Viral Load. Doc said NOT important

I saw a Hepatologist last week. I'll never go back to him again.
He said that my viral load didn't matter.  My question is: If the viral load doesn't matter...then WHY ARE WE CONSIDERED CURED IF OUR PCR/VIRAL LOADS SAY 0? Why are we always taking PCR tests to check our viral loads and if they go below 29 or 10 or whatever your lab can detect then the doc says we are CURED?
He said,my biopsy (performed by another Hepatologist who is conducting Clinical Trials just to line his pockets}..reads that I'm only Stage 2 Grade 1, that I have plenty of time to wait for some new drugs to get approved by the FDA.  IT'S LIKE SAYING YOU JUST HAVE A LITTLE BIT OF CANCER, SO WHY BOTHER TREATING IT? It's already destroyed my thyroid so badly I had to have it removed! And now that the Cat is out of the Bag re, HepC replicating in other organs in our bodies like OUR BRAINS,KIDNEYS and CENTRAL NERVOUS SYSTEMS as per the Mayo Clinic Studies.If we have tested postive for HepC, then we should treat it ASAP.
If a doctor doesn't feel confident enough to treat a patient who presents with less than "perfect" symptoms. He should go back to a Family Practice, and stop telling everybody he is a SPECIALIST so he can charge more money. I mean really....how much work do these Hepatologists actually do? The nurse takes the blood and the lab processes it and the doc reads the results. Big Whup. We all can do that here on this forum for ***** sake.
-S

[honey11]

Yes I agree with what you are saying,,,,0 viral load is only good viral load but he probably meant by viral load doesn't matter is that it does flucuate back and forth. When I started tx,,,mine was 8.5 million which scared me but I did do treatment and am SVR now for 2 years.  Are you considering starting the tx to put this all behind you.  

[HCA]

He was 100% right!
Viral load has no effect on disease progreesion.
At stage 2 fibrosis you do have time to wait for the new drugs.
The PCR test is to check how well the treatment is eliminating the virus and confirming that it is not present in your system after treatment.
If you have it you have it, the number means very little.

[ladybug52]

It's frustrating listening to Dr's tell us we don't have to treat, but after reading this forum and the different views expressed, I think your dr is going by the guidelines. Many people here are waiting for a better tx to come out. People with low liver damage, stage 1 and 2 have time to wait is the general consensus. I am a geno 2, with stage 1 grade 2 but I decided to treat. Two doctors gave me the option of waiting, but like you I  wanted to get this out of my body asap if possible. Also, they didn't tell me I couldn't treat, just that I could wait. When I said I wanted to treat, they both said they would too if it were them.
I hope your dr. meant viral load before tx is not important. It's been posted here over and over that our viral loads go up and down pre-treatment so the actual number is not important till you are on tx and looking for signs that the virus is being eradicated. If I'm repeating info you already know, I'm sorry, just trying to help.
Bug

[copyman]

i agree with HCA on this. VL is only used during tx to see if tx is working. i think your doc gave you sound advice and you could wait if you want to. of course if you still desire to treat i'm sure he will accommodate you. no doc should refuse you tx.

[Kalio1]

While it is true that viral load and disease progression don't necessarily have a correlation, it is true that a high viral load makes it harder to acheive SCR.

My opinion is that EVERY patient should be given the option to treat regardless of their level of damage. Many top notch heps agree.

Dont forget the influence of the "bottom line" when it comes to recommendations to treat or not. That holdssway for many doctore, not tht they'd tell YOU that.

At your stage and grade, there is no IMMINENT reason to treat I think is the point he was trying to make but doctors are making a BIG mistake to offer this recommendation to patients and not ALSO tell them about all the risks for OTHER problems related to this virus as you point out. We do not know the full spectrum of ramifications from being HCV positive yet, but what we DO know looks pretty grim.

I'd change docs tout suite and get a doc onboard who understands extra hepatic manifestations and the very real risks we are taking with OTHER areas of our health fitness when we remain Hep C positive.
My health facility ( and many others) now do recommend that ALL patients treat ASAP but unfortunately there is still this attitude that you can
"likely die of something besides HCV" so why bother treating and just wait and hope "better" treatments come along. They fail to mention that you could very well die from a HCV related disease just by virtue of the fact you are positive for the virus.

Insurance companies dont necessarily want people to take that information into consideration, if they are lucky, the person wont treat and they wont have to pay for it.

[wyntre9]

Good advice.

[OnAPrettyPoison]

I have to admit, I loved my doctor's take on this (he is a regular GI, but his clinic has already treated 2000-3000 HCV patients).  I had no damage and mild inflamation (inflammation).  He said you can wait, or you can treat.  Here are the pros, here are the cons.  You decide what is best for you.

I decided to treat before the HCV did it's damage, and risk the damage of the treatment drugs.  My decision was the right one for me, and I am still clear of the virus, 7 months post treatment.

[Kalio1]

Good for your doctor. Pretty. I hope you are doing well and life has returned to normal.

It is my hope that someday soon ALL doctors give the advice you were given. Each patient has the right to know all the ramifications we know so far of both treating and living with the virus. The idea that people "will likely die of something else" is the passe mantra of HCV and should be discarded, it is not true and dangerous. The worst part is, people WANT to hear they are OK and they don't have to treat, so they go merrily on their way thinking it's not a big deal, wanting to believe it is not a big deal. Plus the stigmas about this disease make patients want to ignore it. They don't even know that 3 years later when they develop Diabetes it is likely that happened BECAUSE they were HCV positive because they were not made aware of the connection to HCV.

