I am not new to these boards, having posted about my husbands wait for and subsequent liver transplant in September of 06. Sadly, tho we had hoped for years of freedom from HCV activity, it is coming back with a vengeance (no doubt due to the immunosuppresants) and he will begin Interferon soon. He is holding off for a few weeks as we have a son & DIL moving due to Navy transfers and they will be coming thru our state for a few days & he wants to he healthy enough to enjoy a short visit with them.
My hubby keeps a lot from me, but I know he is genotype 1a and that is not the "good" kind--or at least the most receptive to treatment. I want to hear from people who have had or are currently undergoing the peg-ribavarin treatment and how they are doing. Can you still work? Are you miserably depressed? My hubby has not even seen the docs yet, buyt has had the biopsy & viral load blood work and has been taken off one immunosuppressant drug to boost his immuno system in preparation to start this. I do know he only has a 50% chance of it being cured, so I'm not overly psyched about this being a cure. Truth be told, our marriage is pretty rocky since the transplant-he felt I wasn't supportive enough--like 24/7 care isn't supportive enough?? So we've definitely had some bad times. I don't want this to make it worse, and I am committed to stick out the Interferon with him, no matter how bad it gets, but I need to know what I'm in for, and what he's in for. Thanks in advance.
Liz

I am not new to these boards, having posted about my husbands wait for and subsequent liver transplant in September of 06. Sadly, tho we had hoped for years of freedom from HCV activity, it is coming back with a vengeance (no doubt due to the immunosuppresants) and he will begin Interferon soon. He is holding off for a few weeks as we have a son & DIL moving due to Navy transfers and they will be coming thru our state for a few days & he wants to he healthy enough to enjoy a short visit with them.
My hubby keeps a lot from me, but I know he is genotype 1a and that is not the "good" kind--or at least the most receptive to treatment. I want to hear from people who have had or are currently undergoing the peg-ribavarin treatment and how they are doing. Can you still work? Are you miserably depressed? My hubby has not even seen the docs yet, buyt has had the biopsy & viral load blood work and has been taken off one immunosuppressant drug to boost his immuno system in preparation to start this. I do know he only has a 50% chance of it being cured, so I'm not overly psyched about this being a cure. Truth be told, our marriage is pretty rocky since the transplant-he felt I wasn't supportive enough--like 24/7 care isn't supportive enough?? So we've definitely had some bad times. I don't want this to make it worse, and I am committed to stick out the Interferon with him, no matter how bad it gets, but I need to know what I'm in for, and what he's in for. Thanks in advance.
Liz

I finished peg/riba a few months ago. i only had to do 24 weeks, for which i am very grateful since i would not have made 48 weeks. just would not , could not, have made it that long. so there's one reaction.

but the critical fact about this is that everyone is different. reactions to peg/riba range from nothing much to great misery. the misery can be psychological (depression is common), physical (anemia, thryoid issues, etc.) or all at once. Some folks find the symptoms improve over time, some the opposite.
One person i know actually said he 'never felt better." but this is the only instance of this reaction i've heard of. Still, it shows how individual, how unpredictable this can be.

I personally felt the greatest damage was to my wife. i was a miserable s.o.b. at times, and useless at others, sometimes for several days running. So, given your history already with this illness, i'd suggest strong consideration of pre-emptive anti-depressants. I did not do this, and I am now not very sure i made the right choice. At least, it may not have been the fair choice as concerns my partner.

oh well, no 'right' answer here. sorry for that. i sure feel for you both and hope for the best.

let us know how it goes with you both.

sean

I have 3 weeks left of a 24 week regimen. As the treatment began I felt fine and thought I'd get through with none of the scary side effects. As the weeks went by, I got weak, flu symptoms, low white blood count--basically felt like s&^$!
I have not been able to work out of my office, fortunately, I can work from home but most days don't feel like it.
I have NO viral load :angel: and my WBC is now up thanks to Neupogen 1x a week.
I just got a good treatment from the pharmacist, finally, for sore tongue--take equal amounts of childrens liquid benedryl and malox and rinse your mouth and spit.
It is worth it and I too wish I had started the antidepressants-any other questions just ask.

