It's good to have a positive attitude but I think you are painting a rosier scenario than is accurate. It used to be thought that the majority of people with HCV would not progress to cirrhosis. Now as the population is aging, that thinking is being revisited. As people age, the ability of their immune system to keep the virus in check diminishes. I think it is now believed that a majority of patients with HCV will develop cirrhosis by the age of 65. Certainly that's not everyone, but it is a very substantial fraction and it does represent a great deal of medical cost, human suffering, and higher than normal mortality.
The advice for everyone with HCV is to be under the active care of a hepatologist and to monitor the progress of the illness. One cannot afford to be overly confident. I hope you check in regularly with a hepatologist.
Marc is right-we now know that a significant majority of patients will develop cirrhosis by age 65.
The risk of sexual transmission is indeed trivial,however the disease is nothing like as benign as you paint it.
Symptoms such as severe fatigue normally manifest themselves after about twenty years.
With respect,you need to adjust your expectations,which seem to be that you'll cruise to a happy healthy old age and prepare to undergo anti-viral therapy.
If you choose not to treat your HCV, that’s your business and I respect it. Don’t be deceived by the numbers claimed in studies. I agree with Marc1955’s post. I do suggest you have a Liver Biopsy before making your decision. Some people progress faster than others.
Knowing that the SOC is fairly new, I can’t help but wonder what the future holds for our health due to long-term tx related health issues. Only time will tell. I am not agreeing with aspren’s approach but it seam’s to me, It’s all a gamble.
If there's any actual evidence that contradicts the statistic that 80% of those infected and left untreated will die of something other than cirrhosis or HCC, I'd be interested in reading it.
I don't bookmark this stuff,but I have read several reports which conclude that the old stats.are out of date and,as Marc says,the ageing Hep C population is predominately cirrhotic around age 65.
The statistic you quote is an oldie from around year 2000.
Another factor which has skewed the figures is the emerging belief that a modified immune response over a long infection itself causes disease progression.This is also mentioned by Marc who has obviously read the same stuff as me,so hopefully he can provide a link.
I agree about the sexual transmission being overstated...I've had a baby, had unprotected sex for over 20 years with my spouse...so that is true...it's not impossible, but not as much a worry as HepB or so many other STD's that can go untreated and undetected (especially in women) and can lead to some tragic complications....
I've had the HepC for over 20years...the stats are outdated...but someone is forgetting to tell the doctors that. I tried time after time to find a doc who actually wanted to see me on a semi regular basis...who believed that fatigue was a symptom...who thought treatment was worth a try (and yes, I did the Intron/Riba combo for 48 weeks and attempted two times the Peg combo...but doctors still treat it like it's not really going to develop into anything.
The treatment caused many issues...that itself may be moving it along. The docs need the info BEAT INTO THEIR STUBBORN LITTLE HEADS!! One shouldn't have to beg for treatment or a biopsy. It's very frustrating!!
It also ***** find any doc, but especially a specialist, who will accept a Medicare patient!! How convenient that their allotted amount of Medicare patients has always been met...this should also not be allowed.
I have sympathy for some docs...the good ones...they are getting screwed with the insurance companies these days...it all goes up the line to our government...don't get me started!!
Then again...I could get hit by a bus tomorrow...and the statistic won't mean a damn thing... Thinking about this can drive one CRAZY!!!! And that's another story for another time.....
Vertex has also alleged such stuff. At issue is continuing to conform to old assessments of the virus. They were also made at a time when the treatment success rates were.....not so good. I don't know how much was science and what percentage was panacea.
Vertex has referred to a study which seems to suggest that cirrhosis is virtually unavoidable if one lives long enough with the virus. I have several answers to that;
1) yes; that would be the study of choice IF one was selling a drug TX
2) It may be that a "call to arms" against a virus that will kill you in 40 years may leave an opportunity to wait. Some of us don't have to fight against this menace with rocks; we could wait 3 years and fight it with guns or wait 10 years and perhaps fight it in a one week bout of TX with improved treatment. (nukes. ; )
3) The old stats were also based on a population that for the most part wasn't even aware that they had a virus that could kill them. They couldn't or didn't mitigate any number of lifestyle choices that could have saved their lives. They say 2/3'ds of us have yet to be diagnosed.
I guess I wonder about the science of telling people how "long they have to live".
Intuition tells you that this will be an imprecise science. Consider 3 groups; lets say people who drink and drug and who progressed quickly and died of ASLD. Would they be an accurate group to for estimation of peoples odds.....or even the larger group (not substance abusers but ) that died in a shorter period of time?
