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Surprising Data on What Typically Ends the Fight Against Hep C

Nicole Cutler L.Ac. August 9, 2011

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Despite a less than uplifting prognosis for those with chronic Hepatitis C, it is not a death sentence.

Receiving a diagnosis of chronic Hepatitis C can easily feel like a death sentence. That’s understandable considering that this infectious disease is hard to cure, is capable of progressively damaging the liver and can lead to a handful of fatal conditions. However, a new study demonstrates that Hepatitis C is far from a fatal illness, as it is surprisingly less lethal than most people realize.

An estimated four to five million Americans are currently living with Hepatitis C. With so many people affected, there is a growing demand to learn as much as we can about this virus and dispel the myths surrounding it.

About Hepatitis C

Hepatitis C is a contagious virus that infects the liver, possibly leading to permanent liver damage, cirrhosis, liver cancer and liver failure. This virus is notoriously challenging for two main reasons:

  1. It’s hard to detect – Because its symptoms are either non-existent or vague and easily mistaken for something else, Hepatitis C is easy to miss. Many infected individuals first learn that they have Hepatitis C after years or even decades of living with it. Unfortunately, a large percentage of newly diagnosed individuals already have advanced liver disease upon learning they have Hepatitis C.
  2. It’s hard to treat – Hepatitis C is a particularly tenacious virus, hence the vast resources the pharmaceutical industry has plunged into improving their weapons against it. For decades, the standard treatment for Hepatitis was interferon and ribavirin – a drug combo that effectively eliminated the virus in about 50 percent of patients. New medications recently approved are expected to increase those odds; however, Hepatitis C is still extremely adept at evading treatment.

The Study on Hepatitis C and Cause of Death

A retrospective study described in the May 11, 2011, Journal of Hepatology, analyzed specific causes of death among people with chronic Hepatitis B and Hepatitis C. The study authors looked at medical records of people with chronic Hepatitis B or Hepatitis C in New South Wales, Australia, over a 14-year span – between 1992 and 2006.

Upon looking at the medical records of over 128,000 people, Scott Walter and colleagues found that Hepatitis C is not as deadly as previously thought. To start with, the researchers found that cancer rates were significantly higher among those with Hepatitis B than those with Hepatitis C. More specifically, having Hepatitis B was found to be significantly more likely to lead to primary liver cancer than Hepatitis C. Most people assume that dying with Hepatitis C is a result of harm the virus has caused the liver. But the Australian researchers found otherwise. In fact, 72 percent of the deaths in subjects with Hepatitis C were from a drug overdose or suicide – not advanced liver disease.

The predominant fear most people have when managing chronic Hepatitis C is that their infection will cause irreparable and life-threatening damage to the liver. Thankfully, this newly released retrospective study demonstrates that the risk of dying from a Hepatitis C complication is relatively low.

During their battle against Hepatitis C, just over a quarter of those who lose their life die from advanced liver disease. Such data should help us direct our attention to the most common reasons those with Hepatitis C die; a drug overdose and suicide. Perhaps funneling resources into drug addiction treatment programs and suicide prevention for those with this disease could make an equally important contribution to the fight against Hepatitis C than the pharmaceutical company’s race to defeat this troublesome virus. In addition, this information demonstrates that most people who die with Hepatitis C do not die from Hepatitis C – meaning that being diagnosed with this virus is not a death sentence.

References:

http://www.hivandhepatitis.com/hep_c/news/2011/0617_2011_a.html, Causes of Death Among People with Hepatitis B and C, James Learned, Retrieved June 22, 2011, hivandhepatitis.com, 2011.

http://www.jhep-elsevier.com/article/S0168-8278%2810%2900945-1/abstract, Trends in mortality after diagnosis of hepatitis B or C infection: 1992-2006, Scott R. Walker, et al, Retrieved June 22, 2011, Journal of Hepatology, May 2011.

http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-topic-overview, Hepatitis Health, Center, Retrieved June 26, 2011, WebMD, LLC, 2011.

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  • Mrigsby44

    it felt like a death sentence at first,and mine is far aadvanced,but i have the medicine ,i’m just not taking it…it has all kinds of side affects…i have very long hair and play in a rock band and don’t want to lose my hair,but i do want to live….that’s worse than the sickness that comes with it…i don’t suffer much from the disease,justa a lack of energy …my viral load is 2 million,what should i do…i know taking the meds are right ,but i’m borerline diabetic now ,i don’t want to go full blown….help!!!

    • Louise Fazio

      You should take the medicine before the hep c gets worst and it will mine has, don’t worry about the hair that will grow back, but if you need a liver and it blows livers are not that easy to get, so don’t be vain and foolish you have a chance to make it better take that chance and I am a diabetic the medicine has nothing to do with that just watch what u eat.

      • Topgunwon

        I was diagnosed 8yrs ago w/ hvc, I went right into treatment wtih interferon and ribavarin, the old way. First time around it took me out. I went from being gainfully employed to a man who has not worked since. Second treatment got rid of the virus but the drugs melted my organs. Three heart attacks, kidneys are now close to “end stage failure” my marriage is forever changed, Four of my friends started with me, all of them are dead but the one that got a liver transplant. All I can say is, that if you are reasonably healthy, and not sick, wait till you dont have a choice till you treat it. All the drug companies promise the new versions of Interferon are easier to tolerate, because they get paid to sell Interferon. It is chemotherapy. Period. I take twenty four pills in the morning, twelve at night, and two types of Insulin shots. I have stayed mentally healthy only because I already go to AA. Or I would have committed suicide. That is the other thing, such a high rate of people who treat HCV commit suicide. It is because of the fatigue. Just read everything you can get your hands on and understand family, work people, nobody is going to be patting you on the back when it all falls apart saying its OK. They will be saying, just get up and go to work, do something exercise, you will feel better. I cant. I would live in a cardboard box if I had to but I have to lay down or I would fall down.