Thank you, both for your quick answers. I am wondering why you only had to do 24 weeks. Although my hubby has not seen the drs yet (we are positive they are going to put him on the interferon) we had been told it was a 48 week regimen. 24 would be so much more doable. Do they consider you cured? Of course that it what we want, esp after the transplant--we need a total cure, not just buying time.
I am already on AD's, my husband refuses to take them, so talking about them is a waste of time. He'll just tough it out, no matter how gruesome it gets for the rest of us. My youngest simply left home while we were waiting for the transplant, she couldn't stand it (I don't blame her). He's already very depressed, but takes it all out in anger towards me, in caustic, hurting comments. I do not know if I can stick it out with him for 48 weeks. He will not let me go to the clinic next week when they give him the news about when he has to start. He's shutting me out completely--already depressed & angry, because he knows I will bring up the depression issue.

So--after 24 weeks you are free from any HCV at all?? This is wonderful and I am so happy for you. I honestly don't know if I can stay with him if he continues with the anger he is giving me--but I cannot leave him to suffer when he's sick--what a dilemma.

Thanks again & best wishes for your continues recovery.
Liz

Thank you, both for your quick answers. I am wondering why you only had to do 24 weeks. Although my hubby has not seen the drs yet (we are positive they are going to put him on the interferon) we had been told it was a 48 week regimen. 24 would be so much more doable. Do they consider you cured? Of course that it what we want, esp after the transplant--we need a total cure, not just buying time.
I am already on AD's, my husband refuses to take them, so talking about them is a waste of time. He'll just tough it out, no matter how gruesome it gets for the rest of us. My youngest simply left home while we were waiting for the transplant, she couldn't stand it (I don't blame her). He's already very depressed, but takes it all out in anger towards me, in caustic, hurting comments. I do not know if I can stick it out with him for 48 weeks. He will not let me go to the clinic next week when they give him the news about when he has to start. He's shutting me out completely--already depressed & angry, because he knows I will bring up the depression issue.

So--after 24 weeks you are free from any HCV at all?? This is wonderful and I am so happy for you. I honestly don't know if I can stay with him if he continues with the anger he is giving me--but I cannot leave him to suffer when he's sick--what a dilemma.

Thanks again & best wishes for your continues recovery.
Liz

Sounds like the antidepressants will be a good thing IF he'll do it.
I have 24 weeks because of my genotype, which is the best one. I forget which it is.
I was told the other day that even though I'm virus free right now-it could come back. I was not too happy about that. I had absolutely NO symptoms at all when this began. I only found out because I went to give blood at a blood drive and the Red Cross contacted me to get to a doctor right away.
My brother in law went through this a few years ago and never missed a day at work. So everyone is different.
Good luck!

Eyesworld-
Can you find out what genotype you were/are? My husband is genotype 1a, which from what I've been told is the most treatment resistant. He'll do 6 weeks, check the viral load, if it's down at all, 6 more weeks, then if it seems to be working, they'll go for the remaining 36. Otherwise they quit after 12 and let you go home to slowly (or in our case) rapid liver failure.

Eyesworld-
Can you find out what genotype you were/are? My husband is genotype 1a, which from what I've been told is the most treatment resistant. He'll do 6 weeks, check the viral load, if it's down at all, 6 more weeks, then if it seems to be working, they'll go for the remaining 36. Otherwise they quit after 12 and let you go home to slowly (or in our case) rapid liver failure.

I'll call the doc and ask

Eyesworld-
Can you find out what genotype you were/are? .