Then there is a group......the entire spectrum of HCV infected from the most sick or the ones with the best prognosis. They would be the group where one would be able to demonstrate the range of what one could expect of the virus. When one averages the numbers.... (keep in mind; they still estimate 2/3rds of us are undiagnosed) and looks at the worst result and the best result and puts them into an actuarial table and then distills that table to a few sentences..... will that be "the truth?"
There is perhaps a final group. What would happen if one took people who knew full well that they had the virus and armed with some information was able to make some lifestyle changes. Maybe they stopped smoking tobacco or pot, didn't drink, didn't over eat or made wiser food choices based on their HCV positive status. What if they exercised..... and monitored their health. What would be the prognosis of this group? WE DON"T KNOW. Lol; is there anyone in that group? ; ) I think that people in boards may be more likely to populate that group.
My point is that one has to be careful asserting the outcome. I think that in many ways this virus is worse that they first thought.....and in a way it could also be more benign than many people think. We are currently left with incomplete data to chart our courses. Knock on wood; much of this discussion will become moot with the advent of better forms of treatment. We won't need to see what happens to our group in 30 more years. Most of us will treat in the next 3-5-7 years is my guess.
I hope that you are being actively monitored and biopsied on a fairly regular bi-yearly basis if you are past stage 2.
The fact of life is that liver damage does not progress linearly. Meaning it could take 20 years to get to stage 2 but after that you could become cirrhotic in only a few years. Unfortunately once you are - you are and there is no changing that. Aside from that, HepC also leads to other chronic illnesses and problems.
Many of us feel that giving this disease opportunity to get to the point where we would need to be transplanted is something that is just not necessary as there are meds that can lead to a cure.
Personally, getting it over with and not taking the chance on being even one of the 20% (which I believe is quite low) to me made more sense than waiting around to fall in to that category.
It's like having a slow growing skin cancer.........why wait until it's too late and metastisized rather than chop it out right now?
One recent study of HCV mortality rates is:
"Changing trends in hepatitis C-related mortality in the United States, 1995-2004
Matthew Wise, Stephanie Bialek 3, Lyn Finelli 3, Beth P. Bell 3, Frank Sorvillo 1 2p published in the April 2008 issue of Hepatology,
Among its rather alarming findings is that the average age of mortality among men with HCV is 55.
Here's a bit of the conclusion:
This analysis of recent death certificate data demonstrates the substantial and generally rising burden of hepatitis C-related mortality, and highlights the contribution of hepatitis C-related disease to premature mortality. According to the analysis of YPLL, hepatitis C-related disease was the 16th leading cause of premature death in the United States in 2004, and the fourth leading infectious cause of premature mortality behind HIV/AIDS, influenza and pneumonia, and septicemia.
Understanding trends in hepatitis C-related mortality is complicated by changes in hepatitis C diagnostic practices, particularly during the first half of the study period. Observed increases in mortality during this time likely reflect both true increases in mortality and the impact of the growing use of serologic tests for HCV. As such, true increases in hepatitis C-related mortality during 1995-1999 were likely more gradual than the observed trends, and differences in mortality patterns between the time periods are difficult to interpret.
Mortality rates generally increased over the 10-year study period, with a small decline in overall mortality rates observed in the final 2 years of the study. The decline in mortality during these final years appears to be driven by decreases in mortality among persons age 65 and over as well as persons age 35-44. Decreasing rates among persons 35-44 years of age may be due to the fact that the birth cohorts with the highest prevalence of infection moved beyond this age range during the study, whereas the reasons for decreases in persons age 65 are not clear. Rates among persons age 45-54 leveled in the last 2 years of the study, whereas rates among persons age 55-64 continued a strong upward trend. Decedents age 55-64 comprised a growing proportion of persons in the high prevalence birth cohort, 1945-1964, through the study period, explaining the continued rise in mortality rates in this group.
Due to the predicted rise in the prevalence of persons with long-term chronic HCV infection through 2015, models have forecast overall hepatitis C-related mortality to continue to increase over the next decade. Beyond the cohort effects described above, the reasons for the small decline observed in overall mortality rates, if sustained, are not clear. Improvements in survival because of advances in treatment and liver transplantation could delay or prevent some of the anticipated hepatitis C-related mortality. Alternatively, the variable course of chronic HCV infection, reflected imprecisely in mathematical models of hepatitis C natural history, might result in mortality curves that diverge from predicted trends. It will be necessary to continue to monitor hepatitis C-related mortality over time to determine whether the small recent decline represents the beginning of a trend or a temporary fluctuation.
Lets say that for the sake of argument..... that Telaprevir were to become FDA approved in EXACTLY 2 YEARS. Lets say that the TX will be a 24 week period and a 80% SVR rate; double the efficacy and in half the time.
