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Medical Forum / Diseases and Disorders / Hepatitis / June 2009

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bluz56 - 15 Jun 2009 14:47 GMT
Hello everyone, this is my first post.
I was told by my doctor 4 yrs ago that I had hep-c.
I started seeing a specialist 2 years ago and am now preparing for
treatment. (interferon/ribavrin)
They have asked me to lose some weight and mentally prepare for 48 week
treatment to start in Aug-Sep.I am genotype 3.
Somedays I feel very confident that I can handle this new adventure, but of
coarse some days I wonder if I'll have what it takes to get thru it. My only
other experience with news groups was for a panic disorder 10 years ago and
I am happy to say It helped me tremendously. I have many questions about
treatment and hope I will be one of the lucky folks who tolerate it well. I
live alone in nortwestern Ontario,Canada, but have loving family members
just down the street. I am looking forward to hearing from members of this
group who can help me with my confidence, and perhaps keep a smile on my
face.By reading thru some of the posts I see that many of you are extremely
knowledgeable about hep-c and the treatments. I have no idea what some of
the medical terms are that you are using but I'm guessing I will in a year
or so.
I am 54 yrs old. My name is Ken.
Thank you for your time
chuck - 15 Jun 2009 17:25 GMT
> Hello everyone, this is my first post.
> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 16 lines]
> I am 54 yrs old. My name is Ken.
> Thank you for your time

Welcome to the NG. Glad to have you here but sorry you have to be here. I'm
finishing week 16 of a 24 week course of treatment. I too was very
apprehensive when I first started but, for me anyway, the treatment hasn't
been the complete nightmare I had expected. It's been more like an
unpleasant dream. I tested undetectable at my 4 week viral load test and am
waiting for my 12 week results. Hopefully they will come back undetectable
too. I'll keep you all posted when I find out this Friday. I too live in
Ontario Canada and we are lucky enough to have a 24 hour PegCare line that
will address any concerns you have once you start treatment. I, fortunately
have not found it necessary to use this service yet. I may be wrong but I do
believe that the common course of treatment for type 3 is the same as for
type 2 (which is my genotype) and is 24 weeks. I would clarify that this is
indeed the case. An extra 24 weeks of treatment can be rather burdensome.
Well here's wishing you a good and early response to your treatment.

read this:
http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/
and also this:
http://www.docguide.com/news/content.nsf/news/852571020057CCF68525738D0072810A
bluz56 - 16 Jun 2009 14:04 GMT
Hello Chuck,
Thanks for the response.Could you tell me what "PegCare" is? Is that a chat
line for people in Winnipeg?yuk.Does it apply to all areas of ON.
Glad that thing are going well for you.
Cheers

>> Hello everyone, this is my first post.
>> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 37 lines]
> and also this:
> http://www.docguide.com/news/content.nsf/news/852571020057CCF68525738D0072810A
chuck - 16 Jun 2009 15:59 GMT
> Hello Chuck,
> Thanks for the response.Could you tell me what "PegCare" is? Is that a
> chat line for people in Winnipeg?yuk.Does it apply to all areas of ON.
> Glad that thing are going well for you.
> Cheers

PegCare is a 24 hour help line with RNs on staff , trained to understand
hepC and it's treatment. They are there to answer any questions you may have
about your treatment. They will also arrange for full or partial
reimbursment for the cost of treatment (1 pay $1973 for a 4 week course and
it is fully covered under my employer's drug benefit plan). They will help
you with contacting your own drug benefit provider (if you have one and
require help) and determine what percentage of your treatment would be
covered. If you have no coverage, full or partial coverage may be provided
by Ontario's Trillium Fund. It is based on income and varies from case to
case. In any case they will provide assistance with this. As for
availability, I believe it may be a service that is provided by the
pharmaceutical company my treatment specialist has prescribed to me. Other
pharmaceutical companies will probably have similar, if not the exact same,
service. Ask your treatment nurse about it.
bluz56 - 16 Jun 2009 17:35 GMT
Thanks Chuck,
I'm on the trillium band wagon, and my nurse told me not to worry and that
they have the budget for me. My employer went under and may not even pay out
our severance.This whole town is going under. Last year my deductible on
trillium was $1600.00 plus. They base it on the year previous income. This
year I guess I'm going to get some payback for that.If all goes well,the
start of tx  will be the end of Aug.
Cheers

