Hi..I'm new here.
I'm 48 years old and have had HepC for probably 30 years. I'm healthy
and in good shape. My ALT, AST etc is very stable..just a minor
elevation, and I suffer from no symptoms. In mid-2001 my viral load
was 580,000. My genotype is 1B. I've been followed by a hepatologist
for about 10 years. My liver ultrasounds have been stable for that
time period. I have a few minor esophageal varices.
After a lot of thought and discussion, and after waiting for the
treatment and outcomes to improve, we finally decided to start. I
started last week on Pegetron (Canadian name), so today is Day 6.
Yesterday was my best day. As I always say, being a pessimist has it's
advantages, because I actually feel better than I thought I would. I
was afraid I may not have been able to get out of bed the first
morning. I did wake up in the middle of the night with a headache,
then a stomach ache, and the first few days I was achy, nauseous and
tired. I had a low-grade fever. My employer is allowing me to take
Fridays off as often as I need to.
Any comments, feedback, suggestions or resources would be appreciated.
I'm sure I'll think of many questions for you all.
Thanks very much,
David
Dwight - 04 Jul 2006 01:00 GMT
> Hi..I'm new here.
>
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>
> David
David, welcome to the group. Some people seem to go through tx without
many problems while others have a great deal of problems, hopefully
you'll be one of the lucky ones. My first round of tx I went through tx
with few to no noticeable side effects. My second round was a little
rougher, but manageable. I hardly missed any work either time. If you
have questions this is a good place to come, but remember your doctor is
probably your best source of information. I say "probably" because there
are a few quacks out there, and combined there is a lot of practical
experience here in the group. Like with all families we do have our
disagreements here and you'll have to decide for yourself which opinions
you want to believe. Don't hesitate to ask questions, no matter how
minor or major, someone here will probably have an answer for you. Good
luck and once again, welcome to the group.
Dwight
greyhackles - 04 Jul 2006 02:32 GMT
>Hi..I'm new here.
>
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>
>David
Welcome to our little disfunctional corner of the world, David. Sorry you had
to seek us out, but glad you found us.
For your middle-of-the-night stuff, taking an extra-strength Tylenol an hour
before my Friday Night Shot would get me through 'til morning without too much
in the way of side effects. But I'll tell you now, for the first 40-odd weeks,
Friday was my "good day", when I could actually eat something substantial and
enjoy it. The rest of the week was pretty much crapola, but I soldiered
through it, keeping an eye on the prize, so to speak (yes, therapy worked,
I've been undetectable for over a year now).
You'll likely go through various phases of side effects, but hopefully they'll
be relatively minor for you. There's the thinning of the hair thing, the
weight-loss thing, the skin rash thing, the "Riba Rage" thing, and then we get
into the real hard core stuff, crashed Neutrophils (WBCs), anemia to varying
degree, etc, etc. All of those go away once you've recovered from therapy:
the hair comes back, the skin clears, the Rage mellows (and in fact you may
find you've re-examined your life's priorities after surviving therapy) and
the blood restores.
Resources? You could do a lot worse than to Google this group's posts for the
last couple of years and pick topics that interest you. Otherwise, there's a
ton of web sites that, together, provide a wealth of information. For a few:
www.hcvadvocate.org
www.medscape.com
www.hepatitis-central.com
www.medicinenet.com
www.hivandhepatitis.com
www.hcvinfo.com
And in particular, this file is about the best I've read on the subject:
http://www.californiahcvtaskforce.org/pdf/HCV%20Clinical%20Pathway%20S.F.Version4.PDF
It ought to be mandatory reading for patients *and* professionals alike.
Otherwise, the most productive thing you can do is ask every question you
have, either here or when you're at your doc's office, or both.
And speaking of questions: driven by my curiosity as a fellow g-1B, and
related to your g-type: are you in BC? I ask because 1B's that have been HCV+
for 30+ years seem more prevalent on the west coast of US/CA - and
particularly the Northwest corner of our continent. I'm just wondering if you
fit the same model.
