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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.

hello1234 | @hello1234 | May 26, 2022
In reply to @banksnc49 "I have been on belatacept for 7 1/2 yrs now and have had no problems at..." + (show)
@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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Hi @banksnc49 😊 I am a kidney transplant patient too. I am curious why you are taking Beletacept infusions. Were you experiencing side effects from Tacronlimis or Cyclosporine?

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Rosemary, Volunteer Mentor | @rosemarya | May 26, 2022
In reply to @hello1234 "Hi @nanmargaret 😊 Thank you so much for mentioning acid reflux and GI issues. I take..." + (show)
@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 don't intend to take this discussion off topic of have a semi-related question. You mentioned that you take both Tacrolimus and Mycophenolate. So do I, and have been doing it for 13 years with no complications. I do acknowledge that each of us is different and will react differently, but I want to ask you if what you eat for breakfast has any effect on the severity of your stomach issues that you refer to? Have you ever kept a record what you eat before meds for a period of time/ and then after you eat for another period of time? This is just an idea that popped up because I am currently keeping a record for several weeks for a different reason as suggested by the liver transplant doctor at my checkup last week. He said that this will help to identify what might be disturbing system currently.
Will you let me know what you think of this idea?

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1 reply
hello1234 | @hello1234 | May 26, 2022
In reply to @rosemarya "@hello1234, I don't intend to take this discussion off topic of have a semi-related question. You..." + (show)
@rosemarya

@hello1234, I don't intend to take this discussion off topic of have a semi-related question. You mentioned that you take both Tacrolimus and Mycophenolate. So do I, and have been doing it for 13 years with no complications. I do acknowledge that each of us is different and will react differently, but I want to ask you if what you eat for breakfast has any effect on the severity of your stomach issues that you refer to? Have you ever kept a record what you eat before meds for a period of time/ and then after you eat for another period of time? This is just an idea that popped up because I am currently keeping a record for several weeks for a different reason as suggested by the liver transplant doctor at my checkup last week. He said that this will help to identify what might be disturbing system currently.
Will you let me know what you think of this idea?

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Hi @rosemarya 😊 It's great to hear from you, as usual!! Your food journaling tip is an excellent idea. My breakfast is easy because I normally eat the same oatmeal every morning. My dinner also tends to be simple and repetitive. But every once in a while it's something different, so I will give it a try.
Thank you for sharing the idea!

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Nancy Banks | @banksnc49 | May 26, 2022
In reply to @hello1234 "Hi @banksnc49 😊 I am a kidney transplant patient too. I am curious why you are..." + (show)
@hello1234

Hi @banksnc49 😊 I am a kidney transplant patient too. I am curious why you are taking Beletacept infusions. Were you experiencing side effects from Tacronlimis or Cyclosporine?

Jump to this post

I only have 17 inches of my small intestine which should be about 22 ft. They were afraid I might not be able to absorb the pills properly. However, I also take myfortic and I have had no problem with it. I’ve been very fortunate to not have side effects from either drug.

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nanmargaret | @nanmargaret | May 26, 2022
In reply to @rosemarya "@nanmargaret, I just returned home from Mayo in Rochester for my annual checkup. So I'm a..." + (show)
@rosemarya

@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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Hello again, @rosemarya. Thanks so much for directing me to the heart transplant link! I will check it out and post there.
My cardiologist is planning to begin my first infusion of Belatacept on June 4 if all goes well with some testing. I will be speaking to my coordinator early next week to get a better understanding of what to expect.
I hope your checkup went well.

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