>> Hello Chuck,
>> Thanks for the response.Could you tell me what "PegCare" is? Is that a
[quoted text clipped - 16 lines]
> pharmaceutical companies will probably have similar, if not the exact
> same, service. Ask your treatment nurse about it.
Thip - 16 Jun 2009 00:51 GMT
I have many questions about
> treatment and hope I will be one of the lucky folks who tolerate it well.

This is a great place for those questions, and the only stupid question
is the one you don't ask.  :-)  Write them down as they come to you and
post all you want.  Best of luck!
bluz56 - 16 Jun 2009 14:05 GMT
Thanks Thip,
Will do...
Cheers

> I have many questions about
>> treatment and hope I will be one of the lucky folks who tolerate it well.
>
> This is a great place for those questions, and the only stupid question is
> the one you don't ask.  :-)  Write them down as they come to you and post
> all you want.  Best of luck!
Dwight - 16 Jun 2009 03:54 GMT
> Hello everyone, this is my first post.
> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 16 lines]
> I am 54 yrs old. My name is Ken.
> Thank you for your time

You've found this place and it is a good place to ask questions. The
best thing I can tell you is to go into tx (treatment) with an open mind
and don't be too worried about it. The reactions to tx are as wide and
varied as the people who go through it. My first time through tx was in
98 and I hadn't heard any horror stories, come to think of it I hadn't
heard any stories at all about tx. The doctor warned me that there might
be some side effects, but I went through tx without any problems that I
can remember. The second time was a little rougher, but I made it
through it and am still around. I wasn't one of the lucky one's I never
reached undetectable. I will probably go through tx again some day, but
it won't be soon. My body has been pretty stable for the most part and
if nothing else tx has slowed the dragon down to a crawl. If you don't
have a good hobby, you might want to find one. Several of the people
here got me back into playing music and it has been a great distraction
both during and since tx.

I'm curious, does bluz56 have anything to do with music?

Dwight
bluz56 - 16 Jun 2009 13:23 GMT
Hello Dwight,
Thanks for the advice.Open mind it is.
Bluz56 has several connotations. #1-I have a blue,1956 Cadillac that I have
kept running and looking fairly decent for the last 15 years.
That's a hobby,but not for the 6-7 months of winter we get here. #2-I am a
huge blues fan and fancy myself a lyric writer.
That could be a winter hobby.I'm not as productive on the song writing as I
used to be, but I will certainly have some blues material developing in the
next year.
I've seen a lot of blues acts in my life and hope to see a bunch more.
I have co-written songs with friends who are prominent on the Canadian blues
scene.I look forward to telling you about it over the next while.
Cheers.

>> Hello everyone, this is my first post.
>> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 36 lines]
>
> Dwight
Thip - 16 Jun 2009 23:54 GMT
> Hello Dwight,
> Thanks for the advice.Open mind it is.
[quoted text clipped - 9 lines]
> scene.I look forward to telling you about it over the next while.
> Cheers.

