Antibody-mediated rejection and Belatacept

Posted by nanmargaret @nanmargaret, May 14, 2022

I'm approaching my 4yr heart transplant anniversary at the end of July. I've had chronic antibody-mediated rejection (AMR) much of that time, necessitating extra treatments. While I'm incredibly grateful and pleased to still be here, it's been a struggle as well, especially because I'm very sensitive to meds.
I'd like to connect with others who have had or currently have AMR, regardless of which organ you received. I'm just beginning to accept that this will most likely be something that stays with me over time.
Also, my doctor is going to switch my meds from the calcineurin inhibitor, Cyclosporine (which seems to be causing significant neuropathy and neuro issues) to Belatacept, a monoclonal antibody monthly infusion. Apparently, it's been used for years in kidney recipients and more recently in heart and lung. Would love to hear anyone's experience if they have been on belatacept.
Thank you for anything you care to share.
~Nancy

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Colleen Young, Connect Director | @colleenyoung | May 14, 2022

I'm tagging @charicen to make sure they see your post about antibody-mediated rejection (AMR) so they can share more about their experiences.

@lendries @ladydidehart @banksnc49 take or have taken Belatacept infusions and can share more about that.

@nanmargaret, how does AMR affect you? What helps?

nanmargaret | @nanmargaret | May 15, 2022

In reply to @colleenyoung "I'm tagging @charicen to make sure they see your post about antibody-mediated rejection (AMR) so they..." + (show)

Thank you, @colleenyoung.
The only treatments for AMR are to use more intense or different immunosuppression, depending on what grade rejection you are having.

I've most often had high dose steroid pulses for Grade 1, but if Grade 2 rejection, they use plasmapheresis, Rituximab and IVIG combo. Also, I had a six month course of monthly IVIG infusions. That's in addition to my normal regimen of daily Cyclosporine, Myfortic and prednisone. The side effects have been difficult, but my heart has not shown any significant clinical damage, thankfully. The meds have taken a toll and right now I'm less functional than I was two years post transplant.

My doctor is proposing the change to Belatacept from Cyclosporine in hopes of mitigating some of the side effects.

ladydidehart | @ladydidehart | May 16, 2022

Good morning! I received my kidney transplant in February of 2020. I take Mycophenolate daily and get a Belatacept infusion once a month. I also take 5mg of prednisone daily to supplement the infusion. I don’t have any side effects. I hope this helps and that you and your doctors find a combination of medication that works better for you.

nanmargaret | @nanmargaret | May 16, 2022

In reply to @ladydidehart "Good morning! I received my kidney transplant in February of 2020. I take Mycophenolate daily and..." + (show)

I appreciate knowing that @ladydidehart and am happy to hear you've not experienced any problems!
Where do you receive the infusion—at transplant center, infusion center or home?
Congratulations on your second anniversary!

ladydidehart | @ladydidehart | May 16, 2022

In reply to @nanmargaret "I appreciate knowing that @ladydidehart and am happy to hear you've not experienced any problems! Where..." + (show)

I receive my infusion at an infusion center located near me. It’s called Metro Infusion and they have centers nationwide.
Thank you!!

nanmargaret | @nanmargaret | May 16, 2022

Thank you!

hello1234 | @hello1234 | May 22, 2022

In reply to @ladydidehart "Good morning! I received my kidney transplant in February of 2020. I take Mycophenolate daily and..." + (show)

Hi @ladydidehart 😊 I also had my kidney transplant in 2020. My kidney transplant was on July 2020. What is your current dosage of Mycophenolate? I am currently at 500mg bid due to CMV. Also, why did the doc change you to the infusion of Belatacept? (I am having some problems with acid reflux and I wonder if the infusion process helps with stomach issues).
Thanks for sharing your experience!

ladydidehart | @ladydidehart | May 22, 2022

In reply to @hello1234 "Hi @ladydidehart 😊 I also had my kidney transplant in 2020. My kidney transplant was on..." + (show)

Good morning! I was on Belatacept from the start because my kidney function didn’t come up as quickly as they wanted it too after my transplant. I was on 500 mg of Mycophenolate for about a year and a half because of CMV too. I’m back on 750 mg now because my biopsy on March showed early signs of rejection. They were able to reverse the cellular rejection with infused and oral steroid therapy but increased my Mycophenolate to help.
It’s my understanding that Belatacept isn’t as powerful an anti rejection medication as Tach or some of the others so it isn’t the doctor’s first choice.
I hope this helps.

hello1234 | @hello1234 | May 22, 2022

In reply to @ladydidehart "Good morning! I was on Belatacept from the start because my kidney function didn’t come up..." + (show)

Thanks so much @ladydidehart 😊 Are you now taking 750mg Mycophenolate twice a day or once a day? Also, when your protocol biopsy showed early signs of cellular rejection was there any signs of rejection in your blood work like did your creatinine or BUN seem elevated? Thank you so much for sharing with me. It's so exciting to meet another 2020 kidney transplant patient to share experiences with!