ratio of hepitits c

[Francy Baby]

About 2 years ago I was tested at my county health dept. and was informed that I have Hepitits C with a ratio of 1.58 at that time.  I have not yet gotten treament due to insurance reasons.  I now have insurance starting as of this year.  What does it mean when they say the ratio is 1.58 ???? Also, since my insurance just took effect the 1st of the year......will I be covered to go start treatment.  This is very new to me and any advise would be helpful and appreciated.  Thanx All

[Shyrlgame]

Welcome Sherry,

You have posted in an old thread from 2006.  Please go back to the community and post your questions there.  I'm sure you will find someone with this experience.
Shyrl

[sherryglynn]

It is now 2013 I have waited 10 years to be treated  because liver emzymes were good.  I dont think I can wait until.liver enzymes go bad .  I have a high titer and why cant mri or cat scan be used instead of bippsy.  The fda need to.hurry things along for those WHO can't wait. Your commet on  protease inhibitors for heo c geno 1 . Thank you

[sherryglynn]

It is now 2013 I have waited 10 years to be treated  because liver emzymes were good.  I dont think I can wait until.liver enzymes go bad .  I have a high titer and why cant mri or cat scan be used instead of bippsy.  The fda need to.hurry things along for those WHO can't wait. Your commet on  protease inhibitors for heo c geno 1 . Thank you

[sherryglynn]

It is now 2013 I have waited 10 years to be treated  because liver emzymes were good.  I dont think I can wait until.liver enzymes go bad .  I have a high titer and why cant mri or cat scan be used instead of bippsy.  The fda need to.hurry things along for those WHO can't wait. Your commet on  protease inhibitors for heo c geno 1 . Thank you

[PKCO]

BTW I don't think I know more than anyone else. There are some great minds out there working on this. I only claim I know more than YOU about this. You should shut up and listen. You MIGHT learn something.

PK

[PKCO]

Are you capable of understanding anything I say ?

"wild claims of the perils of treatment, yet you deny the existance of extra hepatic symptoms,"

I have made no wild claims about the perils of treatment. Name one. I have stated only what the makers of the drugs have acknowledged. You must be one of those who actually put this into your system without reading the insert they so thoughtfully provide to you. Oh well. They can lead the horse to water....

I also have not denied the existence of extra-hepatic symptoms. Are you even capable of the truth ? How can you distort EVERY single thing I post ? What I said and I will say again for the FOURTH time: You nor anyone can show me a link to any physical malady that is associated with hcv in an INDIVIDUAL WHO IS STAGE ONE OR ZERO. Until you can produce such info anything you say about the subject is your own wild-eyed speculation and should be noted as such in every one of your posts.

You might call me lucky. I am still alive. But I do have to keep my encephalopathy and ascites under control. (Those are extra-hepatic symptoms).

kalio the more you post the dumber you are looking.

[PKCO]

kalio,

Do you have a reading comprehension problem ? You have distorted one too many of my statements. If you have a problem understanding what I post let me know and I will dumb it down for ya.  ;)

EXAMPLE:
"You make statements like " it is only 20% more likely that you will get liver cancer" and don't consider what happens to that 20%"

I NEVER made that statement.

I don't need to credential myself to you or anyone but your lame statements and total lack of basic HCV knowledge are incredible and you need to be challenged.

I am on the liver transplant list at the University of Colorado Health Science Center (where the first liver transplants were performed) I have been on the list for 4 years now. My hepatologist of 5 years in not only nationally known, but internationally as well. We are friends and he openly shares data with me. And believe me he has a ton as principal investigator for the HALT-C trials. I do research for a prominent national HCV support organization. I am on the speaker's bureau and sit on 2 committees as well. I am also very close to the western regional Schering Biotech nurse for the US. The amount of data that can be teased out of all their trials is incredible.

kalio,if you started now you wouldn't be able to amass the knowledge I have about HCV in the next 10 years. I am not anti-tx and I never said ONCE that I was. In fact, tx has kept me off the operating table for at least 2 years now. Do you know what a sustained biochemical response is ?Why would I be anti-tx ? So, let's get this straight. Please take your time to fully digest this and don't screw it up and twist it:

I am for tx when it is APPROPRIATE. Appropriate is when the possible rewards are worth the risks. Do you UNDERSTAND that?
And I would like to inform you that EVERY decision we make in life is a "personal" decision. But every decision we make in life is not an INFORMED decision.

