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Medical Forum / Diseases and Disorders / Hepatitis / April 2004

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Starting treatment soon

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Sbordone - 11 Apr 2004 02:51 GMT
Hi all,
I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
years I had acute
hepatitis. Of course back then I was told I had chronic active hep. I'm
pretty sure I contracted it
by experimenting with i.v. drug use, so I make no excuses for my behavior
then. However even
though I have been "a good boy" for many ears I'm paying the price now in
declining health.
Originally when I contracted it I was living in the Boston area. I'm told by
one health care provider that I have
genome #3. By another provider that I have genome #1. In any event, whatever
the genome is I'm considering
anti-viral treatments to try and gain some measure of control over my health
problems.

I'm now living in Honolulu, and have been for about two years now, after
having a 20 year career in electronics
in California's silicon valley. I'm now divorced and living alone now and do
not really have any sort of family
support at all. I find all this a little frightening. When I was younger and
foolish I believed I would live forever.
I never thought I would find myself in my 50's overweight,suffering from
heart disease,(atrial fibrillation),
hip disease,(avascular necrosis), and some other minor issues not worth
mentioning.

In any event, up until recently I had rejected the idea of trying to treat
the hep, because I had so many other
problems to deal with. However my latest health care provider sincerely
believes I should start treatment
soon. They are starting another group of patients in late May or early
June.The doctor believes that many of the
problems I'm suffering from are related to having Hep-C, as it is a chronic
disabling disease.

Some times I check into this news group as a "lurker", and frankly this is
the first time I have "shared".
Much of the terminology and nomenclature eludes me, and i do not know what
the heck folks are talking about
much of the time.I understand there are some issues with taking anti-viral
drugs, however my doctor poo-poos
these problems as being in the minority of patients.They assure me that
within 12 weeks I should know whether
the treatments will benefit me. I do not know exactly what the drugs are but
I'm told that it will consist of
a weekly injection, and two pills a day.If after 12 weeks there is some
improvement, then the treatment should work
for me, and the whole treatment will take 24 weeks, and I will be virus
free.( I hope).
Some times I feel hopeful, and some times I do not. I sure would like to be
able to gain back a measure of fairly
good health so I can more fully appreciate the beauty that surrounds me
here.
In any event, there it is, I finally have spilled my guts, so to speak. I
would certainly appreciate any constructive input
my fellow netizens may have, and I than you for listening.(reading).
Incidentally, is there a faq for this group, if so I have not seen it.
So long for now all.
                  John in Honolulu
Russ - 11 Apr 2004 04:17 GMT
welcome John. I have type 1a, 41 weeks into treatment. I take one shot a
week of Pegasys (peg-interferon) and 6 x 200 mg of ribaviran a day. Along
with other meds I take a minimum of ten pills a day. I'm not counting pain,
nausea, sleep meds. I've pretty much have a constant annoying headache all
the time. Too the point of feeling cross and watery eyed. And I feel very
tired.

Before you start,  get your ducks in a row. I got most of my bills to "auto
pay" via credit card, and I pay the one card off every month. Saves me from
forgetting to pay a bill. I live alone, I find that to be easier as dealing
with people is hard sometimes. Even loved ones. These meds can mess up your
head a bit too.

Keep easy to make foods, stuff that you like. Some days I have to force
myself to eat.

If you have type one you will need to do 48 weeks of treatment. I'm not sure
about type 3. You should be able to look that up on the web or someone here
may know. Do your research, ask questions.

Anyway that's about all I have for now. Dont' mind the trolls. I guess some
people are born mean and meant to stay that way.

Keep coming back!!

Signature

Russ
Remove "NOSPAM" for replies.

> Hi all,
> I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
[quoted text clipped - 56 lines]
> So long for now all.
>                    John in Honolulu
Paul - 11 Apr 2004 08:17 GMT
On Sun, 11 Apr 2004 01:51:49 GMT, "Sbordone"
<sbordonej001@hawaii.rr.com>, in message ID
<Vw1ec.2823$162.1996@twister.socal.rr.com>, in the newsgroup
alt.support.hepatitis-c wrote:

>Hi all,
>I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
[quoted text clipped - 3 lines]
>by experimenting with i.v. drug use, so I make no excuses for my behavior
>then.

I probably got hep-c like that too.  My "experiment" was a long one.

> I'm told by
>one health care provider that I have
>genome #3. By another provider that I have genome #1. In any event, whatever
>the genome is I'm considering
>anti-viral treatments to try and gain some measure of control over my health
>problems.

You must get this sorted out John.  Geno 1 and geno 3 require
different lengths of treatment. (1 is 48 weeks and 3 is 24 weeks.).
Also, the ribavirin dosage may be different depending on the dosing
policy in your area.

