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Medical Forum / Diseases and Disorders / Hepatitis / March 2007

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Sick Boy - 15 Mar 2007 05:17 GMT
Hi all,

I've read some of the threads here, and think it's great that there's
a group like this one.

I have been hepC+ since about 2000, type 3a, and my AST/ALT are
normally around 100/200, respectively. I'll be 30 years old this year,
and haven't really seriously considered treatment because I heard a
lot of bad things about its side effects. I haven't checked my viral
load in a few years, and only did it twice--the last time it was
somewhere around 400,000...I just found it frustrating to see the
numbers increase, and pointless--since I was dead set on not having
the treatment. For same reason, I've never had a liver biopsy.

At this point, I am actually starting to wonder about it, but my two
major fears are that the treatment will fail, and the side effects
(especially since I'm prone to depressive moods). There's heaps of
info about HepC, but I'm really not sure if I'm willing to go through
with this, despite the uncertainty of the outcome. I used to think
that, well, symptoms of HepC like fatigue, joint pain, etc., don't
appear until 15-20 years after being infected...it seemed so far away,
but now it's been almost 7 years already since I got infected.

When I was young, I didn't really give much thought about what would
happen in 15 years, and whether any possible benefits would be worth
the cons of the interferon or combination treatment. I've read some
really f.cking horror stories, as well as success ones. I'm just
really undecided here, and I'm not really sure what I expect from
posting this...

I understand that most people have had or are having the
pharmaceutical treatment here, but any opinions about whether it's
worth whatever symptoms HepC causes later on in life? I guess there
are people who experience no symptoms at all, for decades, and have no
need to go through the tx. Also, what about "alternative"
medicine--specifically, the Chinese herbs? At one point, I was seeing
this Chinese naturopath who was making some mixture of powdered herbs
for me, but I have no idea what was in there...my liver enzymes
slightly went down, but I'm not sure if it's because of that. I only
get my blood drawn for the enzymes about twice a year. Also, I have a
really shitty medical coverage (Medicaid plus AmeriChoice), and don't
know how to find a doctor (GI specialist? Hepatologist?) in NYC area
who I could trust to make the best informed decisions. Plus, there's
stigma about HCV carriers, and I'm concerned about having to deal with
that, as well, when seeking treatment.

Well, I'll shut up for now, but if anyone has any suggestions, similar
experiences, thoughts, ideas, doubts...anything to say to me, I'd be
glad to hear. I'm under impression that current state of medicine
isn't really equipped to deal with the HCV problem, with an uncertain
outcome and a harsh treatment, and I'm also wondering if there are any
radically different treatments that are more effective and maybe more
forgiving being researched. I'd rather wait (I feel fine now), but I'm
not sure if waiting would make treating my HepC more difficult down
the line. I'm sorry if I'm asking questions that have been answered
already, but what's the opinion on when is best to do the conventional
Tx, if one decides to do so?

Thank you for your patience if you've read this far,
SB

Signature

Sick Boy

greyhackles - 15 Mar 2007 08:04 GMT
>Hi all,
>
[quoted text clipped - 56 lines]
>Thank you for your patience if you've read this far,
>SB

Hello, SB. And welcome to our little corner of usenet.

Here are some (well, many ;-) of my thoughts regarding your situation:

- genotype 3's have a high success rate with the current gold standard therapy
regimen of pegylated interferon and Ribavirin.

- genotype 3's (usually) only have to do 24 weeks of therapy to achieve
success - referred to here as "sustained viral response" or SVR.

- although biopsy can be helpful in knocking folks off their own mental
fences, it isn't necessary for genotype 3's - and the reason is the odds of
success are very much in your favor.

- some folks simply breeze through therapy; for the most part the horror
stories are with folks that have genotype 1 or 4, and who have to do 48 weeks
on therapy, with markedly lower chance of success. If someone were to describe
treatment for g1/g4 as a crap shoot, I'd be hard pressed to argue, even though
my treatment (g1b) was successful.

- damage accumulates with time, and not necessarily in a linear fashion.

- one cannot predict the level of liver damage from LFTs or viral load;
further one cannot predict what other damage/deleterious affects may crop up
from chronic HCV infection. We already know it can cause diabetes; we already
know it can damage the renal system; we already know it can cause other
problems that degrade the quality of life; and it is quite likely that other
effects of having an immune system constantly under siege will eventually be
understood by the medical community.

- you are basically correct that in general the medical community is
"challenged by HCV". Most doctors are frankly clueless about the disease and
the treatment, but with some help from this group - quite a few are in your
general vicinity - you may get pointed to a recommended specialist that
actually knows more than we do :-) which would be a very good thing indeed.

