1. < Transplants

Switched from Tacrolimus to Belatacept

Posted by 2gallonhabit @2gallonhabit, Nov 20, 2023

Hi all. I'm just shy of my one year kidney transplant anniversary. At my four month appointment I asked my doctor if I'd be a candidate to switch from Tacrolimus to Belatacept (I'd done the research and knew that I was). The reason I asked was because despite Tacrolimus being the "gold standard" (combined with Mycophenolate Mofetil) for anti-rejection medications, it comes with side effects. Mine included significant GI issues, hair loss and steadily increasing blood glucose levels. Also, I was concerned with the nephrotoxic effects of the drug (ever notice that as your dosage goes up, your creatinine goes up as well?).

I started the Belatacept infusions at the beginning of July and am loving the change. My hair stopped falling out and started growing back. My blood glucose levels returned to normal. My GI issues are gone. But more importantly, I saw an 0.24 decrease in my creatinine levels and an 11 point increase in my eGFR.

Everyone's experience is different but check it out with your doctor if you're interested in learning more. I'm only 56 so I want to keep this kidney has healthy as possible for as long as possible.

Take care.

Vicki

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l0lag0lag0b3 | @l0lag0lag0b3 | Nov 21, 2023

Can you share the dosage of Tacrolimus you were taking prior to the switchover...Thanks .. I have been reading on Belatacept ..here is an NIH article ...you may have seen it.

Shared files

JPP-3-90 (JPP-3-90.pdf)

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2gallonhabit | @2gallonhabit | Nov 21, 2023

Hi @l0lag0lag0b3. I was on 3mg am/3mg pm. I was taking the generic equivalent produced by the pharmaceutical company Mayo recently informed us wasn't performing as expected (I believe while trough levels were similar, this particular generic spiked higher than others). No wonder I was having those GI issues...

In addition to being EBV-positive (per the article you posted), I think that another criteria was being CMV-negative due to potential side effects/risks.

Yes. It's a bit of a pain having to go to an infusion center once every 28 days. But the peace of mind I get knowing that I have some base level of anti-rejection medication in me at all times is priceless.

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l0lag0lag0b3 | @l0lag0lag0b3 | Nov 21, 2023

Hello 2gallonhabit
Good to Hear that things are working out well after switching to Belatacept. I do have 1 more question ( if you don't mind) Were the Lymphoctyes count ( which are part of the CBC diff blood test) better in Belatacept or Tacrolimus for the same equivalent dosage.
btw: were you by any chance taking Tacrolimus made by Accent. ( that particular brand of Tacrolimus was banned by FDA in Oct because of high toxicity levels which are unacceptable
Thanks & Best.

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1 reply
2gallonhabit | @2gallonhabit | Nov 21, 2023
In reply to @l0lag0lag0b3 "Hello 2gallonhabit Good to Hear that things are working out well after switching to Belatacept. I..." + (show)
@l0lag0lag0b3

Hello 2gallonhabit
Good to Hear that things are working out well after switching to Belatacept. I do have 1 more question ( if you don't mind) Were the Lymphoctyes count ( which are part of the CBC diff blood test) better in Belatacept or Tacrolimus for the same equivalent dosage.
btw: were you by any chance taking Tacrolimus made by Accent. ( that particular brand of Tacrolimus was banned by FDA in Oct because of high toxicity levels which are unacceptable
Thanks & Best.

Jump to this post

I was taking Tacrolimus manufactured by Accord. I received this from Mayo on 10/17/23: "According to the FDA, if you are taking the Accord product, your trough levels, which is what we measure with routine lab testing, will be unchanged and the risk of rejection is not increased. However, there could be an increased risk of side effects."

My Lymphocyte counts have remained fairly stable but i have seen an increase of about 0.15 over the past two months. Ignorant here but is that expected with Belatacept?

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1 reply
l0lag0lag0b3 | @l0lag0lag0b3 | Nov 22, 2023
In reply to @2gallonhabit "I was taking Tacrolimus manufactured by Accord. I received this from Mayo on 10/17/23: "According to..." + (show)
@2gallonhabit

I was taking Tacrolimus manufactured by Accord. I received this from Mayo on 10/17/23: "According to the FDA, if you are taking the Accord product, your trough levels, which is what we measure with routine lab testing, will be unchanged and the risk of rejection is not increased. However, there could be an increased risk of side effects."

My Lymphocyte counts have remained fairly stable but i have seen an increase of about 0.15 over the past two months. Ignorant here but is that expected with Belatacept?

Jump to this post

Yes it was Accord .. I had a typo in my mind ... 🙂
anyway Lymphocytes unit is expressed as Reference Range: 850-3900 cells/uL...
The fact that count went up .... it is a good thing...Thanks for sharing.

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amyromero | @amyromero | Nov 26, 2023

Thanks for your post about this. My husband goes in tomorrow for labwork. His symptoms are very similar to yours; the GI distress is incapacitating for him. His doctor mentioned Belatacept at one point, but I think my husband may be CMV+. Thanks for sharing this. It makes me hopeful he will feel better soon. He's 7 months post kidney tx.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 29, 2023
In reply to @amyromero "Thanks for your post about this. My husband goes in tomorrow for labwork. His symptoms are..." + (show)
@amyromero

Thanks for your post about this. My husband goes in tomorrow for labwork. His symptoms are very similar to yours; the GI distress is incapacitating for him. His doctor mentioned Belatacept at one point, but I think my husband may be CMV+. Thanks for sharing this. It makes me hopeful he will feel better soon. He's 7 months post kidney tx.

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Hi Amy, GI distress is a lot to handle. Did you and your husband learn anything from his recent labs? How is he doing? How are YOU doing?

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1 reply
jackie421blfdgurl | @jackie421blfdgurl | Dec 4, 2023
In reply to @colleenyoung "Hi Amy, GI distress is a lot to handle. Did you and your husband learn anything..." + (show)
@colleenyoung

Hi Amy, GI distress is a lot to handle. Did you and your husband learn anything from his recent labs? How is he doing? How are YOU doing?

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Hello us transplant special angels!!I did not
Know about this drug but will research. Thanks always for information. Merry Christmas to all and healthy 🎊

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yys | @yys | Aug 7 5:00pm

hello Vicki ,
thank you for sharing your experience with Bela, I had the same issue with hair loss 60% gone, gi issues, face swelling edema, and as well as creatinine goes up when dose is increased. I just started my Bela today and im excited to see how will I do with the infusion. I am 6 months post transplant.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 7 8:01pm
In reply to @yys "hello Vicki , thank you for sharing your experience with Bela, I had the same issue..." + (show)
@yys

hello Vicki ,
thank you for sharing your experience with Bela, I had the same issue with hair loss 60% gone, gi issues, face swelling edema, and as well as creatinine goes up when dose is increased. I just started my Bela today and im excited to see how will I do with the infusion. I am 6 months post transplant.

Jump to this post

Hi, @yys. I want to welcome you to Connect and to congratulate you for your 6 month milestone transplant recovery! Recovery and adjusting to new meds and developing a new normal are challenging. But we do learn together and we get over the hurdles with the support and shared experiences of other patients. I’m glad you are going to be starting your new medication today and I hope for positive results. Did your doctor give any indication for when to expect improvement? Will you be having additional labs drawn?
And what organ did you receive?

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