Transplant rejection

[lorabella]

My greatest gift of a deceased donor kidney was on 8/26/23. The new kidney (his name is Guy) has been doing very well, however, I have suffered terrible side effects on Tacrolimus. So, they took me off of Tac and I started Belatacept transfusions about 6 months ago with no side effects. Unfortunately, after 2 biopsies it was determined that my body was rejecting the kidney. So, it seems the Belatacept wasn't quite doing it. I'm back on Tac at a lower dose in addition to the transfusions and waiting to have the next follow up biopsy.

Just wondering if anyone here as experienced rejection and what the course of treatment was for you?

[LibraEmpath]

Hi sweets . My name is Tamara and I’ve experienced an episode of what they’re calling “pre rejection “ it was medication induced although not my any of my ant rejection meds. I actually became quite sick and I was hospitalized for about 5 days. My transplant (Kate) took a hard hit. At the time of incident my creatinine had spiked and within the last year my creatinine finally rebounded to 1.4 and that’s a huge difference from 3.2 . My subsequent biopsies have shown she’s healing slowly. I’m sending you soft hugs.

[ashok5085]

Normally, rejection occurs due to antibodies and the common line of treatment is plasmapheresis+rituximab/other injections. Plasmapheresis removes the antibodies but you may be more prone to infections as all kinds of antibodies are removed. Your doctor will decide if you require it or not.

[Eyak1971]

Was having side affects to prednisone which many do. Mine however was avn which is slow bone death. Result hip replacement. Luckily spike in creatinine was not as severe as yours after doctor tried to take me off prednisone but my creatine levels never seem to return to lower levels but also never seem to get out of hand so far after returning to prednisone. What were the severe side effects of tacro that started this journey?

[nlee]

Hello,

I have kidney transplant 33 years ago and it still doing well. My nephrologist told me the reason why my kidney last this long (and hopefully for another 20 years) is because I am on Cyclosporin medication to prevent rejection instead of new drugs Tacrolimus. You may want to speak to your doctor about switching to Cyclosporin instead.

Take car.

[Kidtrans111088 in reply to nlee]

I just celebrated my 36th anniversary this month I was on Cyclosporine for many years. My doctor switched me to Tacrolimus about 2 years ago and I haven't had any problems. Happy 33rd Anniversary!

[WYOAnne NKF Ambassador]

I am 25+ years post transplant. I am on the "old" immunosuppressants Cyclosporin and Myfortic. I never had a rejection episode and "Ryan" my kidney is doing fantastic! Last month my creatinine was 0.9.

I do know a lot of people have had problems with side effects of Tacrolimus & have been taken off those. Talk with your doctor and see what he suggests.

[Denise-80]

Hi Iorabell - I was switched from tac to bela. I take prednisone and myfortic as well. Did you take either of these meds with the bela?

[lorabella in reply to Denise-80]

Yes, I take my for Myfortic, prednisone, belatacept and tacrolomis!

[Ynnep]

Hi Lorabell,

I will pray for you!🙏

[SOct91]

I too am curious about your Tac side effects. I’ve had my transplant 33 years and over the last year had a borderline rejection episode after holding steady all these years. Complete overhaul of my regimen. I was on MMF and prednisone but was taken off prednisone several years ago due to bone damage/osteopenia and I was only 33yrs old at the time. After biopsy showed borderline rejection all my titres were negative except 1 so they initially tried to treat me with 3 days of steroid infusions but my creatinine kept rising so they added Tacrolimus. Creatinine still rose (worse it’s been 2.76) then they did IVIG and then Rituximab. Then they started Rapamune with the Tac and took me off MMF. They hope this does the trick but it’s still a lab waiting game. I’ve headaches and GI upset with both Tac and Rapamune but esp Tac.

[Tula6]

Have you tried Envarsus, I take 1-1mg and 2 .75 in the morning. I too didn’t tolerate tac.

[ShyeLoverDoctor]

I have never experienced rejection and I’m 1 year and 5 months 13 days post transplant. I do hear that 10% of people experience rejection, but it’s treatable if caught early.

I had awful side effects from Tacrolimus and they tried me on the time-release version, envarsus, but that didn’t help at all. So now I’m on cyclosporine.

I wish I could try belatacept but I’m one of the 10% of the population who have never had EBV so I can’t have it.

Multiple studies have shown that after 5 years, people who take cyclosporin have had a decline in GFR but people on belatacept have improved GFR.

[LavenderRabbit in reply to ShyeLoverDoctor]

Why is it that people who have never had EBV can’t get Belatacept?

[ShyeLoverDoctor in reply to LavenderRabbit]

There’s a chance of developing a fatal disease, that’s all. PTLD, post-transplant lymphoproliferative disorder which can become a type of cancer! It’s always a risk but a much higher risk if you’ve never had EBV. I recommend you read up on everything related to our medicines.

[LavenderRabbit in reply to ShyeLoverDoctor]

Thanks