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non-treaters
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non-treaters

My question is for anyone here who is living with hep c and decided not to do treatment. Do you have any advice as to how to live with the virus, any tips or advice is appreciated. I know the obvious...don't drink or smoke, eat healthy, sleep, exercise. Just wondering if there is anything else I can do to keep symptoms down and to make this any easier on my body. Thanks for your comments!
23 Comments Post a Comment
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446474_tn?1404424777
Get a biopsy to see if you can afford to wait before treating.
Without a biopsy you are playing Russian Roulette with your life. Untreated cirrhosis can lead to liver failure or liver cancer. Educate yourself about the risk you are taking by not treating hepatitis C. In the end it is only you who will pay the price for ignoring a virus that destroys the liver.

Not drinking, smoking, eating healthy, sleeping and exercise or anything else will not stop hepatitis C from progressively damaging your liver over time.

Hepatitis C What Should You Know
http://www.faetc.org/Hepatitis/Patient/Peg_2b/Hepatitis_C_What_Should_You_Know.pdf

Good luck.
Hector
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1722607_tn?1335751458
I had a biopsy over a year ago. Stage 2, grade 2. I have had the virus a little under 20 years.
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446474_tn?1404424777
You can probably wait for the next generation of all oral, non-interferon treatment that will be available in the next few years. Only you can make that decision.

You should have a biopsy done every 3-4 years to check the progression of your liver disease.

Good luck.
Hector
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Avatar_f_tn
I haven't had any type of treatment nor a biopsy done since I've know I had hep c due not having insurance anymore
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Avatar_m_tn
I was going along fine thinking nothing could hurt me ..that I could wait and then a close friend of mine developed full on liver failure symptoms and died at 52 , it happened so fast (over a 8mnth periid) I decided it was no longer worth it to wait it out  I knew I ha this for 16-18 years and never had any kind of symptoms or reason to think something was going to happen
That said this therapy has been rough and I am only in my 4th week of TX
But nothing is going to stop me from getting this out of my body once and for all
It worth it to get rid of it sooner rather then later
Why take a chance
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Avatar_m_tn
No one knows for sure when the next generation of drugs are coming out. Could me 5 years or more.
Not sure why someone with stage 2 fibrosis would wait to treat? especially when present drugs offer up to 80% cure.

Like I posted here before this disease is very silent and has a way of sneaking up and biting you on the butt!

Once you get to stage 3-4 fibrosis progression can move very fast. Once you get to stage 4 things become very complicated with your health, treatment, etc.

best of luck
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979080_tn?1323437239
Assessing the degree of fibrosis is a tricky thing especially when in the middle stages.
Biopsy only samples a very very tiny part of your liver.
With  F2 on biopsy I would be happy to have caught the disease in
the nick of time with the possibility of complete reversal once cured.
I would not chance that possibility.
Just my opinion.

b
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Avatar_f_tn
you need to call the national liver foundation press option 1-they will help u find the money or thats what they told me but the website is (i think)nationalliverfoundation.org
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179856_tn?1333550962
Agrees with copyman and Bali.  Stage 2 could easily really be stage 3 (if not already then it could be soon).  Stage 3 is a completely different ball of wax.

I can't understand why anyone at stage 2 would not treat with the current drugs.

Shoot in the olden days we treated at stage 2 with a much less chance of success for a much longer time.  Eating healthy will not slow down the progression of HCV it will continue to attack your liver until it is killed.
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1815939_tn?1377995399
I agree with copyman, Bali, and nygirl. If your biopsy shows Stage 2, you could actually be Stage 2 in some places and Stage 3 in other places (of the liver). Your fibrosis progression could pick up speed. People with Stage 3 fibrosis have a lower SVR rate than those with Stage 2 fibrosis. In addition, Hepatitis C is not just sitting there reading a book. It is actively damaging not only the liver but also other areas of the body. It causes the body to be in a state of chronic inflammation. Hep C can have many extrahepatic manifestations, some of which can be quite severe.

