Someone answer me please?

[suezy588]

I was recently diagnosed with hep c type 2 and i was very ill with a pain on my right side. The doctors
think its cronic. I had the viral load done and it is One Million Six Hundred and Eighty I was very upset, to say the least.
I stopped smoking [its been 6 weeks] I quit drinking and started juicing and using hydrogen peroxide food grade, milk thistle
and doubled vitamin c. I also take green food supplement. The pain left; the fever is gone and I feel so much better. They checked for
liver damage and fibrosis and found nothing. All is normal. I wonder has anyone cured themself of this disease?  I am determined in God all things are possible.

[jools57]

Indeed with God all things are possible. There are people that clear the virus on their own, but I would suggest having another blood test to see if that is the case with you. Did you have a biopsy? I too juiced after I found out I had Hep c, and my liver enzymes have been normal, but until I started treatment I stll had a viral load. I was clear at 12 weeks, and being a geno 3 am considered a slow responder so am extending treatment to 48 weeks. Please have another PCR test to see what your viral load is now. Keep on praying, and believing that by His stripes we are healed. There is alot of great info, and people here. Wishing you all the best on your journey.
Blessings

[benefitsdonna]

I also was convinced the natural route was the way to go, but after being allergic to milk thislte, that quickly ended.  I don't believe you can cure yourself of the disease.  Complimentary (homeopathic) medicine is helpful, but you still need a good gastro to help you thru.  i am also type 2, beginning treatment on 11/2.  Good luck to you, consider doing both tho.

[ladywhy]

I'm in agreement with jools.. I'm also curious about this hydrogen peroxide food grade...how are you using it?

[merryBe]

Hi, you sound just like me. except I was sick for a long time before they caught it. similar VRL.

symptoms of chronic inflammation as you described came and went, returned with a vengence finally. Sure take vitamin c. you will not cure this with vitamins or herbs though. Peroxide has as many bad side effects as well good, more really; it does cause free radical formation. When we think we are doing all we can, our pains can lessen. that doesn't mean the disease is gone, just that your possitive steps have calmed your mind and pain. Meanwhile the bug marches on. think termites if it helps you visulize, very small cells, destroy healthy liver tissue, which is then replaced with fibrous grisszle like stuff that can't do any liver function. If you kill the bugs in time, you may get a full return to normal. IN TIME being key words here,nuf said.
hope that helps

Let's face what really is going on. You have chronic hep c. Onlya very rare few clear this virus on their own. there are no documented cases of this happening as a result of your treatments.
if you have a mil-plus already virus cells per ml of blood, then your liver could already be pretty far along in the process. Hep C is fatal, left untreated.

ergo. 1 get insurance 2. get a hepatologist, 3, get a biopsy.4 start treatment.
Interferon give you more of the stuff your body already makes to fight this disease, ribavirin itterrupts the ability to replicate/make copies. this is the only treatment now that's proven to clear 50-90%
(depending on your genotype)
DO NOT WAIT to do this, as there's no way of knowing how long you've had it or how much damage has been done. Much liver damage can repair, but not ALL.there is a point that reversal is no longer possible.
therefore a year popping natural cures is a year playing russian roulette....in my opinion.
hope that helps/

[lsaldy]

Just a thought......you do not want high iron in your blood when you have a damaged liver...so just a forewarning...Vitamin C is an EXCELLENT way to help the body absorb MORE iron into the blood stream....I personally would be very cautious with Vitamin C load

[jmjm530]

Merry: Hep C is fatal, left untreated.
---------------------------------------------------
I certainly don't want to debate "treat or don't treat today", but the above statement is simply not true.

There are a number of articles on the natural progression (including mortality rates) of Hepatitis C, but here's one from the Clinical Care Options web site. Free registration required.

"Grappling with HCV Mortality Data"
http://tinyurl.com/2cxkhu

".In summary, despite its shortcomings, this paper reminds us that not all people infected with hepatitis C will progress to end-stage liver disease. If estimates are correct that 3.9 million Americans are infected with HCV and 11,000 die annually of complications associated with that infection, then that translates to a risk of death of less than a third of a percent per year. That level of risk supports the position that, given the uncertain course of progression and the problems associated with currently available therapies, patients should not necessarily be rushed onto therapy. The task of the physician in caring for patients infected with HCV is not to blindly put everyone on treatment but to use their best clinical judgment in evaluating and monitoring as well as delivering antiviral therapy. It emphasizes the need to counsel our patients to modify behaviors that negatively affect disease progression so as to reduce and possibly even reverse that progression."

###

[merryBe]

ok,all due respect, because you are much more knowledgable than me, and I know this is a debatable subject.
However,
what does hep c DO??
it breaks down your immune system, fighting this virus does that same as a flu cold or HIV;, which in turn starts other immune breakdown, I currently have 8 other autoimmume, possibly brought on by the hep c condition to begin with.
Which will get us in the end.?????....who's to say.

ONe thing is for sure, the liver does the lion's share of all the body's metabolism, it's not the organ you want being eaten away at, it will effect all else if this happens. If your liver doesn't work you get no nourishment, almost no cleansing, so all the good stuff cannot get made. (did take/teach anatomy at one point so not entirelyin the dark here)
So what kills us... half a dozen one way......

I guess the question becomes does the mortality rate really accurately reflect what killed people?
How many autopsies say "congestive heart failure" when undertreated diebetes was the real culprit?
I'd rather err on the side of making people take the disease seriously than not; cause IT is sure as heck  taking ME seriously!!! And I haven't smoked or drank myself into ill health either, it's all this virus that's broken down my immune system.

and absolutely it can be reversed! You are right, but it happens without treatment very rarely in adults.

