I am a 57 yr old, 2 yrs out from transfer. My Sept. biopsy says the liver fibrosity (is that a word) is already stage 3. My docs are really pushing me to do the new drug. I am not a virgin, I had interferon and rivivarin; also nupogen and ipogen were needed in 2003. Worked great until I finished the year and then Hep C came right back. Complicating this is concern for a reoccurrence of PTLD- Lymphoma now in remission. That came from the transplant. Does this new thing boceprivier really work?? Iam concerned that 'll spend the next year miserable only to see the cancer jump back up because I am so weak. Any feedback will be welcome.
Hello and welcome Libster,
Like you I had a tp. When my biopsy this summer said I was bridging from stage one to two, my hepatologist suggested starting tx.
I'm geno 2 and doing SOC.
One thing he mentioned was even if I didn't clear the virus, the interferon would help my liver.
My ALT and AST dropped from the 400 &500s to the 30s and 40s within one month.
I know tx is indeed helping my liver.
I can't speak to the PTLD problem as I am unfamiliar.
Welcome.. I'm 54 n doing tx for the 1st time. Stage 4 meant they wouldn't treat w/o a transplant center overseeing it. They're giving me a chance n I'm in week 25 of 48. I know I may need transplant eventually, but the virus has been undetected since week 4. Yay! From what I was told, with protease inhibitors, it's not likely to come back.
I'm not the one to give good advice or get stats from... Others on here are. It's been rough, but I'd start again tomorrow if I needed to. I'm doing Telaprivir because dr said I'd have 12 weeks of it n I work full time. Both have had great results.
Sounds like you've had some experience and I truly wish you the best as you make your decisions. Karen :)
I am happy that you were able to receive a life giving transplant two years ago. Unfortunately you have had some major complications since that time. Since you only had a transplant two years ago and your hepatitis C has already done significant damage to liver (stage 3 fibrosis) you will be in danger of graft failure (liver failure or liver cancer) soon. I’m sure your hepatologist has explained this to you.
The advantage for treating your recurrent hepatitis C now is that you have the best odds of curing your hepatitis C with treatment before it destroys your new liver. Should you develop stage 4, cirrhosis, the effectiveness of any treatment becomes much less. You want to give yourself the best possible odds of curing your hep C before it destroys you new liver and you will need another transplant to continue living. As you have already been through the transplant process, I am sure you do not want to have another transplant and again wind up in the same situation as you are currently in. One way or another you need to cure your hepatitis C at soon point. Now is probably the optimum time for you to do that.
(Just for my own information as I have hep C and am waiting for a life saving transplant. Did you receive a donor liver from a young person? Someone less than 30 years old?
Did you receive a liver that already had hepatitis C or did the infection reoccur during transplant? thanks....)
In your previous treatment you were a treatment “relapser” according to what you say. Treating with either of the new antivirals gives you an excellent (80% plus) chance of cure in individuals who have NOT had transplants. Unfortunately, there is NO data regarding the use and effectiveness of the new antiviral hepatitis C treatment in patients that are post transplant. Treating hepatitis C in post transplant patients has a number of major challenges including diminished patient tolerance for side-effects, drug to drug interactions, as well as managing the patient's immunesuppression. But if I were you I would think that the possible benefit outweighs the risk the risk. Treatment can always be stopped if it is not working or negatively affect your post TP status or PTLD. Of course this is your decision to make and only you should decide what is the right thing to do with your life.
Since you had a transplant and developed Posttransplantation lymphoproliferative disorders (PTLD), which is one of one of the most serious complications occurring after transplantation, your health condition is not one that is very common so you need all the expertise of all the doctors that have treated you at the transplant center plus their hepatitis expert.
You definitely need to stop the progression of your liver disease soon, before you develop cirrhosis, liver failure or liver cancer. So if your hepatologist believes that treating with Victrelis (boceprivier) is the best option for you then I would very seriously consider their recommendation. If you decide to do nothing the outcome in a short period of time will not be good. Remember if the treatment isn’t working our having a negative impact on your overall heath it can be stopped at any point.
In the mean time you may want to educate yourself about hepatitis C and its treatment, Posttransplantation lymphoproliferative disorders and post transplant challenges so you can make the best choices for yourself in the future.
I wish you the very best. You have already overcome some very difficult health challenges. Curing your hepatitis C soon can be a huge factor affecting your future prognosis.
Good luck. Let us know how things develop and we will help you through the treatment process.
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