Just for the record, I always ate a healthy diet, an exceptionally healthy diet. I exercised. I never smoked. I rarely drank, even before my diagnosis in 2011.  I avoided chemicals and toxins ... used all organic and/or natural products. Still, I developed unexplained environmental allergies, unexplained Asthma, Systemic Vasculitis, an unexplained gradually increasing blood sugar, an unexplained weight gain (I had always been thin), increasing and very noticeable fatigue, and increasing back and joint pain and aches.

If it was me, I would treat at Stage 2. Actually, I did treat at Stage 2 (with Incivek, Inf., and Riba). I am now UND at 12 weeks post EOT. I feel great, better than I have felt for 19 years. (Those problems I mentioned in the previous paragraph are now gone. )

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

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Avatar_f_tn
  Summer, I hope you do decide to Treat, when the new Interferon free meds come out, if it is fear of Interferon that holds you back~
     That being said;  I would be taking a vitamin D3 supplement, I take the 5000 iu tablet, one daily, it is tiny, and doesn't upset the stomach.  Heppers are sometimes low on D3.
   I would also drink a ton of green tea, and avoid red meat. Once I hit menopause, nothing I did helped though, and I had been a health-nut, for the last 13 yrs. I ate all organic food, took a series of vitamins daily:  Alpha-Lipoi Acid (ALA) Selenium, Zinc, NAC s-AME, the list goes on. I have a whole shelf of it, and I was continuall broke because it all costed so much~
    Nonetheless, at age 49 yrs, my platelets went below normal, which is a sign of impending cirrhosis, and I had to Treat.
   I cant describe how great the feeling was, when after onlky 4 weeks on Interferon and Rbaviran (the lead-in, as I am geno 1a) my virus was GONE...completely Undetected, and my AST and ALT which had been elevated for 20 yrs, were NORMAL!
   I thought to myself, I should have done this YEARS ago!!!
You can also get tested, to see what your ILB28 elelle marker is: CC is the elite one, that clears easily~
    
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Avatar_m_tn

I really don't understand this waiting bit when somebody is already very close to stage 3 if not already. What if something happens in these trials? While one is wating their SVR odds could be going down. Its just crazy in my book to risk becoming cirrhotic...... People read these PR stunts by the drug companys and fall for their crap. Heres what Vertex was saying back then.
"None of this means that Vertex shouldn't push the FDA to review telaprevir as soon as possible; and the company has stated it will do just that once the final data from PROVE 3 are in hand in late 2008, early 2009.
If Vertex is successful, telaprevir could be filed with the FDA in mid-2009 with an approval in late 2009."

Well Vertex was successful, no problems yet they were off by 2 years.
My point is these companies spin their news to create interest.

Wishing you the best
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4355200_tn?1354596744
I am 1a, stage 2, grade 3 and am chomping at the bit to begin treatment.  I just got my complete diagnosis a couple weeks ago.  My  frustration is that I can't get in with my hepatologist again until May!!  

Even though I'm new to this whole thing and can't offer experienced advice, I must say I am in total agreement with all the folks who have responded.  They do have experience and have helped me through these beginning stages.  Please, take their advice and seek treatment.  I have known several people who did not over the years and, sadly, they are no longer with us.
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Avatar_f_tn
    Well, Hep C is slow moving, and I dont see alot of women having cirrhosis as young as Summer (35 yrs her profile states), and I have noticed people do tend to wait until they are older to Treat: my support group is large, and most of us are ages 50~65 yrs.
    Then again, once Estrogen begins dropping, which for me, began as young as age 43 yrs, then fibrosis does sometimes progress faster.
    My best-friend just had a biopsy, is stage 2, geno 2, with a rly low viral load, but doesn't want to treat yet, because she also is afraid of Interferon. To me, that is just crazy, but then again, all her blood values are within normal range.
   What got me to jump into action was that my platelets went below normal range. For anybody choosing to wait, they should definitely have labs drawn,  every 6 months, and educate themselves about this disease, and learn how to read those labs, and look up all abnormal findings.
    
