Research Study!!!!! and some other questions. ( to all our deeper thinkers!! )

[DoubleDose]

Here is a link to a research study that I came across today:

http://www.hivandhepatitis.com/hep_c/news/2005/ad/110905_b.html

You will have to cut and paste.

Questions about our fatigue and cognitive problems are being pursued on all fronts.  The answers may provoke more questions than anything else.  There may be some viral basis to ongoing symptoms after SVR, and this may be a prelude to further study in that regard.  It is logical, since the fatigue in HCV infected persons does not seem to correlate to anything in the liver/blood realm (ie:  viral load, liver damage, cytokines, duration, etc.)

Remember that post-SVR studies show generally that 30% to 50% of SVR's out there CONTINUE to experience disabling fatigue long term (along with other extra-hepatic symptoms).

Here is a question from LEFT FIELD:  (which obliquely relates to the above issues):

How many of us have experienced eye related problems over the years????  Such as, red, irritated eyes, dry eye (ala Sjogren's type reaction), red bumps around eyes and on eyelids, severe allergic reactions, vision problems, floaters, etc?

This question pertains to years prior to any therapy, AND to life after therapy, whether SVR or not.

What I am trying to understand is a major question regarding HCV infection:  Do the eye problems come from internal immune reactions to the blood/liver infection (cytokines, T-cell, etc)

OR

Do our eyes actually become INFECTED by the virus, with low level replication in the tissues and fluids?  Does SVR ALSO clear the eyes of the virus ???

DoubleDose
  

[vegas777]

good questions about the eyes..I have had floaters for a few years now and recently they seem to be getting worse

[jmjm530]

Good to see ya' again, but I'm not thinking too deep these days. :)

But as far as my eyes are concerned, they've always been OK, just a little near-sighted.

OK, here's a thought -- in your quest/research into post SVR sides, how do you differtiate between sides still being caused by what is becoming known as the "occult" virus, versus sides caused by the treatment drugs themselves.

-- Jim

[cquest]

I am always tired...always...I actually nodded off at a party once...head tilted back...mouth open...lovely sight...I woke up to my husband nudging me awake and everyone looking at me in disbelief...I just said I was 'power napping'! After I found out I had this, it all really started to make sense!
Cin

[DoubleDose]

Jim:           Your question is exactly the crux of the current debate.  Is there residual virus, causing symptoms, even though the virus may only be present at minute, sub-clinical levels ??

Or, are our symptoms (both before and after tx) caused by immune related complexes provoked by the blood borne HCV infection, and/or also by all the interferon we have taken, often in massive amounts??

Only continued research is going to sort this issue out.  The big concerns are the reports of HCV virus actually inhabiting brain tissues and spinal fluids.  You have to really wonder, that if this actually happens, then does the tx really eradicate those reservoirs as well???  Why do so many supposed SVR's end up being plagued by a multitude of symptoms that in many ways resemble their old HCV extrahepatic symptoms?  

No good answers currently, only speculation on both sides, backed by often contradictory research studies.  

Someday we will understand these issues, and maybe will benefit from future medications, aimed at total bodily eradication, without massive side effects.....that is, if these ongoing reservoirs, or low-level viral infective tissues are proven to exist...and to be the cause of ongoing problems!!!

For those whose SVR leaves them feeling just fantastic, 100% back to good old super health....these questions may not matter.   To  those who feel as if they are still suffering from some oppressive disease, even long after SVR, these questions may matter very much.  Maybe some SVR's clear their virus ENTIRELY, from all suspected compartments, etc.  and...maybe some are left with ongoing sites of sub-clinical replication.  It doesn't seem too far fetched to me, in light of the info. presently available.

Thanks for the reply.  I hope you are doing well.

DD

[jmjm530]

It is a fascinating subject but assuming the occult virus exists, I'm not surprised they're finding it in brain tissue and spinal fluid. In fact, the opposite would surprise me since if it exists, it probably is everywhere. The big question of course, is what is the signficance of all this? All of us harbor many viruses and often without consequence. But then again, there's the suppressed immune system issues which just coincidentally are caused BOTH by Hep C and its treating drugs! Other questions begged is (again assuming occult virus) what then exactly is the SVR mechanism that keeps the virus at so-called "undetectible" levels? Does it have to do with the state of our immune system, or how effectively we "nuked" the virus during treatment. Lots of questions. Thanks for digging.