        • Babstrice

          I was diagnosed 41 years ago. I thought the fatigue was from something else. I have 0 energy. My husband & children keep saying “get up & walk a mile. I can’t make them understand that this is different.

          • http://www.facebook.com/profile.php?id=551658388 Terri L Johnson

            HI…I went through the same thing, when I found out after 2 years of searching Dr’s to tell me why I felt so different, so ill. so tired…My husband tried to get me to push through it etc…Felt worse pushing myself to do things I thought i was going to just collapse…Well I was lucky to find a doctor who said one must listen to the body when it comes to liver disease.Pushing yourself over excerts your liver , but doc says to rest when body is telling u to rest.Then afterr you have rested you will not be making yor liver work harder…Which is the last thing one needs to heal.Only rest heals livers.A good as natural as possible diet…
            Well, since then my husband had found out he had it too, when he tried to go to his normal job and have a side business too…He apologized over and over again before he died for judging me.For not understanding, ntil he found himself in the same shoes. My husband and I got closer then ever as we suffered together with deep understanding of the others pain and misery…But my hubby had to go on transplant list…we had a live donor waiting to reach a certain meld score and he just didn’t make it…The University of PA uses live donors, in case anyone ever is in this position, Wish you all the best.

        • Dee

          I am so sorry for what you have endured. I understand, it is very isolating to go through the tx. I did it and people do not understand how it changed me. My best to you

    • Alimason3

      you should not lose your hair from interferon shots….

      • Alismason3

        the last thing you should be worrying about is your freakin hair..get a wig

        • Tabby

          You know! You are not a very compasionate person or sympathetic!  If this person is concerned with her hair or his hair, that’s their problem!! Everyone, reacts different to the drugs.  All I can say is, keep fighting this fkn virus and learn not to judge.

        • http://www.facebook.com/profile.php?id=551658388 Terri L Johnson

          I am sorry to tell you but that is his living! Also, I love hair and when I talk ( over 30 years now) of people getting this treatment…each treatment that came out( I belong to groups for hep C etc)…I found after 6 months’ on the average’ the virus came back threefold! meaning the viral load was sky high compared to when they started treatment.I have been through the transplant ‘waiting’ with hubby who passed on.didn’t make it…He refused treatment for we met so many who were thrilled being virus free, only to have it come back even worse!loosing their .hair, their family,,, relationships, their jobs, cars houses motor cycles and what little quality they had to their life gets taken forever to be virus free for 6 months??!!My doctor here has spoken to the transplant unit a number of times concerning the treatment of my husband…He watches me like a hawk for any major changes, and says to leave well enough alone, when we discussed treatment for me.Says the Milk thistle and thy-mic formula, at lease brought my Enzymes to normal, so why open a can of worms?just to say I am viirus free when they have yet to see it last!Yes I feel like I have a horrible flu daily! But I sure don’t want to feel worse by ruining my immune system with the drug treatments.Imagine had hard it is to kill the type of virus hep C is for it mutates..Therefore, you know it has to be destroying something else inside u…Best bet is to watch the money making schemes of these drug companies…IT”S like the car dealer who rigs up the car enough to look great and run a week and then your transmission blows!!Our economy runs off of drugs and diseases…Our government hides cures from us, in order to keep the ball rolling,Lots of politics involved… more then we think! !

      • boohoo

        rely, who told you that, are you a doctor? many people lose their hair on interferon…..pppfffttt

    • kasey

      I’m 57, took interferon and ribivarin only 26 weeks, and has been in remission since March, 2003!! Stopped all alcohol in 2002, eat well and exercise. If ya wanna live ya gotta take the meds. You’ll
      feel sickly, but if you eat well, exercise, no alcohol, proper rest,itwill get better. Got mine from IV use, but had it in the 70’s
      also. So, there is hope, & KEEP THE FAITH!! Hair will always grow back. I did stage lighting for rock n roll band, and I’ve lost all hair 3 times during my lifetime kennykarma at hotmail, PEACE
      my viral load was 9.6 million. yikes……

  • caringforhim

    after my living with a spouse with Hep C for 15+ years The suicide rate and OD rate makes sense to me. The depression that can ensue and the fatigue and constant treatment and post treatment issues etc, its no suprise to me. Anti depression steps must be taken with each patient.

       re: “72 percent of the deaths in subjects with Hepatitis C were from a drug overdose or suicide – not advanced liver disease.”

  • Rdeanstylist78

    I just found out that today I have Hap C Im looking for answers. .

    • okie49

      Sorry, don’t have any answers yet. See my first gastro…. Tuesday. Diagnosed threeweeks ago. Had no idea. Just wantred to say your not alone. And I’m scared. Will keep you in my thoughts. 

    • Jimmystrange1

      not a death sentence,am 48-think i got it from transfusion-2 bad i chose 2 b alcoholic as well-if u drink-dont-i got the vrs.@6yrs.old.i would look into milk thistle-great herb.find what genotype u got-mine-
      subtype2b-responded to interferon-started drinkin agn.&it came back.
      get g.i dr,keep tabs on ammonia levels-get mri’s-ur not alone

    • Cordie

       there are many great hep c support groups on facebook.Try dragonslayers. Hep C peer support group . transplant buddiesI am in so many,alot of the same people just different forums, I have esld thats stage 4 there is no stage five., My name is Cordie. start in one group it will lead you to others. lots of current info and support on all levels.