Once again I will ask you to put up or shut up. Show me proof of extrahepatic manifestations at stage 1 or 0. Show me the variance in mortality rates that exist proving the desirability of treating at stage 0 v stage 1. Or stage 1 v. stage 2. If you can't produce peer-reviewed material then shut up about it. Your wild-eyed explanations (the one about the vl was pretty funny) aren't needed.

PK

[PKCO]

Perhaps you should read the information on the drug insert that accompanies your interferon. If the print is too small go to the maker's website. I'm suprised you would advocate putting a drug into your body when YOU don't even know what it can do.   ;) Long term effects? I would call suicide a rather long term effect. A heart attack can bring many permanent long term effects. Death from infection or fulminant liver failure from INF both seem like they could have some long term consequences.Blindness seems rather long term to me. Want me to go on ? Nah, not gonna do the intellectual heavy lifting for someone who obviously hasn't done any research. Permanent thyroid damage is not only listed as a danger, but I know 25-30 ppl this has happened to.These are just SOME of the KNOWN risks. There are unknown risks as well. If there weren't more, the side effects list would not have steadily grown over the last 6 years.Read the insert before you pop off next time.

I have previously stated that HCV is a systemic disease.But that in no way means that you are going to develop extrahepatic symptoms at stage 1 or 0.I will state it once again: You cannot show me ANY documented, peer-reviewed data to assert extrahepatic manifestations at stage 1 or 0. And, of course, you didn't.

Your point (I guess you were trying to make one) about arthritis didn't make much sense. HCV is not a percursor to having arthritis. Millions of people have arthritis that don't have HCV. The treatment (INF) however has been directly linked to triggering autoimmune diseases such as arthritis,psoriasis,thyroid, and autoimmune hepatitis.

And all that baloney about "damaging my immune system" from Kalio. The most probable cause for liver aptosis is a host-immediated immune response. In other words it IS your immune system that is killing your liver cells !!! The data strongly suggests that rate of progression is linked directly to this immune response. Another way to say it: Those with the most active immune systems can have a faster rate of progression.

Some of you can't stand to hear that you might have made a mistake by treating too early. You feel the need to validate your choice, and prefer to do so by attacking the messenger.
The rush to treat mentality has become a mob mentality. You might try following the money. You might learn something.

[honey11]

Excellent Point!  Viral load means nothing unless it is registering 0.  Too many do have viral loads in millions with no damage and many with very low viral loads have severe damage so this proves that viral load means nothing.

[lat36]

Cuteus - always wanted to ask someone who has cleared the virus - do you feel better now than you did before tx?

[Tallblonde]

You wrote above:  "if you are treating you are lowering the viral count which is what is causing havoc on your system."

I'm going to disagree with you on that statement.  Prior to treatment, Snook had a VL of just 4,000 -- but he had Stage 3 damage.  Others have VL's in the millions and are at Stage 0.  In my mind ERADICATION, not mere lowering, of the VL should be goal of treatment (plus the possible reversal of some existing fibrosis).

I've hear you say more than once that lowering the VL is a goal of treatment. That just doesn't make any sense to me.A VL of 1 today could be a VL of 1 million six months from now.  So what's the point of treatment if there's still one bugger left?  I hope you'll rethink that.  Not everyone CAN eradicate the virus, but that should always be the goal.  Lowering the VL doesn't really add up to much of anything.

Susan

[cuteus]

just in case you feel the urge to attribute the arthritis to age or anything else, even the rheumy could'nt do that. She stated I was not manifesting "classical" symptoms and proceded to test for hep c. I guess she is just delusional also.

