Questions regarding Hep C and lack of progression.

[jaz1314]

Hepatitis C is a very strange disease. I am very fortunate not to be progressing but am curious as to why. Ive seen other people with poor prognosis, in fact my ex's husband had a transplant two years ago and now the new liver has been deteriorating and he looks 9 months pregnant (Acites (ascites)) after having been drained just a couple days ago at Philly. Anyway my history...

1970's I was a drug user for a few years, speed, cocaine, heroin..what a mess. 1979 I jaundiced and went to the hospital where I was diangosed with hep B. from 1980 on I was clean except for enjoying my wine at night (2-3 glasses) . My liver enzymes were always double what they should be. In 1989 I had a polyp observed in my gall bladder and ended up having my GB removed, durng that procedure I had my first liver biopsy.

The results of the biopsy were portal inflammation and some fatty infiltration but positive for Hep C. I wonder if the 1979 diagnoses was correct.

I did an intereferon treatment for 6 months where my viral load became undetectable. After stopping treatment the viral load came back to 300,000. A couple years later I repeated the treatment, same results.

I didnt pay much attention as I always felt good! Lots of energy, no symptoms other than the high liver enzymes. In 2001 the biopsy was repeated. No change. No cirrhosis, no cancer, jsut portal inflammation and some fat infiltration. Doc suggested Intereferon again with Ribavin. I tried it and stopped after two weeks, I felt HORRIBLE!

Had blood work done last year and viral load was now 1 million.
Genotype 2

So now I had a surgery to correct GERD ( Nissen Fundoplication ) and had them do antoher biopsy. Results are:


Chronic portal triaditis, suggestive of chornic hepatitis
Steatosis
Iron stain shows normal reticulin pattern
Trichrome stain shows mild lobular and portal fibrosis without bridging or evidence of cirrhosis.


So being 46 and having had chronic hepatitis for 27 years and fairly good biopsies, my questions are:

1) Should I really be concerned anymore? One GI who reviewed my original to present biopsies told me I would die of old age first! Is he being unrealisitic?

2) Why me? Not to sound ungrateful but what is it about me, my body, my life style that keeps this virus from destroying my liver after all these years? Ive always been told to stop alcohol intake completely but never did. (I am NOT recommending that anyone NOT stop!)

3) What causes some Hep C to be "active" as compared to "chronic persistent"? Is that something that can change?

4) Are there newer treatments in clincial trials that are producing better resutls than the current standard of Intereferon/Ribavin?


Thank you

Jaz

[Kevin Pho, MD]

To answer your questions:
1) There is evidence that the disease may not be progressive in some patients.  Some studies have shown that a progression to cirrhosis does not occur in some for 30 to 50 years.  The reasons for this is not completely understood.  Some point to host factors (i.e. race, cellular response, etc.), alcohol intake, or characteristics of the virus itself.

2) As mentioned above, various host factors may prevent progression.  The effect of cytokines, race, cellular immune response, body mass index, and fatty liver can all have effects on the progression of the disease.

3) The mechanism causing heptatis C to be active vs chronic persistant is not completely understood.

4) Pegylated interferon and ribavirin for chronic hepatitis C is currently the standard of care.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[Kalio1]

I look forward to the docs answer to you. No one knows specifically why some progress and others don't although there are various theories. Genetics probably plays a big role.
I know some issues can be a result of Hep C, for instance many have gallbladder issues and GERD issues. Some develop diabetes and other illness, it is a pretty long list. You are at higher risk for other diseases, certain lymphomas for instance. Hep C is a blood disease and it can effect more than your liver. I have heard that said also, that you are more likely to die of something else but that something else could be linked to having had the Hep C virus all those years.
I would be leery of consuming 2/3 glasses of wine daily or any alcohol at all as alcohol is an accelerant to the virus, it is like pouring gasoline on a fire.
You gave treatment a good try and if you keep close tabs on your health and monitor your CBC's, the new drugs being developed do look promising and given your history I would be optimistic, but we do not know the who/when/why definitively, at least not from my research.
I also have Hep C, have relapsed and I am treating again, so I am not very confident that I will beat it, but pin my hopes on the new drugs and decent genes.
good luck to you

[jaz1314]

Hi Kalio1

How long has it been that you believe that you were infected with Hep C?

Also, if you dont mind me asking, how did you contract the virus?

What are you viral loads and have you seen them change over time?

Do you feel OK like I do or are you sick?

All my best

Jaz

[Kalio1]

My case is pretty unusual in that I can pinpoint when I contracted it through bloodwork that was taken regarding another condition, ie back surgery. I have had the virus only a few years. I was having spinal injections of steroids to control back pain. Became really ill and eventually my doc figured out I had picked up Hep C.
I have no other known risk factors, no drug use in the past, no tattoos, etc. and this is the only possible explaination seeing as how I did not have it prior according to my bloodwork. Not that I am an angel or anything by any stretch of the imagination! I did completely stop alcohol when I was diagnosed last May, but I was feeling so bad I didn't feel like drinking anyway.
By the way, I am Female, 50 and genotype 3a. VL at start of treatment last Sept. ws 730,000. After relapse 10 days ago it was 9,000. In between I was undetectable on treatment.( a lot of good that did me!)

I felt horrid and was quite ill with a variety of ailments that were Hep C induced, which is why I am treating. I was off treatment for two weeks and felt GREAT, but I am back on it now so I can't say I feel too swift. I have heard many say they feel better after treatment even though they didnt clear the virus.
It is my understanding it doesn't help to monitor VL as it fluctuates and the only time it is relevant is when you are planning to treat because that is the measure by which they can tell if the treatment is working, otherwise the info doesn't do you much good, and I don't think VL correlates at all with liver damage level. It is a good idea to monitor your LFT's.
I do think seeing as how you have had it a long time and show little to no damage you are probably fine to forget it, monitor as instructed and when the better drugs are available maybe give them a go to rid yourself of it if you decide to.
I am glad to hear you feel good, that gives me hope should I relapse again. If I feel ok, I guess I can cohabitate with this virus if I must until something better comes along to eradicate it.

You can speak to many others and ask questions at the MedHelp Hepatitis Forum also, you can find it by clicking on "Hepatitis" on the main page. There are a lot of Hep C saavy people on that forum who know a lot more than me and are very supportive.
take care and good luck to you.
K.

[hep62pj]

i have hep c too, i was iv drug user (mostly heroin) back in the early 80's... i wonder very much about progression also, especially since i have been a very heavy drinker most of my life...I know that I have had it about 25 years and I am 44 now.  I have treated before 6 months with peg & virimadine on a phase III clinical trial but I did not get rid of it.  My biopsy showed stage 2/grade 2 damage, i feel fine really except for occasional stomach problems and just recently internal bleeding hemoroids which are FREAKING ME OUT.  I had a colonoscopy last July and everything was fine, except for hemoroids so that is some comfort, it was alwasy  just a bit of blood before but just recently it is ALOT, have an appt with my GI doctor in a few weeks

post this question on the hepatitis c area of the site and you will probably get many more replies...