A question for those who did not know they had hep-C lurking for many years. - Hepatitis Message Board

AliceBlueBelle · 07-18-2003, 06:56 PM

I was wondering how long a time between finding out you had hepatitis antibodies and actually having additional tests run to verify the results and how involved the liver is?

-Alice

Wes1212 · 07-18-2003, 08:01 PM

i had complaints of pain, fatigue, numbness for a few years at a certain clinic and was tested for hepA, and B. (1996) A year later i was at the same clinic but different doctor who apologized for not testing for hep C. She said my bloodwork was classical symptoms of HCV.

The test came back positive, i was referred to a GI who ran another test and then a biopsy a month later (1997,). The gi doc said i was positive for hcv but biopsy showed only mild inflammation and that the current treatment was not worth persuing. he said i could wait 5 years for a better treatment.

In Feb 2002, my gi doc said new meds were out that was worth using. No other biopsy or testing other than bloodwork. I began PegIntron therapy in august 2002.

i was floundering through therapy until a car accident in feb 2003, caused side effects to go out of control. we discontinued therapy at 32 weeks when the target was 48 weeks or longer.

[This message has been edited by Wes1212 (edited 07-18-2003).]

Robyn_Fla · 07-18-2003, 08:21 PM

Hi Alice,

Can you clarify your question? I think I understand what you are asking, but if I am off the mark, please respond...

I had elevated liver enzymes detected on a routine blood donation probably around 1990 or thereabouts, and the blood bank recommended that I get blood work done by my physician, which I did. He also noted the higher than normal range, but whatever tests were available at the time (no HCV, that I know) did not diagnose the problem. Perhaps he ran the other Hep tests and they were negative, I don't know. I recall him telling me that it was just slightly above normal, and not to worry it was probably nothing (that alcohol or other factors could be the reason).

In any case, I am pretty sure that if a HCV test had been available at that time, I would have been diagnosed then. I suspect the most likely point of infection was during some risky drug experimentation in the early 80's (so about 20 or more years ago).

I am now 1a genotype with stage 1 fibrosis and inflammation. But I have also been drinking the whole time not knowing, so perhaps that is improving now that I have stopped. I don't have any symptoms that I can point to HCV for but perhaps a few minor ones could be attributed (but are also common in the general non-HCV population) like occasional migraines, UTI's etc.

Apparently, everyone has vastly different levels of infection and responses to the virus, so I am not sure how the empirical data relates to the general HCV population. I am somewhat concerned that while I *could* go on with this and even reduce the fibrosis with lifestyle changes, I could also find it worsening rapidly at some point in the future. I guess that chance, however slight, causes us to seriously consider treatment.

Anyway, I need to learn more about the statistics also so I know more about risk for the stage I am in. Some think it is pretty low, and that I would likely die from something else. If that's the info you were after, please share with us what else you find.

Hope that answers your question.

Take care,

Robyn

Avalon · 07-18-2003, 09:44 PM

Alice, if I understand your question -- in 2001, a new doctor told me to get tested for HCV after I told her I had had hepatitis in 1969. The blood test came back positive for Hep-C antibodies. Shortly after that, I had another blood test that confirmed I had Hep-C. I waited about 8 months before I got around to having the liver biopsy, in July of last year. It really was not bad at all. Hope that helps.

Avalon · 07-18-2003, 09:47 PM

Oops, just to clarify -- I meant, the liver biopsy wasn't bad at all, in terms of the procedure itself which sounded awfully scary when the doctor described it! (the fact that I have HCV IS bad, of course!)