-- Jim

[crushed]

i saw a similar report on the virus being found in the cerebrspinal fluid (very reassuring huh?) that was more in depth than this link but i forgot to bookmark it. iirc it also mentioned that it was of a different genetic mutation. probably all based on the same info, at this point i've digested so much data on this disease i think it's becoming a side effect. from what i see there is dammned little written in stone and new info/data is coming out daily...it's frustrating cause once you "think" you know something another source comes along and contridicts the first.

here's a link to a little info along the lines of your question, if the peg does basically the same thing as our bodies just to a greater extent then maybe the bodies response to the disease could have a negative impact.

http://hepcassoc.org/messbrd/index.php?showtopic=10897

[Forseegood]

You know, I think there are a few good new articles over there at that site, (a site I check weekly) especially the one (for me at least) about the fatigue and HCV and how that fatigue effects women disproportionately. And that you can experience fatigue, sometimes, dibilitating fatigue, even if you have low liver damage. I guess they are speculating it has something to do with female hormone  imbalances...something I've been speculating for a long time because it makes perfect sense.

I went ahead and whizzed it over to that silly hepatologist that told me that the only people who experience hep c sides are cirrhotic or in ESLD. What do you think of them apples DR. DUDE!!!!he he he. I know a few people who are cirrhotic who hardly have any symptoms, so there you go. Thanks for the heads up!

[vegas777]

I sometimes have debilitating fatigue and have low liver damage, I also have low VL and I get URQ pain daily....go figure!

*dippers*

[Forseegood]

forgot, if youre still getting annoyed by dry eyes, I use the best stuff, everyone I've turned them on to sing it's praises. I'll let you know where you can buy it, (it are relatively cheap) if you want to know...if not, thats cool too. Hope youre well.

[crushed]

sorry forgot to post this link, wish we could edit and stuff here. just found this recently but looks like it has a good selection of info.

http://www.natap.org/hcv.htm

[2irish]

hi, angie!  could you tell me about the eye drops?  i am using murine tears & it's not that great.  talk to you on friday, going to the study tomarrow.

[jmjm530]

Last thought and then I'm gonna do shot #37 :)

Have you come across any investigations of occult virus in  people who show hep c anti-bodies but are non-detectible. In other words, that 20-30% of people who fought off the virus on their own. If no occult virus in that population then maybe something to learn. If the occult virus is found, it begs the question any residual sides? It may also clarify that question since there would be no treatment drugs to cloud the issue.

Now...where did I put those syringes :)

-- Jim

[crushed]

quote:Other questions begged is (again assuming occult virus) what then exactly is the SVR mechanism that keeps the virus at so-called "undetectible" levels?

this is one question that has plagued me from the start. iirc from numbers i've seen 1-3% of people exposed completely clear without any effects, 20-30ish (i think) will become acute but clear and the rest become chronic. if you contracted it through transfusion then perhaps you would be exposed to a great quantity of virus and your body can't react quick enough to supress it but in any other mode there would be minute amounts of virus transferred. having said that if you achive svr after treatment and it's from your body being able to hold the virus down why couldn't it do it in the first place? also why do they call it an svr as opposed to cured? because current tests don't have absolute detection levels and/or they believe the virus is still present but suppressed? seems like for every answer two questions crop up.

damn bugs

[Chriskid]

How many post svr symptoms can be attributed simply to aging?  How many to psychological problems?  Many of us infected have not lived very wholesome lives.  That takes a toll in itself.

I’m having a problem believing that minute non-detectable levels of the virus can cause the same symptoms that a heavy viral load can.

[cuteus]

that is so weird, I just saw that article today and posted the URL in some thread that I can't find.  I thought you might like this one also:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15113899&dopt=Citation

I still think that interferon eliminates the virus wherever the blood reaches in true SVRs. But I would like a biopsy to confirm the absence of the bug for sure.