Oh geeeeeeeez, we need Elmo!  Bluz, Elmo was a huge part of this group
for just about forever, but he slayed his dragon and eventually moved
on.  He's very much into blues (saw a pic of him once with Johnny
Winter, which had me green with envy) and you two probably would get
along famously.  Elmo, where are you???!
bluz56 - 17 Jun 2009 11:31 GMT
I saw Johnny Winter last year or the year before. He's been here twice, and
was all that I had expected and more. I like "Elmo" already Thip.
Cheers

>> Hello Dwight,
>> Thanks for the advice.Open mind it is.
[quoted text clipped - 20 lines]
> had me green with envy) and you two probably would get along famously.
> Elmo, where are you???!
Thip - 18 Jun 2009 01:06 GMT
> I saw Johnny Winter last year or the year before. He's been here twice, and
> was all that I had expected and more. I like "Elmo" already Thip.
> Cheers

Dang, last time I saw him was in the early 70's.  He had all that
fabulous long white hair then, and oh, did he play that guitar!!!  I
think "Second Winter" is just about my all-time favorite album.  I like
his other stuff, but he really showed out in his early days.
Paul - 16 Jun 2009 08:32 GMT
On Mon, 15 Jun 2009 09:47:52 -0400, "bluz56" <bluz56@tbaytel.net>, in
message ID <Ir2dnczT87mdzKvXnZ2dnUVZ_rednZ2d@tbaytel.net>, in the
newsgroup alt.support.hepatitis-c wrote:

>Hello everyone, this is my first post.
>I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 16 lines]
>I am 54 yrs old. My name is Ken.
>Thank you for your time

Welcome to this NG.
Sorry to hear that you have hep-c.
Genotype 3 is usually treated for 24 weeks rather than 48 as it tends
to be treated the same as genotype 2 (which I had).  However, there
have been rumblings that geno 3 is a little bit harder to shift than 2
and there were noises coming from some quarters to treat it for a bit
longer than 2 - though I don't know if anything came of that.  I can't
quote any medical sites on that as I don't know how valid those noises
were.
Anyway, treatment (tx) doesn't make brussel sprouts grow out of your
ears or make you grow an extra leg.
Most people find tx unpleasant, annoying, but doable.  At either end
of the extreme sometimes people's bodies react badly enough to be
taken off it and at the other end, there may be only minimal side
effects experienced.  The overwhelming majority are in that middle
ground though.
The good news is that geno 3 is easier to treat then geno 1.  There is
a greater chance of freeing yourself from the virus.  You do need to
discuss treatment length with your doc though.  I'm a bit out of touch
but there was talk of splitting the difference with geno 3 and going
for 36 weeks.  However, I don't know what came of all that or even how
authoritative that talk was.
bluz56 - 16 Jun 2009 13:32 GMT
Hello Paul,
The doctor I have, has spoken only of a 48 week tx. I will be better
prepared for my next appointment, I think I sat in stunned silence for most
of the last.I will be able to speak on the subject with more certainty
soon,I hope.
I am trying to get myself in better shape.I got laid-off over 2 years ago
and became more of a couch potato than I had been previously.Losing some
weight is paramount to countering some side effects.(i think)But dieting is
a bitch for people with a lust for life.ha
Cheers

> On Mon, 15 Jun 2009 09:47:52 -0400, "bluz56" <bluz56@tbaytel.net>, in
> message ID <Ir2dnczT87mdzKvXnZ2dnUVZ_rednZ2d@tbaytel.net>, in the
[quoted text clipped - 48 lines]
> for 36 weeks.  However, I don't know what came of all that or even how
> authoritative that talk was.
chuck - 16 Jun 2009 16:03 GMT
> Anyway, treatment (tx) doesn't make brussel sprouts grow out of your
> ears or make you grow an extra leg.