SOC takes 48 weeks and a percentage of those who treat fall into slower response curves and therefore need to TX for longer periods of time. Therefore at some point in the future.....maybe in 18 months but maybe sooner someone who waits to treat with triple therapy will finish TX sooner than someone who is "proactive" and decides to treat sooner. The proactive person will also have about half the chances for SVR than the person who waits.
What will happen when that day comes?
Some doctors will tell patients to wait.
Some will continue to treat patients.
Logic would almost tell you that almost no one should TX in that window period.
I don't think that we will see that however.
I'd actually like to see Telaprevir allowed for some past TX failure groups so that they can be treated early since they NEED it. It could also keep the *machinery* lubricated while there could be a lull in the assembly line. Doctors have house payments too, after all.
I hate to go against the doomsayers on hep c.
The "doomsayers" are wrong but so are the rosy colored glass crowd.
HCV is what it is. In some cases you get a free ride. In others your end up needing a transplant or worst.
Have you had a liver biopsy to determine how much liver damage you have? That's the only reality check, the rest has little meaning. You can feel physically great and be knocking at the door of cirrhosis and you can feel not so hot and have little or no liver damage.
If your biopsy shows little or no damage, then your scenario may indeed be rosy, at least for now. If it shows significant damage, then it really doesn't make much difference how good you feel because you're heading toward a place where one day you will not feel good at all.
BTW, studies vary, but most with HCV end up with cirrhosis by around age 65 no matter when or how long we have been affected. Of course that doesn't mean some might not end up their earlier. Again, get a biopsy if you haven't and repeat every 3-5 years.
I hate to go against the doomsayers on hep c.
Hmmmm. Doomsayers? You might feel differently if you've been the one living with cirrhosis as long as I have. 20% of 5 million people makes for a lot of suffering.
Jim, I've glanced through this thread as well a a few others and I have seen a lot of mention of the fact that cirrhosis will be a problem for a lot more people as HCV patients age. Do you know of any specific links where I can see this? I have seen it before but not on sites that I have a lot of confidence in. The only thing I have seen that comes out on the other side of this is Dr. Seef's study on the WWII veterans where most died of other things and the few that are still alive do not have cirrhosis 50 years later.
If you mean the study that suggests that many will progress to cirrhosis around age 60-65 regardless of when infected, I believe I saw it at www.hivandhepatitis ******* and it has been posted here, however I could not find it again after albeit a very quick search. Maybe someone else will have better luck and I will try again later.
I have heard Vertex refer to several of the same type studies and I have not been able to find get a link. I wonder if it might be worth writing/ contacting them and asking exactly which study then looking at the particulars. Sometimes when we do look at studies the design can undermine our confidence, or who funded it....or the size..... or how they selected those in the study.
One that I heard them refer to was a meta-analysis of many studies and combined them all to arrive at a conclusion. The comparison was between the 20 year and 30 year outcomes. There was a dramatic shift in 10 years for the worse. When I search for stats on the subject I am often struck by the conflicting information (as well as what looks to be old outdated info and not much new).
I too would love to see the data updated quicker and see it in a prominent place. This seems to be an area of uncertainty and even conflict.
Statistics and studies can be used to support both gloomy or optimistic views. I've been surprised to see radically different "spin" placed on articles on the same study by different authors.
That's ok Jim. Thanks anyway. I see one of my posts printed a number of times. That is odd. I'm having trouble with this site today so I think I will go take a nap!!
I just saw your post. We must have cross posted. I agree about the confusion. I'm not sure what to believe. NIH and the CDC have both directed us to say that only 15-20% will go on to develop cirrhosis over a lifetime....but I just don't know what the truth is.
"Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis. A specific active monitoring and therapeutic approach should be adopted in older patients to prevent progression to cirrhosis and its complications."
(Free Medscape Registration Required)
There are several studies I've seen besides the veterans, I believe England and China also did studies!! And I've read stuff about the life span with cirrhosis!!!!!!!!! I treated three times,,,, but if someone can come to terms with having Hep C and not going thru the treatment, or going thru the treatment and not being successful, then more power to them cause TX S-u-c-k-s!!!!!!!!!!!!!!!!!!!!!!!!!! But getting that SVR was worth it for me!!!!!!!!!!!!!!!!!!! The last round I did max dosing cause I could not stand to live with it and couldn't say quit, but I'm still feeling the effects!!!!!! So I can understand "arpren" which could even be a fake post!!!!!!!!!!!!! So I don't even know why I'm posting!!!!!!!!!!!!!!!!!!