[cuteus]

I have not seen any credible data that links tx to severe long term conditions that you mentioned, not one. But I have seen more than one article on extrahepatic manifestations. They don't always break it down by liver damage, so you can't say it does not occur in stage one. So, are you basing these horrendous long term sides on anecdotal data gathered in delphi? if not, post a link to any article that shows these horrendous long term  sides due to tx. will be appreciated.  
HCV is blood disease, but you are focused on seeing it as a liver disease only. good for you, as you will live a long, horrendous side free life.  Where do you get off saying that people at stage one show no extrahepatic manifestations? I HAD ARTHRITS BEFORE HCV DX, it was the rheumy who found the virus, and I was a stage ONE.
Please get your facts backed by credible data, not just opinion.  I can show you my rheumatologist notes, before HCV was dx.
BTW, I am now free of the virus, and suffering no long term horrific effects. Sorry to bust your bubble. NOT!

[lat36]

Hi PK, thanks for the reply. Your comments about the fatigue being caused by something else are something that I've considered before. I do think it's related to the Hep C though - I was diagnosed with it at 19, I'm 32 now. Perhaps depression, I never considered myself depressed though. I found the interferon made the world a darker place for a while, so I think I understand the concept better now! I just ignored the Hep C, put it to the back of my mind and waited for medical science to come up with a solution. But during that time, I definitely noticed periods of what I'd consider to be unnatural fatigue and clouding of the mind. Sure, I don't expect to have the energy of an 18 year old anymore, but I attribute those fatigued times as being due to the Hep. After reading other peoples stories and noticing this common thread coming through, I'm quite sure that what I've felt over these years has been due to the hepatitis. I also believe that it's possible for for a whole raft of symptoms to be caused by it too. If the virus is always keeping your immune system in a bit of a panic, then I think it stands to reason that the body will react in strange (and negative) ways over the course of years. There have been a few articles about the virus having neurological effects as well, let me know if you'd like me to track them down and post the links.

You sound like you've done your research - I can understand that, I hope you continue to stay well. The bulk of my reading on this has been over the past 39 weeks (I have another couple of months of ifn/riba to go). Thanks for the good wishes, I don't like possible permanent/long term effects of treatment, but it was a risk I decided to take. Always good to hear the different views people have on this virus (and treatment).
Best wishes.

[dyce]

Good morming,
              Since my original bx in 1999, my liver has increased imflamation from grade 0 stage 0 to grade 1 stage 0.  This is a bloodbourne pathogen and it works on the immune system,can premote diabetes and I don't want it to do any damage if I can help it .It's also works on ones mentality,causing depression and there can't be anyone out there who isn't bothered by the fact,they have hcv.

   I did some research and svr rates rae higher when people have little or no damage when they tx.I'm fortunate to have had this virus for a while and display no damage,but the imflamation has increased,I'm tired of worrying about it and I believe my chances are at their greatest right now to rid myself of this problem!

Dyce

[lat36]

Hi pkcolo,
I can understand where you're coming from to a degree, but I think you should consider quality of life as well as mortality when it comes down to the decision to treat. I'm also stage 1, grade 0, and although my liver seems to be OK, my decision to treat is partly based on ridding myself of the years of fatigue that has affected most areas of my life. I decided against the non-peg interferon when that was available, and now that the odds are higher with the combo therapy, I'm going for it. Some people who are noticing no problems at all with the hep C might be happy to wait a few more years for the next generation of drugs, but there are others (like myself) who have waited long enough and decided to make the move to get rid of the virus now.

The treatment isn't hell on everyone, it's actually been fairly tolerable in my case. I do share your optimism for the the new drugs though, if this doesn't work, I'll be waiting for them with everyone else. But if I hadn't tried this I'd just be kicking myself about it for the next few years wondering if I could be spending my time feeling a lot better.
Thanks, and best wishes.

[PKCO]

"You can be suffering from Hep C related health issues and not have detectable liver damage."

Name just one extrahepatic condition that can be attributed to HCV that occurs before there is the presence of liver damage.Just one.

The health risks you mentioned are nowehere to be found in the staistics of those with stage 0 or stage 1. (In fact, you have a greater chance of developing arthritis AFTER treatment. Autoimmune diseases are not uncommon as a result of tx). HCV is a systemic disease to be sure. But it also a very slow moving disease and with watchful waiting there would be no reason reason to treat as long as viral activity remained low.

