reply to Transplant2018]

Thank you! That is encouraging!

[Randy1805 in reply to Bird_watcher]

It doesn't make me sick or tired, I feel better.beware of sun exposure

[Bird_watcher in reply to Randy1805]

That’s good to know😉

[LisaSnow in reply to Transplant2018]

What other medications are you on?

[Transplant2018 in reply to LisaSnow]

Myfortic and prednisone

[LisaSnow in reply to Transplant2018]

Thanks! I heard there are several "pairing options". Hoping the others will answer also.

[LavenderRabbit]

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.

[LisaSnow in reply to LavenderRabbit]

What other medications are you on?

[LavenderRabbit in reply to LisaSnow]

Celcept, prednisone, and tacrolimus, but the last one will drop off at the one year mark.

[Randy1805]

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

[Bird_watcher]

Wow the skin cancer is troubling! Must be diligent with protection! Thanks.