Jim, thanks again. I just read the Medscape article and found it to be quite scary. In fact it kind of puts a whole new spin on whether or not to treat. Sixty-five is sounding younger to me every year. Many people have a couple of decades of life after that and to think it can be compromised by cirrhosis is not a happy thought.
Here's an earlier study that suggests low rate of cirrhosis in the subset of women infected at an early age but data is only followed for 20 years which may account for some of the earlier claims that cirrhosis occurs with less frequency than the study just posted. http://www.medscape.com/viewarticle/460551_1
But in any event, these studies are aggregate figures and individual experiences will vary. What I carried away in terms of Watch and Wait is that one has to be much more vigilant with such an approach as one approaches age 65. That might mean more frequent biopsies or fibroscans when you get older.
your one remark has some basis in fact in that heterosexual transmission is rare, not so for other the other type of sex where tears and fissures expose blood products to a greater extent. Where sodomy is practiced HCV transmits as easily as does HIV.
However I have to tell you your remarks in general are very subjective. I have 2 kids also...and lived many years not knowing from whence my dwindling energy supply was originating.
I managed to run a business, raise my kids and have hobbies on the side also.
Then the disease advanced from its stage 1, stage 2...which can go on for 20 years..
into stage 3 and 4.
At this point///let me be subjective both your spleen and your liver can become enlarged and painful. You may have continual pain and fevers....exaustion and depression becomes the daily norm.
The virus will have destroyed enough liver tissue to make it's function greatly diminished, and the the levels of ammonia in the brain will rise and you will feel like you have alzheimer's at an unexpectedly early age.
Many systems in your body will begin to break down. Your sleep will be greatly diminished, your tongue will swell making it hard to breathe at night....you may begin to see veins in your esophagus and elsewhere swell or even burst.....it goes on and on.
Does my subjective view sound like just a friendly little bug to you??
So again, your analysis is based on only subjective knowledge from your own life experience, and not on any comprehensive medical information.
Certainly there are differences between HCV and HIV, but there are also hundreds of similarities. Cheif amoung them is that they both are retro virus, both mutate regularly and are highly adaptive, both attack and damage the body systems, eventually overwhelming the immune systems ability to keep up.
Both are treated with some similar families of drugs, both are studied together quite often due to their similarities and due to the large populace of co-infected patients.
Both are the recipients of the benefits that AIDS research has brought to the table regarding how retrovirus' attack and replicate.
Currently HIV's progression to Aides can be held off by 20 plus years by the new medications developed, BUT HCV has become the first virus to benefit from drugs able to eradicate it from the body....and hence the first virus to ever have an actual "cure" available.
Be aware that while stage 1-2 can last for many years, stage 3-4 can advance much more quickly...the disease is not a linear progression..once a certain damage level has occured the downward chart is quite a drop off...and people can go from stage 3 to end stage in very short order sometimes...
sorry to say all this to you, but this is a life threatening disease and I'm uncomfortable letting rose colors glasses type statements stand uncontested in here.
I know you are singing a happy song now...but trust me, in time, you will be longing and searching earnestly for those cures because liver failure is one of the most brutal forms of death to endure. We know, and many in this forum have witnessed this process in their own selves or loved ones.
We lost a beautiful young man in his 20's to this disease in this forum this year....
his name was Nick,
he got the disease from treating with blood products for his hemophelia
and he did not have time to raise a family or call this a benign disease.
Go read what is available on liver disease...just google "end stage liver disease"...
then come back and we will all be glad to help you decide when you plan on treating your virus, so you can stay around for those children and grandchildren.
Until then, my best to you.
you can keep fooling yourself thinking you have / will beat this resilant disease but trust me it has a way of sneaking up on you and biting you in the @ss. Do yourself a favor and be monitored every six months or at least yearly by a hepatologist. Good luck
Could I be lucky on my second go around and reach SVR? What about my third attempt if the second time doesn't work? Try for four? I don't like the disease in my body any more than the next hepper but why kill yourself (metaphorically speaking) if you don't have to. Not now anyway. The old adage about fighting another day is certainly true for some of us who can afford to wait for better and more promising treatment. The key, as copyman said it, is close monitoring. There is no doubt that Hepatitis is a killer and to fool yourself in thinking otherwise is like spinning the chamber on a pistol. My hats off to folks like spcecst2 who endured multiple treatments but if I can afford to wait by closely monitoring my condition and treating if and when my condition worsens, I'm that much closer to a better percentage of SVR than I was three years ago. That is, hopefully with new drugs somewhere on the horizen and before I reach 65. And, by the way, it was neither experimenting with drugs nor a blood transfusion that caused my Hepatitis C.