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1815939_tn?1377995399
"Well, Hep C is slow moving, .....and I have noticed people do tend to wait until they are older to Treat: my support group is large, and most of us are ages 50~65 yrs. "
------------------------------

Were those people actually "waiting" to treat?
In other words, were they diagnosed with Hep C at age 35 and then consequently  "made a conscience decision" to "wait" to treat "until they were older?"

OR ...  on the other hand, were they never treated at a younger age because they were never diagnosed at a younger age and consequently did not know they had Hep C until they were older? Obviously they could not treat if they did not know they had Hep C, but that is NOT the same thing as waiting or making a decision to wait.

Have you happened to notice how many older people come onto the forum with Stage 3 and 4 liver fibrosis? Many of them are newly diagnosed. They were not "waiting" to start Tx. They did not even know they had Hep C.  If they had known they had Hep C and had been given the opportunity to treat, most would have treated long before their liver disease progressed to Stages 3 and/or4.  

I was 65 when I started treatment. That is "older." But the reason I treated when I was older is because I was not diagnosed with Hep C until I was 65. Had I been diagnosed at 30 years of age I would have treated at 30 years of age. As it was, I was diagnosed in July 2011 and started treatment in September 2011, only 2.5 months later.

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Avatar_m_tn
"Well, Hep C is slow moving, and I dont see alot of women having cirrhosis as young as Summer (35 yrs her profile states),"

Care to give your thoughts on why at 35 she is already pushing stage 3?

Also those of us around 60 didn't know 25 years ago, besides how was treatment in the 1980's???
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179856_tn?1333550962
Agree I did not know I had it until I was.....45. Stage 3. Had I known when I was 25 perhaps I could have saved myself a whole liver. :( I treated for 72 weeks starting a month later. And I was mad I had to wait the month because my doctor forgot my opthamologist appt.

I had no symptoms and only insisted I be tested (first doctor refused) because my liver enzymes were elevated (in the 200s).  First doctor said no you dont have it. Great listening to doctors who are better at diagnosing the flu.
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Avatar_m_tn
I would elect to treat when younger not only for liver fibrosis progression but to avoid getting all the extrahepatic manifestations that come along with HCV. Not only are the few mentioned below but Lymphoma has been associated with HCV.

