Anyone not treating and why?

[Sunnyside863]

I just wanted to know if anyone has tested positive for HCV, asymptomatic, and choosing not to treat at this time.. and, if so, why?  

[teschoa]

My choice over the years has been not to treat.  I was 65 when I was diagnosed with Hep C.  Told I had something wrong with my liver in !966.  I just did not feel that I could handle treatment--live alone, etc.  Decided to look at clinical trials without interferon last fall (Oct)  I was screened for a trial by Gilead in the Spring 2013.  They did a biopsy (first one since 2000) and found I have cirrhosis,  I was denied for that trial.  In late July, got a call that I might qualify for a trial by Merck.  Screened for it on Aug 27---one day after my 79th birthday.  Got it --on it--undetectable week 4.  No side effects so far.  It is either 12 weeks or 18 weeks.  I won't know which until week 12.  I am in my 6th week now.

I think the choice to treat is based on your knowledge of yourself and of Hep C.  It is slow moving and waiting for new non-interferon treatment may be fine.  I did not feel that I was a good candidate for a year long treatment with side effects.  I did not feel that I had many problems with Hep C.  However, since being undetectable, I find I have more energy which I did not expect.  This trial is not a guarantee, but neither is the current standard treatment.

I am happy with the choices I've made and am incredibly lucky to be in a clinical trial at this ripe old age.

Learn all you can about Hep C--look at yourself honestly and then make the choice that suits you--and you only--the best.  

Good luck with your decision !!

Teschoa    

[JamesJ2013]

I'm in 7th week of treatment. Luckily I have minimum side effects and I work normally almost without any problem. It took me about six months researching about the disease and treatment options (which in my case was only one i.e.pegasys+Ribavirin) before starting the treatment. Side effects are different for different people. So I would suggest to do some more research on the disease and options for treatment, it'll help you decide. Good luck.

[mormonwm]

I think the side effects of treatment are so serious and some permanently disabling, that you should think very hard before you consider treatment.  Especially if you are asymptomatic.  Don't let them scare you with the cirrhosis scare.  A very small percentage of people with HCV develop cirrhosis.  Plus for some reason women fare better with HCV than men.  Also, if you have the most prevalent type in the US, the percentage of those who clear the virus is very low.  They tell you it's 40 to 60 percent.  Not true.  Often it's 20 to 25% and after treatment if you're not cured, which it's likely you won't be, you'll have horrid side effects.  Almost always.  Like kidney problems.   They keep pushing interferon and distorting/ and misrepresenting your  slim chance of eradicating the virus in hopes of selling more treatments, making big profits.  They are not on your side.  Trust me.  

[heals1]

ive lived my life hard and im thinking against doing the treatment for 3a as all i can see is hassles im happy had a good life and not realy sure if i want to change im 44 and have a family which i love but sometimes the cure seems to worst than than the virous im sitting on the fence

[Sunnyside863]

Great news!  Glad to hear you are well and asymptomatic for so long.  As I hope it can be awhile before I have to make any of these decisions.  And glad your tx is going well so far w no side effects.  So your in Gainseville area?  Im a Florida native, born and raised on the Gulf Coast.  Last lived in Ocala, hope to return home one day soon.  Best of Luck, keep me posted:)

[Sunnyside863]

Thank you for your input.  Its great to see a few of you are able to wait for tx, as this is not good timing for me.  Thank God I am asymptomatic and feel really good.  

[mythoughts]

BTW, I do not have many symptoms. My digestion isn't perfect, and some minor upper right quadrant aches, but that is it. I manage with acupuncture, supplements, diets, moxibusion, meditation and guided imagery. I know that won't get rid of the virus, but I do think it is helping to keep me healthy until I can tx.

[mythoughts]

I am 36yrs old, female who is co-infected with Hep B (chronic) and HCv. My Hep B levels are so low that they are unquantifiable, but I show + for Hep B DNA and antigen, so I do not qualify for any HCV trials. They won't take anyone with any other liver diease. It hurts that my VL is so low it can't even be detected, but I still can't tget on a trial.

My HCV is around 475,000 and I just found out this week through ultrasound (normal) ad Firbrosure that I have no fibrosis (.16 of a level 0 range 0.0-0.21). My inflammation came back level 0 (level 0 range 0.00-0.17 and I am .17 so I'm almost level 1 but not quite).

All of my labs came back perfect except that my ALT ranges from 41-46 so it's high, but not too bad.

In light of these tests, I think I'm going to try and wait for all oral tx. I do not have a lot of money, and my insurance only covers 60%. I tend to be very nervous of my health and medical issues, so SOC may be too much for me. I am also EXTREMELY hard to draw blood from and have been told that I'd likely need a juglar shot to draw weekly for tx. That will add quite a bit to the cost, as I have to go to the hospital for that and have a doctor - not a technician - do it.

