HCV genotype 1a and liver transplant treatment

[bzzracer]

In March of 2004, I underwent a successful liver transplant. Prior to the transplant, I was diganosed with HCV genotype 1a with a viral load count of 1.5 mil.
Here's where you may be able to help me. I'm looking for feedback from anyone who has had a transplant AND then undergone a successful Peg-alpha type of treatment with the SAME genotype. Let me know how you felt and if you were able to function as a normal human being. My surgical team is thinking about putting me this program come March-May of 2005.

[EyesofBlue55]

You might want to repost this question and start another post.This one was started in 2007.Go to ask a question-not post a comment cindy

[pamelajohnson]

my daughter is 17 and has auto immune hepatitis she was also just diagnosed with hvc 1a.  She on steroids 40 mg a day for the auto immune and we have to wait on some testing results before deciding on future treatment with the new diagnose's.  Iam very scared for her can anyone tell me what to expect.  

[susan400]

Oops, I actually did not look at the date, I feel so silly!  : p     I had thought in the back of my mind that it had been longer than 6 mon. that you'd been off of TX, but sometimes I get mixed up on here about who is on what TX and as what point they are with their post TX labs.  I'm glad that this is an old post and that we already know your SVR :)  

Susan  

[Deb_c430]

Knew you were SVR,  i just noticing some of these post are old.  Strange here lately!

I am into the Dodgers (baseball)   they are doing their normal thing, pretty good for awhile then they fall apart!  

Susan you are so right, Michael is a good man,

Deb

[mikesimon]

Things change and yet they seem to also remain the same. It's always strange when an old post pops back up. I am sure you both know that I have been SVR since June 2004. Of course, there is always something going on with me so it's never quite a free ride. I won't bore you with some crazy tale of labs and confusion. I am a lot better than I have a right to be so I will just say "thank you" and enjoy it. And I am a hockey fan too and my team is the Penguins and they are really making it a lot of fun.
My best to you both,
Mike

[susan400]

I will be thinking the best of thoughts for you.  You deserve to be clear and done with this thing.  You've been through so much and yet, you are so very supportive of everyone on here.  

Susan

[Deb_c430]

This is an old post,   you need to talk to your GI, have you txed before?

Mike,  you still rock!    

[21nneedshelp]

i have genotype 1a my count went from 1700000 to 334000 and i am not on any meds

[mikesimon]

That's a tough call especially when you're feeling so well. If you're young it might be worth a try. If you don't respond rapidly and significantly you could quit. There are down sides to doing this stuff but if you could clear I think you'd be ahead. A lot of studies suggest that transplant patients for hep c do as well as those transplanted for other reasons but there are a few that suggest otherwise. It's kind of strange to go through a precedure like transplantation and yet still have the underlying disease but that's the way it works. Whatever you decide I wish you the very best of luck. If I can be of any assistance give me a shout. Mike

[mikesimon]

You're very welcome. I know what you're going through and I don't mind telling you anything at all if it will help give you any added comfort. After transplant the virus emerged quite virulently. I was transplanted June 17,2000. On 7/7/200 my AST was 50,ALT was 126, GGT was 264 and total bilirubin was 1.0. 7/27/2000 AST 81, ALT 345, GGT 956 and bilirubin 1.7. I started treatment then and my values declined dramatically and steadily except for my bilirubin which actually increased. The reason for the increase in bilirubin is that I developed hemolytic anemia which causes the premature destruction of red blood cells. The breakdown of these dead cells increases the indirect bilirubin which is not an indication of hepatic injury so if that happens to you don't be alarmed. Generally what we see on our labs is total bilirubin which is the sum of indirect or uncongugated bilirubin and direct or conjugated bilirubin. If your total bilirubin should rise a fractionalized bilirubin test will indicate the value of the 2 components and it is easy to see where the problem lies. After I started TX my values fell into normal and stayed there as long as I was on TX. Over the last year my my AST has been between 18 and 39. It is now  28. My ALT has been between 13 and 43 except for a 2 week period when it spiked to 57. It si now 28. My GGT has been 14 - 17 and it is now 14. My total bilirubin has been between 1.0 and 2.2 and it is now 1.5. My elevation has been due to hemolytic anemia which is just now, after 6 months off TX, starting to resolve.
"FULL DOSE" is 180 micrograms in a subcutaneous injection once per week. Mike

