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?

[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?

[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

[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.