It's 2B

Ah--the good one that respnds in like 80+% of the time. I am glad for you. We only have a less than 50 % chance of it working. Well--what can we do? Forward and onward and in 12 weeks we'll know if he's a lucky one.
Thanks,
Liz

2 more weeks to go-
an additional side effect-my hair is falling out-thank god I have a lot of it. The doc also prescribed liquid lidocaine (finally) for my sore tongue.
I just had a viral load test and it's still undetectable, but my WBC is back down again even with the Neupogen.
It's all worth it though-did he start TX yet?

Hey
I started a new thread since my hubby will begin treatment in a few weeks.
Sorry about your hair---my hubby already lost some due to the antirejection meds and I think he's going to look pretty funny, bald. Oh well, better bald and alive than the alternative.

I'm hoping my hubby can have a good attitude--I ma really afraid he's going to do what he did post transplant which is hole up insie himself and do this caveman vs the workd kind of thing. It was bad news--he just shut me out completely, then when he was better he acted like proud peacock that he'd done this amazing thing--alone.

Did you need antidepressants? Of course, you're were only doing 24 weeks, right? we're going 12, checking to see if it's working, then if so, 36 more. He's already moody & irritable. He snaps at me and I go into the garage & cry. Real healthy, I know, but he won't medicate for depression. Says he's on
"Too many drugs now" --here's the kicker--he takes 1mg of ProGraf twice a day. That's all. Men are weird, seriously!

Congrats on making it!! In almost a year we'll be there too!
Liz

hi
Monday is my last interferon and wednesday is my last neupogen (for the low wbc)-I will be so happy not to take the ribavirin. I think that's what causes all the bad stuff.
I have no viral load, although I have been told it can come back.
I didn't get depressed until it was almost over and it never was that bad.(now I can say that)
Good luck with your husband.
I'm hoping the side effects go away quickly. They have me on liquid lidocaine for mouth pain right now.
The only good side effect was losing 20 lbs. And, of course losing the HepC!!!

Congrats! That is good news for you--and you always had a great attitude. I hope my hubby can be the same. I am a little worried about him, but we will take it one day at a time!
I have only just heard that it can come back--does that mean the HepC?? That would be awful!!!!!!

I have only just heard that it can come back--does that mean the HepC?? That would be awful!!!!!!

I am praying that it doesn't come back-but that's what they told me. I'll find out on 7/9-my last doc appt. what my follow up tx will be.

Good for you Eyes. Liz...I did get very depressed and should have taken anti depressants (which i hate taking in the beginning) before I started. I way recommend them to everyone doing tx. My husband fought it too and he became such an sob that I made him get on them and he was so happy he did. I was so happy i got on them too. about four wk into my tx i was miserable more emotionally and in my head than in my body. He will endure this stuff a lot better on them. And Eyes...I hope it does not come back too. I am not going to say I cant do it again if I had to but I sure don't want to. I would if needed though. Apparently, and some people would disagree with this, the three docs that I have talked to consider you cured if you are undetectable and remain that way. As far as the amount of time you treat for they base it on the gen you have first and foremost, then the amount of fibrosis you have or damage to the liver, and obviously how you respond to the tx.

My husbands Hep-C came back. We meet with a specialist is September. He was clear for over 5 years.

Mccarr--
I am so sorry--I hate hearing news like that. What was his genotype and how severe is the recurrence? I am getting angry after the fact with the docs who told us this was a cure, when clearly it's just a treatment, like chemotherapy. I like our Hepatologist, but he sure didn't answer many questions!!! Next appt. I am going in armed with a list of questions and he will sit there and answer everyone to my satisfaction. All my husband cared about was if he's be too sick to work (his love of life comes from his work!)--I had a lot of questions at the start of tx but wasn't given a chance to ask anything (I'm not the patient!)
Liz

My husbands Hep-C came back. We meet with a specialist is September. He was clear for over 5 years.

what is/was his genotype?