Just noticed last week that my arm hairs and my shoulder hairs have rally
gotten quite bushy lately. I don't know if this will last afterwards.
Waterspider - 16 Jun 2009 09:24 GMT
> Hello everyone, this is my first post.
> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 16 lines]
> I am 54 yrs old. My name is Ken.
> Thank you for your time
Hi Ken,

I just turned 55 and was diagnosed with hep C after having it for over 20
years. I live alone on the coast of BC, and I had genotype 3. Yes, had-- the
pegylated interferon & ribavirin treatment (we shorten it to "tx" here)
worked and I've been clear since finishing my 24 weeks in 2002. Or was it
2001? Anyway, the treatment was the hardest thing I've ever done in my life,
and the best thing I've ever done in my life. I was in poor health when I
started and had considerable liver damage, so I suspect that made my
side-effects worse than if I'd been otherwise healthy. Or not. Everyone's
experience is different, no rhyme nor reason. Everyone does seem to agree
that the first shot is the hardest, probably because everyone is scared
shitless the first time they inject the interferon.

Genotype 3 is considered winning the hep C lottery; it (along with geno 2)
is the easiest to cure and the protocol for tx is 24 weeks. Not sure why
they've got you down for 48, I'd confirm that. Genotype 1 is far more
common, and that's the 48-week cruise. I'm also wondering why you're just
lining up for tx now, four years after diagnosis.

In a month or so, I strongly suggest that you begin taking antidepressants
and continue through tx. The drugs do not do wonders for one's disposition
and sanity. Get all your chores done and plan on taking it real easy while
you're on tx. No new projects, no extended holidays, no stressful situations
that can be avoided. You're gonna be tired and cranky to say the least. Let
someone store your guns for you. Stock up on pot; it will cure any nausea
caused by the (other) drugs. Stock up on books, computer games and videos;
nobody feels much like socializing while doing tx, and reading is so much
fun... by the time you get to the second chapter, you've forgotten the first
so you can re-read the same thing and it's brand-new all over again.

Do some Google homework to learn about a healthy diet for liver disease and
stick to it. Sarah will tell you about drinking lots of water, and she knows
of what she speaks. Of course you know by now not to drink alcohol. Watch
out for bad science and snake oil... there is a bit of it floating around,
but we'll set you straight if we have the opportunity. Welcome to the Order
of Dragon Slayers, and now, what about those questions?

Waterspider
bluz56 - 16 Jun 2009 13:44 GMT
Not sure why
> they've got you down for 48, I'd confirm that. Genotype 1 is far more
> common, and that's the 48-week cruise. I'm also wondering why you're just
> lining up for tx now, four years after diagnosis.
I will confirm this at my next appointment,It is entirely possible that I am
wrong about that (and many other things)
Do you think they should have started the tx sooner or are they rushing me?

In a month or so, I strongly suggest that you begin taking antidepressants
> and continue through tx. The drugs do not do wonders for one's disposition
> and sanity. Get all your chores done and plan on taking it real easy while
[quoted text clipped - 6 lines]
> you've forgotten the first so you can re-read the same thing and it's
> brand-new all over again.
No one has mentioned anti-depressants to me in much
detail.Depression,yes,something to combat it,no!
Don't own any firearms,already got pot.Just to enhance the satellite
experience of coarse.
Water,water everywhere and only gallons to drink.Getting used to that now.
Cheers

>> Hello everyone, this is my first post.
>> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 56 lines]
>
> Waterspider
chuck - 16 Jun 2009 17:37 GMT
> Do you think they should have started the tx sooner or are they rushing
> me?
>clipped

They usually initially determine the need for treatment by your blood liver
enzyme levels (in Ontario anyway)

> No one has mentioned anti-depressants to me in much
> detail.Depression,yes,something to combat it,no!
> clipped

My GP said that antidepressant are to be used as a treatment for depression
not as a preventaion against depression. I think you may have to be
depressed before they will prescibe anti-depressants to you. I could be
wrong and it just may be my doctor. In any case, personally, I've noticed
some shortness of temper and some higher emotions than usual but nothing I
can't handle without adding another drug to my system. I currently use a
myriad of other drugs to treat a heart condition, exzema caused by treatment
and some sleeping difficulty also brought about by treatment.
Russian - 18 Jun 2009 00:30 GMT
> I think you may have to be
> depressed before they will prescibe anti-depressants to you.

That's depressing !