MY first act upon diagnosis was to find out how at risk my family was.
People need to take that part seriously too.
SO GUESS WHAT.... my son was exposed in utero....and our spouses can be infected.thank God mine hadn't been... AND my SON CLEARED it, probably right after birth, on his own, but that's pretty rare!!!!!!  AFTER all this....why wouldn't we take this seriously and treat at whatever age. I suppose if you have no contact with others it doesn't hurt to wait until a no sides tx comes along, if in early stage of course,, but anyone planning on relationships, marriage, childbearing?? TREAT the disease, don't risk yourself and/or your loved ones!!
well, I'm sure you see those point Jim.

I was told HEP C is an epidemic, there may be 5 times more than we know yet, AND it's the largest blood borne disease on earth. They now have classes in my town, to help familiarize all the new cases as their isn't time to educate them in offices being overwhelmed with new cases...and the clinic I go to has 100-200 new cases per month, the city has a thousand new per month. People present in so many stages it's not funny. If someone somes in, and bleeds out from the esophageal complications, they don't chuck that up to hep c on autopsy.

This disease Jim, is being so underplayed my doc didn't test me even though I had pain and elevated enymes for years...
so I'm a little alarmist right now. Sorry. Plus I've been reading way more than probably what healthy for my sanity.....thank you ribavirin!!!!!! not. can we spell jittery boys and girls??

anyway, remember how they downplayed HIV/AIDS in the early 80's?? Well.....half of certain countries now have it, too little awareness too late. Let's not repeat that fiasco!

[jmjm530]

The points you raise have been debated rigorously here many times and I have no desire to do it today.

My only point was that your statement ": Hep C is fatal, left untreated." is incorrect, and I posted a study to back it up. There are other studies out there that may use different figures and I'm sure one could debate the figures with arguments like you've used.

However, your statement was an absolute statement that IMO is incorrect and could be quite alarming to many -- especially those who have tried treatment and failed.

Be well,

-- Jim

[Zoegirl2007]

Hello, I am new to this  board so HI!!!!
Ok I completly agree with your above statement..... "Hep C is fatal, left untreated." is INCORRECT." Our doctor told us that my husband could very possible out live this disease's damages. We have opted to go ahead at some point and try treatment, but we were told there is no hurry. My husband has had the disease for 24 years ( since birth) and has no liver damage at all!!! pretty impressive I  think myself. I also agree that it is very alarming for others to read false info. I remember when we first started researching Hep C all the false info out there was very misleading. I have read many of your post and really respect your thoughts and opinions. Thanks for the "Good" info....
                                                          Zoe

[tedinoregon]

"if you have a mil-plus already virus cells per ml of blood, then your liver could already be pretty far along in the process. Hep C is fatal, left untreated."

That is completely false.  The VL has nothing to do with how much liver damage has occured thus far, or could occur in the future.  I have always had high VLs, ranging from 18mil/mL to 7mil/mL (pre-TX VL), yet my biopsy (2004) revealed I have no liver damage and my alt and ast have only been slightly elevated at most (pre-TX analysis).

It is suspected I contracted Hep C after a major car accident in 1986 when I was 18yo.  I lost alot of blood (90% of left hand was severed, but re-attached) and I had blood transfusions.  I found out I had Hep C right when testing became available and I donated blood, ~1992.  Well, 21+ years later and I'm still doing OK.

[moahunter]

I have a cousin who died of Hep C under the age of 40 (picked it using drugs while sailing the oceans on a Merchant ship). Perhaps the statement should have been "Hep C is often fatal, left untreated". It often is. There is a reason it is the number one cause of liver transplant today. It is a very serious illness that kills a lot of people. Will it kill you or me? I don't know, and no-one else does either. It might though.

[tedinoregon]

a quote from Hepatitis C Information Central:

There appears to be no significant correlation between HCV RNA levels and ALT values or histological activity in patients untreated by anti-viral therapies (Interferon). Viral load varies between infected individuals but is not a useful prognostic indicator nor does it measure the severity of virus-induced liver disease.

From HCV Advocate:

Hepatitis C VL is not a determing factor for how sick or what time frame a patient will get sick, but is a useful tool for determining course of treatment and the effectiveness of treatment.

[moahunter]

I don't disagree. Viral load is not relevant to progression (it seems). It is relevant to the odds of succesful treatment though.

I also have a father in law in his 70's who has had the disease for many years with few symptoms (just some tiredness and misery, on the odd day). He doesnt drink (Japanese), which probably has helped. It is no guarantee though. I have a work colleague in total misery and tiredness. She has recently decided that treating is no worse than what she is going through. To each their own choice.

[tedinoregon]

I am sorry about your cousin, but lifestyle has alot to do with the severity of the disease and how it progresses.  If one gets Hep C and drinks for years, obviously the disease has an avenue to progress more rapidly.  Perhaps he picked it up using drugs and kept partying years beyond contracting the disease, amplifying the situation.

Your statements are not correct either.  Just because it is the leading cause of liver transplants does not mean everyone who gets it dies.  Hep C is not "often fatal if left untreated."  Just to clarify this matter statistically, according to the CDC, out of 100 Hep C infected individuals:
55-85 of persons might develop long-term infection
70 persons might develop chronic liver disease
5-20 persons might develop cirrhosis over a period of 20 to 30 years
1-5 of persons might die from the consequences of long term infection (liver cancer or cirrhosis)

So the fatality rate from long term infection, according to the statistics is 1-5%.  And you also missed my point, there is no correlation between VL and progression or severity of the disease.

[moahunter]

I am glad you think you are more correct and accurate than me. Good for you. You share your opinion, I'll share mine.

"Hep C is often fatal if left untreated". This is true. It is the number 1 cause of liver transplant. Many people (millions historically already I expect) have and will die of Hep C. I didn't say, greater than 10%, or greater than 20% or greater than 30%, etc. I said often.

You are focusing only death rates as well. What about the misery that many get from symptoms? Maybe not you, but many do. What about just plain old Cirrhosis?  5-20% in 20 to 30 years? I'm going to live longer than that hopefully, so what are my odds? Pretty high I expect. What are the odds at 40 years? Or 50 years? Seems pretty clear that this virus damages our livers. Just a matter of whether or not we will outlive that decline.

