Liver transplant not taking medications

[Cath91457]

Type your medical question hereMy husband is a liver transplant recipient from 2003. He has stopped taking his medications. I found out he has not taken his anti-rejections medicines for at least a month. How long before this liver rejects?

[Navorio]

Hello, I wanted to find out more about how is everything going with your son.
My daughter story is very similar and doctors are considering stoping prograf because of the ptld. Any response will be appreciated.

[orphanedhawk]

I was on cellcept for 4 months, prednisone for 8 and only prograf after that.
Ask your doctor why you are still taking cellcept.
My hepatologist told me before my transplant that I would be on celllcept from 3-12 months. Too many doctors keep post tp patients on these meds for too long, in my opinion.

Good luck and yes, quality of life is important.

[Virginka]

I am on 750 mg Cellcept 2x a day, 1 mg Prograf 2x a day &  2.5 mg prednisone once a day for my kidney, which has been mine for going-on 33 years. I have been fine but pondering whether I am on too much at this stage. Or maybe this ( and compliance) is the reason that I have been able to keep my kidney for so long??!!

[SuzG]

Interesting commentary!   I was transplanted in 2010 & have had the worse time with prograf. Finally was changed to cyclosporine in 2012, also take cellcept. I admit to not taking my meds as prescribed, they make me too sick, The cyclosporine hits my stomach like a truck, at the lower dose of one 50mg 2x daily is at least better managed.
I know it's all a risk to mess with my meds, but I didn't get a transplant so I could be that sick every day!

[orphanedhawk]

Thanks for sharing your story.
I'm convinced that not everyone needs these meds. It sure would be nice to have a supportive hepatologist like yours.
Mine is great but cautious and won't support my stopping unless he sees more research proving the safety of doing so.
I suspect the pharmas don't want that to happen.

Thanks again.

[jeffforbesd]

Even before my transplant (2 years ago) I heard that some patients live normal lives after stopping medication without rejection. I was told this often occurred in Countries where the cost of the drugs was prohibitive for some patients.
I was on cyclosporine (50 mg twice daily) as I was allergic to Prograf and decided to gradually stop taking my medicine. I have been off it now for 3 months. When I told my "liver doctor" I expected a lecture but she said that I had her full support provided that I had a liver biopsy. I had that about 3 weeks ago and all was OK, so my doctor is happy for me to continue without medication provided that I have monthly blood tests.

Jeff D

[orphanedhawk]

Your doctor is very, very wrong.
All you have to do is google, weaning off immune suppression meds, to find some facts about people who have stopped.

I saw a film where a doctor/researcher at UCSF said, 20% of all liver transplants do not need to be on these drugs. They are currently doing research and it isn't easy to find out, but I know of one guy who quit them and is doing fine.