My heart bleeds every time someone comes here all too often distraught because they were told they were fine bya doctor they trust,told not to worry, told that the virus is benign and slow moving blah blah blah only to find out a few years down the road that their livers have substantial damage or cirrhosis and they are now in a fight for their lives. If they had been correctly informed, they could have worked to suppress the virus and not be faced with life shortening liver damage!
When people are told that same outdated info here on the forum and sent on their way it is so discouraging to me. Or told, "better things are coming so just wait" when we really do not know those "better things" will arrive. Do you know how many "promising" treatments for HCV have been touted in the last decade? PLENTY. Did they come to fruition? NO.
I say let them know they are not in imminent danger of dramatic illness in most cases (if they KNOW from biopsy their liver damage is nil or very low )but also let them know that there are OTHER dangers they are faced with that are not limited to liver fibrosis or liver function damage! They have a RIGHT to know the whole truth as we know it so far. For all we know, being HCV positive has other disastrous ramifications ( as if Diabetes, lymphoma and leukemia aren't enough to worry you)
we are not yet aware of and they should be duly warned.

They are warned left and right about the "possible long term side effects" (unproven) of Interferon, but rarely are they warned of the "possible long term side effects" of being HCV positive!

If people dont "take charge" of their own medical care in today's world and research, research, research, it is all too likely they will find out the possible ramifications of this disease the hard way, by dying from them, by having a shortened life due to them.


It burns my arse some doctors have the indecency to be under informed or misinformed and then pass that info onto patients when their lives could hang in the balance.

The nasty stigmas attached to this disease don't help any either in getting people to face the true facts of this disease.

I have read here and experienced myself volumes of sheer stupidity and misinformation from the medical community since I was diagnosed. It is incredibly frustrating as most of you are already aware.
I was under the care of numerous doctors I saw regularly yet not one of them put two and two together and tested me.

In less than a decade with my genotype, my age(over 40) at infection, my mode of infection ( spinal injection),and regular administration of steroids for a back problem, within a decade my liver was ravaged to stage3/early cirrhosis level. I think I am a fairly typical person, drank some socially, didnt eat the best diet,was a tad overweight... all things Im sure contributed to my damage too. All these things that are true of many average Americans, drink some, dont eat all that well and are somewhat overweight.
Had I been tested, I could have avoided this whole mess.When I was in the acute phase, SOMEONE should have tested me, yet they kept passing their diagnosis of drug allergy on to each other and no one thought of testing me. As one doc said "you didn't look like a drug addict to me" Good heavens, what a dunce.

Treat BEFORE damage sets in if you can I say. Get it before it has a chance to get you because what happened to me, can happen to you.

So much for a "slow moving" virus. Sure, in some. But not in some women over 40 who contract 3a we are finding out.
As time goes on, how many more problems will they discover having this virus can cause?

end rant

[jmjm530]

What your doc is saying is that he's more concerned with how much liver damage you have, so in that sense, viral load doesn't matter, i.e. he's correct. Viral load also can jump up and down a lot irrespective of liver damage. Personally, if I was a stage 2, I'd at least sit out the next 12 months and see how some of the newer drugs perform in trial, like VX-950, and then revisit the treatment decision. Of course, a doctor should allow patients to treat at any stage if they really want, but part of their job is also to help you make the best decision that's right for you. Sometimes the treatment itself can be worse than the disease, especially in those with little or no liver damage.

All the best with your decision,

-- Jim

[Kalio1]

Hi Elaine, thanks for asking about me.
Today Im doing ok, its shot day and I haven't taken it yet!

Here's a few links about it:


http://www3.interscience.wiley.com/cgi-bin/abstract/106596173/ABSTRACT

http://www.annals.org/cgi/content/abstract/127/6/423

http://www.blackwell-synergy.com/links/doi/10.1046%2Fj.1365-2893.1997.00120.x

[Kalio1]

I meant to ask how you are doing? How is your son doing? By now you are with the new doctor and ins. I think. Hope things are OK.

[copyman]

I would like to know what other "extra manafestations" will kill you with HCV. i have done extensive research and have never seen anything 100% that HCV will cause a "grim" outlook and you will die from it other then with a liver problem.
You wrote "They fail to mention that you could very well die from a HCV related disease just by virtue of the fact you are positive for the virus"
The reason docs fail to mention this is there is no solid scientific proof of this. Perhaps i'm wrong?
Please enlighten me.

[jmjm530]

As long as we're talking about "extrahepatatic" manifestatins of the virus, keep in mind that there are also, let's call them "extrainterferon" manifistations of treating with interferon, that IMO can be at least equally serious.

Take that first article, for example on diabetes. Just saw my liver doctor last week and he informed me that my lipid problems and the so-called metabolic syndrome have been made worse by treatment, and this is not uncommon.

So, in this sense, I guess you could say that treatment might kill me should I suffer a heart attack, but I think it a stretch, as with HCV being a killer with conditions other than the liver.  A lot of things a step removed can eventually kill you -- including just living too d*mn long -- the virus is not way up there on the list except for a certain per cent who may develop HCC.

-- Jim

[bobbyullc]

your dr is correct . vl has no affect on hepc. he also is correct that you have time to wait for new tx....why take old tx that is 45% effective when in several years there WILL BE

[bobbyullc]

THIS TX IS AS BAD AS THE DISEASE. mellow out and listen to people with some knowledge. i am surprised he even suggested waiting but i agree. not many drs went to years of shool just to screw patients. if thats all they wanted they could be laywers.