[tedinoregon]

I am still baffled how you can say often yet not that many die from Hep C?  Yes, some get sick and develop complications, but only 1-5% die from those.  That is not often.  Often by definition (Webster's Dictionary) means repeatedly; majority of instances.  That is not the case.  I don't think I am more correct or accurate than you...I am because I am stating factual data.  1-5% does not constitute often.

And yes, Hep C is the number 1 cause of liver transplants because it is a progressive disease.  But that has nothing to do with how frequently the disease kills.  Auto accidents are the #1 cause of death for young adults, but that doesn't mean the majority of people who drive will die in a car.  

You are born with 70% more liver than you actually need to survive.  So only a disease that progressively eats away at it will require a transplant.  There are not that many competing diseases for the liver, besides alcohol induced cirrohsis.

I am glad you are twisting your words to make it seem like your statements were OK to say.  People come here for support and optimism.  If they wanted to be pessimistic they could just avoid the forum and sit quietly alone.  Your advice and your statistics are completely false.  I have had Hep C, and others I know too, for years.  I am at the 21 year mark and no damage.  I live for today, so I don't care what tomorrow brings.  I will live healthy and continue doing so no matter what.  I hope I am and continue to be an example of how people with Hep C can be healthy and live a normal life.

[moahunter]

Dictionary.com:
"1. many times; frequently: He visits his parents as often as he can.  
2. in many cases.  "

In many cases people have, and will in the future, die of Hep C.

I am just trying to provide a little balance on this board. IMO it is not compassionet to sugar coat what is a serious disease. You may think Hep C is not a serious disease, but I think it is. I would hate for my children to catch it.

Yes - people come for support and optimisim. But IMO, people sometimes need to face up to reality too. You are lucky, and have managed 21 years. Good for you. But others haven't, and others have been saved from a lifetime of worrying through treatment. Just trying to provide some much needed balance.

[BThompson4]

"And yes, Hep C is the number 1 cause of liver transplants because it is a progressive disease.  But that has nothing to do with how frequently the disease kills."

What a ridiculous statement.  Try getting a liver unless you are pretty close to dying from liver disease, with hep c being the main cause of transplantation.  People that have a lot of years left simply do not get new livers.  The supply of livers is way to small to meet the demand.  Why do you think they call it End Stage Liver Disease?  The end stage referred to is imminent death.  

Glad you are doing so well after twenty-plus years.  But lots of us aren't so lucky with hep c.  I had multi-organ failure and barely survived 25 years after getting hep c, and was given only two years to live after that.  I didn't feel at the time like improving my attitude and embracing optimism at the time would reverse my liver damage and allow me to live a long life.  This disease can be brutal for many people-- optimists and pessimists alike.

[ladywhy]

BTW: Many Japanese men drink...saki...beer etc. I'm not insinuating that your father-in-law does...but you have mentioned numerous times before about him being "Japanese." So once again...i will mention a fact. After World War II, (1950's) Japan had a very high rate of IV drug abuse. They are way ahead of the USA (at least for now) regarding the number of the hcv infected population. Actually, I believe they have the highest hcv population worldwide.

[tedinoregon]

How is that ridiculous?  Your statement makes absolutely NO SENSE!  Just because it is the number 1 cause of liver transplants does not, I repeat NOT mean it kills Hep C infected people frequently/often.  Just because 1-5% reach a terminal state has nothing to do with how frequently the disease kills.  Again, you are misinforming people because your situation is not the norm.  And what does the supply of available livers have to do with anything.  There is not a large supply because of various reasons.  It has nothing to do with how frequently Hep C kills or reaches a terminal state.

So the ones here for support and advice on TX have to put up with the misinformation, bad advice, and negative attitudes from a couple of you who are just acting like martyrs because your situation is more serious than the majority of Hep C infected people.

Having a MS in Biology and being an HPLC Tech Support Application Specialist, most of my clients are Pharmaceutical R&D, I can assure I am relaying the facts from scientific data.  Perhaps your ignorance regarding statitsics is not going to allow you to understand how the data contradicts your statements.

Remember, this thread and subsequent battery of misinformation from people such as yourself, maohunter, and merrybe started due to ridiculous statements such as
" if you have a mil-plus already virus cells per ml of blood, then your liver could already be pretty far along in the process."
"Hep C is fatal, left untreated"
"Hep C is often fatal if left untreated"

Moahunter, sugar coating is one thing, fabricating stories is a completely different matter.  You make no sense and your statements contradict scientific data.  You need to face reality and realize most Hep C people do not have a terminal condition and lead a normal life.  Stop making statements such as Hep C is often fatal.  That is absolutely FALSE!  

[tedinoregon]

"And yes, Hep C is the number 1 cause of liver transplants because it is a progressive disease.  But that has nothing to do with how frequently the disease kills."

What that means is just because it is a number one cause of transplants does not mean the disease is a terminal situation for all those infected.  According to the data Jim posted, if 11k people die annually from Hep C, yet there are 3.9 million infected, that translates to an annual mortality rate of 0.28%.  That is neither often, frequent, or alarming.  Yes, for those who have a terminal situation it is serious and I truly feel sorry for them.  However, this does not mean we need to tell every newly infected person their Hep C is a death sentence, because statistically it is not.

[BThompson4]

Lets just get rid of all the transplant programs in the country, since Hep C doesn't kill frequently enough to worry Big Ted.  Instead, we will have posters and videos of Big Ted saying don't be a wimp and succumb to hepatitis c.  That will straighten everybody out.

For everybody whose health has been devasted by Hep C.  Keep repeating Big Ted's words of inpisiration:
"I am at the 21 year mark and no damage.  I live for today, so I don't care what tomorrow brings.  I will live healthy and continue doing so no matter what.  I hope I am and continue to be an example of how people with Hep C can be healthy and live a normal life."

I feel better already.

[Willy50]

Here's my gripe(s)

I don't believe in telling people what they "should" do.  We're not doctors.  We don't have people's medical records and have no familiarity with their situations.  No doctor would presume to give such advice on line; neither should we.