[LvdByGod!]

all "deeper thinkers" that need to be reminded to "cut and paste" need not apply!!!! heeheehee...sorry i couldn't resist DD! =)

very interesting article...

as a not so deep thinker at the moment...i bet that virus has tons of effects we don't know about yet, it crosses the blood brain barrier and it seems probable to me that it would effect other areas of our bodies "after tx" in a few folks as well as in many before treatment...

article on occult virus in supposed svr...

http://clinicaloptions.com/Hepatitis/Resources/News%20and%20Comment/Articles/news_imed_342.aspx

i personally had zero vision problems before tx...after tx is when they all started...mostly blurry vision...i did have the fatigue and depression at times before tx though, but ialso had a troubled childhood...

to me in my simple mind...i also think anytime your body has to fight off a virus or something folks are gonna be feeling worn out...and the other added possible problems from hepc like nuero/eye/blood probs are like opening pandora's box...and occult virus' in the various body parts,fat,brain,cells,eyes...seems worse than a horror movie to me...the virus in the eyes and other places after tx is a scarey thought...i hope they find some better news...that article i posted above seemed to indicate it doesn't happen to many with SVR...but i think i've read otherwise as well...you guys? i could swear i read an article saying it was found in most svr's after tx...is this true?

ps...the only pretx times i've experienced those eye symptoms were in my "pot" days.... =)

...and my brains always been a little messed up...but that started before i got hep c!!!!???? so....

i would like to understand the mechinism that keeps the virus below undetectable levels for years, in those with occult hep c...how does this happen? residual interferon responce or what?

[LvdByGod!]

cutie, so you don't think there is alot to this occult virus stuff...the study i posted said there were only a few showing virus after svr...and one had a different genotype...so i was wondering about re-infection or was it really occult virus???

and by the way, wasn't there an article that showed alot of svr's had some virus left in the liver??? or am i just dreaming cause i should be sleeping, i'm so tired???

i could be loosing my mind...too much tinking for my witto bwain....

[DoubleDose]

The articles that I have recently seen mostly indicate finding low level viral copies in various compartments, including lymphocytes,  peripheral blood mononuclear cells, and other tissues, both in SVR's  (about 90% of those tested) and in those who are antibody positive, but cleared spontaneously.  If these studies are to be beleived, then there are very few examples of true viral eradication to be found.  Maybe the virus converts into a latent or 'suppressed' form.  

My concern is that maybe, just maybe, the virus exists in quite a few more people than the medical community currently believes.
Maybe there are instances when the virus  transmits across tissue and fluid interactions (sexual, salivary, etc.)without necessarily moving directly into the bloodstream / liver.  This might become a 'smoldering' or sub-clinical infection which is held in check by the immune system, and causes chiefly local chronic tissue or organ reactions, or local autoimmune manifestations.
Maybe, only those that receive the virus through a blood to blood exchange, actually develop the viral infection in the blood.  This could be very easily envisioned, IF they prove that the virus is alive and replicating in various fluids, tissues, and organs (saliva, salivary tissues and mucous membranes, sexual fluids and membranes, gastric mucosa, etc)  What would keep it from moving from one person to another, if there is tissue and fluid contact. But,it might not be capable of overcoming tissue immune barriers to enter the blood as a full fledged infection, thus remaining 'occult'.  Maybe there would be no positive indicator using a blood anti-HCV test, in these cases.  One might need a tissue antibody test, with amplification.

Please excuse my TOTAL speculation on this subject, BUT, I think more and more disturbing evidence surfaces everyday regarding the behavior and infectivity of this virus.  So far the virus has been supposedly isolated in salivary fluids and tissues, lymphatic tissues, sometimes sexual fluids, gastric mucosa, etc. etc.  Not to mention the newer reports of brain, CNS, and spinal fluid infection!   There are large numbers of people out there with FM, CFS, autoimmune syndromes, etc. without any known cause.  Could there be some connection in some cases to HCV, in some occult form, outside the bloodstream????

THESE are the questions that really concern me.

I pray that this proves to not be the case...but every study raises more questions than answers!