  • carol rooney

    i tried 48 week double therapy. it was pure hell! here it is 6 months later and it’s back. i am devastated. dr wants to repeat therapy and add Incevik. i am 62 years old. she said i have 5 years to decide????? Would like to hear from anyone who has been through the same thing.

    • Nuttss

      Wow Carol, do you know what stage you are in? Most people With hep c never get out of stage 1 or stage 2.

      • EAF

        What do you mean they never get out of stage 1 or stage 2 – they don’t progress to stage 3 or 4?

        • Babstrice

          ya’ll are scareing me. I have told every doctor I’ve seen that I have Hep C & not onr told me I may be cured. So I’m just learning about treatments. My 1st appt with a Hep C doctor isn’t until Oct. 30, 2012.

    • Knuty5150

      if it didnt work the first time at your age the meds are worse than the hep c especially if your not sick from hep c

    • Alimason3

      I had the same experience. first 6 mo  txt failed, second 6 month  txt faliled …I am also 62 years old. My dr wnts me to try the incivik (sp)  new txt. ????  the interferon about killed me the first 2 times and I am scared to try again as I heard it was worse.  

    • Shari Horne

      Same for me.  I am 60 but I never heard about 5 years to decide.  I am having symptoms of night sweats, awful.  I don’t know whether to treat again either.

    • richard

      Hi.. I remained HCV free for 12 years, only to find recently that it is back. I was on interferon/ ribavirin for a full year.. The side effects and the after effects are/ were awful, but I want to try to go on peg inf and ribavirin again as soon as possible.. I have very painful cysts under my skin from the previous treatment. . It was hell, but I am prepared to go through it again if I can, and even with the side effects, another 12 year remission would seem like a good deal.

      • richard

        I would add Carol, that the new oral interferon- free treatments will be here in less than 5 years time. If you can wait for 3 years (more or less) until phase 3 of the oral anti-hcv medications come online, things may be much different.

        richard
        bulgaria

    • http://www.facebook.com/profile.php?id=551658388 Terri L Johnson

      Most people I have spoken with about treament, were so happy right after as they showed virus was gone.After 6 months of being free everyone I spoke with got the virus back and with a viral load to carry higher then before treatment..I have yet to hear of anyone staying virus free…Is there anyone out there who has stayed free ?

  • Knuty5150

    i dont know about anyone else but ive had hep c for 35yrs lots of pain cant eat get mental when my liver acts up suicide seems like a good idea being on morphine zanax an soma its got so bad the last 3 years depression gets bad 4-5 days a week i feal like my liver is poisoning my whole body mental no energy cant eat iamin such pain at times its not worth living i was a pro weight lifter an fighter now a good body shot would kill me some days i fealok but most days its torture the doctors i go to say iam constipated at first it was leukemia then liver cancer they dont know what there talking about an i have mental disease so i cant tolerate the meds physicaly or mentally  People new to hep c need to know that it effects each person differently an some people cant recover me being one i never thought ide get sick but i did now i recomend treatment its not as bad as dieing especially if your under 45-50 the older you get the less chance you have to recover an which type you have ive studied this for years get a good internal medicine doctor dont listen to a M.D. you loose your body then your mind it attacts any part of your body kidneys galbladder heart lungs brain eye sight an intestines colon itchy skini have hep. enciphlopafe i cant spell anymore but once again seek treatment i didnt an now iam paying for it an its miserable good luck

  • Dasflueff

    I have esld.and the chances of taking my own life before I let the disease ravage my mind and body ,not to mention my family, are high . not because we are careless drug addicts. And it is a pretty damn awful way to die each day brings a new health scare . not to mention how the sob affects your brain. hcv causes suicides not the drugs oh and then there is the cost of trx. and the expense of extended hosp. care before you die,,,, .hep c might not kill you, but the complications will…..

  • Geof

    After 16 yrs on grieseofulvin for tinea (w/o blood testing), I was diagnosed in 1991 w/HCV in Florida.  I was told that I could have contracted HCV in the US NAVY (1970-74), as sharing or using the same needle on more than one sailor was NOT uncommon before we set sail w/vaccinations or ‘air-guns’ for shots.  I had a biopsy at the Tampa VA Hosp. in 95′ to verify.  My symptoms have progressed to some days of 90% muscle weakness, to complete blank on ‘the day before events’, to mass confusion as to what I’am doing.  I was recently told by a VA Doc that – “looks as though your HEPC has gone away???  Really??  Is there ANY way to find a connection with the living conditions on the ship that I served on during the Viet Nam war – or the drinking water? – or …?  We were off the coast of Viet Nam, where the drinking water was desalinated, but NOT dechemicalized (all the junk sprayed on shore flushed downstream, into the ocean, — where we sucked it out of the ocean, and then drank it).  This has been one gigantic question and huge unknown for decades regarding the US military, and is STILL a question. 

    • Babstrice

      I find it interesting you mentioning the air shots in the Navy. I was on the Air Force and received those air shots. I wonder if that’s how I contracted Hep C??

  • http://www.staroflite.blogspot.com Diana Douglass-Balgaard

    I have rh negative blood. can someone tell me if there are any differences in Hepatitis c progression?

  • rndld

    I was diagnosed about 5 years ago. I had no Idea. i took the interferon and ‘ribabarin for 6 months i beleive. Had very little side effects. lost very little hair. worked right through the treatment. i am now considered cured. Take the drugs , they are even better now. fear will kill you , not the drugs.