- if you are predisposed to depression, that can be concurrently treated
during therapy. In fact the odds are a good therapist will recommend you go on
anti-depressants a few weeks in advance of initiating anti-viral therapy.

- the two major pharmaceutical companies that developed the current treatment
regimens have programs to assist with the cost of the treatment drugs.

- the longer you wait the less likely of achieving SVR

- there are many new anti-HCV drugs currently in development, but to this
point, even the current "great hope", Vertex Pharmaceuticals VX-950 (aka
"telapravir") is a couple of years from being generally available - and as
time progresses there is the realization that it isn't going to be a knock-out
drug after all - at least, not as a monotherapy agent. In fact this drug is
being tested (Phase 2 tests) as a third agent with *both* pegylated interferon
and Ribavirin, so the prospective patient gets all of the sides of the current
treatment *plus* the side effects of VX-950, with the perceived benefit of a
highly rate of cure. While we're all very interested in the progress of
VX-950, it would not be prudent to assume a major change in the treatment
paradigm in the near term.

- while it is *possible* some "alternative therapy" might mitigate the rate of
damage accumulation, this has not been independently proven to be the case.
This would include "traditional" medicines, regardless of origin. The
alternative medicine industry is fraught with snake-oil salesmen that can spin
a yarn that sounds convincing, but should be avoided like the plague - at the
very least until legitimate therapy is attempted.

- at 30 years old, you are *still* quite young - you're still in the prime of
life, and far too young to be dead-set on anything regarding your health -
other than to take care of business! Heck, son, you're only half my age :-)
and if I was your dad I'd be all over you to do the treatment *now*, not
later.

Stick around, SB. Ask any question you can think of (even the stupid ones ;-)
and the good folks here will help in whatever way they can...

Cheers

/greyhackles
Sick Boy - 16 Mar 2007 02:21 GMT
>>Hi all,
>>
[quoted text clipped - 9 lines]
>>numbers increase, and pointless--since I was dead set on not having
>>the treatment. For same reason, I've never had a liver biopsy.

[snip]

>>Thank you for your patience if you've read this far,
>>SB
>
>Hello, SB. And welcome to our little corner of usenet.
>
>Here are some (well, many ;-) of my thoughts regarding your situation:

[respectfully snipped]

>- at 30 years old, you are *still* quite young - you're still in the prime of
>life, and far too young to be dead-set on anything regarding your health -
[quoted text clipped - 8 lines]
>
>/greyhackles

Greyhackles,
I really appreciate you taking the time to write out such detailed
response to my rather vague "shot in the dark", so to speak. What you
said greatly encouraged me to seriously consider the Tx. Plus, I now
realise I've not been aware, or misinformed, of certain things...like
HCV-caused complications you've mentioned that may happen with time.
Bloody hell, diabetes and damage to renal system? And here I was
hoping I'd only get some fatigue and a little joint pain, in the worst
case, as I'd get older (if I avoided cirrhosis).

Thanks you for also mentioning the subject of insurance/patient
assistance. I'll certainly do some research about that aspect...what I
have now, Medicaid with AmeriChoice, is usually not appealing for
doctors who are considered good, and I definitely can't afford to pay
for my medical care. Perhaps there's a gold mean, hah!

Also, thanks to Elmo for offering a doctor recommendation. I don't
know if it'll come in useful, but I'd appreciate it (let me know if
you'd rather email it, and I'll post the address for that).

Cheers again, guys, I'll dig in the archives to see how this group
functions, and to avoid asking stupid questions, perhaps <g>. I'll
definitely post when I need to ask something, which seems more likely
now as I see the point of the Tx. As an example of an inane question,
I just wondered, how much difference does the doctor's expertise and
experience come into play, since it's pretty much the same two drugs
being used? Also, do GI doctors normally treat HCV, or is it an
exclusively hepatologists' area? Sorry if this comes across as
cringe-inducing, but I only have cursory knowledge of the
stuff...thanks.
SB

Signature

Sick Boy

greyhackles - 16 Mar 2007 03:17 GMT
>>>Hi all,
>>>
[quoted text clipped - 65 lines]
>stuff...thanks.
>SB

Ok, see, right off the bat, you came up with one of the most important
questions you could have asked. You're not very good at inanity ;-)

Yes - and HELL YES - the doctor - and his staff - are key factors for
treatment - perhaps more so for G1s and G4s because of the length of their
therapy - but still applicable for G2s and G3s. Experience, honesty, ethics
and compassion all come into play. If your doctor or the Physician Assistant
that is assigned to you are lacking in any one of those, you could take a
rougher ride - and perhaps lessens the odds for success.