If I could get on an all oral trial now I'D DO IT!!!!!!!!!! But since I cannot, i have no option but to wait.

[FlaG8or]

I'm 67 years old and I found out I had Hep C around 1990, when I was a 10 gallon blood donor, and some of the recipients of my blood developed Hepatitis.  They tested me a couple of times, both negative, then they discovered antibodies for non-A, non B hepatititis.  At that time I felt great, and the treatment seemed worse than the curre.  I evidently contracted Hep C 20 years before that, as a medic in Viet Nam.  As a result I have a service connected disability for Hep C, but the VA won't treat me because I always test positive for marijuana.  They said I had to test negative for a year if I wanted them to treat me.  I felt fine, so I continued as is.  
I had looked at several clinical trial over the years, but they all had the same caveat .. no pot.  Fortunately this year a friend of mine told me about a clinical trial at our local university hospital.  I contacted them, told them I smoked, and they said no problem, that was not one of the drugs they tested for.  They were looking for folks with untreated chronic Hep C, so it was good that I never tried a treatment in the past.  This is a triple therapy, Pegasys, ribavirin and GS 7977.  Even though I have not had any problems from Hep C, I decided to do the trial.  It was a real plus when I went in for the first visit and found out they were going to pay me for the trial.  It must have been hard to find qualified lab rats, because there are only 11 of us in the trial.
I just gave myself the second injection yesterday, and today seems better than the day after last week's injection, side effects from the other meds seem to be nil.

[countrygirlcansurvive]

Hi Sunnyside!
  I just had a Transjugular Biopsy (I know it sounds scary) but it was a Breeze I didnt feel a thing..I was in a Twilight Sedation where the only time I knew what was going on was when they ask me to hold my breathe,that was to guide the instrument down to my liver from the Jugular Vein..but thats all I remember from the procedure..Now on the other hand the other method my son had in 1999 was uncomfortable for a couple of days.Hope all goes well for you!
      Country~

[hepcat4444]

I'm not treating because I failed triple tx.  There are no trials open to me or anyone who has failed triple.

[Sunnyside863]

Thank you Advocate:),  everyone on here is extremely knowledgeable and I appreciate all of the great responses.  

Thanks again to everyone and God Bless You!!!!!

[Advocate1955]

Hi Sunnyside,

SOC stands for Standard of Care.  It is a term that is used for the first line of treatment for Hep C.  In the past, SOC for Genotype 1's was weekly injections of Interferon, and daily pills (Ribavirin).  Someone on the forum can correct me, but I believe that the triple therapies (weekly injections of Interferon plus daily Ribavirin pills plus either daily Incivek pills or Victrellis pills) are now considered to be the SOC for Genotype 1's.  My husband did SOC (weekly Interferon/daily Ribavirin) in 2007, did another treatment called Consensus Interferon (daily Infergen injections/daily Ribavirin) in 2010, and then did triple tx with Incivek in 2011-2012.  The field of Hep C research and development of treatments is zooming at light speed right now, so some of the terminologies will change with it.  In my husband's case, we try to generally keep up with the new research, the new trials, trial results, and new treatments being developed, because he is considered to be "difficult to treat", since he has failed 3 treatments.

You asked why someone might not qualify for a trial. Trials have certain eligibility requirements (age requirements, health requirements, genotype requirements, previously treated vs not treated requirements, co-infection with other viruses, and sometimes requirements based on results of any previous treatments).  That is based on the purpose of the trial.  If you look on the clinical trials website (www.clinicaltrials.gov) you can look at various trials to get an idea of the range of requirements of different trials.    My husband hasn't qualified for any trials in our area since he was diagnosed with Hep C in 2007.  It's very important to understand all aspects of any trial that a person may be considering.  In my husband's case, he would want to know the purpose of the trial, the potential benefits for him, and of course the potential risks for him.  If the trial didn't work for him, would he receive treatment afterward, would he be able to try new treatments on the horizon?  These are things we would consider before participating in a trial, but we are hoping that one will come up soon in our area.

You asked about liver biopsies.  It is a relatively simple, relatively risk free/pain free procedure.  It takes about 4-6 hours total (check in, prep, 20 min. procedure, about 4 hrs of monitoring afterward) and a driver to and from because it's a sedated procedure.  Most people report that it's a breeze.  It is the best way to get critical information about the state of your liver, if you have damage, and if so, how much damage.  This information guides decisions about treatment.  My husband will not need to have any further biopsies, because we already know he has Cirrhosis.

Hope this helps.

Advocate1955

[hangetsu]

I was diagnosed with Hep C genotype 3a in '96 and decided against treatments. The doctor advised me that they could possibly cause suicidal tendencies and would take 6 months to complete. I lived alone at the time and didn't think I could handle it by myself. I didn't want to take something that was going to make me sick for months on end or possibly want to do away with myself.