  • John Hodgkin

    I never like to step on someones dream or happiness. But I have to correct mdld. There is absolutely NO CURE for Hepatitis-C! I don’t care what you’re Hepatologist is saying to you or not. There are people who have had hepatitis-C for decades and have no quantitative or measurable virus in their blood draws.
    I am in Medicine. I have seen many people do the Tx and are clear for 6 to 12 months and it is measurable again. They do not have a continued SVR.. If you would Google up Dr. Gish and read some of his studies on Hepatits-C you will find he believes it to be more of a systemic virus that is only recently been found strictly in the liver. Researchers (virologists) are now finding the virus in other pathogens such as the lymph systems and brian tissues etc.
    There is much more to the virus then just liver and viral load. I have seen people with 50 million virius in their PCR tests and no liver fibrosis or damage of any kind. And yet people with less than 250 thousand virimea and stage 2 of cirrhosis.
    What does this mean? Basically that Heapatitis-C with it’s many quasi- species and Genotypes has a very unpredictable outcome for each individual. Fear has absolutely nothing to do with anything except fear itself. Fear does not kill you, but not researching and taking steps to change your lifestyle does.
    Just saying “take the drugs” doesn’t mean you’re story is going to be someone else’s. I have seen the old and new Tx’s have terrible side eefects and even exacerbate the Heapatitis-C virus in the liver and cause more damage. Plus people are told they are falsley CURED, means wow I can drink alcohol again even my Doc said I could.
    Right now they cannot measure your virus down to 0 particles in your blood. I believe, and I spoke with our lab the other day, they are down to 50 particles per millimeter of blood now. So if you are below 50 you are considered CURED. If it is sustained for over a year.
    You are still infected with the Hepatitis-C virus. Even if it is undetectable, does not mean you do not have the virus anymore. This is just Bad Medicine they are handing to patients. Even if you have 5 virus paricles in your blood you can still infect someone else and they can start replicating again over a few years or less.
    Remember virus amounts and liver damage do not correlate together. There is still a multitude for Virologists to learn about this virus. If they can get a PCR that could detect down to 0 viremia in your bloodstream, and measure that over 5 to 10 years and if it were to stay at 0, then I would stick my neck out and say they had a CURE for Heapatitis-C.
    Oh and by the way I have Hepatis-C and I have never done the Tx and I have no fear about not doing it. I never try to talk patients out of doing the Tx. But not out of FEAR!
    Fear based Medicine is like I said; Bad Medicine. Run from it, for a bad misunderstanding Doc or uneducated Doc can have good intentions, but ruin your mental and physical health by practicing FEAR based Medicine.
    Here’s one basic important thing to remember if you have been diagnosed with Hepatitis-C, DON”T DRINK ALCOHOL!!! NONE!!
    I will leave you with a quote. Oliver Wendle Holmes said; The secret to longevity is to have a chronic illness and treat it accordingly. And he meant by accordingly, to research and use diet, excercise, and body, mind and spirit, not just pharmacueticals.
    Stay healthy mdld. And try posting something a bit more uplifting other then your own beliefs, which are truly valid unto yourself. But not for others, and of course one of the worst issues or emotions to base your groundings in you’re own outcome is FEAR!!

    • PRP

      Hi John H.
      I tend to agree, I am a Res. Ph.D. monitoring this for I have Hc and it is clear we are playing R. roulette. Most can’t see many are overdosing to accomplish suicide, the Australian study is silly. Yet I am waiting for the previrs to become available without the & making chemo forcing us.
      I also saw a meta-analysis of over a 100 studies showing moderate alcohol/wine is not an issue so it is about maintaining quality of life? yet fog, fatigue are n issue at 62, diagnosed here at 52 but I function, play tennis, walk. What are of medicine are you in? I read here the trial with Previr was stopped, $$ talks. There has to be a way to circumvent the legal Narc pushers.
      I loved the post from one who got his/her energy back.
      MilkTh. helps but is no cure, take t regularly just in case, energy issue gets stimulants as needed, life goes on. Living or dying? Do one as long as you can.
      Just lost my wife, I think it was more the chemo than the cancer.
      Someday this will look like the stone age of medicine, like when they did lobotomies, ShockRx etc. Stay in touch.
      Any Medical experts out there with Hepc?
      PRP

    • stuart H

      John you ask the original poster not to post anything unless its uplifting and not of there own beliefs, I think you need to step back and look at what you just posted, was not very uplifting and was based on your own belief system so stop being a hypocrit. I hope your attitude changes soon because your just stomping on every sufferers hopes of a better life. Shame on you

  • Trying Again

    Peace everyone.I cannot believe how much misinformation I see out there.When my country Dr. told me I showed positive for hep c(I had been told I had hep B when I was about 18, but did nothing about it. They said it did it’s damage, now I had antigens so I was a carrier.)
    The country Dr. was like,”you can live 40 yrs. with no symptoms. But I stayed on him, Told him Something was bad wrong, I know my body. After 2 yrs, he sent me for a biopsy. Stage 3 Cirrhosis, Stage 4 could not be ruled out. Went on PEGInterferon w/Ribavarin(& started me on Prozac, said it might depress me). Took it about 9 mos.thought I would die. They never really could get blood to see if it was helping. Seemed as if they didn’t care.
    Went on that way 10 yrs. Got a good PCP, gave him my history,he seemed quite surprised, said other than HepC/B Cirrhosis, My blood looked like the blood of a 5 yr. old child in America. Alt was 50, AST was 57,slightly ot of range.( those 10 yrs I took no treatment, other than 2 times I was hospitalized for MRSA treatment. 1st time was 10 days for knee, 2nd time was for MRSA pneumonia, 4 days in icu, 12 days in a clean room, almost killed me. Back in ’97 I had fell 60 ft.& was life-forced to tauma center. Took half my colon, 4 feet, of small intestine, & had brain-injury).
    Well, I got a little off track there, but my PCP referred me to a liver & gastroenterology DR.Things are a little different now. I got a checklist I had to complete, Eye exams,psychiatric release,hepb/a vaccines, among other stuff. My family said” you seem to be ok for having Stage 4 Cirrhosis for 10 yrs.Stay away from medicine, it almost killed you last time & you know Pharmakia was Greek for sorcery. This is how Satan has a lock on the world through Big Pharma. So it’s triple therapy,Ribavarin,PEGInterferon,& Victrelis. 1st shot had a violent reaction,temp of 103,freezing, convulsions. My poor spouse said I got violent any time she begged me to let her call the ambulance. I called Drs, office each time I got a delivery, my wife called him after hours to tell him of my reaction,& called Genentech.
    Well my nurse called Wed. and tried to blame me for not having called to have my 1st labs. Needless to say, I straightened her out. So I am going for 1st labs in a few days & it’s week 5-6. Hoping to hear of some type of improvement, wondering if I should have went back on the meds. I mean I have other conditions I have to take meds for. I do not believe it was given us the choice to choose the time of our leaving, so I would quit therapy before doing anything to hurt myself(& thereby my family). Pray these meds help, all of us. Thanks for letting me rant. I will check back in from time to time. God Blesss