For example: the paradigm of dose modification in the face of side effects -
specifically, the side effects that can be treated successfully. If your blood
counts go south, some doctors may opt to reduce your meds, while other doctors
will fight the side effect with what is available - for instance, Procrit for
Anemia, or Neupogen for crashed White Blood Cells.

The experience to recognize both a problem and the potential solution, the
ethical concern to give you all the options available to you, the honesty to
rate the cost/benefit of each option (with cost not limited to the financial
aspects) and the running odds of success, and the compassion to do *anything*
necessary to keep you as physically and mentally healthy as possible as the
"team" drives for the prize. Lemme hear a YEEEHAAAAWWW!! :-)

So who can guide your treatment? For the sake of clarity, lets assume you opt
to skip the biopsy and go straight to therapy. You've only been infected for 7
years, the *odds* are you have minimal liver damage to this point, and you're
a G3, so most of us would nod our head at this one.

I would recommend dealing with at least a GI doc, but preferably a
Hepatologist. In either case, you really want to establish the experience
level in treating HCV, as I'd take a highly experienced GI doc over a rookie
Hepatologist for guiding me through therapy - and assume if things got dicey
enough that a Hepatologist would be helpful, pull him/her in as a specialist
at that time.

Then the other metrics I outlined are added into the equation. A
discompassionate, aloof doc is a huge liability, no matter how many poor
bastards he's treated before you. Don't be a victim, dammit! Ask the
questions, slow the doc down if that's what it takes and take *your* time with
him/her so you never leave the office with a bit of wonder about things left
unsaid.

Ok, you got all that? :-)

Cheers

/greyhackles (a minor case of insomnia has been pretty darned productive :-)
elmoemerson@webtv.net - 16 Mar 2007 14:15 GMT
<snip>
Also, thanks to Elmo for offering a doctor recommendation. I don't know
if it'll come in useful, but I'd appreciate it (let me know if you'd
rather email it, and I'll post the address for that).  
SB
///////////
You don't need to post your real email addy here.  You can write me at
this email address.  :-)
elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 15 Mar 2007 14:51 GMT
Welcome to the group!  I agree with what Grey just said.....that you
ought to go ahead and get treated now, not later.  If you're looking for
a well qualified professional to treat you, I know someone in that
category that has her practice in North Jersey, an hour west of NYC, if
you're willing to travel that far.  She comes highly recommended.  LOL.  
elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
greyhackles - 15 Mar 2007 15:15 GMT
>Welcome to the group!  I agree with what Grey just said.....that you
>ought to go ahead and get treated now, not later.  If you're looking for
>a well qualified professional to treat you, I know someone in that
>category that has her practice in North Jersey, an hour west of NYC, if
>you're willing to travel that far.  She comes highly recommended.  LOL.  
>elmo

Exactly what I was hoping you'd pitch in, Elmo. Thanks!

/greyhackles
elmoemerson@webtv.net - 15 Mar 2007 15:45 GMT
Re: first post here...  

Group: alt.support.hepatitis-c Date: Thu, Mar 15, 2007, 10:12am From:
greyhackles@NOSPAMyahoo.com (greyhackles)
Welcome to the group! I agree with what Grey just said.....that you
ought to go ahead and get treated now, not later. If you're looking for
a well qualified professional to treat you, I know someone in that
category that has her practice in North Jersey, an hour west of NYC, if
you're willing to travel that far. She comes highly recommended. LOL.
elmo
/////////
Exactly what I was hoping you'd pitch in, Elmo. Thanks!
/greyhackles  
//////////////
Yep!  I don't think the lack of insurance would keep her from seeing
Sick Boy....am pretty certain she'll see folk who have little or no
money.  And if Sick Boy qualifies, he can get his tx meds for free from
either Scherring or Roche thru their patient assistance programs.
There's no reason why he couldn't get tx if he wants it.  But it takes
alot of committment to finish tx, once it's begun.  It's not for the
feint hearted.  The six month regimen Sick Boy would be prescribed is
easily doable, tho.  
elmo
(but you already knew that, Grey)  :-)

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 15 Mar 2007 15:51 GMT
Exactly what I was hoping you'd pitch in, Elmo. Thanks!
/greyhackles  
//////////
There's always room on the bus for one more.  :-)
elmo
I'm gonna have the lobster bisque when we hit Beantown.  

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
 
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