Treatment after liver transplant

Hi everybody! I am new to forum, found it 2 months ago and was amazed by the depth of knowledge you guys have. Thanks from sharing your experiences and being of such help to many. I had HCV for 40+ years (60 now). I am geno 1a, was on IFN in 95, IFN+Riba in 99, didn

[l-horn]

I've seen this post without response for a bit and feel compelled to let you know someone is 'out there'. There are a lot of friday shot takers so it can get a little slow on the weekends. Someone will eventually respond that can answer your questions. Keep checking back.

[aquarius64]

welcome to the forum! i don't have any knowledge in this area but i am sure someone will. keep checking back in and good luck!

[honey11]

Hey Jeff,,,Welcome and glad to see you join the board!  Yess mikesimon had a transplant and did tx and beat it so I'm sure he will see this and respond!

[friole]

Well, the best news is that you are responding to the Pegasys.  You have really worked hard to clear this and I hope this is the time.  

Indeed, Mikesimon will be checking in and has gone thru much that you are doing.  He did clear the virus after transplant, but virus was detected in his liver (not in his blood) after his anti rejection meds were lowered and he went back on low dose of interferon and very low dose of ribavirin for months.  I believe he is done with that now too.  If you go to the archives and plug in liver transplant or mikesimon, you should be able to find a lot of information.

Welcome to the forum.  I am frijole (bean) and am a 1a. age 59 and just relapsed after 56 weeks of treatment.  I am currently waiting to see a specialist to decide what to do next.  I have little liver damage and the answer may be to do nothing.
frijole
frijole

[somuchmore]

Good to see your post here. GREAT! To hear you have received the gift of life.

I can not give you any after treatment advice.

But, thank you for posting. Because am about 5 years or less behind your status. Being GENO-1A, non-responder the both standard treatments and heading toward transplant. At 52 and having HCV >30 years I'm a little scared.

Good to hear from someone who has done the translant.

Thanks,

[Forseegood]

Just wanted to say, I'm inspired by your story and courage and good humor under what couldn't have been easy...I'm really getting it about the stress, if I don't do my "coping mechanisims" meditation, hypnosis tapes, etc etc...I turn into a Screaming Mimi which might be worse then a lot of other bad behaviors...thanks so much for checking in with us, and I wish you all the best in the future...I've witnessed so many get ahead of their problems with this....

[Jeff88]

Thanks for all your words of support!

frijole: I looked up mikesimon's past posts and they were quite helpful.
At least I know what may lay ahead.

somuchmore: Don't be scary of transplant, I actually had a better quality of life after TP. But, hopefully you can wait until new tx will come up on the market. From my experience, removing stress is the most important thing to stabilize your body. I had a lot of stress which accelerated the progression and damage.

Another thing which may be interesting to non-responders. I didn't respond before TP, actually my alt/ast would shut up and I need to stop at wk 11-12. The reason was thought to be auto-immune reaction. They made a test (ANA?) and it showed a mild auto-immune response. But when on IFN, it was enhanced.

Remarkably I started responding after TP. I was puzzled why, what changed?
Now I think that the reason may be anti-rejection meds, which keep the immune system at bay and allow IFN to kill the virus.

I don't know if this is a good strategy for those with auto-immune reaction, after all adding immune-suppressive meds may lead to more virus replication. Just a thought.

[mikesimon]

Hello Jeff. I was transplanted in June of 2000. I'll try to address your questions in order.
I think a lot of transplant centers are reluctant to treat with the standard recommended ribavirin doses(for non transplants) and perhaps interferon doses too. I treated two times with what I consider to be inadequate ribavirin doses (I'm Genotype 1b) - I believe my first time it was either 600 or 800 mg per day and the second time it was 800 mg daily and I weighed about 175 lbs. The third time I prevailed upon my surgeon to allow me to treat with 1000 mg ribavirin and I did clear within 12 weeks and achieved SVR after a 73 week TX duration. I treated the third time with 180 mcg Pegasys and the first two times with Peg-Intron. I did become undetectable during my second treatment but I cleared late and stopped too early and relapsed within 3 weeks. My platelet count got as low as the low 20,000s during my last and successful TX but my surgeon didn't seem concerned or if he did, I didn't hear about it. And I was anemic throughout all of my treatments and it was more severe with the increased ribavirin dose. I supplemented with Epogen.
Regarding rejection: From what I have read rejection is a concern and it does occur but it is not common. Early on there was a lot of concern about rejection due to interferon but experience has shown that it does not appear to be as great a risk as was feared. I never rejected while treating.
The fact that you did not respond prior to transplant is interesting but not unheard of. I have an article addressing this point but it is at my office and I cannot retrieve it now. My recollection is that this may be attributable to the genetic difference in the host that results from the new liver but I would need to check to be certain. I do not think it is generally thought to be due to the immunosuppressive drugs but that may not be the case with you since you say you had an autoimmune response prior to your surgery. I believe that Prograf and Cellcept have been tried with autoimmune hepatitis but I as I recall this approach wasn't very successful but again I would have to check to be sure.
Different centers have different protocols for treating HCV post transplant but I believe that the evidence definitely supports treating aggressively if the patient can tolerate it. You didn't say what you weigh and of course that is a key factor in establishing your optimum ribavirin dose. Renal function is also a factor and liver transplant patients are prone to renal impairment due to Prograf so if you are compromised a lower dose may be appropriate. If your center will supplement you with Epogen/Procrit I might want to ask about an increased dose if your weight and renal function don't preclude it. I'm sure you've seen the statistics which show that weight based ribavirin dose  positively and significantly impacts the chances of achieving SVR and I believe that transplant recipients are no different from non-transplants in this regard.  
I want to welcome you Jeff. We transplant recipients are extremely lucky and I hope that our presence here might give hope to those who are really up against it with this disease. There is life after transplant and it can be a good life. If there is anything else that I might be able to tell you just ask. Good luck Jeff.
Mike

[Jeff88]

Thank you for your kind words and wishes. We are all survivors from a very bad and difficult problem, but as our collective experience shows "we shall overcome". It is easier now with new forms of peg interferon than it was 10 yrs ago and we know that new meds are on the way. Thank you and good luck to you and all who are listening! Jeff.

[Jeff88]

Dear Mike, I am immensely grateful for your response. You have gone through a lot- hope, disappointments, worries about numbers up and down, facing decisions with no good options and no good information. We all go thru this and learn from this struggle not only and no so much medically, but also as human beings. This disease changes us and I would say makes us more mature and wiser, despite our young age:).

I am on treatment now, with 800mg, my weight is about 170 lbs. A year after TP (in 2003) I was treated with 400mg and 180 pegasys. I responded, but didn't achieve SVR. Past summer I got a much better (faster) response during IFN only, although did not clear. No surprise, as this was IFN only and only for 11 wks. Your experience gives me hope to try again, I hope that 800 mg will work for me this time. I had a long road before the end of tx, but I think a lot of how to stabilize things after tx. Your experience with 200 riba and half of pegasys also helps in this decision.

I am totally with you about life after transplant. For me it was and is much better than the last years before TP. I can think more clearly, can work, but most importantly I am here to enjoy the sun, family, silly talk shows, C-SPAN and much more:). No more mountain skiing though :(
Thank you so much Mike and good luck to you. Jeff.

[mikesimon]

You're very welcome. You must have been doing a lot of homework to have read about the half dose Pegasys and 200 mg Ribavirin. That's an entirely different topic and you've probably read about all that I really know about it anyway. Maybe sometime later we can get into all that weird stuff. In the meantime take care of yourself and don't be a stranger now that you've found this place. Mike