  • nelson

    hvc with severe problems and going blind from other causes got medicad for one month onley girlfriend w cancer and hvc found cure last week shoved butcher knife in chest me i dont plan to give up i will push on and you can to nelsonlang51@yahoo.com

  • Cordie Winters

    Yes you do…..

  • Tab

    My experience so far; I’ve got Hep C while serving overseas (dentist) in 2003 n I have geno type 1A, I’m 45. The 1st year long treatment (ribo n interferon) was an extended flu in which I worked n attended military courses on. All I got was lower viral count but no remission. The 2nd year long treatment ( peg n interferon) was negative til 5 months later. While on treatment I had to take synthetic ammune system booster cause the meds suppressed mine for 7 months. It took about 6 months after treatment to go in public cause my ammunity was so vulnerable to everything n I got a clot in my upper colon that MAY or MAYNOT be associated with the treatment (there have been a few other cases in Japan of treatment) It took a toll on me mentally wondering if there was something I could have done better to have kept the remission longer, which made me depressed for a while. I had to leave the Army n move on! I took up horses that make me get out of bed n exercise everyday n help forget my problems, even if its only for an hour. I am about to start the new combo 2013 (Canada) interferon, ribo, peg treatment, but I no longer look at is as a cure, but to buy time. Everytime I finished a treatment the pain from enlarged liver n edema would subside for a while. I’ve learned to ask for help, realize I have limitations, keep a GOOD support group around you n live life like its your last to keep you mentally strong!!! For me this was an eye opener n life changing experience. It has made me realize whats really important in life n to life the one life we live n whose going to pass on the memories, so make it count!!!

  • 141park

    okie49,..and I will keep You in my thoughts… I’m scared, too. ‘Tested positive for HCV in 2002; now it’s 2013, and Ive a crazy-high viral load but a very good, clean liver. WHAT does that mean?!! No one wants to tell the truth , it seems, in that this atricle suggests that people don’t die from complications of HCV but do die of suicide/OD (72%..?) and “just over a quarter ” die of liver disease. I have no health(HA!) insurance, and there is no “good” outcome. I have found most articles about “new and Improved treatments” are primarily sales adverts. Nonetheless… I would really like just 1 good night’s sleep. Really, does anyone know/ could anyone tell me about sleep disorders, Hep C, and how to get any help?

  • dirtdiva

    I was diagnosed with Hep C when I was 21, I’m now 46. I have genome
    4c contracted from someone who had been overseas. I was
    diagnosed with A,B and C all at the same time. I was told the Hep A
    manifested in the worst symptoms of flu like aching and lethergy – air
    borne. The Hep B was the virus that attacked my liver so ferociously
    and almost killed me. The Hep C, is the chronic illness that does its damage slowly
    and causes the liver to deteriorate over time in conjunction with one’s
    lifestyle – so I’ve been led to believe. I’m not a host
    carrier of
    Hep B as my system cleared it so I can’t pass it on, my liver enzymes
    (ALT) hover in the area
    of mid 20’s as a rule, but have been as high as 200 in times of stress
    and pregnancy vs the normal 5-15 in a person without Hep C. I do not present any symptoms such as jaundice, fatigue,
    spatulate fingernails. I’m physically fit, slender, happy and work long
    hrs. I drink a few glasses of wine each week and have for years. I have a healthy lifestyle and don’t harbour stress. I have not taken the interferon/ribivarin treatment due to the 35%-55% possibility of being “cured” with the genome type I have. My liver specialist is terribly frustrated because of this and my refusal to even get a biopsy. “If it ain’t broke don’t fix it”. I don’t want to be a victim, I just want to live, albeit a possibly shorter life, and don’t feel or look stricken with a chronic disease. There must be many like me out there as I believe over 30% of the people in N. America who have Hep C don’t even know it.

    • Camilla

      Exactly! Refusal to be poked, prodded, biopsied while maintaining healthy labs, healthy/happy life along with healthy wine and regular spirited exercise can frustrate those that don’t adhere to the “if it ain’t broke don’t fix it” mentality, which; is far from the same as “ignorance is bliss” –

      During the late seventies, the diagnosis was non a, non b – regretfully, the people that I’ve know that have taken the “anti” viral cures/treatments – well, they are no longer alive.

      Over the years, one must become adept at dealing with, at times, sneering medical personel that judge one by their honest admission of Hep C on the customary forms filled out while at a new provider.

