Hep C - a long time

[Susan from NY]

I have probably had hep c for about 35 years. Am btw stage 2 & 3 on fibrosis, grade 2, alt and ast btw 60 and 92, geno 4a, failed treatment with Pegays and Rebetol. Viral load just under 1 million. Doc says will most likely die with not from hep c. I am 59.Maybe I will live but I don't want to get sick and feel awful.

Prognosis please - I am scared. Right now feel fine and I work full time. I do not drink at all. Was a drug and alchohol abuser-very bad, then stopped 21 years ago.

Again-Prognosis please am still scared to death and very depressed about having the hep.


Thank You,
Susan

[cuteus]

hello there! please post your concerns in a newer thread so that more folks can read it.  
at stage 3, it is scary to have hep c. how long did they treated you? we just had a guy here posting his svr after three attempts, read the post by tonyz. best to you and family

[JamesM]

I am like Susan.  I am 30 years old with Hep C genotype 1A and have had it since birth due to a blood transfusion--now with a 3/4 stage fibrosis.  I've been  through 3 interferon trials with no success and am desparately searching for "safe" ways to treat.  I've heard that the "Protease Inhibitors" are going to be out soon, but like the interferon, I am a bit discouraged at these so called "studies" due to the side effects and lack of success.  I personnally feel that the numbers and side effects for many of these studies are exagerated and I don't want to deal with that again, even though I am reluctant not to.  

Many have recomended "natural" things such as Milk Thistle, live liver cells, etc however with those too, there are no studies to support that and those things could also cause harm.  

My wife tells me not to worry as much as I do, but let's face it, it's kind of hard not to.  Can anyone offer any input on new stuff?  Thanks!!

[jmjm530]

You have a right to be scared because no one really knows how fast this disease progresses in an individual. That said, statistically you're still very far from end stage liver disease, so your doc may not be wrong when he says you probably won't die from hep c.

As to how you will feel, I can only give you my case.

I got hepatitis C 38 years ago when I was 20 years old. I'm a genotype 1-B with grade 4/4, stage 3/4. The biopsy was three years ago so things might have progresed. Hard to say. My docs still feel I am "far" from cirrohis. These are their words.

When I started treatment 14 weeks ago, I felt fine physically and was very active in sports. In fact, I set an endurance record in    
one.  

I mention all this because I'm more advanced than you in my disease and I was the opposite of a physical wreck when I started treatment  -- but getting closer to being a wreck now that I'm on it. LOL.

If you didn't respond to Pegasys, you can either treat harder and longer with Infergen (I'm assuming they use infergen for genotype's 4's, I'm only familiar with genotype 1's.)  

Alternatively you can lead a liver healthy lifestyle, repeat your biopsy every two years, and wait for something better to come along.

I think most people here would suggest the former, but there are some very promising drugs that should be available in five years or less and I wouldn't feel pressured to make a decision today or tomorrow.

As far as mainteance is concerned, you might want to research it out, but I'm under the impression that they only use mainteance in more advanced cases like mine, where the fibrosis is at least stage 3/4 or if you have cirrohsis. The results of mainteance therapy are still somewhat controversial.

I notice from you're name that you're in New York. If you're in NYC, you should be able to get one or two more opinions from some good heptologists.

Good luck and keep us posted on how things go.

[Susan from NY]

Thank you all so much for rsponding to my post. I did not relapse form the treatmnet with Pegasys and Rebetol - I did not respond.

[cuteus]

it always irks me when they say you will die of something else,oh really! maybe that something else was caused by the chronic HCV infection and it will be listed in your death certificate as kidney failure or such, and will fail to specify that it was the hep c that precipitated this failure.  hep c is not listed as the cause of death, the complications are.  
Get a new hepatologist and consult with him/her your case. You could start by emailing Dr cecil at the hepatitisdoctor.com and asking him for his input. Dr Dieterich in the city is another hep c specialist worth trying.  I would not take the word of ONE doc as the final say. You are going by your gut instinct, follow that voice.

[Susan from NY]

sometimes I feel so damn alone with this thing I couod cry. Am so scared. How comedoc feels I will die with not from -how does one know. Have had for about 35 years and still feel OK. Does everyone who has this progress or can some people stand still?

[jmjm530]

Cuteus makes a good point regarding your response to the first round of treatment. Depending on what happened, will help determine what type of inteferon you would need the second time plus the length of treatment. Also, make sure you're dealing with a heptologist who is sophisticated enough to individualize treatments.

I also noticed, on re-reading, that you're not stage 2 but between stage 2 and 3. That makes the decision a little harder and I suppose most would advise to treat now. But it's still not the only choice. Gee...I wish I was only between stage 2 and 3. LOL.

[jmjm530]

Hi Susan,

You have a few choices.

You can re-treat with a more agressive approach, which usually involves a change or increase in the type of inteferon and/or a longer treatment period.

Alternatively, you can take good care of your liver with smart lifestyle choices, and wait for newer, more effective treatments with fewer side effects. Some expanded trials with protease inhibitors will probably be starting within a year and hopefully some of these drugs will be available to most of us in about five years.

You can also go on a low maintenance dose of inteferon, but this is still controversial and probably not warranted with with only stage 2 fibrosis.

Probably no right answer but I imagine part of the decision would be how well you tolerated treatment the first time.

In my case, I'm stage 3/4 and don't have much of a choice but to treat and re-treat if necesssary. If I was stage 2, my decision to re-treat (if necessary) would not be an easy one since I've had a rough time with the sides. (If I were a stage 1, I think I would have quit weeks ago regardless of my EVR. LOL. )

If you do decide to wait, make sure you're basing your decision on a recent biopsy, and have it repeated every 2-3 years to make sure there's no progression. If you biopsy is recent, you might get a consult from another pathologist, since interpretations can vary.

Another thing to keep in mind is your age and overall health. If you're otherwise healthy now, that might argue to take the medicine now as opposed to trying treatment down the road when you may have other health problems. On the other hand, hopefully the treatments down the pike will be less taxing on our bodies.(How do you say Ribavirin sucks. LOL.)

Not an easy decision but you're under no pressure to make it right now. You've had your hep for a long time and taking another few weeks or months to make a decision probably won't make any difference.

Take a little time, do some research, speak to another doctor or two, and make your decision when you feel comfortable in your choice. Good luck!

[cuteus]

Hi Susan, I am also in NY, and changed GI  3 times before completing tx.  Get a different dr.  I don't like GI with a non chalant attitude, That was the first one I dumped.
Did you Tx and relapsed or did you not respond? If you tx and responded, you can respond again and be successful. Make sure you get a practice willing to go beyond the standard, you are not a standard case.
1) get a new doctor
2) start a new plan of action, either to re treat or to do maintenance to prevent further damage