> I'm now divorced and living alone now and do
>not really have any sort of family
>support at all.

I prefer to live on my own - especially while I'm on this treatment.

> I find all this a little frightening. When I was younger and
>foolish I believed I would live forever.

I AM going to live forever.  So far - so good. :-)

>I never thought I would find myself in my 50's overweight,suffering from
>heart disease,(atrial fibrillation),
>hip disease,(avascular necrosis), and some other minor issues not worth
>mentioning.

Some doctors believe that interferon can cause extra strain on the
heart.  Make sure your liver specialist is aware of this issue.

>In any event, up until recently I had rejected the idea of trying to treat
>the hep, because I had so many other
[quoted text clipped - 4 lines]
>problems I'm suffering from are related to having Hep-C, as it is a chronic
>disabling disease.

Hep-c can cause joint problems as well as diabetes.  The treatment can
too with some people.

>Some times I check into this news group as a "lurker", and frankly this is
>the first time I have "shared".
[quoted text clipped - 3 lines]
>drugs, however my doctor poo-poos
>these problems as being in the minority of patients.

I think that your doctor is being too dismissive of your fears.
Although it is true that the more horrible, permanent side effects
only affect a minority, the temporary side effects while on treatment
affect the vast majority.  Either way, I feel that if you want a
detailed answer, then your doctor should provide that.  However, it
would be easy to read a list of all *possible* side effects and be
scared into not doing treatment.

>They assure me that
>within 12 weeks I should know whether
>the treatments will benefit me.

They measure the level of virus in the blood before starting treatment
(tx).  They measure again at 12 weeks.  If the 12 week level is less
than 1% of the starting level, tx is continued as it is deemed to be
working.  If more than 1%, tx is stopped.

> I do not know exactly what the drugs are but
>I'm told that it will consist of
>a weekly injection, and two pills a day.If after 12 weeks there is some
>improvement, then the treatment should work
>for me, and the whole treatment will take 24 weeks, and I will be virus
>free.( I hope).

The weekly injection is of a drug called pegylated interferon.  The
pills are ribavirin (sometimes called copegus).  You state that you
will be taking two pills a day.  I think you may find that this is two
pills TWICE a day (with or just after food as they work better like
that).
You say that the tx will last for 24 weeks.  This would indicate that
they are calling it geno 3.  I am concerned about this as you stated
that another health provider said it was geno 1.  I cannot overstress
that you MUST know for sure which it is before starting tx.  If they
treat for geno 3 and you have geno 1, this would lead to you being
vastly under-treated in timescale and possibly in dosing requirement.
Treating geno 1 for only 24 weeks is extremely unlikely to clear the
virus.  It is only regarded as a 50/50 shot when treated for 48 weeks.
However, if you have geno 3, your chances of clearing are much better.

>Some times I feel hopeful, and some times I do not. I sure would like to be
>able to gain back a measure of fairly
>good health so I can more fully appreciate the beauty that surrounds me
>here.

Yes, it is a beautiful world - in spite of the way we treat it
sometimes.

>In any event, there it is, I finally have spilled my guts, so to speak. I
>would certainly appreciate any constructive input
>my fellow netizens may have, and I than you for listening.(reading).
>Incidentally, is there a faq for this group, if so I have not seen it.
>So long for now all.
>                   John in Honolulu

Hey John.  We are all here for you.  Apart from that, helping you with
your stuff takes my mind off mine for a while :-)
Signature

Paul

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Sbordone - 27 Apr 2004 10:34 GMT
Aloha and thanks Paul for your kind words.
You betcha I'll get definitive answers to all these questions
before starting a course of tx like this.
Man, it sounds like chemotherapy.
Mahalo Nui loa,
John

> On Sun, 11 Apr 2004 01:51:49 GMT, "Sbordone"
> <sbordonej001@hawaii.rr.com>, in message ID
[quoted text clipped - 118 lines]
> Hey John.  We are all here for you.  Apart from that, helping you with
> your stuff takes my mind off mine for a while :-)
Julie - 27 Apr 2004 15:39 GMT
> Aloha and thanks Paul for your kind words.
> You betcha I'll get definitive answers to all these questions
> before starting a course of tx like this.
> Man, it sounds like chemotherapy.