I strongly dislike absolute statements when much about this disease defies simplitic statements.  We all have different experiences with the virus.  Those statements which seem so certain with no qualifications often betray a lack of knowledge about the virus or it's treatments.  

I love seeing the item posted where the virus may take 1-5% (untreated) of us but whereas it may have been true for people who have had the virus for 20-30 years it may not hold true for us if we live to be 80 or 90 years old.  There are newer studies which suggest that the advance of liver damage reaches a bell shaped curve and really starts advancing in the latter 50's and 60's for many more people as immune response diminishes.  They claim that if you live long enough all people with HCV will end up with cirrhosis.  This is the latest theory; it surely hasn't been proven and will soon become mute for many of us.

The flip side of that argument is that all the fatality info was based largely upon people who didn't take care of themselves.  They didn't know (and this is STILL true for the majority of us) that they even had HCV.  Their own doctors or government sometimes didn't tell them.  OF COURSE they suffered a higher rate of sickness and  fatality.  Most of us quit drinking or even smoking when we are diagnosed; this can add years and QOL.

Now....... as mentioned it's really going to be a mute point for many of us.  Many of us (and by many I don't mean 5% : )) will treat and cure sometime in the near future.  This will change our fatality rate dramatically.  The rate of liver cancer and transplants will certainly also drop.

Some people may need to treat now.  Some simply chose to right now.  The SVR rate for genotype 1's is usually thought to be closer to 40% (which suggests a 60% failure rate).  New treatments coming in about 2 years may very well bring it a 80-90% SVR rate and in HALF the treatment time.  I don't think the risks should be overstated to try to get people to treat without delay.  People need to research the subject and really understand what they are doing before committing to a year of TX.  It's one of the most important decisions they will make in their life.  

By the way......I'm 54 and in good health.  2 years ago I took 3rd in my age (50-54) group in a 5K race.  Not all people have serious symptoms from having HCV.  I may have had mine for 30 plus years.    I'm not against treatment;  I'm just not PRO treatment for all when more effective and shorter treatments are so close.

Best,
Willy

[BThompson4]

"I am at the 21 year mark and no damage.  I live for today, so I don't care what tomorrow brings.  I will live healthy and continue doing so no matter what.  I hope I am and continue to be an example of how people with Hep C can be healthy and live a normal life."

Aren't you currently on SOC treatment?  Kind of contradicts your statements about how you have been beating the disease for 21 years.  Maybe your optimism is waning.

[moahunter]

I agree with most of your post.

"People need to research the subject and really understand what they are doing before committing to a year of TX.  It's one of the most important decisions they will make in their life."

I don't fully agree with this. I have read that some people love information on thier illness (whatever it is) but that others would rather trust their doctors / medical proffession. Neither approach is right or wrong - people are just different. Trusting your doctor without information, and succeeding, is just as good or bad as looking things up and succeeding. At the end of the day though, IMO, only doctors and bio-chemists can really understand the techcnical aspects well. The rest of us are just looking for information to support our views, or make ourselves feel better, or in the hope of a better treatment (or to pick stocks:-).

"Some people may need to treat now.  Some simply chose to right now.  The SVR rate for genotype 1's is usually thought to be closer to 40% (which suggests a 60% failure rate).  New treatments coming in about 2 years may very well bring it a 80-90% SVR rate and in HALF the treatment time.  I don't think the risks should be overstated to try to get people to treat without delay. "

What a lot of peope do not realize is that beginning treatment does not mean you are committed for 1 year. After 4 weeks, you will know if you are RVR. If the response is OK at 4 weeks, option of extending. A good specailist will know how to interpret this. But 4 weeks in, you will know if you can tolerate the treatment. Most people can manage 4 week to at the minimun, find out if they are RVR IMO. You will also be on less drugs than will be the case with the new treatments (which will almost certainly "add" to the mix).

No-one knows what the new medical treatments will acheive, and whether or not the side effects of them will be tolerable. There may even be side effects we don't know about (like Vioxx), and it may take at least a decase before doctors have the prescribing knowldege they have now with existing treatments (that work for many)

It's fine to decide to wait and hope and wish. Just understand there is a risk and stress in waiting for that miracle drug that will make treatment shorter. And even then, there will be people telling you to wait for the next miracle drug that will be better still.   Some times its better not to put things off, we can't be scared of everything in our lives. At least, that's how I feel, having seen how devastating the impact of Hep C can be. I am RVR. Many of the people waiting may be too, if they give treatment a try. It is a miracle to me that we already have treeatment options - I feel very lucky relative to other generations.

[mikesimon]

This thread has more misinformation that most I have read recently. MerryBe is one of our newer, most frequent and misinformed posters we have here.

I believe the truth to be:
1) VL does not correlate with liver damage but it can affect the response to treatment
2) HCV is not "often" fatal
3) Some (a minority) people with HCV will progress to end stage liver disease if untreated and some will progress to ESLD despite treating
4) Of course, a healthy lifestyle improves one's chances (and excessive alcohol consumption significantly worsens one's chances) of not progressing but, genetics and genotype play a large part and there are people who have lived pristine lives but nevertheless progressed to cirrhosis and end stage liver disease
5) HCV is the leading cause for liver transplantation

Mike

[jmjm530]

I didn't want to put it that way but I can't say I disagree.

BTW the "often fatal" mischaracterization came later in the thread by others.

"Merrybe's" original statement was " Hep C is fatal, left untreated" which I found
even more alarming, especially to those who might have treated and failed.

-- Jim

[moahunter]

2) HCV is not "often" fatal

Maybe this is not often enough for you, but it is for me.

"HCV is responsible for 8,000 to 10,000 deaths per year in the United States, according to the Centers for Disease Control and Prevention (CDC)."

