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Switched from Tacrolimus to Belatacept
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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Hi my transplant team recommend it for me to try the infusion. Unfortunately it's not for me I will be going back on my original meds Rapamune and Myfortic. I believe the Myfortic is my main issue.
I am on Tacromilis- liver transplant hair loss gut issues but my transplant Dr would not change my med. I am happy to say 6 years later I am on 1mg twice a day. My hair has been stable and some came back - I guess I was lucky I had very thick hair.
Hi Vicki @2gallonhabit my Dr. is suggesting I switch to Belatacept from Tacro due my blood sugars, I’m 5 years post transplant and they have crept up. My question to you is have you had any signs of rejection (since there’s increased risk on Belatacept over Tacro) and if so mind sharing how it was treated (drugs given? in permanent or temp basis?).
Or anyone experience this?
Thanks so much,
Gen
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2 Reactions@stolson1 after transplant I had some hair loss / thinning. I was told it was temporary while my body adjusted, which it has! I can say I probably have a bit of thinning but FINE otherwise on hair. I also take biotin to support hair Dr said it was OK.
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1 Reaction@gene33 Hey there! Thanks for reaching out. I've been on Belatacept for almost three years now (hello July ;-)) and I've had no issues whatsoever. My Year1 and Year2 biopsies showed no signs of rejection (& was able to skip the Year 3 biopsy) and my creatinine/eGFR numbers have steadily improved over that time.
If you have the opportunity to switch to Belatacept - and don't mind the infusions every 28 days - I would say GO FOR IT! Good luck!
Vicki
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3 Reactions@2gallonhabit that’s amazing! Thank you for your quick reply, I hope you remain stable and with such positive labs/biopsies! So reassuring even if it’s always case x case. THANK YOU
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1 Reaction@kidney091967 Hi, would you mind saying? When you say Belatecept was not for you, what was the reason or reasons?
Hi not sure if you'll get this message but it totally made me feel
disconnected to the world.. I know it was better for my kidney and
cardiovascular but I was not able to function on it. Unfortunately I have a
reaction to all medications..
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2 ReactionsIt's really hard to know, isn't it, how we will react to different meds. I'm sorry you had difficulty. I'm just at the beginning of my journey with Tacrolimus. It's a challenge.
Best to you.
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2 Reactions@yys was your doctor a Mayo doc? How are doing o. belatacept now? Are there side effects you have noticed?