Entry 01: When I decided to start the treatment.

posted 2000-Apr-6
— updated 2000-Apr-10

2000-Mar-14 : For those interested--I finally got the doctor to call me back after getting ahold of the slide from the 1994 liver biopsy, ranking it according to the new measurement criteria, and comparing it to the current biopsy.

To recap (and new info for those just joining us), there are two measurements, one for 'activity' (how inflamed the liver is in fighting diseases) and 'fibrosis' (how scarred it has become from fighting the virus).

Measurements are from 0 (no damage) to 4 (bad bad news).

activityfibrosis
19941-22
200022

Direct comparison shows that there has been a little more scarring done ('nothing worrying or serious') but there has been a rather noticeable increase in activity.

From this information, my doctor even more strongly recommends that I go ahead with the treatment, and I've decided to do it.

Asking him a few questions, I got clarification on a few issues:

  1. Liver Enzymes tests (ALT counts) are taking from blood tests and may occasionally spike even in a healthy person, and this spiking is on the order of days. (It may be way up one day and normal the next.) This is why ALTs are no good at measuring liver health compared to a liver biopsy.

    I asked the doctor whether or not a similar situation occurred in the activity/inflammation of the liver. He said that while it may vary and spike, it does so on the order of months, and so is indicative of a lasting problem.

  2. I asked the doctor whether, given a successful treatment which eradicates the HC virus, the scarring I've accrued in my liver will be detrimental to its functionality. His surprising answer was "Not at all." He says they've even seen liver regeneration over time after successful tests.
  3. I had been researching efficacy rates for the treatment, and I think I had told people that I'd seen a 14-40% success rate for initial treatment, and a 70% success rate in those who failed the first treatment. This is true but misleading:

    Normally the best treatment gives a 35-40% chance of total recovery. However, with genotype 1 HCV (which is what I have, is the most common, and is the hardest to treat) it is actually lower: 30-35% chance.

    The 70% number applied to those who had undergone treatment with just interferon (since it was all that was available until recently), had been beating the disease while on interferon, went into remission after stopping treatment, and then were re-treated with Interferon+Ribaviron (the current best treatment). So that doesn't apply to me.

    The number which might apply (hopefully not) is that those who don't respond to the treatment the first time around have a 25% chance of it succeeding the second time around.

SO--when do I start treatment? I don't know, yet. I'm aiming for 1-2 weeks, after I return home to MO. It messes up a lot of plans (like the desire to start a small IRP branch office in STL) but people say that (for those who can stand the treatment) it's worse in the first few weeks, and I want to try and get those really bad weeks out of the way before the summer starts. Definitely not looking forward to it, but the hope is a) that I'll be one of the people whom it does not greatly affect once started b) that it will take hold and I'll continue the treatment for the full year (gulp) and c) that at the end it will work, and in doing so will completely wipe out the Hep C virus and I will never have to worry about it again.

Previously, with the interferon-only treatment, they were worried about treating people with normal ALT levels (like me) because the treatment might exacerbate the disease and turn normal-ALT people into elevated-ALT people. The good news is that with the Interferon+Ribaviron treatment, only 10% of people get elevated ALTs, which return to normal on stopping the treatment.

Cross yer fingers for me, and hope that all goes well in the coming year,

- Gavin
Alok
07:38PM ET
2000-Apr-06
Gav,
What are your lab values for your liver function tests...
both now and a few years ago???
Be sure to include units (or make sure the units are the same)
-alok
Gavin Kistner
11:25AM ET
2000-Apr-19
Sorry, things are still kinda cluttered here around the house in the aftermath of the main remodelling work, and so I haven't hunted down my medical journal to find these numbers. I will.
Pat
04:20PM ET
2000-Aug-25
Gavin, I live in St. Louis and go to Dr. Bacon at SLU. I like him a lot.
I have HepC 1a and I am on week 10 of treatment. I worked for the first 5 weeks, but now I am
on disability for awhile. Hope you do well.
Paula
11:17AM ET
2014-Feb-25

How are you now Gavin?

Gavin Kistner
08:54AM ET
2014-Feb-26

@Paula I am well, thank you. Liver function tests are still elevated, but last liver biopsy showed almost no progression in the previous years.

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