Best wishes to all, and let's enjoy the progress we have made to this point.

DoubleDose

[HCA]

I remember reading a report some years ago that showed that autopsy revealed HVC RNA in cerebrum of 50% of cadavers with active infection at time of death.It is thought however that this may be a quasi-species possibly benign.
My doctor (Professor of Medicine specialising in viral hepatitis) tells me that residual viremia in SVR's  is of a weak and inferior type.
I think that some of the HRQOL issues concerning SVR's may be due to tendency to blame HVC for everything.(not in every case-I don't want to offend anyone!)
All of my healthy friends age say 40+ are continually saying how tired they are.
I wonder if there are any tests comparing cognitive skills of SVR's to a never -infected peer group.

[nyhepc]

can i butt in on your post?? didn't want to waste one on this....

my hair, my hair!!!!!  falling out by the buckets. i had it cut short, use nioxin, wash every other day...what about vitamin supplements??  i've seen attractive women with no hair, but never wanted to be one of them!!!! ok (deep breath), in the grand scheme of things..this is only vanity, it's temporary, my dog would still love me bald...i know, how about some jokes this week about bald-headed women. no disrespect intended but sometimes we need to laugh about ourselves.

[mistybean]

I am not worried about occult virus. I don't put too much stock into these studies.

[Chriskid]

A question about VL fluctuations.  

I had my first (1 month) follow up appt on Tues.  Believe it or not the only piece of info I got was pre tx  base line on VL.  I tried to get a copy of all the blood work results but…the printer wasn’t hooked up.

The number was 798k.  Down from 2.4 mil last spring.  The GI was surprised it had decreased that much.  I commented that VL can fluctuate.  He agreed but said it was very unusual to see this kind of drop.

Right then there was a knock on the door, the receptionist interrupted saying there was an important phone call for the Doc, end of appt.  Didn’t exactly instill a lot of confidence in me.

Anyway, does anyone have a better understanding of just how much untreated VL can fluctuate?

[jmjm530]

Three years ago my VL was over 30 million ul/ml. A year ago my VL was 16,000 ul/ml. 9 months ago my VL was 1.5 million ul/ml. All these numbers were pre-treatment. So, yes, viral load can fluctuate wildly without treatment.

-- Jim

[HCA]

My untreated viral load has ranged between 3m and 40,000.
I would say that your fluctuation is unremarkable.
I would dump the Doc.
All of us should be treated by specialists in viral hepatitis if at all possible.

[cuteus]

Yes, I remember that article Tnguy posted about the different genotypes present in different organs and blood of hep c infected. Those folks were not SVR, though. The worry DD presents is that hcv stays around, hiding in places other than the liver.  I think tx takes care of any leftovers.
This is the article I bookmarked when the hullaballoo on persistent HCV started. It present countless of studies throughtout the years, where it shows that SVR is sustained and HCV is not found in the subjects. I guess you can choose which study to believe, the one that found something or the ONES that found nothing to be alarmed for.  They found that histology was improved after SVR and no HCV was found, if there was any hiding stuff, then it must not be of the kind that exerts any type of damage in the liver and no reaction from our immune systems.  Here is the address again:
http://www.natap.org/2005/HCV/010505_02.htm

When they show active replicating virus in the brain and elsewhere,(so far it is in cadaver's autopsy as far as I have read), When they go in vivo, after SVR and show me little buggers partying in brain tissue, I will worry.
As for the symptoms that are puzzling some, almost everyone in my department is complaining of the same things. Memory and cognitive problems, tireness, eye problems, etc. We are all in our late 40's and 50's. They are not HCV+ or anyone else in their families. So it is kind of stretching it a bit to assign blame to occult HCV.  Maybe is black mold or some unknown organism or pollution, or just plain getting older.
Stop reading when you feel the first hint of a headache...it could be HCV burrowing further...;-}

[cuteus]

I just had a funny thought. You know how some are always saying that something else will get you(die of something else) before hcv does? I hate that phrase by the way.
Well, I think we will die of something else before compartmentalized hcv gets us!

you are not laughing?

