My doctor is switching me to Belatacept. It will be an infusion. I’m presently on tacrolimus. They think my numbers will improve a lot and that it will be a better fit for me. They told me that there is a process to go through. So I must have a kidney biopsy and that helps determine the amount of Belatacept that is given.
What do any of you know about this medication? Much appreciated and Happy Holidays to everyone. Best wishes for a healthy 2024.
I was put on Belatacept from the start. I did not have a kidney biopsy though. I also was on Tacrolimus. I was so glad to get off the Tacrolimus. At my center they taper you off of it at nine months.
I have had no problems with it. I see no side effects. I do have to go once a month to get it and it is a 30 minute infusion.
Thank you so much! That really sounds like a better deal than the tacrolimus. I hope that this works for me. It would be a great Christmas present. 😊 Happy Holidays!
You'll find several prior posts about Belatacept. I switched to Belatacept a few years ago because it should be better long-term for the kidney. I've had no side effects - just need to get the infusion every 28 days.
Hi there,the belatacept much better,the tacro was poisoning my kidney and by the time they did biopsy it had damaged 10% of my kidney.The beltacept has been great basically zero side effects.I go for once a month infusions which only takes like 30 minutes.Not sure what you team talking about needing the biopsy to figure out dose as it goes by your weight.Just make sure when they transitioning that they dont keep you on tacro along with bela too long as they did mine over a 2 month cause i was then on 4 anti rejections instead of 3 whch lowered my immune system so much I got an active case of CMV which made me very sick and am still trying to kick.
I was on tacrolimus for three years -- over 90 blood draws. Only 12 were in the target range. Due to my numbers being so erratic, they switched me. I did have a biopsy first to see if there was any rejection going on at the cellular level, which there wasn't. But it showed that the kidney was more damaged initially than they realized, which explains why my numbers weren't a whole lot better post-transplant than they had been pre-transplant. They have slowly improved since switching, with my creatinine dropping almost a full point, but it's still well above the normal range.I've been on the belatacept for a little over a year now and the only side effect I have is some fatigue after the infusion. However, that may be due to the traffic I have to navigate going to and coming home! It's only 20 miles to my center, but the commute takes 45 minutes to an hour, almost entirely on freeways, and not during the official rush hours. Oh well.
Best wishes to you!
I’m curious what caused y’all to switch from Tacrolimus? Were your labs not up to par? My labs are great but something causes me pain all the time. Wondering if it is the Tacrolimus. Have asked about switching but was told the infusion is so expensive that insurance sometimes quits covering it down the road
They believe there will be less side effects as well as my numbers will improve. Hopefully this works. As far as insurance, I hope that works out too. So far everything has been great with the insurance.
I had a person just recently....very young....that had cancer in her brain and they were waiting so that they can go through the front vs. the back because going through the back would cause her to be paralyzed. She wore a shirt that said YOLO. I asked what that meant (I'm old...don't know all these abbreviations ) and she said "you only live once" - so I'm going to try and use that philosophy too and do what they recommend to keep life with my wife and family a priority.
Have a very happy holidays and thanks for your reply.
I am in the same situation as you. At one year after my transplant, my creatine was in the normal range. Now, at 25 months post, my creatinine is 2.2, with an eGFR of 31. My review of the studies and corresponding with one of the authors of one of the larger series suggest that the eGFR can increase 8 to 10 ml/min by a year after the conversion.
I’ve gotten my first infusion with no problems!
Good luck!
Belatacept infusion while traveling.
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