Hep C after Transplant

All of you out there dealing with Hep C, am wondering if any of you have dealt with HVC after transplant? My husband has HVC, had a transplant and is 5 years out. His brother, 8 years after transplant recently died, after his liver quit functioning. Now my husband's liver enzymes are somewhat elevated and we are wondering if he should try HVC treatment again... he has been a non responder to ribaviron and the pegalated version. But times have changed since he underwent treatment. Just wondering if this is the right forum, cause no one seems to be addressing this issue, or are there previous threads that I can access?  Point me in the right direction, or let me know what you know. Thanks so much - Zanna62

[couchpotato]

My husband had his tp 3 years ago and is now undergoing tx. Lucky for him, he is genotype 2 so only does 6 months. He's having a surprisingly easy time of it, we pray that continues.

Hopefully Mike Simon will see your post, he's post-transplant as well, and VERY knowledgeable.

Good luck
Mattie

[meki]

Don't know anything about it - but there are quite a few on the board that will be able to clue you in!

Have a great day - and keep your hopes up!

Meki

[Zanna62]

Unfortunately my husband has a genotype 4A that doesn't respond well to treatment.. Hope all goes well with your husband, how are his enzymes? For awhile my husband's were really pretty good, just lately they are going up each time he gets a blood test... I am looking at the different threads and finding some good ideas. I will read more of them as I have time.

[mikesimon]

Did your husband treat post transplant? The reason I ask is that response to treatment can change after transplantation. Non-responders have been known to become responders and responders have also become non-responders after transplant although this doesn't happen often.
See: http://www.medscape.com/viewarticle/543528_1
Sensitivity to Antiviral Therapy May Change After Liver Transplantation in Patients With Chronic Hepatitis C Virus Infection

You must be registered to view the article but it's free and easy to register and there is a lot of good information at Medscape.com.

I am not knowledgeable about genotype 4 except that I know it is a difficult type to treat successfully. I think that the protease inhibitors in trials and development (Vertex-950 as the primary example) may dramatically change the landscape of HCV treatment and will hopefully be available within a couple of years. Depending on the condition of your husband's liver it might be possible to wait till then to treat. What do his doctors say? Has he been biopsied recently? I think the condition of your husband's liver should dictate treatment decisions. I know transplant patients who take low dose interferon aimed at minimizing ongoing damage from the virus - maintenance treatment. Although the present treatment (Peg/Ribavirin) is often difficult for transplanted patients to tolerate, early testing can pretty accurately assess the likelihood of success and treatment can be discontinued early if benchmarks are not met. So it's something that might be considered if he hasn't tried treatment post transplant.
Mike

[couchpotato]

My husband's enzymes were perfectly normal post transplant and his biopsy was maybe a 1 (I don't remember if it was even that yet). We decided to treat the hep while he was feeling good even though the liverheads wanted to wait until a biopsy showed at least 2. Our thought was why wait till  the hep was doing noticable damage. Although there is a risk of rejection and tp patients seem to have a harder time dealing with tx, at this stage of the game, we are happy with our decision. After 4 weeks he was UND and all enzymes continue to be normal. Lucky break being a genotype 2.

Mike's given you good advice and information to ponder. Come here often, lots of people to lean on and I'm sure other genotype 4's.

All the best
Mattie

[Zanna62]

First Mike,
Thanks for the info I will go to Medscape site. After transplant, they wanted my husband to have chemotherapy as he had a carcinoma in his liver... but we opted not to do the chemo. His son is a doctor and he did some research as did we, and after seeing a specialist in New York City we decided against it. They did give him interferon after TP but he did not seem to respond and it was making him feel terrible, so they discontinued it. Since then, he has been doing very well, he only takes 1 mg of rapamune a day, he feels pretty good, it is just that we noticed that the enzymes are creeping up.
Yes, he had a biopsy last year and they said that there is no appreciable change to the liver, but they seem reluctant to tell you the exact viral load.
We are thinking about seeing another doctor, because the transplant team doesn't seem too concerned... it's like - you are 5 years out and doing well, what do you want from us?

The other question I would like to ask those of you that have had a transplant... do you have any digestive problems? My husband suffers from this big time. He has had a lot of tests, saying there is no blockage, or other problems, but yet, even if he eats small item with too much oil, or he eats too much a time, he stomach gives him a lot of pain. He had this before TP, but now it seems to be much worse.