Chronic hepatitis C infection predisposes patients to the development of diseases involving other organ systems including the kidneys, the skin, eyes, joints, immune system, and the nervous system. There are many extrahepatic manifestations of hepatitis C: some are relatively common (e.g., cryoglobulinemia), whereas others are infrequent and their association with hepatitis C has not been clearly defined.
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979080_tn?1323437239
For me the one principle argument to tx was that if I treated everything
was still reversible.
You don`t want to miss that bus.....
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Avatar_f_tn
   Yes, I agree with everybody above.  I did know I had Hep C, 20 yrs ago, but I was pregnant when I found out. Then, a few yrs later, I had a drug relapse, for another 4 yrs, unfortunately. Then I cleaned up, and had 2 more children, so I put off getting treated, because I had post-partum depression.  I was afraid of the psychiatric affects of the Inf/Riba, as I also had suffered from serious anger issues, i.e., explosive temper, which I went to jail for, in my late twenties.
   There are many reasons that younger people put off Treating. My Doctor kept telling me that people dont usually have problems, until they have had it 20 yrs. Sure enough, as soon as I had had it 20 yrs, my platelets went below normal, they slid down to 122.
   Since the Treatment also has the side affect of causing our platelets to drop, I wanted to treat right away.  Luckily,  I already had 12 years clean, from hard drugs and alcohol (but still a minor pot habit), and I had alot of psychological serenity at that point in my life,  and my children were at a great age to treat, not babies, and not teens!
    The OP has been on this website a long time, and has been reading all of our experiences. I just wanted her to feel free to ask questions here, without feeling like she was getting a big lecture, which sometimes makes people close up, mentally. I didn't want to come across as "preachy", I wanted to tell her my experience, and let her make her own decisions, without shaming her, or making her feel self-concious, about hesitating to treat.
   The people I know who are also hesitating to Treat with Interferon (my Hubs and BFF) have known they have had it, for 20 yrs. Many people in my support group also have known a long time.
   Some Medical Insurances wont pay for Treatment, when a person is in Stage 2, unless they can prove that they have other serious symptoms, caused by the Hep. I'm not sure about Kaiser, as I have different Insurance.
    I had a FibroSure test done, that had me at .77, which is catagorized as Cirrhosis, so I definitely used that test, to send into my Insurance co,  although my biopsy had me as Stage 2, grade 3.  I was surprised and over-joyed, when they approved me for Tx.
   I just wanted to point out also, that 33% of the people with Non-Hodgkins-Lymphoma (NHL) also have Hep C. Hep C taxes our immune systems: our bodies our busy fighting the vurus which replicates by the trillions, everyday, so it may be too busy to catch other problems.
    Before I went into Tx, I had a breast infection, that lasted for years and years after I had finished breast-feeding my youngest son. The pain had begun to spread up to my armpit, and I also had an enlarged lymph-gland on my neck all the time.
   When I compared my labs with another person I knew, who knew they had NHL, our abnormalities on the blood tests, were identical: Alpha-2 Macroglobulin high, at 4.3, Haptoglobulin low, at 26...platelets low. This person questioned me about a LDL test (not sure what that is, but they said it was an important one, for determining NHL) Well, I finally found an older lab, and yes, that one was outof whack also.
   I'm just happy to report, that since I have Treated, no more breast pain, or swollen lymph-node. It made me wonder, how many of us Heppers may have Lymphoma, and not know it? If my platelets are still low, at my 6 month post labs, I will take more tests, other things cause low platelets, such as cancer.
    I never wanted to come off as "casual seeming" with the OP, me of all people, like so many of you, am a total vigilante, in terms of people seeking Treatment, and my Treatment experience has been very positive :)
    I do appreciate all of you people on here, especially the Old-Timers.
I realize that you want to make sure that people  have very accurate imfo, as this is a serious subject, but I also appreciate the right to free speech, and want people to feel free to ask questions, because thru questions and open communication, we can all learn, and pick up new ideas. That is the beauty of the open-mind~  I hope I am not coming off as preachy right now~

    
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Avatar_f_tn
I agree with those above who stated that it is best to treat when there is a treatment option when one is at the middle stages of fibrosis.  We do not know when f2 will become f3 or when f3 will become f4.  

In my husband's case, he has had Hep C for about 37 years, didn't know, was diagnosed in 2007 with Hep C, determine between f1-f2 at that time, and failed SOC in 2007. No other treatment available at the time, but monitored liver enzymes and other bloodwork regularly, repeated liver biopsy in 2010, determined f4 beginning Cirrhosis. Failed Consensus Interferon (daily injections of Infergen and 1400 mg of Riba) in 2010.  Again, no other treatments available at that time, but monitored enzymes, bloodwork, and scans of liver regularly.  No new biopsies because we already know he has Cirrhosis.  Failed triple tx with Incivek in 2012.  Still monitoring bloodwork and scans of liver regularly and waiting for next opportunity to treat.

My point is that we don't know exactly when he transitioned from f1-f2 to f4, but it occurred between 2007 - 2010.  That transition right there took him from the possibility of reversing some/all liver damage to irreversible liver damage.  That transition right there decreased his chances of successful treatment and increased his chances of much more difficult and dangerous treatment.  That transition right there increased his chances of complications from liver damage, such as ascites, varices, and hepatic encephalopathy.  That transition right there increased the need for even more frequent monitoring for liver cancer.