[bzzracer]

Hello Mike, very useful information. Thanks! Currently my ALT, which measured last on 12/09/04, was 63, optimum being <36 - the only abnormal lab score. Next lab is this coming Monday. Doctors say not to worry, since this has been steadily decreasing since hospital release. In Sept 03 a CT Scan  discovered a 2cm tumor next to my portal vein. In Feb 04 it had grown to 2.5cm. I had no HCV symptoms except for excess bile salt under my skin and skyrockety lab scores. Nine days after program acceptance, March 04, I was called and transplanted. Five months after transplant I am back to sailboat racing on San Francisco Bay. Except for my endurance and somewhat mild daily fatigue, I feel great. My new liver is 18 years old, young and strong, and I'm just unsure whether to undertake a chemical treatment or not. Once again, thanks for your feedback.

[bzzracer]

Thanks for your feedback Mike and hope your lab results are strikingly good. I would like to know, if you wish to indulge on this site, your liver panels (AST and ALT) before and after treatment. You may also email me direct ***@****. Lastly, can you tell me what you mean by "full dose" of Pegasys? How many mg's and was the injection treatment once weekly?

[honey1616]

Best of Luck to You!

[mikesimon]

Thanks Layla, I had them drawn today so I'll know this week. Mike

[couchpotato]

Good luck Mike, I have my fingers crossed for you. I will be waiting for your posting.

Be blessed, Mattie

[mikesimon]

I was transplanted in June 2000. My genotype is 1b. I don't think there is much distinction made these days between 1a and 1b although there used to be some discussion on this matter. I started low dose interferon and ribavirin shortly after transplant - around the middle of July 2000. I did a year and didn't clear. This was before pegylated interferon was available so I injected 3 times a week. I took a few months off and started on a slightly reduced dose of Peg-intron and 800 mg. ribavirin. I did this for a year and towards the end of this treatment I did test undetectable but only continued treatment for 2 months post clearance. I was too sick to do much more. I relapsed within 3 weeks. During both of these treatments I felt misserable. I developed hemolytic anemia (which is not uncommon) and supplemented with Procrit (Epogen). The treatment was very hard to tolerate - I lost a lot of weight and felt nauseous all the time. I took 1 month off and started Pegaysy at full dose and 1000 mg. of ribavirin and did this for 72 weeks. I found the Pegasys much, much easier to tolerate and though I did again develop hemolytic anemia and needed Procrit the treatment was tolerable - not fun by any means but a whole lot better than Peg-intron. I stopped treatment June 27, 2004. I had tested clear in April of 2003 but thought it wise to extend treatment as long as prudent. I have been clear since stopping and my last test was Dec.7, 2004. December 27th would have been 6 months post treatment and that is the time when, if clear, you are determined to be SVR - sustained viral responder which is as close to "cure" as we can get. I will test again next week and then I should know where I stand. I could function with Pegasys but not with Peg-intron. My advice would be to do Pegaysy at full dose and at least 1000 mg. of ribavirin and extend treatment beyond 48 weeks. Transplant patients seem to have a harder time clearing and I think the extension and the 1000 mg. of ribavirin is why I have done so much better this time. It's not easy but hopefully I am finished with treatment. I'll let you know how my labs look next week. Good luck. Mike

[layla]

I wish you the best on your labs. You've sure been through a lot. LL

[lackalustre]

i do know someone who trasplanted then did the treatment. he tolerated the tx. well but had some complications from the transplant to deal with for a time.   last i heard he had depression  but otherwise handled the meds fine.  i dont know how to get him and his wifes email address anymore but i corresponded with them for a long time.

[Dirac]

Yes that is right, Mike is the one. He had a genotype 1. Good luck. I am sure he will reply soon.

[DRAGON SLAYER]

Hello & welcome to this forum,
I can't help you but I know that there are members here that can. I know that Mike Simon had undergone a liver transplant although I'm not too sure of his genotype.
Hang in there & someone will help you.
Good luck to all,
Ben