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Liver transplant not taking medications

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?
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Avatar universal
I have a liver transplant about 101/2 years and i haven't taken any medication for about 9 years after a scare with very large lifnotes one check up. I am doing really well health wise. I was told I received a perfect match after surgery. My new liver is also ten years younger then me. At the time I was 42 years old. That made my new liver only 32. Don't do anything to abuse the my new organ. And believe in something greater then myself.
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163305 tn?1333668571
Okay, so now I must come clean. I have not taken any immune suppression medication for over 10 months and am doing fine.
( This was almost 7 years after my transplant )    
   I stopped only after a very slow wean and did regular labs.  Some of us can indeed stop taking these meds but perhaps not everyone ?
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Avatar universal
I am wondering that myself. I had a liver transplant and my liver is working great. No more diabetes medication now than I had to take for over 15 years.
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29837 tn?1414534648
Two doctors, two conclusions. My transplant was Dec, 2, 2013. Just after the transplant I was on 10 mg. of Prograf a day for a couple of months or more. Slowly, after time, the doctor lowered it to 4 mg. daily. After two years I'm now at 3 mg. daily.

The interesting point here is this: The hepatologist that treated me for 13 years before my transplant saw my latest blood work of six weeks ago and he would have me on 1 mg. a day. The doctor at UCLA Medical Center that is treating me now, does not want me to take less than 3 mg. a day.

The same doctor who treated me for 13 years said I could have a glass of wine daily since my liver is in great condition.  The doctor at UCLA said not one drop of wine. Who should I or you listen to?

Magnum
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1 Comments
I too quit taking my A.R.M.'s after about a year. It's been 91/2 year and I'm doing great! I wouldn't take another drink though. I don't even like the smell of it. My drinking days are over and don't want to mess up my gift of a second chance at life. That's why I needed a liver in the first place. Do what you want but there is a lot more to life then alcohol
163305 tn?1333668571
Yes, especially so soon after your transplanted and for some people forever. But there are some who have quit taking them, the studies are out there:

http://www.upmc.com/Services/transplant/abdominal-transplants/starzl-institute/Pages/drug-weaning.aspx
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2 Comments
I have liver transplant 2008 when I was 17years of age and doctors didnt tell me complications. I now developed cancer, brain problem and I told my physician d side effects of drugs and he told me that he cannot help me. I stopped the medication last week because of anger and someone told me to start it again which I did. Am so in confusion state now. What do I do
You will dy if you not take your A.R.M. For life.... I just had a liver transplant too. My uncle had a new kidney, my cousin a new heart. Those ARM lowers your immune system so your body does not reject your new organ. The good thing about the ARM is they keep you alive, the bad it lowers your immune system which makes it easy to get a cold
16913158 tn?1452337003
i had a livertransplant at 6 months old i am now 25 its very important that you take your meds everyday when told to because your white cells can kill off your red ones it sounds scarey.... your liver could reject and you could be in serious trouble.
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163305 tn?1333668571
The research I saw said 20% of all liver transplant patients do not need immune suppression meds.
However, there are people who have stopped taking them who land up with jaundice and in the ER.

Ideally have regular labs to see how well your doing if you decide to wean off.
I tried once, my labs rose above normal and I began taking them again.

Now, over 6 years out, I'm very slowly weaning off and my labs look great.
It also helps if you stay in touch with your body, have a positive attitude, be aware and patient.

089~ if you've done great for over a year, I don't know why you wouldn't share it with your partner and doctor. My doctor knows what I'm doing, hasn't given his approval, let me know the risks, but also let me know he has patients who have stopped successfully as well as ones who've tried and failed.
He has to protect himself but once you've already done it, why not share ?

Helpful - 0
Avatar universal
hi i had my transplant in febuary this year i also want to stop my meds i was 26 at the time of the surgery so am still young and healthy my bloods have all been good so far...i want to stop the meds but dont want to go though all of the pain i went through...i was very ill i had 2 weeks tops to live and had a full liver transplant..i hate meds as i have been taking them since i was 13 for a heart problem but have since been told to stop taking them
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Avatar universal
I had my liver transplant on May 1st 2014 don't want doctors or my partner to know but i only took them the 1st month and then stopped 1year and 3 months later my blood work is fantastic will not be dictated on how to live my life never spoke to any one who was not happy would love to talk to someone!
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2 Comments
I'm very interested to hear more. I'm almost 20 years out and still on cellcept and cyclosporine. Will I be ok if I seen myself off?
hi.. liver tp 4 yrs ago stopped IS 2.5 yrs ago doing fine...katsamroo2 at gmail *******
Avatar universal
About anti rejection drugs for Liver transplant,
I stop taking them, cellcept and progarph.
about 8 1/2 years after my transplant.
and so about 4 months later my young wife,
became pregnant !
So I'm a firm believer that the drugs do suppress,
certain bodily functions.
As my surgeon told me certain Doctors and pharmaceutical companies,
are in bed together.
Although my body did except the foreign liver,
In which the drugs suppress the immune system,
So the body can except the new liver!
At any rate I'm still here and about to be a Father at youthful age of 63!
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Avatar universal
I had a liver transplant in 2002 and for the past year I quit taking my rejection meds and doing great. 12 years now and I've had no problems. Pam
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1 Comments
I too! Quit taking my meds about 91/2 years ago they were making me sick all the time. The   cellcept was also making my limfnote really large. I haven't had any problems up to this point. Don't think I will!
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
163305 tn?1333668571
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.
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1 Comments
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??!!
1915535 tn?1323466461
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!
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163305 tn?1333668571
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.
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Avatar universal
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
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163305 tn?1333668571
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.
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Avatar universal
I stopped all medication. Told my doctor who is at Vanderbilt. He told me there is only one reported case in the world that survived. It is a bunch of brainwash from the drug companies. Doc made me go to a psychiatrist. I have not been to a doctor in years and feel great. Doctors need to practice medicine and not follow protocol of drug companies wanting to get rich.
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Avatar universal
I'm post liver transplant 10 years, take .5mg Prograf twice a day.  I have skin cancer rampant all over my body, constant disfiguring surgeries.  Now the insurance company  is ******* me over on the Prograf, so I soon will be free of this drug. My blood pressure has been uncontrollable, due to the Prograf.  Thanks to Blue Cross/ Blue Shield Medicare Part D of Florida, my life will improve or end quickly.  
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163305 tn?1333668571
Yes, of course you're right.
I'm watching the research but I'm fine with taking my minimal dosage of prograf:)
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Avatar universal
I met a man at a support group meeting last week and he is 4 years post transplant. He too is taking .5 in the morning and .5  at night.
He looked wonderful and one wouldn't even know he had been so ill at one time.  
I guess I'm thinking it seems a small price to pay (having to take a minimal amount of prograf) to possibly prevent rejection of the donor liver.

Nan
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163305 tn?1333668571
My meds have slowly been reduced. At first I was on prednisone, prograf and cellcept. I was off both the pred and cellcept by 8 months. The trough level for prograf changes the further out you get from your transplant.
Seeing that .5mg is the capsule of prograf they make, I assume it's the lowest dosage possible.
It's always 12 hours apart since it doesn't have a long half life.

I pushed to get off the meds as quickly as was safely possible.
Why take more than we need ?
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Avatar universal
I just reread your post and saw you wrote .5  not 5 mg. Big difference!
That is such a small amount that I'm wondering why they think you need to stay on it.

Nancy
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