My head is not in the sand as far as HCV goes, I find it an intriguing bug, but I have other things to worry about, like college search and graduation rings, Junior Prom, so much to do...what were we  worrying about?

Just don't forget to post on the latest hiding hcv articles, on SVRs! Actual findings please, not medical speculation by experts, I can do that myself. Maybe I will write to Robin Cook and give him an idea for his next thriller!
take care, DD

[crushed]

i guess many here have seen these but for those who may not have, much of what i've seen mentions hbv involvment...this stuff is troubling but who knows.

http://www.natap.org/2005/HCV/090505_20.htm
http://www.natap.org/2004/HCV/101404_05.htm

[Chriskid]

Yeah, dump the Doc is what I’m thinking.  However, I’m also pondering the following:

First, somewhere around the beginning of last week (5) I started feeling a lot better, as though I was over the hump.  I figured it was just an upstroke that would end with the usual crash.  But it hasn’t, I’m genuinely feeling better.  So I’m now wondering just how much I need to rely on Doctors anyways.  If it remains like this I just don’t see big “need the Doc” problems. I'll just do the treatment and get tested as needed.

The other thing is that I’m used to dealing with apathy and ambivalence in people, professionals and otherwise.  Worse case scenario is I end up out of the frying pan and into the fire.  Possibly the best case is I end up with someone of the same caliper.

Fortunately I’ve never had a lot of health issues.  But in those times that I’ve needed a Doc it’s always been the same thing:  Wait for hours for someone who appears overworked and not really in focus.  You’re just a number.  If you need immediate assistance go to the ER.  Let’s not even talk about lawyers.

So I’m thinking maybe just ride this out for a while.  Maybe I’m just jaded.

[cuteus]

the url I posted was an article in response to the one you just mentioned. one thing that bothers me is that they do not mention how sensitive the PCR was, and since so many are still using the <615 test, i worry that these were not true SVRs, but carriers of a low VL.

[jmjm530]

Not sure about "relapse rates" but the German short-course study suggests that Geno 3's with pre-tx viral load of >800,000 IU/ml have lower SVR than Geno 2's. Keep in mind they are comparing 16 weeks of Pegasys to the standard 24-week course. I believe those geno 3's with pre-tx viral loads < 800,000 IU/ml fared as well as the geno 2's. Other th

Full study here: http://tinyurl.com/avw62

-- Jim

[jmjm530]

You'll have to read the study carefully, but the numbers for the short-course group are based on EVR at week 4. Still -- apples to apples -- suggestive of some differences in geno 2's and 3's. Also, there's the wienerschnitzel factor as some suggest unique cultural factors favor the Germans. Frankly, given what I know about these drugs, I'd just go with a daily wienerschnitzel and hold the beer until after SVR.

-- Jim

[GoofyDad]

Yup. I think we're all feeling the weinerschnitzel factor - and for me it's making it hard to sit.

[jmjm530]

Your week 12 PCR should give you more input. But week 12 PCR aside, by all means go for 48-weeks if studies/doctors are suggesting lower SVR/higher relapse for geno 3's. I'd just do some more digging to make sure this is actually the case. Maybe even a second opinion from another hepatologist after your week 12 PCR.

-- Jim

[DoubleDose]

You may indeed be correct that HCV disappears after SVR, completely.  But currently the medical community has become more curious, and even concerned that a significant percentage of SVR's continue to experience disabling fatigue, long after SVR, AND that this abnormal level of fatigue does not seem to be connected to any variable that might be considered a cause.
Level of liver damage, cytokine production, former duration of infection, etc. all seem to be unrelated to whether or not this extreme and disabling fatigue continues in any SVR individual.

I believe that the questions being asked by the medical community are a signal that there is concern as to whether a viral issue is the cause of this phenomena.  No one is really sure what the reality is, only a bunch of studies done that sometimes point to the existence of replicating viral copies, at low levels, in specific cells and tissues, AFTER SVR.  

I am keeping an open mind about all of this, because I chiefly am interested in knowing what is really going on.  Hopefully the reports of residual virus, and compartmentalized virus, will be dispelled by further research.  That is not yet happening.
But I am waiting for definitive studies!  Just like you.