In his case, there is nothing different that he or his doctor could have done to prevent that transition because he tried every treatment option available to him as soon as he could.

I have said this before on this forum, and I will say it again:  those of you who have middle stages of fibrosis (f2 and f3), consider yourselves lucky if there is a treatment option available to you and consider treating now, if your doctor advises it, before you progress to f4.  Don't count on Hep C causing liver fibrosis progression slowly over decades.  That isn't always the case.  It isn't predictable, and can progress quickly.  Don't count on the new meds being available in a year or two.  That isn't always the case. Everyone expected the triple txs to be available several years earlier than they were.

Now that my husband has been diagnosed by biopsy as f4 Cirrhosis since 2010, we don't know how long his liver will stay compensated or how long he will stay cancer free.  Believe me when I say, if there were another approved treatment option that he and his doctor think would benefit him, my husband would take it as soon as possible.

People with middle stages of fibrosis need to know that if they don't treat they are turning down an 80% possibility of reversing liver damage to gamble for the chance that they won't progress to f4 Cirrhosis before the new drugs come out.  They need to know that if they do take that gamble and lose, they increase their chances of being too sick to treat with the next available treatment.  In that case, I hope they have good medical insurance, don't need to work, and have an excellent support system to help them with care, emergency room visits, and appointments, in case they progress to Cirrhosis and it's too late too treat and they develop life threatening complications, liver cancer, or end stage liver disease and a need for a liver transplant.

Absolutely, it is an individual decision, that one should make with the advice of an experienced gastroenterologist or hepatologist who is knowledgeable about treating Hep C.  Anyone with f2 or f3, please make sure that you have all of the information that you need before you make your decision, and base your decision on that information and your doctor's advice, not on your fear of the side effects of treatment.  

Decompensated Cirrhosis, End Stage Liver Disease, Liver Cancer, and Liver Transplant all sound much more difficult to me than treating Hep C before it progresses to Cirrhosis.  Every day I think about some of our forum members:  Allison1965, George, Eureka, HectorSF, creewoman, mckansas, Magnum, crossroads, and others who have suffered or are suffering so greatly with the results of advanced liver disease and the very real results of End Stage Liver Disease, liver cancer, liver transplant, or end of life, and every day I wish them well.  Every day I am thankful that my husband's liver is still compensated and hope that he will stay compensated and have the opportunity to treat again soon in the hopes that he will be able to increase his chances of getting rid of Hep C and stopping the progress of his Cirrhosis.

Everyone has to make their own decision with the information they have available and the medical advice that they have available, but I hope everyone makes it as an informed decision.

Advocate1955
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Avatar_f_tn
Summer, to answer your question about things you can do to stay healthy, I don't think there is really anything you can do to stop or slow down the progression of your fibrosis, other than clearing the virus.  Of course, it's best to maintain an optimal BMI, and not do anything that adds an extra burden to your liver (alcohol, tylenol, certain medications, etc.).  Hopefully your doctor has already screened for co-infections such as Hep A, Hep B, or HIV, and has vaccinated you against Hep A and Hep B if you don't have them.  Additionally, you should be monitored regularly (blood work, ultrasounds) to make sure that your liver is still functioning adequately.  When my husband was at f2, he was being monitored every 6 months and was scheduled to have a biopsy every 3 years and a colonoscopy every 3-5 years.  Other than these things, unless someone else on the forum can think of something to add, I don't think there is anything else you can do to keep symptoms down or make it easier on your body.  The Hep C virus may continue to damage your liver with or without any symptoms at an unpredictable rate.
Advocate1955
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3230925_tn?1397619565
   Eh how you doing,it's been a couple months since you posted.August ,September,November and now.Same question and you get the same answer go figure.I think you already know the answer to this,no matter how many times you pose the question you will get the same answer..Not sure here if you're in denial or have huge memory problems but you're going to really have to come to terms with this,don't wait until it's to late.
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