<g,d,&r>
Waterspider - 20 Jun 2009 04:38 GMT
>> Do you think they should have started the tx sooner or are they rushing
>> me?
[quoted text clipped - 16 lines]
> caused by treatment and some sleeping difficulty also brought about by
> treatment.

With respect, I don't think your GP knows a whole lot about treatment for
hepatitis C.

A prescription for antidepressants BEFORE tx begins is common protocol.
Antidepressants take at least several weeks to settle in to doing what they
should be doing, and often a type/dosage change is required. Depression is a
well documented, common and often severe side-effect of tx. Suicide attempts
have been noted, some of them successful. Tx-related depression is not
something to take lightly.
Suri Cruise - 20 Jun 2009 08:07 GMT
> >> Do you think they should have started the tx sooner or are they rushing
> >> me?
[quoted text clipped - 26 lines]
> have been noted, some of them successful. Tx-related depression is not
> something to take lightly.

I'd simply add that this experience is likely to be hard enough no
matter WHAT you try to do to mitigate it, please do not try to turn
your hep c treatment into a contest to see how much self-flagellation
you can endure. Need antidepressants and can't get an Rx because your
doctor is a 'tard? There are only about sixty billion websites
(www.airsealed.com , www.unitedpharmacies.com blah blah blah) to order
them from.

Please use whatever you need to get through this. Well, almost,
anyway;)

This morning I realized that despite having an exhausting week filled
with sleep deprivation I felt better than I had at any time during
treatment even while gobbling mass quantities of opiates & benzos...

Feels good to no longer be "living in Methadonia"...
chardonnay9 - 20 Jun 2009 14:29 GMT
>>> Do you think they should have started the tx sooner or are they rushing
>>> me?
[quoted text clipped - 24 lines]
> have been noted, some of them successful. Tx-related depression is not
> something to take lightly.

I got on antidepressants before treatment but I knew I was prone to mild
depression anyway. It did take a few tries with different types till I
found one I could tolerate. The problem is that whatever kind works for
one person won't work for another.

I was on Zoloft at a max of 200 mg a day. Normal dose I'm told is
50-100mg. I've just gone through a gradual reduction in dose till just
last week I quit altogether.

Evidently the Zoloft was contributing to my lack of energy because all
of a sudden I've had more energy than I've had in decades and I'm
actually cleaning my house (those who have done the tx know about that).
Of course I'm still drinking colloidal silver too which also energizes.
topcat - 16 Jun 2009 21:54 GMT
> Hello everyone, this is my first post.
> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 16 lines]
> I am 54 yrs old. My name is Ken.
> Thank you for your time

Hi Ken, Welcome to our little corner of the world.  I finished a 48
week course in March.  I remember it was a bit scary at first, but got
easier over time.  We all seem to be a little different in regards to
tolerance, but some similarities.  I had a bit of nausea at first, and
some body aches but I got thru it all and if I can, anybody can!
Hang on, keep us posted and ask question when you need to, some of
these folks here have a lot of helful info to share.   Good Luck
Joe
bluz56 - 16 Jun 2009 22:42 GMT
Thank you Joe
I really appreciate it.
Cheers

On Jun 15, 7:47 am, "bluz56" <blu...@tbaytel.net> wrote:
> Hello everyone, this is my first post.
> I was told by my doctor 4 yrs ago that I had hep-c.
[quoted text clipped - 21 lines]
> I am 54 yrs old. My name is Ken.
> Thank you for your time

Hi Ken, Welcome to our little corner of the world.  I finished a 48
week course in March.  I remember it was a bit scary at first, but got
easier over time.  We all seem to be a little different in regards to
tolerance, but some similarities.  I had a bit of nausea at first, and
some body aches but I got thru it all and if I can, anybody can!
Hang on, keep us posted and ask question when you need to, some of
these folks here have a lot of helful info to share.   Good Luck
Joe
 
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