I've chipped out big uninteresting hunks, below...
>Hi guys and girls,
>
[quoted text clipped - 3 lines]
>ambivalent about starting the Tx a few months ago. <g> Well, now I'm
>at Week 18, with 6 more to go (according to my doctor)...genotype 3a.
Excellent.
>While I'm at it, let me go over the key points of my Tx...LFT's
>normalised at Week 2, according to my first blood test, and have been
[quoted text clipped - 4 lines]
>didn't have to take Procrit if I didn't want to (still have it in my
>fridge).
Don't use it if you don't need it. And if there's any way to donate those
Procrit dosages to someone who needs it/can't get it once you're done with
therapy, you might consider that.
>Viral load was undetectable (down from 2.7 million), at Week 4 test,
>according to the sensitive test that detects >5 IU/ml, and now as I
>found out by calling, at Week 12, as well. I guess that's the good
>news.
Yes, we remember you're a member of the Super Responder Club :-)
>Side effects--nothing major, at least compared to the hell quite a few
>people describe going through. Changed hair texture, not as thick as
[quoted text clipped - 6 lines]
>aches, feeling flu-like, headache...but again, rather minor, and it's
>gone after a day, anyway.
It's all good.
>Now, onto what I wanted to discuss.
>I was thinking/reading about duration of Tx. I see some people
[quoted text clipped - 3 lines]
>decisions. Some doctors think that longer is better, which can
>actually be really damaging (I'll get to that in a minute).
For sake of clarity, Guy was feeling like crap and wanted to bail, and Russian
is in a place most people on treatment will visit. No doctors were involved,
really, in either of these "situations" (for lack of a better word).
>Does anyone consider the 24/48/72 weeks model a bit too rigid? It
>seems like arbitrary durations that insurance and drug companies have
>come up with, for standardisation. I'm reading an excellent book by
>Dr. Melissa Palmer, "Hepatitis and Liver Disease", and among other
>great points, she stresses individual approach to Tx method and
>length.
There is no "72 week model" as of yet. Extending treatment beyond 48 weeks is
still considered experimental.
As for the 24 and 48 weeks: these have been derived over time based on
clinical trial results. Clearly they have major "averaging" factors - they are
definitely not per-patient regimens.
>In my case, I've been considering taking Peg-Intron for an extra
>couple of weeks, after Week 24, after talking to the liver Dr. But not
>Ribavirin--I'll explain below.
For the first point: it is *very* unlikely that prolonging therapy - whether
with both combo drugs or either of them, separately - in your case will have
any affect on the outcome of treatment. Simply put, you drew the proverbial
Gold Ring with the undetectable at week 4, and in the published records the
odds of you not achieving SVR are in the single percentage points - with the
obvious caveat that you actually stay compliant through the conclusion of your
24 weeks.
>I've heard of liver Dr's and/or
>patients extenting their Tx duration "just to stay on the safe side".
>I wonder just how much sense it makes from the medical point of
>view--not just intuitive "more is better" approach. In fact, taking
>ribavirin for longer than necessary may actually turn a Tx case that's
>going extremely well into a failure.
Ummm.....no. But go ahead.
>Let me explain.
>I have a friend who's a pharmacologist, among other things, and
[quoted text clipped - 3 lines]
>university) Of course, don't take his words for gospel, but below is
>some possibly relevant, IMHO, stuff that he wrote.
I sense a plane crash coming....
>I just want to get some opinions on this, with regard to the length of
>Tx and Ribavirin's indirect supression of immune system when taken for
[quoted text clipped - 5 lines]
>something new, but if this is true, then I may take my Ribavirin for
>as long as prescribed, and Peg-Intron possibly a bit longer.
And right there your pharmacist friend has led you off the cliff.
Tell him he really needs to do more research on this if he's going to be of
any help to you and others, because he is quite wrong. While there are cases
*reported* of so called "occult" HCV infection, numerically they are quite the
exception, and the method of determination is usually not very strong at all.
>[Btw, INF here means PEG-interferon, unless otherwise stated]
>
[quoted text clipped - 6 lines]
>Ribavirin at the 6 month mark or at least stopped the Ribavirin, he
>would very likely not have retested positive again at this point.
In a word: baloney.
[...]
>The sooner you have treatment after infection, the more likely the
>current treatment modality (Interferon {IFN} and ribavirin) will work.
True - if treatment begins while the infection is still in the acute phase, it
is much easier to clear.
[...]
>IFN by itself is not that effective without ribavirin initially, but
>after 6 months, if you have no viral load, you may want to consider
>stopping the ribavirin to prevent neutropenia (low white blood cell
>count) and anemia (low red blood cell count).
Neutropenia doesn't just sneak up on a patient after 24 weeks of therapy.
There is almost always a slope to falling neuts that would give plenty of
warning before the condition becomes potentially problematic. In other words,
if your neuts are holding up, there's no rational reason to do any form of
dose reduction.
[...]
>A low white blood cell count can cause the virus to come out of
>the liver cells (hepatocytes) and cause a return to chronic hep C (as
>I mentioned about a friend of mine who was treated by an Internal
>Medicine doctor because his HMO would not let him see a hepatologist.)
That paragraph is pretty much bogus. Neutrophils are not the key to the immune
system wrt recognizing and clearing virii.
[...]
>If your virus comes back after a successful treatment, you are more
>likely to get anemia and neutropenia sooner on the second go around
>with IFN and ribavirin.