"Called "the silent epidemic," 70% of Canadians officially estimated to have the disease don't know they're infected. Symptoms are similar to other forms of hepatitis. Only 5-25% of patients seek treatment. The long-term effects are devastating -- a third of victims will develop end-stage liver disease. Hepatitis C is the leading cause of the need for liver transplants."

As another poster noted. End stage liver dissease is as close to death as you can get.
I also wonder how many deaths from Hep C are attributed to other causes that are the ultimate reason for death (e.g. liver fails, but heart fails as well, so attributed to heart failure). I know in my Cousins case (I have many Cousins - 50 plus), it was considered "a dirty" thing in our family, and it was not until I was infected that I learned that Hep C was the real cause of death.

[jmjm530]

I'm finding the ongoing discussion trying to define "often" is missing the point. The stats are there for people to look at. If they think it's "often" that's fine. If they think it's "infrequent", that's fine too.

The point that is getting lost was that "MerryBe" said  " Hep C is fatal, left untreated" which is an absolute statement and could unecessarily alarm others.

Hopefully, people will look at the actually stats, consult with their own doctors and loved ones, and then come to a decision that makes sense for them.

-- Jim

[moahunter]

Fair enough re often.. Maybe Merrybe went to far, but it seems to me that she was simply highlighting that this is serious. Some of the other posts skewed to far the other way in my view. Geno 2 is very treatable now for many.

[jmjm530]

But as long as the discussion is going on my two cents is that "often" is misleading based on the numbers posted earlier in the thread :)

Be well,

-- Jim

[jmjm530]

Our last threads crossed, so the response was not to your previous post. I do disagree, however that she was "simply highlighting that this is serious". Anyway, 'Nuff said on this here.

-- Jim

[moahunter]

The number of deaths is expected to tripple in the next 10 years or so, as more baby boomers find out what they have, and how they are paying now for the 60's and 70's. As mentioned, there are many unreported deaths too. This disease still has stigma, hopefully that is changing. As more people get cured (like Tyler), hopefully more and more will speak up.

[mremeet]

Not to jump into the maelstrom, but do not underestimate the "ancillary" diseases and health conditions that a long term HCV infection can bring on. Diabetes, gallbladder disease, chronic fatigue syndrome, autoimmune disease, cryoglobulinemia, heart disease/stroke/amputations etc (as a result of diabetes) etc. In the case of diabetes, there's no question that this disease can and does grind down a person as they get older, easily outright causing or exacerbating other health issues that can and do become the primary cause of death. And since the death is not directly caused by ESLD, it isn't statistically chalked up as a death caused by HCV...but really its origins are ultimately from HCV. I suspect HCV has indirectly taken many more lives than it has directly taken via cirrhosis/ESLD. And even if you live in basic harmony with HCV for many decades, if you still have it into your 70's to 90's (when your immune system really starts to wane) there's a good chance it'll finally rear its ugly head when you most need it not to. And of course all of these ancillary side effects can grossly interfere with your QOL and take so much from you while you're alive, even if it doesn't outright kill you.

Anyway, lets not forget there's more to those HCV death stats than meets the eye.

[bobbyullc]

i believe the question should not be to tx or not to tx but whether one can wait 1 or 2 years for newer, shorter and much more effective and less toxic tx to be approved? i felt great when i tx'd and now, 1 year after i still feel like **** and have lingering sides. why tx if you are stage 1 or 2 or maybe even a beginning stage 3 when hope is around the corner.  i did clear but would give it back if i could have my health back and time to wait for new tx.

i was at 37 years and stage 3.3 when i chose to tx.

at the beginning of this thread i thought "boy these guys are sure being polite" then it deteriated to the same old personality problems. cool down.
aloha

[moahunter]

i believe the question should not be to tx or not to tx but whether one can wait 1 or 2 years for newer, shorter and much more effective and less toxic tx to be approved?

What makes you think adding more drugs to the mix will be less toxic?  And what makes you think 1 to 2 years for new drugs? And what makes you think there won't be another drug to wait for 1 to 2 years after that? And 1 to 2 years after that? And 1 to 2 years after that?

The question should be, why not try the current treatment (which is milder than what we will get), for 4 weeks first, and see if it works? Why subject yourself to additional drugs when treatment is already available. Again, just to add balance. It's a personal decision. Some want to treat and hope, some want to wait and hope.

[bobbyullc]

please also understand that there are many who have "qol" problems directly related to this current tx. that are not taken into account. at only a 45-50% chance of svr after 48 weeks of misery why rush if you can wait. also i have never seen any of these studies of hep c causing anciliary diseases? they may be out there but where.

i would also like to comment on the "stigma" of hep c?  what stigma?  you can only let THEM attach a stigma if you let them. i have NEVER felt any stigma and i got it from shooting herion in the 60s. i am not that person any longer. the people who may want to attach a stigma toward me do not matter in my life.

[moahunter]

The stigma is real - people have lost their jobs. There is a good thread on this, with an article that explains it. All illnesses carry a stigma for healthy people.

You haven't answered my question, re someone who has not tried treatment. Why not try 4 weeks first, and see what happens? Odds maybe 80 or 90% if UND at this time. Many acheive this. Why not find out if there is a chance to use less drugs?

Adding an additional treatment drug to Riba and Interferon will not make side effects better. There are threads with people struggling on these trials.  Maybe the odds will be better, maybe the treatment length will be shorter. But, if it turns out we have great odds at 4 weeks anyway (which you can only find out by trying), the current therapy has to be better than the gamble of puting more toxins into the mix IMO.

[mikesimon]

You say: "i have never seen any of these studies of hep c causing anciliary diseases? they may be out there but where."

They're there - look around. Diabetes, Non Hodgkin's Lymphoma. Insulin resistance and Liver Cancer come to mind immediately.