If it turns out, just on the off chance, that there really is a sub-clinical level of infection remaining in SVR's, and if they correlate this to ongoing problems, or a potential for 'reactivation' of the virus, then I believe that most of us will want to see treatments that eventually address this manifestation.  Of course, that is all based on 'if they find this to be true'.  I am just not going to stick my head in the sand and say everything is just fine, and I am cured forever...bye bye research....I do not need any more information....

No, I am going to keep an eye on future developments, and support the development of a total cure, if that turns out to be necessary.  I notice that many doctors have now reverted to saying that the HCV is in 'remission' when discussing SVR's these days,  not many in the 'you're cured!' camp anymore.  Even the HCV national advertising by support associations seem to refer to keeping the virus at undetectable levels after successful treatment, in their ads.  Wonder why???

DoubleDose

[DoubleDose]

Here is an even 'funnier' thought.  Maybe all those people who die of something else before the HCV gets them, are actually dying of something caused by the HCV in other organs.....stroke, heart attack, various cancers, etc????  If the virus causes pathology in other organs, as is being surmised by some researchers, then there may be a variety of ways that it might 'get' you.  Maybe it's not so funny a thought after all..

DD

[GoofyDad]

Veggie says:
"..I have had floaters for a few years now and recently they seem to be getting worse"

Me too. I called in a plumber and he blamed it on high fiber and low water pressure....

[cuteus]

I guess the idea of 3s relapsing more than twos is coming from merging the info from many studies and articles.
read the section on geno 2&3 in this article. I think this is the same dr that treated me for HCV.  It is interesting how geno 3 with low viral load and 800mg of riba has lower SVR rates with 24 wks  than the High vl group. and more riba did not make it better...without knowing the actual state of fibrosis of your liver, it is hard to see how that might play as a negative.  This article mentions that 48 wks had similar results as 24 wks, but nowadays I am finding percentages kind of misleading.

[cuteus]

oops! here is the article;
http://www.medscape.com/viewarticle/495211, it is free registration if you are not already a member.

this short term memory thingy is worrying me now.
Califia, are you reading?, oh, you are in Hawaii! when you come back you must tell me about the supplement for the brain!

[LvdByGod!]

hi kalio, i'm not sure if you know, i am 3a too...i have read alot of stuff on 3s and it does seem to point to them having a rougher time of clearing than 2's...but better than 1s...as you probaly already know.

3s cause fatty liver more often and that in and of itself is a possible added cause of clearance difficulties...mainly cause the fat causes worse liver disease.

3s also have are more prone to breakthrough hep c...where the virus can become sort of used to the interferon and break through its power...

but in general breakthroughs are rare if you are on the full doses and correct strengths of tx for your weight...

me personally i would never take the chance on going less than 24 weeks even if i had a clearance at 4 weeks...there is just too much at stake to risk that thinking for 3's...but if you show clear at 12 weeks than i think unless you have a lot of negatives going your way, you should feel fairly comfortable stopping at 24 wks. that is the standard tx. i refuse to be someone's guinee pig...even more so than we are already...

now if you have several of these added things you could consider going longer and perhaps the 48 weeks...

things like:

being overweight
high bmi
over age 40
fatty liver (which they can see with an "ultra sound" usually)
liver damage (espcially stage 3 or higher)

if you have some of these you may want to extend beyond the 24 weeks, to be sure you get it...

my breakthrough didn't show until the 7th month right before i was going to go off...i say this not to scare you because breakthroughs are rare, but i say this to show that this stupid virus is hard to predict and i've always felt better taking the "better safe than sorry" approach to tx...

i do have some articles you probably already have but i will post them just in case...

blessings to you my 3a friend,

sandi

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

on breakthrough 3's

http://www.blackwell-synergy.com/links/doi/10.1046/j.1365-2141.1996.6772294.x/abs/

