Anti-Rejection Drugs

[RUKIDNEYME]

I am excited to join this community where us kidney transplant recipients are able to discuss the problems and frustrations that we encountered. I believe the dialysis doctors nor any doctors (at least in my experience) do not help you to cope with the trauma which we go thru. Currently, I am working on my second kidney transplant as the one I have now is currently failing. I have a GFR of 17 and creatinine of 3.3 ,I am on the deceased transplant list at Emory and I am headed down to the Medical University of South Carolina on May 7th to be evaluated for their deceased transplant list. I am also trying to find a living donor, which I have spent about 400.00 dollars on Facebook promoting my page. My first transplant came from my Father in 1999 and about 20 years later there is progressive scarring in the glomeruli of the this transplanted kidney. I have PRA level sitting at zero so I do not think this a due to antibodies but more to the use of Calcineurin inhibitors like prograf as the type of scarring is consistent in what you see in a chronic nephrotoxicity from drugs such as cyclosporine and prograf. Belacept aka NULOJIX is on the market but I have only encountered it in use at Emory but is on a shortage right now from the hurricane in Puerto Rico. I am hoping to be able to be placed on this drug so that with my new kidney I will not be in the same situation I am in now with the use of prograf. Has anyone in the group know where else they are using to Belacept so that I may explore my options on being worked up at different universities?

[MelaMel]

Me too!

[KevM1]

I am a recent transplant recipient, my received kidney hated prograf. my primary transplant doctor took me off of prograf after two months, switched me to a drug named Envarsus. I felt a lot better and my creatinine finally went down to acceptable levels. Everything you google about prograf is horrific. Very few positives.

[RUKIDNEYME in reply to KevM1]

I am going ask MUSC and Emory about this drug Envarsus, this is the first time I have heard about this drug and I would be interested in finding out more about it .

[RUKIDNEYME in reply to KevM1]

I just googled Envarsus and this drug is generic for prograf but just a extended release of it.

[KevM1 in reply to RUKIDNEYME]

Extended release is much easier on kidney. Your levels dont rise and fall so dramatically thru day. Envarsus is smooth. Drug named Prograf is opposite. Bumpy. Erratic. Good luck getting what you need for improvement, i am rooting for you!

[kidneytransplan]

My doctor switched me from prograf to envarsus about 2 weeks ago.I had to insist she do something due to the horrible side effects of prograf, primarily continued hair loss! I was also experiencing a constant low white cell count. After 2 weeks my hair has stopped falling out and I actually had my hair stylist cut, color and cut my hair yesterday. It had been 7 1/2 months since I was able to do this. My white cell count has gone from 2.3 to 5.1. What a change.

I had my transplant was 7 1/2 months ago !