Medication immediately post cadaver transplant

[ashok5085]

I would request those who had a cadaver transplant to share what medicine and dosage you were put on immediately post transplant till kidney started functioning and how long your transplant is working.There are different protocols for different hospitals. Please share.

[Darlenia]

My hubby received a deceased donor kidney. We agreed to consider kidneys with fixable issues and so that's what he received - not a perfect kidney nor a perfect match, but workable. The kidney worked immediately, even though it had been kept on a pump for a long time. My hubby was put on very high doses (don't remember the exact amounts) of tacrolimus, mycophenolate, and prednisone and these were slowly lowered over time to maintenance dosages. Because the donor had health conditions at the time of death, my hubby also received antifungal meds among others. These were also were reduced and eventually stopped. As far as immunosuppressants are concerned, I suspect the dosages prescribed may be determined by the match, signs of possible rejection, etc. But I'm not sure of that. We simply trusted the experts. My hubby is doing very well with his transplant - we're looking for to celebrating the 3rd year milestone with it in June.

Here's a nice link with explaining the protocols largely followed by most transplant centers: kidney.org/atoz/content/you...

[ashok5085 in reply to Darlenia]

Good to hear you Darlenia. Did the creatinine immediately reach normal level post transplant? What was donor age?

[Parkerbarker in reply to ashok5085]

Mibe situation was exactly like darlenia,same meds sames antivirals.however one month in found out tacrolimus was causibg toxicity to my kidney so switched to one month iv injection of beltacept,nuch better and less side effects,creatine dropped to just over high normal which i take as a wib witg my comprimised donor kidney(it was a 50 functioning donor. Also it took a few days to "wake up" had to be dialysized once post op 3 days ,they it slowly kicked in but tacro was effecting it which we didnt kbow at first .

[ashok5085 in reply to Parkerbarker]

How much does belatacept cost per month? Didn't you try sirolimus or everolimus?

[Parkerbarker in reply to ashok5085]

Nope dr requested the bela as i have ibs too and oral drugs reaking havic with my guts first 2 months.Im lucky to live in canada and our healthcare covers everything.U pay nothing for procedures,bloodwork or meds as kidney patients have special exemption to not pay for any meds cr

Related to kidney things.Thank god or i'd be 3million dollars in debt with rhe ceap ive fone theu since my 2022 transplant.

[Darlenia in reply to ashok5085]

The donor's age was 45 and he was also found already deceased. These factors also contributed to the kidney being a bit risky along with the donor's health - the fungal infection, etc. But they placed it on the pump, cleaned it up, etc. We're very grateful to the donor for donating his body prior to his death and also to the transplant center for considering it a viable kidney afterwards. My hubby's creatinine dropped immediately. It was awesome to see. The creatinine report was graphically illustrated - line swooping downward - on a big computer screen with medical staff huddled around it. They were all very pleased. Our nurse told us she loved see that happening - it always made her day. I believe hubby's creatinine dropped to around 1.3 almost immediately. Today, it remains stable around 1.7. They're fine with it - it wasn't a perfect kidney.

[WYOAnne NKF Ambassador]

I had my transplant from a deceased 16 year old donor back in October of 1999. So that means it was 24+ years ago. My creatinine has been stable at 0.9. I still take the same dose of Neoral (Cyclosporine) 75 mg twice daily and Myfortic (Mycophenolate) 360 mg twice daily. I had my transplant at the U of WI in Madison.

[ashok5085 in reply to WYOAnne]

Great, is the transplant still running well? Any side effects from neoral?

[WYOAnne NKF Ambassador in reply to ashok5085]

Transplant is still doing well. Last labs the end of December showed 0.9 creatinine and I believe my eGFR was 90. That first year after the surgery I had a lot of issues with Mycophenolate causing diarrhea. Found if I took name brand rather than generic my symptoms got better. Guess generic is just a little bit different.

[ashok5085]

Great!

[Vius]

I wrote up my post kidney+liver transplant drug regimen from Stanford here: dairbook.com/stories/mark-2...

and described it a bit more 'narratively' in the book: amazon.com/DAIR-Discern-Acc...

Probably the strangest aspect for many people is that the drug dosage can be very dynamic: they don't know how a particular drug works with a particular patient, so they tune in the dosages (e.g. for Tacrolimus/Prograph) depending on the test results that show how much of the drug in in the blood stream / body. For my tacrolimus, they thought they were too low, then went too high, and then went back down all over a couple weeks (four blood draws).

Drug regimen

[WYOAnne NKF Ambassador]

I am 24_+ years post transplant. My HERO was a 16 year old deceased donor. He matched 4/6 antigens. Since I had my transplant back in 1999, I was put on Cyclosporine and Mycopheolate and of course prednisone. I continue to this day take Name brand Neoral and Myfortic. About 5 years out...I was able to stop the steroids. So, I take 75 mg of Neoral twice daily and take 360 mg of Myfortic also twice a day. I am doing great! I am due for labs the end of this month, but the end of December my creatinine was 0.9 with a eGFR of 90.

[ashok5085]

Can you stop steroids completely without any adverse effects?