In conclusion, the authors write. We report the incidence of several malignancies in a nationwide cohort of HCV-infected persons. Although the delayed diagnosis of HCV probably has resulted in an underestimation of the risk, this study showed a significantly increased risk of Non Hodgkin's lymphoma and multiple myeloma.
http://www.hivandhepatitis.com/hep_c/news/2005/031805_a.html

May 8, 2007 — Patients with hepatitis C have a 20% to 30% increased risk of developing non-Hodgkin's lymphoma and a 3-fold higher risk of developing Waldenström's macroglobulinemia, a low-grade lymphoma. "We demonstrated that infection precedes development of these outcomes and that the risk in individuals infected with hepatitis C is consistently increased, with more than 5 years of follow-up," reports the team led by Thomas Giordano, MD, from the Baylor College of Medicine and the Michael E. DeBakey Veterans Affairs (VA) Medical Center in Houston, Texas. Risks were also increased for cryoglobulinemia.
http://www.medscape.com/viewarticle/556228


Conclusions: Patients with chronic HCV infection have an increased prevalence of type 2 diabetes, and this prevalence is independent of cirrhosis. The pathogenesis is intriguing, appears to be unique to HCV, and requires further study.
Mayo Clin Proc. 2000;75:355-359
http://www.mayoclinicproceedings.com/inside.asp?AID=1410&UID=

That took about 5 minutes. I think the risk of HCC is so well established that I don't need to cite any sources but I am sure there are a lot of them easily accessible.

Mike

[bobbyullc]

in the 9 years i waited to tx the success rate went from 15% to 50%.    all the data coming in indicates that those svr rates will increase to maybe 90% with a much shorter tx time soon. the drug co's are on it hot and heavy and are showing some VERY hopeful results. the results on current trials WILL be in within 1 or 1 1/5 years.
if one started tx today the results from trials will be available before he completes and gets his results.
i view it like prostrate cancer. many have it but few have any negative affects if monitored diligently followed.
taking tx for 4 weeks and looking for rvr may not be a bad way to go but even with rvr it will be 48 weeks for geno 1's.
there is no indication that tx with vx and soc for 12 or 24 weeks, with a much higher success rate, will be any harsher than 48 weeks of soc.

[bobbyullc]

rodger.

[moahunter]

It would not surprise me if any new drug that is approved will only be avaliable for relapsers and non-responders first (why subject everyone to additional risk?). Or perhaps as an "add on" if someone is not responding to existing treatment. It is a bit misleading IMO to tell everybody that there will definitley be a new drug available for them in 1 to 2 years time.

[moahunter]

"taking tx for 4 weeks and looking for rvr may not be a bad way to go but even with rvr it will be 48 weeks for geno 1's."

I am doing 48 weeks as I failed an earlier acute monothearapy, but my understanding is that current protocol is 24 weeks for geno 1's who are RVR (or possibly around 30).

[jmjm530]

Moa: You haven't answered my question, re someone who has not tried treatment. Why not try 4 weeks first, and see what happens? Odds maybe 80 or 90% if UND at this time. Many acheive this. Why not find out if there is a chance to use less drugs?
----------------
While I said at the beginning of the thread that  I wasn't interested in entering a  "treat or not treat" discussion, I will jump in on this narrow and interesting aspect of the discussion.

Briefly, usinjg a  4-week stop rule as you suggest has merit in certain cases assuming one has the discipline to adhere to it -- because if not it can be a very slippery slope resulting in a full course of tx with odds far lower than the projected 80% for RVRs.

But even if adhered to by the letter, it only addresses part of the equation -- efficacy of treatment. What it doesn't address is exposure to Peg and Ribavirin for 24 or 48 weeks, depending on whether the RVRs in this hypothetical group opt for the longer or shorter course.

As I see understand it, "Watch and Wait" doesn't necessarily mean watch and wait for Telaprevir -- it means watch and wait until the risks of whatever treatment is current are outweighed by the rewards of SVR, as you compute them as an individual at any point in time.  And this computation is very individual. And because like you say, all treatments currently available (SOC and trial) have toxicity, including a shortened Telaprevir regimen.

In other words, in some cases it may make sense to continue waiting -- beyond Telaprevir for example to whatever is next or whatever is after "next".  

And in other cases, maybe it means jumping in with Telaprevir. Or maybe it means jumping in right now with SOC.

Anyway, that's all I really had to say.

Be well,

-- Jim

[jmjm530]

Let me tweak the 4th paragraph a little....

"As I see understand it, "Watch and Wait" doesn't necessarily mean watch and wait for Telaprevir -- it means watch and wait until the risks of whatever treatment is current are outweighed by the rewards of SVR, as you compute them as an individual at any point in time. And computed into the "rewards of SVR" would be a number of factors such as current liver histology, age, family and occupational situation, etc, not to mention the emotional impact of carrying the disease which appears to vary significantly from one individual to another"

[BThompson4]

You can be very sick for many years before you die of complications from Hep C.  Just because the disease does not kill you doesn't mean it is not doing a number on your health and is not making you miserable.  

Nobody knew I had hep c until four months after my sepsis episode.  I was expected to die from the sepsis and multi-organ failure.  I suspect many die (especially in smaller, rural hospitals) from sepsis, organ failure, encephalopathy and even diabetes that have not been diagnosed with Hep C.  These deaths don't get counted in the official numbers.

[Willy50]

OK......... so I'm not a "rapid responder".  : )    Sorry...working all day till 9 PM

Hey MerryBe.... don't "be" discouraged about getting the feedback.  It's clear that you are trying to help people with your information.  The people who offered some criticism (OK, I'm one too) are also caring and trying to provide help via information about HCV or it's treatment.  It's nothing personal; it's about getting the information right.  Obviously, we all have different takes on what is correct.

Moa had a reasonable point that has been answered but I'll throw this out.  Check out these RVR rates;

http://www.hivandhepatitis.com/2007icr/icaac/docs/091807_c.html

•" The proportion of subjects with undetectable HCV RNA (limit of detection 10 IU/mL) at Week 4 was 79% in the combined telaprevir/pegylated interferon/ribavirin arms, compared with 11% in the control group (P<0.001)."