      Look well, feel well, Smile and Love your Life -

      • Dee

        Oh boy. I would like to agree as I am a hedonist at heart, but its all fun and games until you are spending your days on the floor in the bathroom, throwing up and delirious. I used to party hard for the first 20 years after getting hepc, with no symptons, and then bam! Do as you please, but know that alcohol is the most harmful thing to do to your liver if you have hepc.

  • John Hodgkin

    Dear, stuart H. I understand. If you read rndld’s comment you will see, or try to understand why I posted my comment.

    Most people when they are diagnosed with Hepatitis-C are put into a complete realm of fear. To do Tx, or not to. If you don’t, you will progress and then be subject to death from this virus.. This happened to myself when I was diagnosed in 1998. Still the dark ages concerning Hep-C. I am truly sorry that you didn’t understand what I was trying to say.

    I am in medicine and extremely educated about this virus. It was the comment made: “take the drugs” they are even better now, “fear will kill you” not the drugs. That made me have to comment.

    I have no attitude concerning anyone’s choices. Just people scaring others into “Fear Based” medicine. The Tx works for some and not for so many others. I do not go around “stomping” as you say upon others hopes and choices. I just don’t like posts or comments that could cause people to do Tx, or something else out of Fear!

    What I posted was factual based lab and virology findings. If you have done research on the Tx you will understand more of what I was trying to explain.

    I have lost several friends who have done the Tx and had been told they were “cured” and started drinking again. I’m sorry if you think I am a hipocrit and have a bad attitude.

    But there is nothing I can do about that. We are each entitled to our own opinion’s and I respect that. I feel no shame in what I posted, I’m sorry you did.

    Dali Lama: There is no control, only influence.

    • Susan

      Is English your 2nd language. If so, I will overlook your grammatical mistakes. You are generalizing your collection of unsupported information. Obviously, medicine experience is that of a patient. I, also, have hep c. But, I rely on one of the best hepatology and transplant centers in the country. Lookin forward to new type 1 tx..
      .

    • Judy

      Dear John and Stuart,
      BTW you both spelled hypocrite incorrectly : ) lol
      John, what you wrote really is very discouraging but I would rather the truth than to have it sugar coated. Thank you for your candor.

    • Charlotte Walters Gilmore

      I’m doubtful that you really are “in medicine”, since you don’t seem to know that a pathogen is something that CAUSES disease, as opposed to a lymph system, which helps to protect against disease. And obviously “brain tissue” is not a pathogen.

    • dale

      john hopkins since you have much knowelge on the subject my brother has hep c his stomach is swelling holding water retention does this mean the liver is dying and does it mean he wont be with us long and if i give him half my liver as a living doner will that make him better and will it rid the hep c or just the liver deciese

  • roeenna

    me too, have not even been to the dr’s yet and was dignosed, they were looking for something else and found this…so now ontop of everything else I have I have this too….Damn when it rains it really pours for me!!

  • roeenna

    Why am I not scared. I was just diagnosed and have not even had my first appt. with my Dr. yet…I have had so much wrong with me for the last 10, 15 years that this is just another one to deal with? I guess I need more info.

  • Nuet

    Hi this is the first time on this sight, writing anyway. I read alot comments and sometimes it scares me but also informs me on what others like myself are dealing with. I was diagnosed with HCV 36yrs. ago. I had my first biopsy 35 yrs ago and was told I woulden’t live long? I’ve only had one other biopsy about 15yrs. ago. Since I have no plans at this time to start any treatment I have not done another biopsy. At this time in my life I am just trying to eat healthy, no alcohol, plenty of rest and light exercise, walking and yoga and I do smoke and also juice marijuana .So far so good. I believe I will some day die with this but not from it!

  • Shannon Tucker

    Thank you so much. No fear and take charge is my moto in working with hepc. I have been infected for probably 38 years. I am a beautiful 60 yr.old woman who lives alone and counts every minute of every day as a blessing. I do everything I know of to combate fatigue and depression. Most reciently, ALA I.V.s which I had to discontinue after 2 months because my vanes, arms and legs, were screaming to stop. Also Myers cocktails. Wonderful stuff. So I do it orally. Most depressing of all, I am a massage therapist and love my work. I have had to cut way back on how many people I work on a week. hardest of all, I have to educate clients about hepc. They are not going to get it by recieving a massage from an infected person.. Next worst thing, I have little if any support from family or friends. Its a tough road . Be strong , and thanks for speaking the truth so clearly. God bless you.

  • Shannon Tucker

    This is so reassuring for me to her you drs. talk about having hepc. I have a question. Do you have an obligation to inform your patients? Like I was telling you, I am a body work therapist and nutritional coach. Some times I just keep my mouth shut. But is that right?

  • Shannon Tucker

    Depends on what geno type you had [have]. Geno type 1 does not respond well to the treatment that made you feel better.

  • Waiting so long

    Hey everyone my transplant team dr @ Johns Hopkins hospital say new drug will be out in Jan 2014 interferon free and it will get rid of the virus……..yes it’s true…wooohoooo yay

    • Chidy1000

      I like your attitude. Also this forum is really nice, you see people struggling like you and laughing at the problem. As medical readies to come to the rescue

    • Riley

      See Cosmos study. I went through a transplant clinic at very reputable hospital…..Genotype 1a, tested favorable for the “CC” allele (?). No idea what it is. Sovaldi/Olysio for 3 months. Someone I know completed that same regimen, tested undetectable at end. I’m finding it is better not to take on other commitments right now…exercise soon as doc recommends. I had the Dx in 1996, saw 7 GI docs, not one of them fully informed me about the disease…just had to research it all for myself and ask questions. What I’d like to know is how can 2 – 3 million people in the US be infected with hep c and most of them never shared a needle? ‘Don’t know the stats on this. How did this horrible virus spawn itself? At the end of the day, I’m thankful for the group of docs now treating us at the clinic and equally grateful for help getting it from my Rx plan. Good luck to all who are starting the new meds.