Anyway...I am also a practicing Cynical Pessimist, so I totally understand
your mind-set. Heck, if I wake up in the morning, it's a great day :-) Even
though I had a profoundly good early viral response (I likely cleared within
the first four weeks), all the way to my 6 month post-therapy viral load check
I was convinced therapy had failed (for a variety of symptomatic reasons,
which turned out to be unrelated to anything to do with my liver).
I was - stunned - when the last post-tx VL check came back undetectable.
So, good things happen, but not without effort: you definitely want to make
sure your doc will make a best-effort to treat your side effects before
resorting to reducing your anti-viral meds. That may mean prescribing Procrit
or Epogen to boost your Hemoglobin/RBCs, or Neupogen to boost your
Neutrophils/WBCs. I was on Epogen for 36 weeks because of severe anemia, but
it allowed me to maintain the full dosage of anti-HCV meds for the full 48
weeks. I wouldn't have made it without the Epogen, I'm sure.
Cheers - and again, welcome to the group
/greyhackles
dortski - 04 Jul 2006 04:19 GMT
> Hi..I'm new here.
>
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>
> David
Greetings David,
Dwight and Greyhackles summed things up nicely. Not much to add but drink
more water than you think you possibly can...and take your vitamins! Folic
acid will help keep the blood counts up...to a point. So while you feel
good, do good for your body. Kill that dragon!
dort
Ally - 04 Jul 2006 04:57 GMT
Welcome to the group David,
Seems everythings been said. I just wanted to tell you I'm in my 13th
week of tx so you know you are not alone, in fact, many here are also
in tx. There seem to be similarities but also a wide variety of sides
so I found I can always find someone who totally relates to what I
happen to be going thru at the time. I want to reiterate the "ask
questions" suggestion as the knowledge here seems to be vast and if a
question can't be answered, links are a plenty.
Ally
anonymousone - 04 Jul 2006 07:02 GMT
> Welcome to the group David,
>
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>
> Ally
Similar to me except I'm 56 not 48. Side effects can vary.And good
things do happen as Greyhackles noted. I became undetectable at week
12 and side effects have been very tolerable. Im at week 16 now. Dont
know if Im 1b but Im definetley genotype 1
And if your the praying sort, it can help.
All the best
Ted
elmoemerson@webtv.net - 04 Jul 2006 13:47 GMT
Welcome to the group, David. Hope your efforts get you the desired
results. You're from Canada, eh?
elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Paul - 05 Jul 2006 00:04 GMT
On Mon, 03 Jul 2006 23:44:54 GMT, David Michaels
<jumpinjive@yahoo.com>, in message ID
<0qaja2pqi7lnbelun71r2afbjhv2g9l9aj@4ax.com>, in the newsgroup
alt.support.hepatitis-c wrote:
>Hi..I'm new here.
>
[quoted text clipped - 23 lines]
>
>David
Welcome to the group David. Glad you found us but sorry you needed
to. For me personally, the best thing for nausea (apart from throwing
up :-) ) , was to sip water.
Another internet resource can be found at www.delphiforums.com .
Plenty of hep-c forums there including live chatrooms and
comprehensive message boards.
As you have some varicose veins around the osophagus, it sounds like
you are probably right to treat this disease. You make no mention of
a biopsy. I assume you have had one if you have been with a hep doc
for 10 years? If so, what did it reveal please? Any cirrhosis?
Best of luck with the tx. I was a half pinter (24 week tx) due to
genotype. It worked for me. Hope it works for you too.
Jack Black - 05 Jul 2006 17:24 GMT
Hi David,
Your case sounds very similar to my own. I've started treatment (again) and
am now in week 9. I'm not working at all this time but I think work could be
a good thing if it helps the time to pass a bit quicker. Depends what you do
at work and how you feel with the sides. I found it hard to do my job as it
requires a lot of thought and concentration. It's good that you can take a
day off when you need to but it may be hard to get your worst day to always
be a Friday. What day do you inject? I'd think about injecting Thursday
night, giving you Friday and the weekend to get over the worst of
it.(assuming you're on Peg Interferon 2b).
cheers and good luck
Jack
> Hi..I'm new here.
>
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>
> David