[copyman]

i think what happen to you was very unfortunate but do not believe it was totally from the HCV. it must be very rare because this is the first time i have ever heard of it being attributed to HCV. do you have a link that states this? the dr koop quote you posted does not specify HCV just "liver or kidney diorders", and most likely in a hospital setting where it is more common. since this happen to you, i'm sure you know more about it then me but i have been on MANY, MANY HCV websites and not once have i ever heard of this. not to say it is not true just that it must be very rare.

[bobbyullc]

well i am glad something took your fear away for a few minutes and made you laugh. i am sorry so many tx from fear alone. personaly i choose not to live by fear of the unknown but by rational decisions. i have cleared after 45 weeks but even now i would choose to wait and have that year back if i could.
these are my feelings and i am sticking to them. i repeat, the cure was worse than the hep c.  i do wish you svr NOW but if not hang in a few years and it will happen with new tx. and be a lot less debilitating.
GARANTEED.

[B-bunch]

Thanks all for jumping in. I especially liked Kalio1's rant, you really got up on it!
I neglected to mention the Doc also didn't want to treat me because I was dumped from a recent Clinical Trial due to a low HGB count 8.2. That is what I meant by not being a patient with the "perfect" symptoms.

I had to have my THYROID REMOVED due to the amount of nodules (and some were "cold",meaning pre-cancerous). If I never had the thyroid checked I could have developed cancer. And it is associated and probably caused by HepC.

Here is the thing....Raise your hand if you know everything about HepC and all the extrahepatic autoimmune viruses or diseases which it can cause. Remember back when AIDS/HIV was called GAY CANCER? Remember what a fuss people (mostly gays) had to make before research was done and it was then called AIDS/HIV? Remember how all the pneumonias, lung cancer, karposi's sarcoma,skin cancers,brain tumors,kidney shutdown, blindness, thrush etc. then became AIDS instead of just individual diseases? Remember how stubborn the government (CDC) was before blood was screened, and before AIDS was even mentioned out loud? And people STILL don't want to give out clean syringes and condoms to drug addicts. How often do you hear about AIDS on the News? Almost never. It's still killing lot's & lot's of people!! More and more high school kids now.

I just spoke with a friend who was out at a pharmacutical company's HepC convention all last week. Many of our best Hepatologists were there. Talking about just these issues.
How about this..what if HepC turns out to be MORE than just Hepatitis, it loves the liver because it is blood rich, but it also likes the thyroid, the brain, the kidneys, the eyes, the lungs, the central nervous system, our skin..WAIT A MINUTE..what does this remind you of....wasn't I just talking about Gay Cancer I mean AIDS? Ooops. You never know what this thing called HepC is or what it's capable of, or what it might end up being after all the research is in. It will be a while before it's released to the public and talked about OUT LOUD. And we don't have a Liz Taylor, Sharon Stone,or Elton John. We don't have any celebs to make splashy news bites and tons of gays to march in big parades and slap posters all over cities, and appear on talk shows. We have a lot of sick people who are afraid to admit they have it because of the drug stigma. We have a lot of people dying and nobody is marching for them.

[bobbyullc]

I TOO REMEMBER THE ONSET OF AIDS.
people were afraid to go to a restaraunt and get infected, afraid to get in a jacussi, afraid to let a young boy, ryan white, sit in a class with their kids, afraid to shake a friends hand and die, fear, fear, fear,it is a choice that i do not choose. that is a good analogy ... look how irrational it all was in retrospect, how much harm it did to thousands who were the target and more of those who lived in it, how shameful it made so many act. even then i CHOSE NOT to hide in my basement and not live my life fully. Y2K REVISITED? IF ONE WANTS TO LOOK AT THE POSSIBLE unknown sides of hep c you must also look at the obvious sides of tx that MANY display. go for a walk.

[bobbyullc]

one more note, i spent y2k news eve in times square with my son having a ball while many thousands waited for armegedon under their beds.

[Kalio1]

So well said, BB. And oh so true. I lived in the Bay Area back when I heard of HIV the first time, before anyone I knew had been killed by it, it was on a flyer stapled to a telephone pole warning of the virus and they called it "gay cancer"

Similar stigmas, same ever growing list of possible outcomes and illnesses from having it. The people it kills it kills slowly and quietly which gives an advantage to the virus. People who do not know they have this disease but do are out there potentially infecting others!


Another difference, and it's an important one, is those with symptoms from HIV looked sick. We do not, or not for a long time. Our virus does it's damage more silently at first and not all people suffer the same fate from the virus, both of which make it easier to deny and hide. I know HIV can be "silent" for quite a few years also ( I think it's around 5-7) but they have universal testing for that finally, thank heavens.

A death cert. for an HIV victim would state AIDS, or HIV related illness so we KNOW how many are struck down by it, they also have treatments that are not as crude and far fewer die from it annually now. Not so with HCV or HCV related illness, so we don't really know how many are cut down from this virus or it's impact. We do know that Diabetes cases are through the roof, how many of them also have HCV and don't know? We do know it is the number one reason for liver transplant in our country, why isn't that enough to set off the alarm? Why do the CDC and other large health agencies STILL say that universal testing is not necessary?? Imagine the reduction in health costs if people just knew they had it and acted accordingly.

HCV kills far too many, far too young. I guess if your disease doesn't kill all who have it unilaterally, then it doesn't deserve public education and screening.

