Is it better to treat HCV or not?

[Tombstoner]

My husband has Hep. C, genotype 2B. He found this out last summer by accident. We don't know what stage he is yet. He has no symptoms. We are trying to decide if he should go through the treatment or not. He can get the treatment through the VA since he is a veteran so cost is not an issue. He is on disability so he will still have income if he treats it. He already suffers from depression and is bipolar.  I have noticed that he has an enlarged abdomen. The doctor gave him a physical exam and did not notice any fluid wave on his liver. We are scared the treatment is going to be so bad he is going to die from it. I asked the doctor and she said no one has died in the 10 years she has been treating patients.  He is 49 years old and has had HCV for some time. He was drinking up until he found out about it.
I am looking into getting a job to help support us. Is it ok to leave him home to go to work? He wants me to be with him but the money is getting tight. We would like to have a baby but we can't do it if he is getting treated. But for me the most important thing is for him to be ok. We want to make the right decision. I have heard that the treatment itself is very hard on the liver. I am concerned that the treatment may do more harm than good. But on the other hand if he doesn't get treated, will he be able to live a long life? Since he has type 2 he has a 50-90% chance of getting rid of it. If the treatment doesn't work, is it going to cut his lifespan short since it is bad for the liver? If he would sometime need a transplant, would he be able to get one or do people die from waiting? I don't know how long the transplant lists are for livers.
Right now we are leaning toward getting the treatment. He has two advantages being that he is on disability and is a veteran. Does anyone have any advice? How did you decide to get treated or decide against it? Thanks.

[Tombstoner]

My husband also says he has trouble losing his breath sometimes. He doesn't have any other symptoms. His liver enzymes are not elevated. He has an enlarged abdomen and I am wondering if that is from an enlarged liver or if it is just from gaining weight. Do either of you have any spider veins on the skin over the liver? He has one little one. One doctor told us it from the liver being enlarged, one doctor said it probably wasn't related. He is going in for his biopsy on March 3rd. He was diagnosed in August and at this point he just wants to get the treatment started. We are scared too, and I am trying to get all the information I can. Being a 2B, are optimistic about the outcome but worried about the treatment. Wed, yes I think you should take the treatment. You do have the 50% chance, it's better than 15% like it used to be and least if your body doesn't respond to it, you have the chance of healing your liver.

"va will be a big help when you decide to treat, especially b4 and during tx."
I am concerned that it will be too hard and they will take him off of it, being that he already has depression and is irritable.

[kcrandy]

you guys are heading on the right track.  keep on the doc about info he or his practitioner can give.  all the literature you can get your hands on will benefit you while you are going thru this.  i say this mostly because each person does react in different ways and different side affects with this disease b4, during and after treatment.  if you believe your hubby is having serious issues that need adressed share them with the doc.  va has better staff to deal with these issues ecpecially with the men coming home with psych issues. va will be a big help when you decide to treat, especially b4 and during tx.

please keep us informed as you can see we are all in this together and want to see you make it thru the process.

[wed1942]

Hi!
I just found out in Nov that I have Hep C, genotype 1, stage 3-4.  I have absolutely no symptoms except that I have trouble getting a deep breath some times. I found out having routine lab work done and when I found out that my liver enzymes were elevated I was sent to a GI doc and the rest is history. My liver is enlarged. I do have some cirrhosis. I have been to a GI doc and a hepatologist. They both have different takes on treatment. The GI guy says that the type I have doesn't respond to treatment well and kinda has left whether or not I want to treat up to me. The hepatologist says that 50% of the people respond and that I need to start treatment. I like his attitude better. I want to do whatever it takes to lick this bug. It's a hard thing to grasp when you don't have symptoms. A lot of my labs have come back out of whack so the more that come back abnormal, the more I realize that something is going on. In reading through different things on this forum it seems like everyone responds differently to treatment. There seem to be lots of things you can do to help with the side effects of the treatment. I'm taking notes so I'm prepared if I do have some of these problems. I haven't started treatment yet but will be talking to the doc about this probably next week. He wants to do one more test before talking about it. I'm having an endoscopy on Tuesday. That's where they put a scope down your throat to check for any weakness in the espohagus wall, stomach, etc. I'm figuring he wants to make sure I won't have tendancies to bleed there with treatment because the treatment can lower your clotting factors and your blood count. Actually, the Hep C has caused my platelet count to be lower already. So it's something to watch. Anyway, I think all of us are afraid to some extent but I also tell myself that it's out of my control and that someone bigger than me is handling the end result, whether it is from the Hep C or anything else that might get me. All I can do is follow what the docs say and comply with the treatment plan. I definitely won't ever have another drop of alcohol. I never really drank much anyway. Maybe three or four drinks a year and that was usually a Kahlua and cream that was mostly cream. So won't miss that. Feel sorry for those who really have that need to consume. Anyway, hang in there.

[Tombstoner]

I made a mistake in my last post. When he first got his viral load checked he was at 18,400,000 instead of 14,400,000. I am thinking that the reason his viral load went down so much is because he quit drinking alcohol. The doctor told us that alcohol is like throwing fuel on the fire.