I don't think we have to be a "doctors and bio-chemists " to see that they are making improvements in treatments.  Schering also has a potentially great compound in trials too which SGP claims could hit market in 2010.  

The fact is that very few people who do TX end up with an RVR; only about 10%.  Hey......by the way...... the Vertex trials have a lower percentage of relapsers than SOC too.

Yes, HCV is a serious disease.  The treatment for HCV is also very serious.    The better treatments coming will limit the exposure to these potentially harmful (the warning list comes right with the drugs) compounds.  Not only will the new treatments shorten TX....or perhaps double the SVR rate but they will reduce the exposure to the current SOC.  Bobbyullc is only one of many who have suffered long term residual sides from the current SOC.  

Yes......there are potential hazards of not treating.  There are also medical issues which have been caused BY the current SOC.  Those are also often under reported or misdiagnosed.  They still don't have a great handle on them but one can see thread after thread about them on these boards.

I stand by my suggestion that people research what they are going to do for a year.  

Did I say a year?  You keep dangling the possibilty of RVR but you don't mention the perhaps greater possibility of extending treatment.  For slower responders who don't achieve a 2 log drop at week 12 one may also see extended periods of treatment, sometimes up to 72 weeks.  Yeah..... one may also need procrit an neupogen during that time too and all too often the insurance companies don't pony up for those very expensive drugs.  

There was a time that monotherapy ruled the roost too......  : )  

SOC with only 2 compounds is on borrowed time.  I wholeheartedly support your decision to treat.  I just have a different take on recommending current SOC to newbies with low staging.

I'm just trying to provide you a reason why I consider it prudent for many (and in this case I mean more than 5% : )) people to wait.

Cheers,
Willy

[tedinoregon]

BThompson: "Aren't you currently on SOC treatment?  Kind of contradicts your statements about how you have been beating the disease for 21 years.  Maybe your optimism is waning."

Just because I am undergoing TX doesn't mean it is having a negative impact on my health.  I'm a healthy 39 yo male who works out 4-5x/week and feel great, besides the TX SXs.  I am doing this as I have genotype 2 and the probably of SVR is pretty good.  So why not?  Besides, since my insurance pays for the TX, why not give it a shot and get rid of it.  If TX doesn't work, life goes on.  I guess I'll know how it is going next week, when I get my VL checked, week 4 of TX.

The other motivation is to be able to obtain additional life insurance to ensure my family is finacially taken care of if something should happen to me.  As most of you are aware, it's quite difficult to get substantial life insurance with HCV.  However, if you are SVR for a year after TX, most companies will underwrite a policy for you.  That is State Farm's policy.

[willows]

Wow, I know I have the rep for only being here when Vertex stock is being discussed, but this is a crazy thread.  My gut reaction is always the same....the two folks I've known and lost to Hep C did not have "Hep C" written as the reason for death on their death certificates.   One died from "complications from pnuemonia (pneumonia) and hepatic failure", the other from "HCC."   Being a non-responder myself, holding the hands of those two folks gave me more than pause and I spent more than a little while being freaked out about the virus and it's continuing to dine on my liver.  So I know that the numbers are not accurate.  Hep C was finally discovered after a few years of the most horrific deaths occurred with no explanation.  

On the other side of that nasty coin, we are the recipients of the best tech and meds out there and with the wealth of info about how to take care of ourselves, we can all live a nice long time.  Exclude alcohol from anyone's life with Hep C and I figure we can muddle along long enough.  Of course, to clear the virus is optimum, but since when has anyone had it optimum?

But it seems to me that the disease is so complicated that any answer to the question of tx or not to tx is very freakin individual and has nothing to do with numbers or percentages.  With my doc telling me that my 30 weeks of SOC may have given my virus the heads up on mutating against IFN, I'm not so sure that I would or would not try it again.  I find the desire to rid myself of the virus, just to have the damn thing OUT of me...to be very powerful motivation.  

I can't be the only one who understands that when I discovered I carried the virus, I became someone different.  And when I failed tx, well, that was when the life journey really got interesting.  All I can say to all the hub bub here, is that my last bx, I went from stage 2 to stage 3 and that really rocked my world.  Doc said I could treat if I wanted, but he asked me to wait for telaprevir.  So I wait.  And it's cool.  I don't live in fear, not to worry jmjm.  .  But I also know that I ain't just whistlin dixie either.    This is freakin serious stuff here, I guess we just live with it every day and it kind of becomes commonplace.  Now ain't that a knot in the bonnet.

Willow

p.s.  I DO not only post when Vertex is being talked about.  I told you all about my bx last spring.  And I moaned incessantly about all the crazy posters this summer.  

[Proactive]

"But it seems to me that the disease is so complicated that any answer to the question of tx or not to tx is very freakin individual and has nothing to do with numbers or percentages"
I completely agree with you on that...For me, I had to treat, it's just my nature...
:^)Pro
PS: I really enjoyed our discussion the other day...Since being diagnosed and especially starting treatment, I really hadn't talked "stocks", read a 10Q or K, not even an S8 or 4..To be honest, I was a bit pumped up and had trouble sleeping...(lol) nutty huh.....;^)
I really miss the knock down drag out pennystock debates the most, but my mind is to foggy to hold my own(G)

[mremeet]

I must have missed the conversation where someone apparently said you only weighed in when vertex was being discussed. Not that it matters, you're entitled to weigh in where and whenever you please. And as far as I've seen you participate in a variety of topics, not sure where that's coming from. Anyway, yes I agree telaprevir is one our great hopes. But as we've seen recently boceprevir's looking pretty good too, and perhaps alinia may pan out as well. I think in just a few more years we're going to be able access at least some of these drugs widely, and don't count yourself out of possibly enrolling in a phase 3 trial for either telaprevir or boceprevir (which would enable you to get to it within a year or so). So it probably won't be long before you get your shot at putting this disease behind you too. I know the constant knowledge of this disease working on our livers can really weigh on us over time. But I very seriously doubt you're going to die from HCV, either directly or indirectly. Just take very good care of yourself in the meantime, and remember that your time will come.