  • Marc Satori

    Thanks John, I thought your article WAS uplifting and I got a lot from it. I was treated twice with interferon and it ended up being part of why I got divorced. They said I was cured the first time and then the second time it just didn’t work, yet I’ve become very healthy by changing my lifestyle and eating well. All this after I had cancer and a resection. So I thing there is a lot to what you’ve said.

  • trotter

    Vietnam Vets have a higher rate of infection from HCV. About suicide/depression, it is proven that Hepatitis C commonly causes depression in and of itself.
    Re: article itself, it’s 1st time I’ve heard or read of suicide or overdose causing the majority of deaths. It needs to be known: we die of Hepatitis C. We fight hard against it but it still catches enough of us that people need to know about us. It seems many experts or others just have to try to make it OUR fault, then they don’t have feel too bad for us, I guess. We are strong, determined people who’ve had a disease jump right in the middle of our lives trying to defeat us. Sometimes we can hold our own, sometimes the pain and weakness overcome us. Join support groups when you can, be together on the internet. Hang together and hang strong. Do your best, that’s all u can do.

  • geegee

    Given that you seem to be incapable of accurate spelling of simple words, this would indicate a likelihood of your being unintelligent, ignorant and uninformed.Stop scaremongering.

  • Chris Raines

    My dad contacted Hepatitis C as a child over 70 years ago. He lived a full life, working 2 jobs…one of them as a farmer, and lived well into his 70’s. No. He wasn’t cured but he never had a reactivation of the virus despite having open-heart surgery and becoming an insulin dependent diabetic. He Never drank alcohol but he smoked like a train. I hope someone feeling despair will take comfort from this. You can beat it. I’m not in medicine and my level of knowledge is minimal but I do know what I’m saying to be true.

    • trotter

      There was no sign of Hepatitis C 70 years ago. Some people are able to work a full time job now, many more are not once the Hep C has progressed.
      Probably the best way to feel is to be scared enough of Hepatitis C to get information (about this terminal disease and your own case), but not scare enough to wake up each day with at least a bit of hope.

  • Rileyann

    I’ve had the diag of hep c for 15 years and visited the top GI doctors (7) in northeast and (1) at a prestigious clinic. Not ONE ever gave me hope. I found it impossible to plan for the future, one day feeling fine, starting a job and getting sick, several bouts of cold/flu and mostly intestinal discomfort. I take a low dose, atypical anti-d. Hep c sufferers need more social support and medical support at least once a week in a group, just like AA people. It is a constant state of anxiety we fight to feel better; being with friends, family helps, but ultimately I’ve found the best peace and well being with prayer and my faith God has heard me and that His power to cure/heal is greater than anything man has made. This is just what works for me. I went through an intense Transplant evaluation for 8 months, tests and more tests, to be told I now have to have another test before I will be given any anti viral drugs.

    • rileyann

      Adding to my own post above: As an instinct, I really felt the auto immune aspect of hep c should have been investigated, although recently I pushed for a final diagnosis on that, I had to undergo my first liver biopsy,, which was horrible, and not done without pain. (at a top hospital, too). Choose your hospitals and doctors wisely…..when first diagnosed, I had not a clue but went gung ho for what seemed like the best medical advice. At this point, with some cirrhosis (don’t know the stage), the docs are more hesitant to treat me with anti virals, tried interferon/ribavirin once while working and felt wrecked every day. GET THE BEST MEDICAL ADVICE AVAILABLE AT THE MOST REPUTABLE MEDICAL CENTERS right away. Keep fighting. I need a lot of rest. My platelet count is low. Understand the warning signs before esophageal bleed. I was lucky to be alive they told me. Severely traumatic. Find something you really enjoy doing or work which is rewarding. Each day is a gift. I feel the NIH and SDC really lagged behind with research. Keep your strength up; some docs are kind and compassionate, some not and will never give you the whole picture. I happen to trust and respect the team where I’m receiving care and being 5″ from the hospital is a great support. I’m mostly alone, too, family and friends can’t empathize. I still have plans and dreams, who doesn’t. Peace,

  • Ethan

    As someone currently doing a residency with a top Liver Center in Boston, I disagree with your assessment. The drug regimens just out of clinical trial demonstrate that the disease can be eradicated from the body without the use of interferon.

    • Riley

      I’m on the combo therapy, day 5 and feel more energy than in 10 years. We will see as I keep focus on month 3.

  • trotter

    Facts don’t agree with you. Left untreated, most people with Hepatitis C DO progress out of stage 1 or 2.

  • trotter

    They now know that Hepatitis C is clinically linked to depression. If you add Interferon tx to this, it causes depression. And I have never seen a study that repeats the results of the 72%. Hepatitis C kills people in and of itself.

  • trotter

    Hepatitis C causes diabetes in some patients.

  • trotter

    Second tx did not get rid of virus. Liver transplant does not get rid of virus.
    Hepatitis C is in our blood and as long as there is a drop of blood in our body, we have Hep C. The best we can do is to lower the amount of virus in our body, which is our viral load.

  • trotter

    This is a year later, but I must say how sorry I am for all you’ve been through.

  • trotter

    Also, the drinking water is not related to Hepatitis C, which is strictly blood borne.

  • Felicity Coombs

    I came looking for an answer to that for a friend who is RH neg. I think she is A- and has recently started Interferon. It is making her incredibly sick and swollen.