I am not sure of his genotype. I will ask that question when we see the doctor in September. We were told that he was "cured". Not! He was clear of the virus for 5 years. We don't know how bad it is, but it seems bad because the doctor called us at home to say that he needed to get to a specialist right away. Right away means over 2 months before we can get in to see the doctor (HMO insurance is a bummer). I just hope that he will get re-treatment. He is dropping weight so fast that I don't know if he will be strong enough for the treatment again. Also, do you know if a diabetic can have interferon? I am very curious about the percentage of people that have a relapse and then have successful remission again. Take care, Mcarr

McCarr-
Call your clinic and get put on the cancellation list--sometimes that speeds things up a lot! I, too , HATE our insurance, but our company is self insured and if you make a stink about it--well, you are biting the hand that feeds you...This whole HCV thing is such a nightmare. I only recently found out that Interferon is not a cure as our drs told us--or maybe I wasn't listening (in shock from the cost!!).....just a treatment, with a possible cure. Many people are cured, though, with no relapses. I am sorry about your hubby.
He is probably genotype 1 as that is most common in the US and hardest to treat....
My heart goes out to you--
Liz

Thanks Liz, I will call and see if I get him on the cancellation list. I appreciate your kind words. I hope that the interferon will help your hubby. Did your husband have the treatment before the transplant?

Mcarr-
No, his doc told him there was no immediate need-and really, he was ok. He went in for his checkup in '05 and his viral loads were crazy and he was in end stage liver failure plus he had cancer. The doc was appalled. He'd never seen someone (non drinker) get so bad so fast. We'd thought he's never need treatment he had been stable so long. He had a HUGE (like abnormally huge) liver and it was compensating really well. When he went in for his transplant he looked perfectly fine. Felt fine too. It was weird. Good luck!!
Liz

what is/was his genotype?

Pretty sure he is Geno type 1. He had the treatment for over a year and did very well. Went for over 5 years all clear. He had a slight elevation after that and now 2 years later it is back full blown. Virus levels and enzyme counts.

Mcarr-
Posttreatment did your hubby drink or smoke at all? Is he diabetic? Seems like you'd mentioned that. It is so awful as I watch my hubby faithfully taking his shots & all to think that all this could be for nothing....trying to keep my spirits up..and his. Would your hubby undergo the tx again?? I can't even fathom that!! What is his viral load, do you know?
Liz

Mcarr-
Posttreatment did your hubby drink or smoke at all? Is he diabetic? Seems like you'd mentioned that. It is so awful as I watch my hubby faithfully taking his shots & all to think that all this could be for nothing....trying to keep my spirits up..and his. Would your hubby undergo the tx again?? I can't even fathom that!! What is his viral load, do you know?
Liz

He is a diabetic, smokes and has not been drinking. (He has been a drinker in the past.) He does not want to do the treatment again. I am going to force him if the doctor will offer it, he will take it. He was very sick the last time. The interferon was not pegulated (time release) at the time of his treatment. He was treated before the FDA approved the treatment. (He was in a clinical trial.) Last time he lost a lot of weight. He can't afford to lose any now at all. I think that interferon raises blood sugar. So, he might not be able to take the tx again. No one told us the scores, just that it was "bad and he should see the Gastro right away" His appointment is 2 days after I have spinal cord surgery. I will be in a neck brace and unable to go with him. That bums me out because I have never missed a doctors appt. with him. I am worried that he won't remember everything the doctor says. I am pretty sure he will get another biopsy (as it has been several years) Take care, Mcarr

Mcarr-
I am sorry==you have a lot going on--DO call he dr's and explain your situation with your own surgery and INSIST on an earlier appt--squeaky wheel and all--I was a rela pest at times and got earlier appts for my hubby all the time. Sept is too far away.
Yeah, I know they have refined the Intereron a lot in time and it has gotten a lot more effective--diabetes is a complication that can make the outcome more iffy, sorry, my SIL checked that out for me.
Drs always have open slots--but their "front end" people try to keep patients away from them, I swear. CAll & be a pest if you ahve to, your hubby needs an advocate.
Best,
Liz