Testing should be part of a normal screening at annual checkups so we can ferret out who has the virus. If you know it's there, you are in a much better position to manage and monitor it. As long as patients have to ask for the test, the stigma will cause them to hesitate. It shouldn't be that most with HCV find out "by accident" to me that is the failing and also the responsibility of the medical community, to ensure victims are not finding out "by accident"
screen for it you nimrods!

I guess all each of us can do is try to speak up and do what we can. Organize something in our own communities or join those that are already active in our communities and continue to try to get someone with a public voice to speak up with us.
The NP where I go told me they had a "new HCV patient every day of the year" last year.
That's just one doctor's office in a relatively small community.

[jmjm530]

BB: How about this..what if HepC turns out to be MORE than just Hepatitis, it loves the liver because it is blood rich, but it also likes the thyroid, the brain, the kidneys, the eyes, the lungs, the central nervous system, our skin..WAIT A MINUTE..what does this remind you of...
--------------------------------------------------------
Reminds me of Peg and riba :) Interferon can kill the thyroid, mess up the brain, stress out or damage the kidneys, screw with the eyes, not sure about the lungs but I'm sure it ain't lung friendly and please don't get me started on what Interferon can do to the skin but for starters psoriasis, seb derm, rosacea...

That said, if you feel this way, you should be treating. All some of us are saying is that we agree with your doctor, but it's your liver, not his.

All the best,

-- Jim

[B-bunch]

Did you not see that I had to get my Thyroid removed?

I'm glad you choose to live your life fully, to "make rational decisions" like  jumping into a "jacussi". Ask your doctor if you can catch a STD from a jacuzzi and more likely than not they will tell you, yes you can catch them there.

Why did you treat anyway if better drugs are "a'comin'round the bend"?

Are you aware of how long it takes to get a drug approved by the FDA? If everyone were to wait for FDA approved HepC drugs, I'm afraid many would be very sick..."GARANTEED".

I would love to "go for a walk" as you suggested, if it weren't for these damn symptoms of HepC.

[Kalio1]

Because people decide to tx before their liver damage is extensive (stage 3 or higher) does NOT mean they are operating from fear, not at all.

In my view they are operating from a proactive power position towards their health and stopping the virus BEFORE it has a chance to compromise their health or their liver. That is not coming from a place of fear but rather a place of empowerment.


The calculable risks of having HCV on your health far outweigh the risks of treatment related after effects that are talked about so much here in porportion to the true number of people this happens to. Most do not have any lasting side effects from tx.

[HCA]

Hep C doesn't love the liver because it's blood rich.
The virus does not replicate in the blood.
It uses liver cells as factorioes to produce copies of itself.
The virus is carried to liver in the bloodstream-the virons alight upon individual liver cells which then embrace the viron.
The viron uses the cell to produce several copies of itself.The original viron and the liver cell die releasing the new copies into the blood to begin the process anew.
Traces of quasi species have found in other organs and tissues as you correctly say,but these have not been proven to have any specific effect although research is ongoing.
I too have early cirrhosis so I empathise with you.
It does look that Telaprivir may be a massive step forward-it really does work.

[bobbyullc]

first, i doubt VERY much ONE COULD EVER  get a std from 103 degree water loaded with clorine much lees aids unless the where having dangerous sex in it.

i waited 9 years from diognosis to tx when i was stage   3-3 and would have waited another 9 if i could. my dr would not retreat if i did not clear as he said vx950 or other breathroughs were 2-3 years away. last year.

yes it takes awhile for a new drug to get approved but vx950 is only several years away and the fda has so much confidance it fast tracted it. one more year to see prove II trial results will have almost no affect on a stage 1 or 2.

re sides. read the drug co literature on sides in the package. almost everyone has mild to severe sides and evedance is comming out that many are long term.

re, thyroid. read the many post here about treaters who have lost their thyroid from tx only. lots of unanswered question on the safety of tx.

i would hate to tx for a year, wait 6 months for results and be sitting in the drs office reading a magazine about a new revolutionary tx just approved.

[B-bunch]

Just to end this. At the HepC convention my friend attended last week in California, they discussed how Family Doctors, General Practitioners etc. are the "GATE-KEEPERS" of viruses such as HIV/AIDS and HepC. They are the people who should be running tests to remove HepC and HIV from the equation in the diagnoses of their patients. I had to beg my GP to give me a liver panel. He said I didn't look yellow, so why should he bother? Boy, was he embarrased when my test came back HepC positive. Needless to say I was shocked, but I knew something was wrong I felt sick and my liver URQ area hurt, my hands were red, and I was tired and couldn't concentrate on anything for very long. My GP laughed off these symptoms.
It was like...Oh look, at the cute girl trying to diagnose herself. So he "went along" with my begging him for a liver panel and laughed me out the door...until the tests came back reactive for HepC. I swear some of these doctors don't have a brain in their heads!

p.s. Kalio1, I used to live in San Francisco too, for 9 years I moved there from Manhattan in 1979 to go to school at the Academy of Art College. I loved it there, I had apts. up on Knob Hill, down on Larkin and California St., on Sacramento St. by Van Ness and on Vallejo St. up on Russian Hill.

[ladybug52]

Thank you for all your statements, obviously this is a very sensitive and personal issue. I for one am glad I chose tx, not because of fear of the unknown, but to rid myself of the virus. Today I am stage 1 with no side effects from hep C. I am extremely lucky, but how long can anyone guarantee I will stay at stage 1? How long can anyone guarantee it will take to get new drugs? i didn't feel like betting that my liver would stay healthy while I waited for new drugs on the horizon. My philosophy was that it was a choice to treat, and if I couldn't handle the drugs I could chose to stop.