Your comment on the increased odds of HCC (hepatocellular carcinoma) again do not apply to those with stage 0 or stage 1. Only 20% of those with chronic HCV will go on to develop cirrhosis. This is stage 4. A long ways from stage 0 or 1. A much smaller percentage of that 20% will develop HCC. I have never heard or seen one case of HCV-induced HCC that occurred before stage 3.So once again, a non-starter. Only 3% of those who are infected with HCV will die from it. So, let's not throw the panic switch on a stage 0 or stage 1.

I am curious why you are so gung-ho to push tx without ever mentioning any of the known potential risks ? Don't you think full disclosure would involve detailing the risks ? I do.

You have not given one credible reason to treat at stage 0 or 1.
I will repeat once again: The statistical gain from treating at stage 0 or stage 1 is simply not worth the known risks you expose your body to with INF/RIBA.

To be fair,you have given some reasons to treat. And most of those are very low risk occurrences. What you haven't done, however,is give a solid reason to treat at stage 0 or 1. Thanks for the reply.
Best regards,
PK

[PKCO]

hiya dyce.

Do I have this right ? You are at Stage 0 and Grade 1 ? This means you were at Stage 0 in 1999 as well. Which would mean that your liver disease has not progressed one iota in 7 years! In fact if 1985 is correct you have not had any advancement of disease in over twenty years! You are exactly the kind of person who should not be considered for tx at this point. And the overwhelming odds say that a need to treat will never be reached in your case. Did your doc talk you into this ?  


If you are itching it isn't because of your liver. If you have fatigue I'd be looking elsewhere. Stage ZERO does not produce those symptoms.

Brain fog ? That term used to be used to describe low level encephalopathy which can cause mild brain dysfunction due to toxin buildup in the blood. This condition is only seen in end stage liver disease( late stage cirrhosis). Today "brain fog" has evolved to become the adjective of choice to cover any cognitive problems an HCV infected individual has. We need to guard against blaming everything on HCV. By doing this we run the risk of overlooking other possible health problems that may exist and be the source of the problem. I know people who complain of memory loss, lack of concentration, body aches, bone pain, etc and are convinced it is all HCV related. Sounds just like some of the symptoms humans get as they age.;)

As for bx scoring most labs use the modified Knodell HAI to score bx. Stage 0 is no fibrosis. Stage 1 has the presence of fibrosis. Grade is inflammation scored on a 1-3 scale.

You have made up your mind to do the therapy and I hope you have a smooth and uneventful treatment course. Even if I may disagree with your choice, we're still all in this together and I wish you success !

Best regards,
PK

[PKCO]

Hiya lat.

"but I think you should consider quality of life as well as mortality when it comes down to the decision to treat".

I have never met someone who has a diminished QOL that can be attributed to HCV at stage 0 or stage 1. If you are having fatigue I would look elsewhere for the cause. There are many more likely things that can be the cause of your fatigue than HCV at this very early stage of disease progression. Getting older and depression to name two right off the top.

As for mortality rates you have zero chance of dying from HCV at stage 0. Or 1. Or 2. And the only likely scenario for death from HCV at  stage 3 would be due to extremely unlikely HCV-attributed medical conditions coupled with the lack of proper medical care. In fact, tx has barely nudged the mortality rates from HCV. That's right. Mortality rates have been barely affected as a result of everyone who has ever treated. More than half of those infected never progress beyond stage 2. Four out of every five infected individuals will NOT reach stage 4 (cirrhosis,Knodell scale). And cirrhosis is not a death threat. Many people live full productive lives as cirrhotics.I have been a known cirrhotic for 12 years. I know many others as well.

lat I never said that the tx was hell on anyone. I think you may have misunderstood my point. I referenced the known long-term and/or permanent health risks involved with IFN-RIBA. I forgot to mention the unknown possible risks as well.

Treating just because you can't stand the thought of these little foreign invaders in your body is not sufficient reason to treat, in my opinion at stage 0 or 1. (BTW, you could put all of the HCV viremia in your blood on the head of a pin).

There are some very promising early results on several protease inhibitors right now. Hopefully, none of the monkeys will go blind or have a heart attack from the stuff. (Don't laugh,this has happened to 2 previous trial drugs that aslo looked great in early trials).

