Any advice or research on switching from cyclosporine to tacrolimus

[Rheap123]

I am 30 years post transplant with creatinine of .8 and Allosure steadily increasing to .68 last month. My new transplant doctor wants to switch me from cyclo to tacro and wants my input. I am really torn. I would like to read and research some more on the topic. Please share advice or information . Thanks

[Hidden]

Howdy...I've been on TAC since day 1 (e.g Sept 2020). Of course, they're always adjusting it. As a layperson, I have no idea the differences associated with the two drugs.

Sorry to hear your rising trend in Allsoure. I thought anything under 1 was o.k. Yes! On the other hand, my nurse said they look for trends. I just had my first Allsoure register at .34. I asked, why they decided to do the test after 1 year? Was it because of something in my labs? My baseline creatinine is 1.2 from a living donor transplant. However, I had a couple of readings in July/August of 1.4 with the BK Virus. Last labs were returned to normal creatinine and undectable levels of BK. They said, it was just routine since I'm, In all likelihood, not a great candidate for a biopsy. I had a robotic transplant/nephrectomy and my new kidney sits inside my peritoneal cavity. In other words, there's really no way to stop any bleeding from the biopsy (e.g. no way to apply pressure).

I tell, they didn't call me for over a week, so I was scared to death I head some sort of rejection. And, I wasn't terribly happy with the .34 as it's on the right hand side of the curve. Yet again, I'm not a doctor. But, my DSA returned negative so I felt a little better.

Sorry for rambling, but this was the first time I every heard anyone talk of Allsosure.

Best wishes with TAC On the one hand, if you trust your doctors, then tend toward what they recommend. On the other hand, you also need to advocate for yourself. 😀

Oh! Big congrats on 30 years of transplant. Cool!

[LisaSnow in reply to Hidden]

Allosure is helpful when you monitor the number longitudinally. Everyone will have a different baseline number because the statistics they use to calculate your probability is done using SNPs' average frequencied from a large number of "people" against your SNPS, but they are not your donor. So by having repeated measurements doctors can pick up any changes that may signal a warning sign. In your case of "not easily biopsy" this tool can be very helpful and is appropriate.

[LisaSnow]

Hi Rheap123, Tacrolimus has very similar pharmacology to cyclosporine so if you did so well on cyclosporine you are likely to respond well to Tacrolimus too. Tacrolimus is actually the "next generation" cyclosporine that is shown to be equally efficacious with fewer side effects. The reason you weren't told to change before was probably because you did so well on the old drug, so why change it? Since you have a new doctor it is reasonable for them to want to switch you to something they think better. It isn't anything to be scared about. Just talk to them and ask lots of questions.

[WYOAnne NKF Ambassador]

I am 22 years post transplant next month. I am also on cyclosporine. I know my nephrologist doesn't want to "fool with success". I guess back in the 90's transplant centers put you on cyclosporine for one of your immunosuppressants. Now Tacrolimus is the drug of choice - or as my doctor says, ..."the next generation of cyclo..."I have no idea of my Allosure score since it has never been done.

I would talk with your nephrologist about this change in meds and tell him you have doubts. I think different doctors want to use drugs they are more familiar with and had the most success with. But, remember...it is still your choice.

[JackN]

My doctor has mentioned being switched from tacrolimus to something that starts with 'r' (sorry) because tacrolimus is, ironically, nephrotoxic and has caused low grade diabetes type 2 which is for now easily controlled. But he's reluctant to switch as well as my creatinine is fine.

[Hidden in reply to JackN]

I’m on TAC & myfortic and my A1C has steadily crept up to nearly diabetic range at 6.3. I’m not on an steroid and never have been diabetic. Could tac cause this? For the most part, I eat very few bad carbs.

[JackN in reply to Hidden]

Yes, tacrolimus can cause type 2 diabetes. My A1C is similar to yours.

[LisaSnow in reply to Hidden]

Has your weight increased? The thing is, transplant patients have a increased risk of diabetes regardless the medication they are on. Some med may show higher risk nut not in everyone. It is hard to tease apart what causes what because many metabolic parameters changed after the body received a super efficient "renal system".

[LisaSnow in reply to JackN]

Most drugs can be nephrotoxic and worsen liver function including Cellcept, Cyclosporine, and Tacrolimus. Because all medications get to be filtered and secreted by these key organs.The good news is that risk takes place only if the drug concentration gets too high without proper monitoring. Under proper care (good doctor and regular blood tests) the risks are low.

[Rheap123]

Because of prednisone I was diagnosed with diabetes a few years after transplant. I was on insulin for 25 years. Two years ago, I began a very low carb diet and no longer take insulin. I would hate to add a new Med that would make it more difficult to control my glucose level. I am going to continue to talk to the transplant team and discuss all options. Thank you all for the different input.

[wind00]

I was switched to Envarsus (Tacrolimus) two years ago after 20 years on Cyclosporine. I think the change was recommended because I had some kind of"flair" that caused a creatinine increase. Since the change my creatinine has been fairly stable and I've had no other issues including no side effects. Overall a positive experience and seems like a safe alternative.

[Gardner-NY]

Hello Rheap123, My spouse of over 40 yrs has been on Tacrolimus since his transplant late Nov 2018. The only issue he has being on it as a side effect that we have not seen improve at all is the body tremors he has 24/7. Some times of the day they are more noticeable than at other times. His dr. told him before he was discharged from hospital after the surgery about it when he noticed my spouse had 'famialial tremors' inherited from his mom in his hands mostly. The surgeon said this would worsen being on Tac and it has. From my research on antirejection meds, this med is a very good one for how it protects against rejection. The normal creatinine for my spouse is 1.7 to 2.0. I wish you the best.