[jboyhk]

I may differ with you a little.

Let us take HepB as an example. It is also a slow moving liver disease like HepB. One can afford to wait for better treatment if you lead a healthy lifestyle.

If you are told of all the possible nasty outcomes such as liver cancer (unlike HepC , with HepB you can get cancer without developing cirrhosis) and the dr tells you to treat, that is a high risk strategy.

The risk is that the treatment may give you a resistant strain. Now this resistant strain is very difficult to control and is far more aggressive at liver damage.

So you took turned a bad situation into one thats worse. This situation is far greater than someone developing a worse situation from not treating.

It is not as black and white as you have it. Even if HCV is present in other organs , so what. Is there any evidence that our immune system is attacking the virus there?

HCV loves the liver to replicate. If it is in other organs think of them as lost stragglers trying to make a home in a place they don't belong.

[BThompson4]

Once the virus does enough damage to your liver you will be subject to dying from any number of opportunistic infections.  I suffered multi-organ failure and eight days of coma from a simple beta strep infection (this bacteria causes strep throat and virtually everybody has it in them) that my body could not fight off because of immune deficiencies caused by hep c.  Lost about 18 inches of large intestine and my old liver in the process.  All caused by hep c.  Feel free to ignore this disease, if you feel lucky.

I know what hep c has done to me.  You want more examples, go to any pre-transplant clinic and have a look at all the yellow skeletons in the waiting room.

I don't plan to go through all that again.  I know SOC is **** in both side effects and effectiveness for geno 1s, but the untreated disease can be far worse.  On week 34 of 72 and no regrets at all, even with the horrible sides.

[jboyhk]

I feel for you and don't want to get into an argument with you.

However, I have never read any study suggesting that HepC weakens our immune system. If you can find them I would love if you can post them so I can have a read.

Many people without HepC suffered similiar reactions you had with Strep. It may be just an unfortuate coincidence.

[jboyhk]

If you care to have a read I found an article that claims that severe reaction to Strep may have a genetic link.

http://www.findarticles.com/p/articles/mi_m1200/is_21_162/ai_95107145

"Think of it as Russian roulette with a bacterium instead of a gun. Most people infected with group A streptococcal bacteria notice no symptoms or simply develop a sore throat. Sometimes, however, a strep infection erupts into a life-threatening illness, causing failure of several organs and shock. On even rarer occasions, the infection devours a person's flesh at a remarkable rate.

Subtle variations among people's immune genes may largely account for the radically different outcomes, according to an international team of researchers led by Malak Kotb of the University of Tennessee in Memphis. Curiously, the immune-gene types that produce the strongest reaction to the strep A bacteria seem to also predispose people to the most-severe disease."

[BThompson4]

This from DR Koop.com.  I don't think anything said below is very controversial.  I had septic shock and multi organ failure caused by an impaired immune system caused by liver damage created by hepatitis c.  I doubt the beta strep infection would have led to sepsis and multi-organ failure were my immune system not weakened by liver damage.

-----------
Many organisms that are normal flora on the skin and in the intestines are beneficial and pose no threat. But when they spread throughout the body by way of the bloodstream, they can progress to OVERWHELMING INFECTION [sepsis] UNLESS THE BODY DEFENSES DESTROY THEM.

Any person with an IMPAIRED IMMUNITY, the newborn and the elderly are at the greatest risk.

About two-thirds of septic shock cases occur in hospitalized patients, most of whom have UNDERLYING DISEASES. Others at high risk include patients with burns; chronic cardiac, LIVER OR KIDNEY DISORDERS . . .

[jboyhk]

There is a big medical difference between having HepC and decompensated cirrhosis liver caused by HepC.

That is where dr's try to make a judgement on whether to treat now or later based on your current state of your liver. Because there are major risks for treatment.

Besides the drugs themselves, if you don't clear and become a relapser then you may be more difficult to treat in the future.

So a gung ho, treat at any level any cost is not the solution.

I only question your statement that having HepC lowers weakens your immune system.

[ladybug52]

You make me laugh!  I'm glad I treated but I could have waited. I was asymptomatic after having this for 30+ years, normal labs for liver function, minimal damage. Everyone reacts to the disease differently. I guess fear of the unknown prompted me to try to get rid of this when I did. Not that I'm out of the woods yet, just so far so good.

[BThompson4]

Are you guys suggesting that hep c and the resulting liver damage does not have a weakening effect on the immune system?  Are we just playing semantic games?  I am working from the assumption that hep c causes liver damage and that liver damage is not good for you.
Have you come across the term spontaneous bacterial peritonitis (SPB)?  It occurs in cirrhotics and is usually fatal.  Before the MELD system was adopted by UNOS, it was a criteria for getting people placed higher on the waiting list.  It is deadly and pretty darn common among pre-transplant patients.
Here is a summary of it.  It is wholly a bacterial infection:
Background: Spontaneous bacterial peritonitis (SBP) is an acute bacterial infection of ascitic fluid. . . .  SBP occurs in both children and adults and is a  WELL-KNOWN AND OMINOUS COMPLICATION IN PATIENTS WITH CIRRHOSIS. Of patients with cirrhosis who have SBP, 70% are Child-Pugh class C. In these patients, the development of SBP is associated with a poor long-term prognosis. Once thought to occur only in those individuals with alcoholic cirrhosis, SBP is now known to affect patients with CIRRHOSIS FROM ANY CAUSE.