Mattie,
Thanks for your good words. I agree, a good idea to get treatment sooner rather than later. Interesting that you say the biopsy was a 1. I hadn't heard that there is numerology to it. I would like to persue that. Where did you have the transplant and biopsy? By the way, how old is your husband?
Mine will be 69 this year.
Thanks all for the information.

Zanna

[mikesimon]

I do not have any digestive issues and I have no knowledge of digestive issues post transplant but hopefully someone here will. One mg Rapamune is nice and low and I am jealous because I take 2 mg Prograf along with 1 Rapamune. I had my dose reduced to 1 mg Prograf every other day a little over a year ago and ran into some crazy issues. I am clear of HCV after treating for quite a while and I know how hard it is to tolerate. I had a much easier time with Pegasys than I did with Peg-Intron for whatever that is worth. I treated twice for 53 week each with Peg-Intron and I could barely get through it even though my Ribavirin dose was inadequate. I then treated for 73 weeks with Pegasys and 1000 mg Ribavirin and cleared.
You didn't ask me but I was transplanted at Starzl Institute in Pittsburgh in 2000.
I know how some transplant doctors look at this and I agree with you - "your graft is functioning so we're happy". I don't know whether surviving at 5 years or 7 years or whenever is what they are trying to achieve for their statistics but that mindset isn't uncommon. Sometimes you just have to push really hard and often we're too worn out to manage that.
I have a lot of hope that the protease/polymerase inhibitors in development are going to be really good for transplant patients with HCV but the question is when are they going to be available. It cannot soon enough.
I wish I could be of more help to you. If there is anything else on your mind do not hesitate to ask - anything.
Good luck, Mike

[couchpotato]

What the h*ll happened??? Anyway, biopsy's show many things and 2 of them are grade and stage. Stage is the amount of fibrosis (scarring) and grade is inflammation. My husband was stage 1. (Geez, really hope I haven't got this backward). He was 53 years old when he had his tp. We're in Canada, had the tp in Vancouver, B.C.

Wish you all the best
Mattie

[stevo51]

Hey mike.long time no see..still hanging tough.bout bought the big one last year.had another spine surgery.got spinal meningits.and staph blood and urine..was tough.guess I am just a fighter.then got a csf leak from it..took em another surgery and a year to fix that..just got my blood work back the other day.enzymes were 9 and 7.lol..could not believe it..still on just 2mg of prograf twice a day..thats it except for the vitamins of course..hope all is well with you..8yrs out for me now..least no more biopsies been since 03 now..but they werent bad..still hepc free since 2001 too.they dont check me anymore..so all is well as can be I guess..take care yourself..I know you went through enough times of treatment for the little bug..

steve..

[mikesimon]

It's great to see your name again. Man, it's been a while and you have had some things to deal with. I never had enzymes that low - mid teens is about it for me but I'm okay with them at that level. Has it been 8 years? I thought you were closer to me than a year prior but now that I think hard it seems right. I am thrilled to see your name Steve. I really can't express it adequately but I guess you know how I feel. Stay well and drop in once in a while or more often if it suits you. Stay well and happy. Mike

[Zanna62]

Just wanted to let you know that I did go to Medsearch and found a number of good articles. Bottom line seems to be that currently there is nothing out there. It seems that more harm comes from treatment rather than good... that is in my husband's case. I know that there are new treatments coming down the pike, and relatively soon, so I will concentrate on that.  Now, he has genotype 4A, which I didn't see anyone mentioning that as a genotype, but it must be more like 1 than 2 or 3, because after receiving 3 types of treatment pre-transplant and 1 treatment post transplant he is considered a non responder.
Mattie, that is really great that your husband is responding to treatment... to get rid of the HCV would be a real gift from God. And since he is able to stand the treatment, you are double blessed.
Mike, thanks for reassuring me that my husband's stomach problems are not due to any liver or HVC issues.. That is good to know. Thanks to everyone out there that has responded or even just read this thread. I will be checking in every once in awhile to see what is going on, Yours, Zanna

[mikesimon]

Zanna, I  have to caution you that just because I have never experienced it or heard about it that doesn't meant that there is no connection between his digestive issues and transplant. I really just don't know so double check with his team to be sure. I'm sure that you've done that anyway but I wanted to stress that I am far from an expert here. Good luck, Mike