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

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

Thank you so much @ladydidehart All of your information has been super helpful to me!

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I have been on belatacept for 7 1/2 yrs now and have had no problems at all. I go once a month for the treatment. It is given through an IV. I’ve been very thankful for this drug.

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@banksnc49

I have been on belatacept for 7 1/2 yrs now and have had no problems at all. I go once a month for the treatment. It is given through an IV. I’ve been very thankful for this drug.

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I thought I would add that I receive my belatacept at an infusion center at my local hospital. I also take 750mgs of myfortic twice a day.

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Thank you @banksnc49 and
@ladydidehart and @hello1234
There are much fewer heart transplant patients who have used Belatacept, so I didn't know anyone else with experience. It's good to hear that it's been well tolerated by you--keeping my fingers crossed.
I take Myfortic, which is the enteric coated version of Mycophenolate. I was switched to that early on because of reflux and GI issues, which it's known to cause in some people. The coated version helps but I've still had some reflux, most likely from a valve issue and take either Protonix or another acid reducer.

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@nanmargaret

Thank you @banksnc49 and
@ladydidehart and @hello1234
There are much fewer heart transplant patients who have used Belatacept, so I didn't know anyone else with experience. It's good to hear that it's been well tolerated by you--keeping my fingers crossed.
I take Myfortic, which is the enteric coated version of Mycophenolate. I was switched to that early on because of reflux and GI issues, which it's known to cause in some people. The coated version helps but I've still had some reflux, most likely from a valve issue and take either Protonix or another acid reducer.

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Hi @nanmargaret 😊 Thank you so much for mentioning acid reflux and GI issues. I take Mycophenolate. (I never knew that Myfortic is a coated version of Mycophenolate!)
I would like to take Protonix but I am concerned about adding to my already elevated liver enzymes.
I take my Tacronlimis and Mycophenolate with food in hope of helping my stomach, but it doesn't seem to be working. Do you take your medications on an empty stomach or with food?

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@nanmargaret

Thank you @banksnc49 and
@ladydidehart and @hello1234
There are much fewer heart transplant patients who have used Belatacept, so I didn't know anyone else with experience. It's good to hear that it's been well tolerated by you--keeping my fingers crossed.
I take Myfortic, which is the enteric coated version of Mycophenolate. I was switched to that early on because of reflux and GI issues, which it's known to cause in some people. The coated version helps but I've still had some reflux, most likely from a valve issue and take either Protonix or another acid reducer.

Jump to this post

I guess I missed that you had a heart transplant. I had a kidney transplant. I don’t know if that makes a difference. Best wishes on your journey.

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@hello1234

Hi @nanmargaret 😊 Thank you so much for mentioning acid reflux and GI issues. I take Mycophenolate. (I never knew that Myfortic is a coated version of Mycophenolate!)
I would like to take Protonix but I am concerned about adding to my already elevated liver enzymes.
I take my Tacronlimis and Mycophenolate with food in hope of helping my stomach, but it doesn't seem to be working. Do you take your medications on an empty stomach or with food?

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(@hello1234) I have always taken my meds with food. Hope you can get some relief soon!
-Nancy

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@banksnc49

I guess I missed that you had a heart transplant. I had a kidney transplant. I don’t know if that makes a difference. Best wishes on your journey.

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Hi @banksnc49, it seems that using it in heart patients is less prevalent. Hope it result in fewer side effects than Cyclosporine and keep rejection away.
From what I've read it is quite effective in kidney.
(Just noticed we're both Nancy's, and NBs as well!)

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@nanmargaret

Hi @banksnc49, it seems that using it in heart patients is less prevalent. Hope it result in fewer side effects than Cyclosporine and keep rejection away.
From what I've read it is quite effective in kidney.
(Just noticed we're both Nancy's, and NBs as well!)

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😉😉😉

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@nanmargaret,
I just returned home from Mayo in Rochester for my annual checkup. So I'm a bit late in responding. I hope that you will soon get relief from your side effects, and begin to return to a more active lifestyle that you had previously enjoyed.
I am a liver and kidney recipient, and my own experience does not include the questions that you have presented. And so, I'm sharing a link to a discussion that might giver you a place that might reach a bigger audience of heart transplant members. Please don't be deceived by the title because these patients are sharing their 'post transplant experiences. I invite you to take a look, read, and to ask your question about antibody-mediated rejection and Belatacept

Transplants > Preparing for a heart transplant
https://connect.mayoclinic.org/discussion/preparing-for-a-heart-transplant/

@nanmargaret, When will you be in contact with your doctor again? And when will he make the decision about the medication change?

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