Frequency:  In the US: In patients with ascites, the prevalence may be as high as 18%. This number has grown from 8% over the past 2 decades, most likely secondary to an increased awareness of SBP and heightened threshold to perform diagnostic paracentesis.
Mortality/Morbidity: The SBP mortality rate ranges from 40-70% in adult patients with cirrhosis and is lower in children with nephrosis.

[jboyhk]

You are mixing HepC with a decompensated liver caused by HepC.

2 different animals.

The discussion above centered around whether to treat or not treat HepC. The assumption was that you did NOT have cirrhosis.

I have looked and looked many times on the internet and have never found a link to HepC and weakened immune system. In fact one can argue you have an overactive immune system since it is constantly fighting off the virus even if its unsucessful.

If you really did have a weakened immune system from HepC , you would see more linked diseases as you see from HIV which will cause a non existant immune system.

[BThompson4]

"I have looked and looked many times on the internet and have never found a link to HepC and weakened immune system. In fact one can argue you have an overactive immune system since it is constantly fighting off the virus even if its unsucessful."

Here is your link: hep c causes cirrhosis which will quite thoroughly destroy your immune system.

I can't believe I got sucked into such a stupid argument.

Somebody let me know when vertex posts appear; every other subject around here is so inane.

[B-bunch]

Where did you guys get your medical degrees? Are you doctors? Where do you get off grandstanding about medical research you really know nothing about?

Sounds to me like you two guys are just parroting text from websites that are written by pseudomedical info-speakers.

If BThompson4 says "I had septic shock and multi organ failure caused by an impaired immune system caused by liver damage created by hepatitis c." Why in the world would you believe some inane PSEUDO-MEDICAL WEBSITE over what a REAL PERSON describing a very REAL MEDICAL EPISODE says?

What..do you two guys share a brain cell?
You'll really be in trouble when the HepC virus starts chomping on your brain.

Did you say you were from Tennessee? Well, I guess that makes sense now.

  

[BThompson4]

jboyhk,

I clearly stated my sepsis was caused by a beta strep infection.  You could at least reference an article on beta strep, or Streptococcus B, before you attack my very competent hepatologist's assessment of what caused the sepsis.  Your link was to an an article about an entirely different animal, Streptococcus A, the infamous "flesh eating bacteria."  If I ever start shedding skin, then I might "care to have a read" of your article.

"I have never read any study suggesting that HepC weakens our immune system."  

It is difficult to not laugh out loud at this statement.  I will go out on a limb and suggest that looking for links between hep c and immune deficiency might yield some fruitful research.

[jboyhk]

No need to get argumentative or insultive.

This is a public forum and people may use information found on this website as truth. All I was attempting to do was clarify.

Imagine if you were just diagnosed with HepC and come on here looking for info and you read that HepC can cause massive organ failure from Strep B.

Is that really what you want to convey? Is that the sort of information you want other people to spread around?

Noone is questioning your past. It is clear that cirrhosis on its own has a whole host of risks. In fact if you cleared the virus while having cirrhosis you would still be at the same risks. So it is not the HepC directly, but the consequences of.


Now if you would like to tell a newly diagnosed person that they should not listen to their dr's and treat since there is a chance of massive organ failure I feel strongly that other views should be presented.

[copyman]

i do not recall my post to be directed to you? but i will take the time to answer your question anyway. No i do not have a medical degree but i do have some knowledge about HCV. I was simply saying i had never seen anything about this and was asking about a link where i could read more about it, to further educate myself. maybe you should re-read my last post again and you will see where i was coming from. most of the time what i offer here and other sites is medical information i have gathered from sites like clinical options, med pubs, etc where the top hepatologists in the country share hepatitis info. I also see 2 of the top hepatologists on the east coast and we discuss this disease at lenth everytime i see them. so you see my friend i did not educate myself on some obscure websites. i did not want this to turn into a battle, i just wanted to LEARN more about it. PEACE

[BThompson4]

jboyhk,
I can't believe you just paraphrased my post in this way:
"Now if you would like to tell a newly diagnosed person that they should not listen to their dr's and treat since there is a chance of massive organ failure I feel strongly that other views should be presented."

Here was my original post:

"Once the virus does enough damage to your liver you will be subject to dying from any number of opportunistic infections. I suffered multi-organ failure and eight days of coma from a simple beta strep infection (this bacteria causes strep throat and virtually everybody has it in them) that my body could not fight off because of immune deficiencies caused by hep c. Lost about 18 inches of large intestine and my old liver in the process. All caused by hep c. Feel free to ignore this disease, if you feel lucky."

It starts out "Once the virus does enough damage to your liver . . . ."  

I said not a word about a newly diagnosed person.  Please pay attention to what I actually say before you accuse me of misleading people.

By the way, it took 25 years for the virus to destroy my liver and my immune system.  You think it is acceptable to die from liver disease at age 43?  I pulled through after five days of extremely critical condition and massive doses of antibiotics, but death was expected.  Did I mention ever, at all how long the process may take?  You are jumping to conclusions about my statements and then referring me to an article that doesn't even address the actual bacterial cause of my sepsis and attributing it to a possible "genetic link."  

There is probably lots of stuff that you have never heard of.  I doubt that stops you from handing out medical advice.