The last bloodwork I had was several years ago and can't remember how it read, but I don't think my viral load was too high at the time. I never have had a biopsy but my liver probably wasn't in the best of shape to begin with due to a long history of drinking and of having had Hepatitis B & D in the 80's. I cleared B & D without taking treatments and thought maybe my body could clear C on it's own too but that doesn't seem to be the case.

I stopped drinking and try to eat healthy and take care of myself now. I'm not exhibiting any of the symptoms outlined here, am not jaundiced, and live a pretty normal life.

And although I do expect it to catch up to me I'm not worried about it. I've led a charmed life and if that's what's in store for me am alright with that.

I wouldn't advise anybody else to not take treatments just because I didn't though.

[orphanedhawk]

A biopsy is simple but you should allow yourself a full day off for the procedure.

My friends found out because they got tested. Two of them did so because they knew so many people who have hep C. The other simply told me in an email and I didn't ask. I never ask, to me it doesn't matter how you found out anymore than it matters how you got it. You go forward from where you are now.That's my POV.

I think it's reasonable to say the orals will be available within 3-5 years. Some are saying as early as 2014 but I wouldn't hold my breath.

[Sunnyside863]

What all is involved in a bx?  Is this a simple procedure that I can go to the Drs and have done by myself?  How long does it take?  Hope I could just have it done and not miss any work.

[BoceprevirGal]

  I have known that I have Hep C, since I was 30 yrs old (20 yrs ago) but there wasn't a good cure for it, way back when.
   I just went ahead, and lived a normal and healthy life, for the next 20 yrs, going ahead and having 3 more children, in my 30's.
   But last May, two new drugs came out, (Victrelis or Incivek, both in the "protease Inhibitor" category) that would up my anti for cure (I'm genotype 1a, the most difficult to treat) from 50% to 70%.
   Coincidentally, my lab work took a turn for the worse, and at the same time, i began to have a bunch of symptoms:  weird spider veins on my left calf, muscle cramps, heat intolerance, a rash, the list went on and on.
   I had always been such a healthy person,so I became alarmed, and went and had my first biopsy, which had me at a late Stage 2. Since my lab work had many warning signs, such as low platelets, my Doctor and I chose to treat me now.
   I feel much better now, by the way: good luck, and keep up with your
lab work.  Keep an eye on anything that is out of the normal range, and if you have any questions concerning the lab work, just let us know, on here, and we can help~

[Sunnyside863]

What would disqualifiy you from a trial?  Im sorry you were denied.  Personal health decisions esp like this are never easy.  Most on here say you can still work during tx.  Have you talked to your Dr about making this decision and what does he say?  What type of Dr do you see?  

[Sunnyside863]

What is soc?  And ur Dr wants you to wait since there may be other options in a year or two?  Thats great!!! Are you seeing a GI or a Hepatologist?  Does it matter what type of Dr monitors my condition?

[Sunnyside863]

Thanks for the response:).  I appreciate this information.  I will have to wait and see what the PCR says (hopefully cleared).  Then only would a biopsy be needed and depending on a drs advice, I might be able to get it.  At least I will be informed and can make suggestions.  

[summer7799]

I have gone back and forth about doing treatment for over a year. I applied for a few trials and got denied for all of them. Im considering starting treatment in the fall. I feel I have symptoms from the hep c. And they are not getting better. I'm young and don't want symptoms to grow worse. I just want this disease out of my body. But I'm afraid of the effects of the treatment drugs. Especially any long term effects once treatment is over. It's a hard choice to make. I'd like to wait for all oral drugs, but do I know how long that will be? No. Do I want my liver to get worse and my symptoms to get worse? No.

[Susan_1a_CC]

After relapsing from a trial with (the friendly) lambda ifn I am not treating now because doctor says to wait for all orals.  First bx - G0, S2 and most recent bx 2 yrs ago G1, S0.  I enjoy good health and energy and don't want to risk that with current txs.  Were my numbers different I might choose differently.  BTW, I am in my 50's and have what my medical team has called "an exuberant viral load."

Best of luck to you in this decision.  

[peggy156]

Not treating because my viral load was not high enough to qualify for a trial. Genotype 4 doesn't have too many options. My Dr says I should consider just taking the soc for 24 wks. He thinks it may be wiser than to wait another year or two. Good luck

[Sunnyside863]

These are great examples, thank you Hawk.  I know we can only take one day at a time, and thats where I am at right now.  Had insurance for 2 yrs thru my last job and never used it other than routine.  Guess thats good, Im basically healthy or at least I feel that way.  Wish I wouldve tried to donate plasma at a time when I had health ins.  Sheessh!  
How old are your friends?  Were they accidentally diagnosed w antibodies like I was?   I would imagine they are working closely w their Drs to make the best informed decisions for tx.  Orals should be out in 3-5 yrs?