Steatosis accelerates the progression of liver damage of chronic hepatitis C patients and correlates with specific HCV genotype and visceral obesity (3's)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=11391523&dopt=Abstract

dr dietritch on 3's

http://www.thebody.com/Forums/AIDS/Hepatitis/Archive/HepCtreat/Q145951.html

from a 3a relapser to dietritch

http://www.thebody.com/Forums/AIDS/Hepatitis/Archive/HepCtreat/Q155024.html

insulin resistance and 3

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14724822

treatment time 2s and 3s

http://tinyurl.com/b3c5a

Hepatitis C virus genotype 3 is cytopathic to hepatocytes: Reversal of hepatic steatosis after sustained therapeutic response

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12395339&dopt=Citation

http://72.14.207.104/search?q=cache:LYAKx4T4c7YJ:www.hcvadvocate.org/news/NewsUpdates_pdf/News_Review_2004/HJR-1.5.pdf+geno+3+svr&hl=en

[GoofyDad]

"... i would never take the chance on going less than 24 weeks even if i had a clearance at 4 weeks...there is <b>just too much at stake</b> to risk that thinking for 3's..."

This is where my thinking differs from others. My situation is somewhat unique for a couple reasons, so let's set me aside and talk in generalities. What is the <b>risk at stake</b> in going for 12 weeks and if you relapse coming back and doing the whole 24 from scratch? Emotional investment notwithstanding, the risk is an additional 12 weeks. Since the alternative is going the whole 24 in the first place, the real risk on the table is the incremental 12 weeks. With me? If you have to come back and retreat - that's a total of 36, instead of the originally planned 24.  

So what you're asking, is do I want to take a shot at saving 12 weeks, knowing I might get it scott free, or I may have to pay it back with interest.

You go to the bank. They offer you 12 bucks. The catch is you may have to pay back 24, or you may get to keep the 12 outright. Let's say chances are 70% you get to keep it, 30% you'll have to repay with full interest. What will you do?

Also, remember - a 12 wk tx, followed by a 24 wk tx (worst case scenario) probably has a better overall chance at clearing than a straight 24 week tx. And in the unfortunate event of no SVR - 12 + 24 definitely has better chance at improved histology than does straight 24.

Oh boy. Now I've done it.

[FlGuy]

I'm a 3 and had mulled this question myself.  I was clear at 12 but did not have a 4 wk PCR which would have made the concept more agonizing, if I had been clear at 4.  And that Geno 2 study crossed my mind more than a couple of times. But, I can't eliminate the 'emotional investment' side of the risk.  If I didn't have a family I could be more of a risk-taker but whatever risk I choose for myself, I choose for them.  And these 19 wks, 6 days have not been good for any of us.  The thought of a dry run of 12 with the prospect of another 24 would be too much to fathom. This is from a person whose SX were probably in the average range (close, but not dire hgb). And, when I got to 12 with a ND PCR, I was looking down hill (not coasting by any means) rather than up.  I just want to get past this asap and keep it in the rear view mirror.
I guess its belt and suspenders for me at least when it comes to HCV. Even money is good bet with HCV.  In Vegas (no pun Beth) I'll take a card with an 11 no matter what the dealer show. But this ain't a game.
Gee Goof, you made me think.  Head hurts.  Never mind- always does.

[cuteus]

absolutely! I don't think is too farfetched to think that hep c might be involved in the demise of people not on ESLD.  That is why I said the phrase something else will get you is not my favorite at all. They don't usually list hep c as the cause of death if the organ involved in the cause of death is not the liver. the complications brought about by hep c might have caused the demise, but it is not counted against hep c.

so you think hiding virus might just do the same?
never mind, I said I am not worrying yet!

be well

[cquest]

The 'eyes' have it! I have itchy eyes all the time...went to an eye doc probably 15 years ago, nothing...no dx...Well lordy lordy now we know!

Also, I emailed Dr. Cecil...he replied quite quickly which surprised me...said I should try to get into a Vertex VX-950 clinical trial!

Anybody know if/when/where there is such a trial here in the US? I also emailed them asking about it but figured you are the expert around here...
Cin

[cquest]

I just ran into the infectious disease dr that gave a seminar recently (that I missed) and asked him what drug he mentioned as a possible alternative he expects to be available in 2009 and he did say Vertex VX-950! That's the second doc now that has mentioned that drug...buy your stock folks!
Cin