[Tombstoner]

We have an appointment next week for consultation to get a liver biopsy. The doctor he is seeing now at the VA is a hepatitis C specialist. They will then send the results back to her about whether or not they recommend treatment. Do most people get an enlarged abdomen when they have chronic hepatitis C? Does the swelling give any indication as to what stage his liver could be in? He has had his liver panels done quite a few times. His liver function tests always come back normal. When we found out about it, his viral load was 14,400,000, then they went down to 10,000,000, then back to 11,000,000. He took the liver cancer test twice since August and there is no sign of cancer. As far as I can say without the biopsy results, there is no immediate need for us to take action but I think he should get his treatment as soon as possible so that he has a better chance of getting rid of it.
I am worried about him turning suicidal or giving up. Already he thinks he is going to die from it, as I guess probably everyone has felt when they find out and hear how bad the treatment can be.
I notice that you both had stage 3-4. Did you have any symptoms at this stage? I know there are no symptoms sometimes, but on the other hand I've heard of peoples' eyes and skin turning yellow, etc. How did you both find out you had hepatitis C?
What can the side effects be after treatment? Does a person return to normal after treatment?
I am glad you had yours treated successfully, jmjm530. And kcrandy, don't give up. Even though they said it might not work, jmjm530 had the same type and stage and he got rid of his.

[kcrandy]

first, welcome to the group.

i am a vet and i just finished tx in dec 2007.  i was diagnosed with hep c geno 1a with stage 3-4 fibrosis and cirrosis with fatty liver issues to boot. i was told by va that my chances of succesful tx were not good but with me researching hep c and getting soom good advice from some good people in this group i have made it thru tx and pray i have achieved a sustained viral response, which will mean my liver will have a chance to heal itself, they say the liver can heal after succesful tx up to apprx 50% of were it was b4 tx.

forgot to say i am 51 yrs young and i to want to live a little longer.  i do not know how serious your hubby's situation is until you have more test done, but i would definetely ask va if they have a hepatologist on staff or a knowledgeable gi doc to take your hubby's case on.  the va here in kansas city has a hepspecialist dr pandea and if you are not sure call the one in kc and leave a message for him about your situation and he will be able to guide you too.

i too went thru the very same emotions your hubby's going thru and thats what made me do more research and ask more questions. at least your hubby's is getting psych help thru va and they can help him as well to make it thru tx.  stay with this group and try to get your hubby to sit with you while you are on here and try to get him involved in discusions too.  the more you both find put about hep-c i think you will feel more at ease.

finally the most important thing is to get liver panel done, blood work, biopsy, and viral load. and start your new journey towards recovery.  i hear that geno 2's have the highest success rate for tx.

please let us no how it goes and keep us all informed or if you have any questions.

may my higher power be yours.  : O )

[jmjm530]

Your husband is a lucky guy to have such a loving and supportive wife. You asked some really great and important questions.

Tomb: We don't know what stage he is yet. He has no symptoms.

Hepatitis C often doesn't present symptons. Your husband probably should have a liver biopsy to determine what stage damage he has. This will also help both of you to decide whether or not he should treat now.

Tomb:. He already suffers from depression and is bipolar.

Treatment can make depression worse. We’ve had people here treat who were bipolar but it presents its own set of problems. You will definitely want to discuss this specific issue with both your liver doctor as well as a psychiatrist or psychologist who understands the treatment drugs and their effect on depression.

Tomb: The doctor gave him a physical exam and did not notice any fluid wave on his liver.

Did your husband have an ultrasound yet?  If not, he should have one as part of the diagnosis.

Tomb: I am looking into getting a job to help support us. Is it ok to leave him home to go to work? He wants me to be with him but the money is getting tight

Because your husband suffers from depression and is bi-polar, your decision to stay at home or go to work may end up being more of a psychological decision than anything else.   I say this because many of us are able to work on treatment although sometime the work load is reduced. And those who do have to stay alone, in most cases can make do by themselves. While not easy, I fell into that category and did get by.

Tomb: I have heard that the treatment itself is very hard on the liver. I am concerned that the treatment may do more harm than good.

Except in rare cases, the treatment drugs are good for the liver, not bad. Especially if treatment works. That said, the drugs can be rough on the rest of the system and side effects can sometimes be difficult even after treatment. You will want to study up on them in advance if he does treat. You will also want to be prepared for anger/mood changes which are often common.

Tomb: Since he has type 2 he has a 50-90% chance of getting rid of it.

Since he’s a geno 2, in general, probably closer to 80% chance.  

Tomb: We would like to have a baby but we can't do it if he is getting treated.

Ribavirin, one of the treatment drugs can cause birth defects. For this reason you cannot conceive a child during treatment or for six months after treatment. Because of this two different forms of birth control are recommended during this period.

Tomb: If he would sometime need a transplant, would he be able to get one or do people die from waiting?

You’re getting much to far ahead of yourself here. First get that biopsy. Treatment results these days are better than ever and newer drugs potentially even better than that. As the saying goes, most people would die with Hepatitis C, not from it.

Tomb: Does anyone have any advice? How did you decide to get treated or decide against it? Thanks.

If the biopsy shows significant liver damage, you probably will want to treat soon.
If damage is light or moderate, you have a choice – either to treat now, or to what we call "watch and wait" which is basically to periodically monitor the condition of his liver and lead a liver-healthy lifestyle.

No cut and dry answer here and you will probably want to have more conversations with your doctor and do more independent research before reaching a decision. Is your doctor a liver specialist (hepatologist)? That would be ideal.

As for what I did – I treated successfully almost two years ago. I was a genotype 1 and was told I was between stage 3 and 4 at the time, which is considered significant liver damage. My treatment ended up being 54 weeks.

BTW as a first time poster, you should know that most of us here are patients, not doctors, so our opinions are just that. The best thing you and your husband can do at this point is spend a little time learning about both Hepatitis C and the pro's and con's of treatment. From the way you describe your life together, I have a feeling that things will work out just fine.

All the best,

-- Jim