Ask your pharmacist friend to provide verifiable citations for the above.
I think he's talking out his rectum at this point.
[...]
>I'll stop ranting, because I don't want to lose every last person
>reading this, and really hope to hear what you guys have to say about
>the central idea I'm trying to express. Am I correct in assuming that
>the "longer Tx is better" approach is common among doctors and
>patients of HepC?
I sincerely doubt that is the case.
>Finally, thank you for all the great wishes...I was really
>apprehensive waiting for the 12-week viral load results. Woohoo!
I understand each VL test causes apprehension (bt/dt/a few times now ;-) but
being a Super Responder pretty much dictates you are never going to be
detectable again.
Cheers
/greyhackles
(and stop listening to your pharmacist about anything to do with HCV)
Sick Boy - 20 Sep 2007 02:28 GMT
>>Dr. said I
>>didn't have to take Procrit if I didn't want to (still have it in my
[quoted text clipped - 3 lines]
>Procrit dosages to someone who needs it/can't get it once you're done with
>therapy, you might consider that.
I'd be happy to, but they don't accept stuff back at the pharmacy, and
no one I know has been prescribed Procrit. It's a shame, with many
people suffering from anemia because of the Tx...I'm at a loss of
finding such person, or a place that would do it for me (not Salvation
Army, I guess).
>>In my case, I've been considering taking Peg-Intron for an extra
>>couple of weeks, after Week 24, after talking to the liver Dr. But not
[quoted text clipped - 7 lines]
>obvious caveat that you actually stay compliant through the conclusion of your
>24 weeks.
Good. Thanks for making it clear for me, Grey.
[...]
>>IFN by itself is not that effective without ribavirin initially, but
>>after 6 months, if you have no viral load, you may want to consider
[quoted text clipped - 6 lines]
>if your neuts are holding up, there's no rational reason to do any form of
>dose reduction.
Cheers. I was wondering about how abrupt the process was.
>I understand each VL test causes apprehension (bt/dt/a few times now ;-) but
>being a Super Responder pretty much dictates you are never going to be
>detectable again.
Fingers crossed <g>...I know I have a pretty good chance of what's
considered "cure", but even so, I'd have to be pretty careful about
what I ingest, right? Even with undetectable RNA levels in the future,
I wouldn't be able to drink alcohol (just an example--I don't drink),
try to avoid acetaminophen, etc. Despite liver's ability to
regenerate, HCV RNA is still present at very low levels in liver
cells, susceptible to replicate upon being exposed to a toxic
stimuli--and in that sense, it can never again be like a healthy
liver...or am I too far off the mark?
Oh well...I'd be grateful if I just didn't have to worry about the
constant damage to the liver and other organs being caused by HepC.
>Cheers
>
>/greyhackles
>(and stop listening to your pharmacist about anything to do with HCV)
Heh...thanks. I don't really take medical advice from pharmacists, but
that thing about ribavirin supressing the immune system after a
certain period of time really intrigued me. Glad I can always rely on
your expert knowledge.
Cheers,

Signature
Sick Boy
greyhackles - 20 Sep 2007 02:51 GMT
>>>Dr. said I
>>>didn't have to take Procrit if I didn't want to (still have it in my
[quoted text clipped - 9 lines]
>finding such person, or a place that would do it for me (not Salvation
>Army, I guess).
That's a shame - you had, what, a half dozen doses or more? I wonder if you
could just put it up on Craig's List or something...
>>>In my case, I've been considering taking Peg-Intron for an extra
>>>couple of weeks, after Week 24, after talking to the liver Dr. But not
[quoted text clipped - 40 lines]
>Oh well...I'd be grateful if I just didn't have to worry about the
>constant damage to the liver and other organs being caused by HepC.
Again...The preponderance of study data suggests that in fact there is *no*
remaining functional HCV RNA in the body among SVR patients. In just the last
12 months there have been some very good studies that show just how durable
SVR is. From one study, if the 6 month post-end-of-therapy test remained
clear, over the following 5 years there were zero relapses, with a cohort size
of roughly 250 patients. Other studies appear just as pointed.
The myth that SVR patients still have functional HCV RNA hidden somewhere in
the body just waiting to spring forth is, imo, a lingering manifestation of
the lack of reliably sensitive HCV tests in the past. There can be no doubt
that many patients who ended therapy "undetectable" were not, in fact, free of
the virus, back when the most sensitive tests could only detect down to the
thousand or even tens of thousands of viral copies.
Today we have tests that are reliably sensitive down to under 5 copies per
milliliter of blood, which will go a long way to avoiding that syndrome in the
future.
The bottom line - and yes, I obviously have a vested interest in this - is
that doctors that specialize in diseases of the liver are more and more using
the word "cure". Given what these recent studies are showing, I believe they
have good cause.
Cheers
/greyhackles
Normin - 20 Sep 2007 03:00 GMT
>>>Dr. said I
>>>didn't have to take Procrit if I didn't want to (still have it
[quoted text clipped - 16 lines]
> Salvation
> Army, I guess).
I don't know the legalities of this, but I wonder if your local
Hospice agency could take any unused meds....
I've often wondered about that. Maybe I should call them :) I
have a stash of Lovenox that I don't think I'll need, seems a
shame that they sit in my cupboard instead of being put to good
use by someone
Sara
>>>In my case, I've been considering taking Peg-Intron for an
>>>extra
[quoted text clipped - 79 lines]
> your expert knowledge.
> Cheers,