  • ray

    A family member was dosages with hep c with genyno type A1 and B3 with load 3000000. And they want him to start treatment asap however the two types conflict treatment correct also A1 is common in America but we live in the mid west is the USA it’s uncommon to have B3 also as of a year ago he was always hep c negative so within a year he contracted hep c with two types has a extremely high load and severe liver damage he is hiv neg ……the doc said he had 5 to 8 years to live if he starts treatment now, and if he don’t he will die within a few years he is only 29 show he get another opinion and have you heard of this and what should I do to support him? Ty

  • Shirley

    I’d like to talk to people who are on the new treatment solvaldi ribivirin and interferon. I’ll be starting my 4th week. worst symtom headaches

  • Riley

    quite a story, I thought mine was hell. I hope you are more stable now. I’ve read that about Big Pharma…..My docs order my labs ahead of time and keep a schedule on patient notes we can access online through the hospital. I know God wanted me to have these meds, I felt almost dead last week after a 3 week cold…was able to get co-pay funding through PAN, meds were delivered, almost missed the driver, couldn’t haul out of bed….it’s a lonely road but for God. Many believers claim to have been cured of viruses, but my body still showed I had it. Now I walk by faith, not sight, being wise to trust some docs, not all. I almost died 2 years ago with an esophageal bleed, was not warned by bad GI doc, after I researched and begged for a beta blocker instead of endosopy, of which I’ve had 5 now, plus emergency one and 3 units of blood. Very traumatizing. I was never warned of the bleeding of portal hypertension, the killer…miraculously, I made it through 2 ers, 3 days in MICU, 3 more in hospital. There are docs who care, those who do not. Now I’m alone, which sucks, but joined an online support group. I do hope your made progress with the meds……God can use doctors and talking donkeys….He is still in charge as far as I believe and knows my frame…God bless. Good luck to all. Sorry I rambled, and hope I did not offend those of other faiths…it is only to share my experience.

  • Elaine

    Hi john ok im a 23 yr old women and have been living with hip c for 6 yrs going on 7 i have not took any kind of medication at all i have not drank smoke or anything else i just dont know what to do from here and ive been reading alot of the biopsy and have decided to not take that route what can i possibly do from here i will consider taking the meds…thanks and god bless

    • John Hodgkin

      Elaine. So sorry I haven’t got back to you until now. You are young. I am willing to bet that on your ultrasound your liver will be in perfect shape! I truly believe that. Your viral load has nothing to do with liver damage. Try and not get depressed about it. I know that is easy to say, but you have time to decide what your options are. There are 2 protease inhibitors out now that even if you are a genotype 1a or 1b you can gain an SVR with these 2 new PI’s and not have to use interferon or ribavirin. I was diagnosed in 98 during the dark ages. I chose like you to not have a biopsy because a biopsy does not reveal how the health of the whole liver is doing. They would have to do 30 biopsies to actually see how the whole liver is doing. They can’t so why do even one. I chose “active surveillance” instead.
      I am running and cycling and juicing and stretching and have lived a really clean lifestyle. I am 61 and had my 1st complete abdominal ultrasound when I was 60. My liver is totally normal. Many people on this forum have disdain for people like me because they did not research and just jumped on the interferon and ribavirin and got sicker from the Tx’s. Or they are petty and even want to ridicule you for your spelling! How shallow.
      If I were you I would see a really good integrative health practitioner that is well versed in Hep-C and how to use diet and nutracueticals and lifestyle changes to treat your liver and your overall health. Do a metabolic ratio blood test and a liver function panel and ask your doctor if they can order a complete abdominal ultrasound for you. These tests will put your mind at ease. See a great Naturopath in your area. Research the new trials that are going on in your area for the new protease inhibitors. But above all, listen to your own intuitive voice.
      I believe this virus can be controlled not unlike Diabetes or any other chronic condition. Yes there are people who progress to liver transplant, yes there are people that get sicker from the virus. But you must remember, everybody responds different to chronic disease. But you don’t know how these people are living their lives. I believe that food is medicine and medicine is food. There are new genetic studies out now that show many people can live with this virus and do extremely well. It is great that you know you have the virus. Knowledge is power. Not getting tested and never going to a physician are NOT the way to go. Never being screened or going for regular health wellness exams is just plain ignorant. Ignorance is not bliss when it comes to your health. You have your own health in your hands. Be proactive, not reactive. Many people do not want to go to the doctor. Don’t be one of them. Like I said find a true health partner, a Doc that is well versed in this disease, but is not going to try to scare you into Tx.
      Do not let people scare you! I was told that I would be dead by now if I didn’t do the Tx. I was also told that I would need a transplant by now too. The Hep-C support group meetings were extremely depressing for me and full of distressed and very dark minded people and Big Pharma influenced. Find other friends or people that are positive and living with the virus and are active and exercise. I still have not done any Tx yet. I don’t know that I ever will because I am living proof that you can live with this virus. You have to completely abstain from any alcohol completely and no drugs! Maybe occasional 420 if it helps you to sleep. But watch the Tylenol and other drugs that are pharmacological and are OTC.
      Start juicing greens and beets w/beet greens and wheatgrass and eat extremely liver friendly. Watch the sugars and corn syrups etc. Let me know if you are diabetic or any other health issues you may have at this time. I could care less how you acquired this virus, it doesn’t matter. What matters is your overall health, mind, body, spirit. We all face health challenges along the road of life. It is how you cope and handle them that is your greatest asset. Keep me posted Elaine, yours in health, John

  • Dot

    What kind of Medicine do you practice?

  • taylor

    what are the symptoms of hepatitis C before you die

  • taylor

    What are the ending stages of hep c