[Kalio1]

No doubt the HCV led to your compromised immune system. How anyone could deny the connection I don't know. I have found that you have to go up high enough on the doctor food chain to find a doctor who is saavy enough to know this. Many a PCP will dismiss it out of hand just like these guys here are doing. Clearly they have not had it happen to THEM or they would not be saying such a silly thing.

When your immune system is fighting off trillions of virions a day of COURSE it is compromised! It is battling the virus which weakens our immune systems, so other problems are not being addressed. That is the definition of a "compromised immune system" any agent that is taxing your system that much is obviously causal.
I too have suffered near fatal infections from Hep C ( with 3 doctors onboard who never thought to test me for HCV) and never checked for underlying problems but just kept putting out bacterial infection fires instead. I suffered two episodes of spinal meningitis caused by this virus and requiring two mind bendingly painful spinal taps and hospital visits. Your brain lining swelling is a pain I hope I never have to revisit.
Numerous bacterial infections I had were so serious I had to see the doctor daily or be hospitalized. Still, no one checked for HCV. So so frustrating. Knowing a simple blood test would have prevented all this from happening BEFORE it had ravaged my liver makes it that much more frustrating! I know Im preaching to the choir here, you have gone through so so much, but you are still here and fighting. I admire that a lot.

People who say Hep C and the immune system breakdown are not related clearly don't realize that it is all connected. Don't they realize the knee bone's connected to the thigh bone, etc? That our body systems are all connected??

I have found in addition to doing treatment, immune system supplemental support has improved my overall  health greatly. I don't know if you take any supplements but they have helped me to rebuild my immune system.Maybe they could help you too.

Best of luck to you, BT. You are so courageous. It is a miracle you survived that Strep episode. You have battled this virus so valiantly, you are a true warrior.

[Kalio1]

You can start with the links I posted to Child. You can do research on "extra hepatic manifestations" or "HCV related disease"
try googling HCV related disease
or
diabetes and HCV
or
cancer and HCV
or
lymphoma and HCV
or
blood disorders and HCV
or dermatologic disorders and HCV

the list goes on and on.

[Kalio1]

If you don't believe you can contract an STD in a Jacuzzi, you need to read this link:

http://www.soc.ucsb.edu/sexinfo/?article=kinky&refid=005

[Kalio1]

My "silly" comment was really not aimed at you, it was aimed at anyone who wants to deny the link between HCV and a weakened immune system.
I notice often it is those who have HCV but as of yet have not sustained radical damage or have not yet had to treat who say this, you never see those of us who have had HCV ravage our livers and immune systems make this claim. People who are "waiting on better tx" are often not willing to accept that what happened to me could happen to them. They want to believe HCV is relatively harmless, that it isn't compromising their immune system,that it isn't linked to a higher risk for other illnesses and diseases, but in many, it is.
Not recognizing the connection between HCV and my immune system breakdown is what led to me becoming even more ill, so it's a sensitive subject.

I imagine you do recognize there must be a connection as you have gone through so much with Nick and dealt with so many health issues with him that are all connected. His hemophaelia caused him to get HCV which caused his liver problems, it's all connected.
I know you are all about learning, sorry if my "silly" comment offended you, it wasn't directed towards you.

[jmjm530]

Weigh anecdotal stories for what they are, anecdotal. Here's my anecdotal story-- I waited three years after I was diagnosed with significant liver damage (stage 3) to treat -- and as you know I then treated for 54 weeks and SVR'd. I waited this long because I understood the risks of the treatment drugs could outweigh the benefits. I felt pretty good before treatment, I'm dealing with a number of post treatment issues now, including skin problems, digestive issues,  and what looks like a spike in my lipid profile --  not very encouraging as heart disease runs in my family and has always been far more likely to kill me than HCV.

Looking back, my opinion of treatment has only changed to the extent that I even more keenly convinced than ever that SOC treatment is a last resort approach. It now only can be disruptive to your life while treating, but can have profound effects on the immune system after treatment, perhaps permanently.

I'm certainly not telling anyone to wait as long as I did. In fact, I think some sort of a reasonable case can be made for treating or not treating at pretty much every stage -- although again I personally think that most -- even those gung-ho on treating should at least wait out this year and access the Vertex results before jumping in to SOC.

Anyone who presents this as a black and white issue simply are well, oversimplying.

I copied down a number of links several months ago when we had multiple discussions on post treatment and treatment side effects. Anyone who thinks the side effects stop when treatment ends might take some time and look through these links:

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html




-- Jim

[jmjm530]

Sounds like you're now getting excellent care and advice. My thoughts on treatment were not directed toward you and Nick, but were more general in nature. It's a very individual situation with many, many variables.

All the best,

-- Jim

[copyman]

thanks jim for your great input once again. you are one of the reasons that i continue to come to this site. and also one of the reasons why i have not elected to treat as of yet. it is really weird how i feel some here actually are wishing for others to feel bad or have sx like they do, seems everyone of their posts have negative overtures to them. i guess like the old saying "misery breeds comtempt".  they try and make tx sound like a piece of cake by telling newbies to run out get a bx and start tx asap but you tell it like it is. TX IS HARSH AND MOST OF THE TIME YOU WILL HAVE LIFE CHANGING PERMANENT DAMAGE TO YOUR BODY AFTER TX, THIS IS FACT NO ONE CAN DENY IT! jim, please do not ever stop telling how it really is. since doctors do not tell the patients the truth about what tx does someone has to. keep up the good work :-)

[wyntre9]

Everyone knows there are a lot of great folk from Tenn.  

(wonder if he can even locate it on the map?)

