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?

[glair]

I'm hoping to get a transplant within the next year or so. I didn't realize you have to take the anti rejection medicine for that long (8 years?) Was his a special case?

[752016]

I got a liver, my uncle a kidney, and cousin a heart transplant. you have to be on Anti Rejection Medications for the rest of your life or your immune system gets stronger and your body will reject that organ. The good thing about A.R.M. Is they keep you alive, the bad is that it drops your immune system down making it easier to catch colds

[orphanedhawk]

Okay. I had a transplant in 2009.
Many doctors will tell you that you will take immune suppression medication for life. However, research has shown some people can get off of them. In fact one researcher claims 20% of all liver transplants recipients don't need the meds at all. Studies are currently underway.

My hepatologist told me, that some people can stop taking them after about 5 years. The theory is that your stem cells replace the ones in the donor liver actually making it your own.
However, some people do need to remain on meds for life.

[kalebshane]

I'm new to this website and saw these posts about the anti rejection meds.  I  had my liver transplant 10 years ago. My anniversary date will be on April 18. I am interested in knowing more about not having to take the meds and also how everyone is doing today with their transplants.

[IAmTheWalrus]

Like OH said, there has been some study indicating that some (emphasis on some) patients will do alright with no anti rejection medications, but I don't think doctors are suggesting that to anyone now. I get the impression that the only way to tell for sure is to stop and see what happens. Sounds too risky for me. I think the conventional wisdom for now is to stay on the drugs, bad as they can be.

[wendynichols]

My son had a liver transplant on August 6th, 1991, when he was a year old. At age 11 he was diagnosed with PTLD. He had gotten the Epstein Barr virus(MONO) and because he was on anti-rejection medicine his body could not fight it. The cells continued to mutate into cancer cells, where he was then diagnosed with lymphoma. At that time, they stopped all his anti rejection medicine. He was on a very low does of Cyclosporine. He under went chemo therapy for the cancer. Doctors did not put him back on anti- rejection medicine, as they said it would be easier to deal with rejection, then get cancer again.My son will be 22, on the 27th of July.  he has taken no anti rejection meds for 11 years now.
I am a bit concerned for him right now. He has had flu like symptoms, and on day 3 he still is not feeling better so he in now at Quick Care seeing a Dr. I am waiting to hear back from him after he finishes with DR.

[elliebellytara]

ive been on anti rejections for 19 years now, you really need to take them, otherwise your liver will reject, ive had 2 liver transplant , never drank just ate cockles and had dvt in the 1st liver transplant, i might be heading for a 3rd, as i have dvt back in my liver,,

[nan535]

Sorry to hear about the dvt in your liver. Hope all goes well for you.

[orphanedhawk]

I know of one man who after 5 years stopped taking his prograf. He's 9 years out and doing fine.
He's lucky he had a donor whose liver was a perfect match for him, he had no rejection episodes, etc.

It's a risk but research is ongoing.

Having had my daughter as my live liver donor, and no rejection episodes, I think I'd be a good candidate and am very interested in this subject. Currently I'm on .5mg prograf twice daily, the lowest dosage possible.
I'm not ready to try it though, not yet :)

[nan535]

Hi OH
Is the 5 mg twice daily the lowest dosage for you or everyone?
The reason I'm asking is my husband is currrently taking 2 mg in the morning and only 1 mg at night.  They have been steadily reducing the prograf each week after transplant after checking his bloodwork.

Nan

[Laurenv999]

Hi, I am on prograf XL which is a prolonged release capsule I take once daily

[nan535]

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

[orphanedhawk]

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 ?

[nan535]

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

[orphanedhawk]

Yes, of course you're right.
I'm watching the research but I'm fine with taking my minimal dosage of prograf:)

[Linda_hates_prograf]

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.  

[golfpro1957]

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.

[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.

[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]

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.

[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]

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??!!

[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.

[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.

[pmwayne]

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

[VanBee2010]

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!

[jepoi52]

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!