Thats what it is alright, just like chemo for cancer patients, but using
differant drugs. ChemoTherapy : the use of chemical agents in the treatment
or control of disease or mental illness.
Julie

>  Mahalo Nui loa,
>  John
[quoted text clipped - 130 lines]
> > Hey John.  We are all here for you.  Apart from that, helping you with
> > your stuff takes my mind off mine for a while :-)
heppiechik - 11 Apr 2004 14:35 GMT
Hey John,
Welcome to the group. Go for it !
hc (1b, 5 more to go)

> Hi all,
> I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
[quoted text clipped - 56 lines]
> So long for now all.
>                    John in Honolulu
BeatHepC - 11 Apr 2004 16:50 GMT
Welcome aboard the group, John. I'm a 1a who's about to do shot #10 this
evening. There are many good folks here - with lots of help, support and
information.

BeatHepC

> Hi all,
> I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
[quoted text clipped - 56 lines]
> So long for now all.
>                    John in Honolulu
Julie - 11 Apr 2004 23:04 GMT
Kick some virus a.s John!
Welcome aboard the wildest rollercoaster you will ever take,
Julie
PS
Shot two this coming Monday 5:00PM.
The dragon trembles at the thought.

> Welcome aboard the group, John. I'm a 1a who's about to do shot #10 this
> evening. There are many good folks here - with lots of help, support and
[quoted text clipped - 70 lines]
> > So long for now all.
> >                    John in Honolulu
Thip - 12 Apr 2004 00:28 GMT
Don't be afraid to ask questions!!!  We were all new once and nobody thinks
twice about answering.  And there's NO need to make excuses for how you may
have acquired the dragon.  It really doesn't matter *how* you got it--you
have it, and you need to kill it.  Treatment is scary when it's staring you
in the face, but you can do it, as so many others have. Good luck!

> Hi all,
> I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
[quoted text clipped - 56 lines]
> So long for now all.
>                    John in Honolulu
Anonymous - 12 Apr 2004 08:22 GMT
> Don't be afraid to ask questions!!!  We were all new once and nobody thinks
> twice about answering.  And there's NO need to make excuses for how you may
> have acquired the dragon.  It really doesn't matter *how* you got it--you
> have it, and you need to kill it.

But your *friend* Spokin said we have to take responsibility for our own
actions.

Your *friend* DT said we have to take responsibility for our own actions.

Your *friend* Lana said we have to take responsibility for our own actions.

Your *friend* Maryem said we have to take responsibility for our own actions.

Your late *friend* David said we have to take responsibility for our own
actions.

How is it that some of us have to take responsibility for our own actions, but
you don't?
Don - 12 Apr 2004 01:36 GMT
>Hi all,
>I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
>by experimenting with i.v. drug use, so I make no excuses for my behavior

Welcome, and good luck with your treatment.  Don't be put off by the
"lingo" used here regarding stuff dealing with the treatment.  In
preparation for and during the course of the treatment you get alot of
bloodtests to check how you're doing and treatment is pretty standard
depending on what genotype of HCV you have.  You'll want to be clear
on whether you have type 1 or 3 since type 1 requires 48 weeks unlike
3 which takes only 24 weeks (much better!) and chances of success are
better as well.  HCV can destroy your liver and probably is the cause
of a number of health problems so it isn't something you want to
ignore.  The treatment can be rough so some people like to hold out
hoping for something better to come along.  

I'm new here myself having recently found out I'm infected with
genotype 2 so I'm looking at 24 weeks myself.  They've established
some baselines like the count of the virus in my bloodstream, some
liver enzymes and other things and recently took an ultrasound to get
a picture of my liver and other organs.  My next step is a biopsy of
my liver which will accurately tell how much damage has been done.
Soon after that I'll be taking my shots and riba.  I'm eager to start
because of the chance to be free of the virus but wary because I know
so many people have a hard time with this.  But you being in paradise
should make things nicer.  Kill the dragon and move on with your life.
That's my goal.
AlanC - 27 Apr 2004 22:11 GMT
> Hi all,
> I'm a 53 Y.O man and apparently have hep-c since about 1972 or 74. In both
[quoted text clipped - 56 lines]
> So long for now all.
>                    John in Honolulu

John,
Try to take a common sense approach to treatment. Eat properly, drink
lots of water and most importantly get a moderate amount of daily
exercise. You may want to get the heaart issues well managed before
you start as heart attack and angina is a listed side effect. Due to
RBC (red blood cell) decrease I think. You  will also hear the
extremes of side effects and there treatments in this ng. The ones
having the hardest times are more likely to post-the lunatic fringe.
Try to stay away from the sleeping pills, and antidepressants as they
may cause problems after treatment. I took a vacation to Costa Rica
for the first 3 months but since your already in Honolulu can't see
much point-lucky bastard. There was a guy talking about avascular
necrosis which he claimed was caused or worsened by treatment. Seemed
like the cause->effect wasn't clear but you may want to look into
whether treatment will worsen your hip problems.

Good luck, Alan
 
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