[DebInDenver]

Whenever discussing hep c it is problematic when anyone makes absolute statements.    A lot of folks will never need treatment and die of other causes having nothing to do with hep c.

I decided to start treatment.  I was diagnosed in 1991 and started treatment Aug. 13th of 2007 with pegasys and copegus.  Starting treatment was a personal choice based on a number of factors...one of which was that I could take off from working for a year.  I'm genotype 1a, so my shot of cure is a bit less than 50/50.  I should know if my shot of cure is upped, as next week I do my 12 week vl count.  I started at 1.5 million copies and at 4 week tx. vl dropped to 222,430 copies.  I'm keeping my fingers crossed, but I still know that even if I'm undetectable that's no guarantee.

Anyone suggesting one better start treatment based on viral load is just misinformed.

[mikesimon]

Are you confusing "willing" with "willows"? I have never seen that charge leveled at willing or even an innuendo or intimation suggesting that willing only posts to vertex threads. Mike  

[mremeet]

Yep I inadvertantly typed in "willing". I meant willows, if you look above at willows' post it'll become more clear.

[cosmo23]

I have a question. If one can live 20 to 30 years with no side effects of Hep C or even better, out live it. why can't my husband get life insurance? He was diagnosed 10 years ago while applying for life insurance. He was of course denied, and has been for every policy, no matter how meager, ever since.

[willows]

Wow, I'm so tempted to post that Vertex is up today hugely and Schering is down badly, but I won't.  If you lived and died by the market, today, telaprevir would be the drug of the future and boceprevir is much less in favor, now that the analysts have taken a better look at the data, but again, I won't post that.  The market has been so quixotic lately, makes me dizzy to try to follow it.  Anyway, I'm not sure that I mind the rep of being a stock hound....... And I understand the sentiment of "I'm not going to die from Hep C" and I agree.  It's just the thought of tx again is so very unattractive, but it seems to be a constant for me sometime in my future...so watching Vertex becomes a great diversion.

I have met some of the classiest folks on the financial boards, all of them able to keep the hope for a GOOD treatment ahead of their desire to make money.  It seems to be good medicine for me...keeping perspective on the companies that are trying to find the cure for our virus.   I may not be experiencing success yet, but Vertex is.  And that is good for all of us.  Plus, ya gotta love the fact that WE are smarter about this virus than some of the financial worlds big talking heads...when they stumble, that is such a rush.  Vertex and telaprevir are the little train that could...and does.

[Proactive]

"Wow, I'm so tempted to post that Vertex is up today hugely and Schering is down badly, but I won't." You did (vbg)...First of all, don't lose site of the fact that sgp is a multinational big dog (which has done **** poor over the last years) but they do have a pipeline of drugs besides boceprevir(what does vrtx have,702,765,385?-still a one trick pony). I don't suspect the "analysts" (which by the way,motley fool is not) moved the price down do to an epiphany over telaprevir. As to vrtx, I would suspect more a technical bounce off an oversold level..
(I won't go into P&F charts, bollinger bands, stochs etc.) I look at vrtx as an excellent trading vehicle(and have traded it), but I'm still not convinced it is an investment..Perhaps if one really wanted to play "the drug", although not a pure play, J&J might be the much safer way to do it (G) (remember, vrtx needs cash and J&J has it-again, how much more will they have to give up as a result of selling market rights, shares of stock , or perhaps convertible debentures via a VC)
I look at things differently, on one hand you have the drug and it's great possibilities for hepc suffers, on the other hand you have the reality of investment in the drug..I can easily seperate the 2.

[Proactive]

"I have met some of the classiest folks on the financial boards" I have as well, I have also met many who delude themselves into thinking their posts on "those" boards move stocks with $4 B market caps and volume exceeding 2M shares a day..Not to mention many of "those" boards are full of misinformation, misleading information, down right lies, people yelling yahoo and people yelling boohoo.....many wouldn't know a 10Q from a kick in the nuts (to borrow that phrase from an esteemed poster here)
I wish you the best in your investment, I really do...but balance makes the world go round..'nite, have to leave at 5:00am to see the doc...;^)

[alagirl]

A lot of folks will never need treatment and die of other causes having nothing to do with hep c.
---------------------------------------

I keep wondering just how true that really is.  It looks as though we are finally beginning to research the extrahepatic damage done by HCV and it isn't looking all that pretty.  I'm too tired to find it right now, but there is a particularly compelling study on veterans and renal disease that seems to implicate HCV as a factor in renal issues.  More study needs to be done to confirm these types of issues, but I have to wonder how many deaths are perhaps complicated by factors associated with HCV, if only we knew to look.

[DebInDenver]

Hep c may set off many other types of illnesses.  A very good friend of mine died of Hep c 10 years ago.  He had many other side problems which led to his demise, but the top one and the cause was hep c.

I'm not saying hep c doesn't cause other problems or that people end up dying of those other problems, what I'm saying is that MANY people never get to the stage where the virus starts causing other problems.  I'm afraid I'm not in that number, but I know many who are.

[Willy50]

The thrust of this thread came from a recommendation that a newbie with very scant information was recommended that they treat, based on little evidence other than a high viral load.  It was offered that "Hep C is fatal, left untreated."

None of us who recommend waiting a few years are recommending that no one treat EVER.  My main point was and still is that we refrain from diagnosing or offering medical advice, that we try to steer clear of making broad or absolute statements such as the quote above.

I still feel as though it's a mute point what could happen to us as heppers in 10 or 20 or more years.  Many people can wait to treat a few years.  There is strong evidence that in doing so they may benefit thru shorter treatment times, higher SVR rates and a distinct possibility of decreased post treatment interferon and ribaviren side effects which are still a looming and undefined issue for a percentage of people who treat.

I don't think anyone in this thread is arguing to not treat; it's really only an issue of NOW versus several years.  (and as always based on their medical condition)  I think we may be in greater agreement than is evident.

best,
Willy