Where are you at in your therapy ? I wish you continued clear sailing and nothing but great results ! I would not have made the same tx choice as you, but now that you are going for it I'm pulling for you !

Best regards,
PK

[Francy Baby]

I want to thank everyone so much for their replies.  Kalio1- You sound as though you have done much research on hepititis and your knowledge is most comforting ...thank you.  Nygirl-I beleive old age has a little bit to do with it to be honest....but not as rough as I feel alot of days !!  dale_ray....I'm going for it.  My husband, three sons and two grandaughters are everything to me.  So if it comes to me having to go thru some pain to keep me around longer and be with all of them...I'll do whatever is possible! ! ! My insurance does have a clause in it about pre-existing long term illnesses......1 year.  But at least I can go ahead and get hooked up with good doctors and have a biopsy done within the year and whatever else I can afford.  I've known about this for two years now, I'm over the "why me", "how on earth did I get this", the anger, the "pity party "with myself, lets don't forget the shame.  My family supports me 100%......at first I did'nt want to even cook fearing I would cut myself and get blood on the food or dishes and infect one of my loved ones.  I'm well over all that....I'm just very carefull ! ! ! I live in a small town and the people here are scared to death when they hear someone has hepititis.  I try to tell people that everyone should get checked out if they even suspect it because I had no idea I had it and I'm not ashamed that I do.  Things happen for reasons that we can't comprehend.  I am going to go ahead and persue the options I have and get ready for the insurance to help pay the majority of the medical expenses.  As you all have said...the good thing is that I do have time.  I will use this time wisely to educate myself and continue with all of you.  My very best to you all and my prayers are with each of you for a successful recovery.   LOL

[dyce]

How are you.
           This my friend is no overnite decision. I've known about this virus in me since 1991,probably contracted the virus in 1985.So I've been carrying this around for awhile and as the bx in 99 showed it's progessing slow in hte liver.,but I'm having sx'x. My immune system I believe is being overworked and I suffer some fatigue. Sometimes I have brain fog and itch alittle. This being a blood vorus it's circulatig thru our entire body,affecting other organs.

  So I'm ready to start tx. I have this gut feeling this virus could really do some damage at this point of the game.I want to get rid of thease sx's and hopefully get rid of this and prevent any damage to the liver. I 've been thinking about this for awhile now.

Dyce

[PKCO]

And that goes for ALL genotypes.   ;)

[PKCO]

As I said, I have not read or heard one credible argument to treat at stage 0 or I. And I still haven't.
PK

[PKCO]

hiya Francy.

There is not one credible argument that can be made to treat at stage 0. Or stage I, for that matter. I've never seen or heard one argument to treat at those stages in 6 years that could hold up to scrutiny. The risks far outweigh any benefits at this point. What little statistical advantage you gain is termed 'insignificant' by those who analyze test data. However, the possible dangers can be very significant, some of them long-term and irreparable. Some will point out the improbability of anything dangerous happening. Like some of the rarer side effects : Suicide,homicide,heart attack,vision,and triggering autoimmune disorders such as autoimmune hepatitis, arthritis, etc, to name some of the possibilities, rare though they may be. But why take any chance when you gain very little statistical advantage to treating at this point ?  There is no rush and I wouldn't allow myself to be rushed by any doctor. In fact, if even the suggestion to treat were mentioned to me by my doc at such early stages. it would send me running to a better doc.

There are more drugs in the pipeline now than ever before. Some are showing great results, with Schering's product recently gaining FDA 'fast track' status. While interferon (most likely in combo with ribavirin and/or viramidine ) will be used in conjunction with these new drugs, the length of treatment is expected to be much shorter. Some researchers are theorizing as little as 3 months for the tougher genotypes. The less time you are on interferon and ribavirin/viramidine the better.

A 'rush to treat' mentality exposes you to unneccesary danger.
Remember,there's not much risk in alot of the things that we regularly protect ourselves against. I'm sure you can come up with a big list without hardly trying. I assert that your health has to be number one and you must always weigh risk v. possible (not guranteed) reward . Don't play Russian Roulette with your health when you don't need to. It makes absolutely no sense.

Best regards,
PK