So go hug your new grandbaby and stay happy.  :-)

[chcnme]

Tennessee?  Hold on just a second ... you mean to tell me you know little or nothing about a viral load and have the nerve to trash your doctor, accuse research docs of having no interest in their patients other than lining their pocket, you then talk rudely to some very knowledgeable contributors to the forum here who gave very good input, AND - to top it all off - you trashed people from Tennessee.  That bothers me (but not because I'm from TN.)

Maybe you need a break.

http://tinyurl.com/2sz9pm

And then ... maybe spend some time reading up on Eva?    

Peace

[jmjm530]

I just read backwards a bit in the thread to see what I missed. So where are all the folks who objected to personal attacks last week on this one?

Peace to you as well,

-- Jim

[Kalio1]

It is not true that most people who do tx end up with lasting problems, not true at all.
A small percentage of people develop problems.

If you are going to shout things like that out, show your science or some evidence to back it up. Just saying it loudly isn't enough.

[wyntre9]

Good point.

[jmjm530]

It's easy to get worn out on this issue, that's why I kept links to discussions when many of the members would chime in on these discussions to give a more rounded viewpoint. If you look through those links, you will see some who had mild side effects and some harsh, but at least it's more than just a very small group of frequent posters (like myself) throwing in their two cents as gospel. BTW feel free to copy those links and post them yourself whenever you feel they might help inform people.

Be well,

-- Jim

[shastri20032003]

Heres a study on the health related quality of life and sexual health after SVR in patients with advanced fibrosis or cirrhosis
http://www.hivandhepatitis.com/hep_c/news/2007/022007_d.html
hope the results of this study can can be useful in this debate
Best Regards
Shastri

[jmjm530]

The post was not directed to any one individual, but it is interesting that those  in agreement with the rude poster are silent.  You ask, "Also, is rude and condescending the same as abuse?" As I've tried to state in the past, "rude and consdescending" and personalizing posts by attacking people rather than ideas IS abuse, and in the long run a lot more destructive than for example the frequent incident like last week. More destructive because these sorts of more "benign" personal attacks set the tone of a discusson group. I've made this case a number of times in the past but have received very little support from members, quite the contrary. Approaching the 1 year post treatment mark, I'm in the twilight of my stay here, so hopefully those now treating will call these things to MH's attention if they are in agreement.

-- Jim

[jmjm530]

Third sentence should have have read in part .... "infrequent" incident last week.

[jmjm530]

I have no doubt that successful treatment in someone with advanced fibrosis or cirrhosis could conceivably help someone's sex life. However, a lot of what this discussion has been about are those with little or no liver damage and no one I believe has suggested that someone with advanced fibrosis or cirrhosis should not treat. Probably no studies -- cause who would fund them -- but anecdotally, many here who have treated have shown decreased libido after treatment with no problems prior to treating. Thanks for posting the article but this thread has run its course at least for me as it seems to have ended up the way most of these threads tend to.

-- Jim

[ladybug52]

I left the post yesterday after having my say. Things did take a turn for the worse. Glad you jumped in Chcnme. Wyntre, B-bunch is a woman, JmJm did you hit the abuse button? I've already said I'm not afraid of being a narc, just not always there at the right time. Also, is rude and condescending the same as abuse?

[ladybug52]

I forgot to add...you are so cool! I love your input and your attitude!
Bug

[copyman]

seems someone is developing riba rage?

[ladybug52]

I didn't mean to sound on the offense, I was asking the question seriously, then it hit me that a public forum might not be the place to ask that question. That's why I added that I am not afraid to do it. I thought about it, but then wondered if there's a time limit or had you already reported. I guess the safest thing to do is don't ask, don't tell, just hit the abuse button.
That sounds sad :( when you say you are in the twilight of your time here. All the posts ask for your help or Mike Simon. I have learned so much from you. And you are truly kind and compassionate. I know you have been subject to personal attacks, this place is crazy sometimes. Before I started tx, I would just visit now and then. Now it's riba, fatty food, forum, work, riba, fatty food, forum.
I don't want anyone else to have a life either!

[jmjm530]

No offense taken, now or ever.

Be well,

-- Jim

[Kalio1]

I hardly think the comments were on par with what happened to Forsee, you are trying to correlate the two events and I don't see the correlation, one was far worse than the other, which is why there was a public outcry.

Certainly you would agree not every incident of rudeness requires a public hue and cry. You have no clue as to how I or anyone here chooses to handle an incidence of rudeness on the board.
Are we to notify you when we post abuse reports? Gimme a break. If you have something to say to me, try addressing me instead of making passive aggressive reference to me.

One does not have to publically say something in every instance of rudeness nor is every impolite thing people say worthy of reporting.

[chcnme]

I love all you guys.  I might have 10 min here and there lately  (to read mostly - don't have much time to contribute anymore except very briefly - just don't have the time I used to), but - I want you all to know when I DO come and read, you are ALL in my best of wishes and prayers, and I read and wish I could comment on some things and show my support, but time won't let me like it used to.  The ones I've met here and who helped me so much on any questions I had when I came, I can't thank you enough - you know who you are.  The ones I just enjoyed laughing with and jawing with or ... moaning with, I can't thank you enough, either.  You know who you are. The ones I have mostly LMAO at - yes, you know who you are too ! :)  Gotta go.  Everyone hang in there.

[crazydeb]

thanks all who have been posting about to treat or not and etc. i was just diagnosed and not seen specialist yet but getting nrevouse after readind some of these posts