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
  

[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

[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

[GoofyDad]

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

[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.

[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.

[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

[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!

[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.

[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....

[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

[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

[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

[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

[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

[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

[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.

[Chriskid]

Yeah, dump the Doc is what I

[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

[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

[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

[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.