why choose treatment?

[Alongtimenow]

 I was happy to find these boards . I have had hep c since 1985 diagnosed mid 90's.Took years of tests and doctors. finally to find one who knew first visit what was up. I chose no treatment . Have worked hard all these years . work, college, business ,house,raising a son alone, ( totally absent father just like many nowadays thats a whole nother story)
Genotype1 viral load at last count about 3-4 years ago was right under 8,000,000.
  Just curious about WHY you choose to treat or not .
 Any truly I feel young and refreshed after treatment stopped stories???

[jberlin]

“Why seek treatment?”  The big reason is that the Hep C can make your life miserable by destroying your liver, and ultimately kill you.  Around 15,000 people a year in the USA die from liver complications caused by Hep C, more than the number that die from HIV. 

So, the 1st question is what kind of shape is your liver in?  Have you had a biopsy?  What does your liver panel show from blood tests?  If your liver is deteriorating you should go get treatment immediately as the cure rate is really high now, as opposed to 5 years’ ago.  Certainly seek a good liver specialist that can advise you.  Do you know what genotype?  From the 80’s probably geno 1, and there is great treatment options available right now that will cure you in 2014.

As you can see in my bio, I was treated twice, the 2nd time worked, and do I feel better?  Hell yeah I do, but mostly because I got rid of the ax over my head!

Good luck and let us know!
-jack

[Alongtimenow]

thanks for replying .yes genotype 1  . my infectious disease guy , who has since retired , told me not to bother with the biopsy when I had asked. there is going to be damage he said. my enzymes have not been elevated since the beginning. The viral load is high tho .   I have been sickly since child hood so I don't know any better I guess. I have never let feeling crappy get in the way.     I guess my life experiment will too see if you can live along life treatment free.  So far almost 30 years .  But I do like to hear what others have chosen ... 

[jberlin]

As my hepatologist at Duke Med Center told me years' ago, liver disease progresses slowly and he was not worried about me in years, but he was worried about me in decades.  That virus is having an effect, however slowly, so it may be fine to not be treated, but you should make that call under advice of a good liver specialist, not because you are stubborn.  I contracted Hep C in 1976 and my liver was showing scarring, so will yours...Perhaps you wait for the possible 12 week, interferon free treatments we are seeing hinted, but you should make an informed decision, not a guess.  In the meantime, avoid alcohol.  Best wishes, jack

[Alongtimenow]

I have not drank alcohol in years many years .I hate drinking, and drinkers.  I am not being stubborn . I have done tons of research and have seen many doctors.   I am not asking for your judgement . you are not me . I was asking for opinions based on you or others, not me. We all have our own path to follow.     

[jberlin]

sorry, did not mean to offend... or judge.. just have seen both sides of this disease.  I certainly wish the best for you and hope you remain healthy without treatment.  Good luck, jack

[Alongtimenow]

thanks .   Now that you are cured ... What is the chance of reinfection ?? none .? Is it over when it is over? what was your viral load when you started treatment ?
  to be honest I guess I am getting sicker . I was such a work a holic and now egads...  So maybe I would go thru treatment if  I would actually feel better . but I need real life testimonials and not just doctor BS. I am very skeptical of medicine . I need reality, not just talk .  I need to know how it feels.. can you still work ?raise your kid ?clean your house etc, during treatment .

[lporterrn]

Hi -
I am jumping in to this discussion a bit late, but was thinking about Alongtimenow's questions. I don't know if you know that hep C treatment has changed a great deal in the past 2 months and we expect that by the end of 2014 it will get even better. Here is what we expect by the end of 2014 - most hep c patients will take a single pill  for 12 weeks (or less, depending on what the data shows). The treatment has a better than 90% chance of working permanently and has only a few, tolerable side effects. I was in this clinical trial - it was my 3rd treatment and it was far easier and shorter than interferon-based ones. Why did I pursue treatment? For many reasons, but here are a few - Because more people are dying from hep C than HIV in the U.S. Because hep C lowers life expectancy by an average of 20 years. Because hep C increases mortality risk from other diseases, such as cardiac, cancer, stroke. Because hep C alters the brain, messes with cognition , memory, and function. I am a nurse who has worked in this field since 1998, and if you told me then that we could cure this virus so easily, I don't know if I would have believed it. Much has changed. Hope this helps.

[Alongtimenow]

Will it matter you viral load or years with the disease? I read so much, hard to sort thru it all . I was under the impression that after 15 years treatment is useless. is this no longer the case ? Its been almost 30 for me and at last count a few years ago my viral load was right under 8,000,000.
I already have RA and fibromyalgia.  which I understand to be secondary problems of Hep c.my son has type 1 diabetes ( also connected I read) I have seen the heart guy ,all well there. my stomach is sick all the time and the fatigue ick!!!!

[jberlin]

Let me strongly suggest you find a top-notch hepatologist.  Not sure where you heard 'don't treat after 15 years', I was 1st treated after 28 years, then retreated and cured at the 36 year mark...  Heck, they couldn't treat at all until the 90's, and success has gone from 25%, to 40%, to now over 80%... while treatment times have been cut from 72 weeks, to 48 weeks, to 24 weeks, and now possibly 12 weeks... The liver is the only organ that will repair, so if you rid yourself of this nasty virus, and 8 mil base load is pretty high, you will improve your life. 

To your earlier questions.  Cured means cured.  My viral load got up to 12 mil, but hung around 8 mil after my first treatment. Reinfection would mean a new infection coming from an outside source, a needle usually. You will feel better.  Your body is spending a lot fighting this disease, and as your liver deteriorates, so will your health.  I did not miss but a couple of days of work in my 72 weeks of treatment, though there were many, many days where I felt like crap.  Hydration and ibuprofen are your friends.  How does it feel?  It is still a tough road, but now much better than it was. You should see an expert and hopefully you can go on the Sovaldi (Sofosbuvir) treatment, and if not then the Incivek triple therapy.  Both have better than 80% cure rate, but Sovaldi might allow a 12 week treatment, versus 24 with Incivek.

Happy to answer more questions and glad you are considering your options.  -jack

[Alongtimenow]

problem is top notch . where are they?? I don't even have a regular doctor anymore . . I do have medicaid .. But certainly no cash to pay for anything.   I am scared to be sick from the medicine . at least the way I feel now I understand .  When you are not so rich and have a son to care for   being sick and missing potential days of work will not help . who will pay our bills ?  clean my house , school my home schooled son . I have so many factors to consider . I would love to hear from someone in my position.   no one to help . Dad is old and sick, mom is in FLA ,best friend in nursing home due to Necrotizing fascitis.
Having to take care day to day has always stopped me from treatment.
Besides my work a holic nature....
The ironic part is I am so fatigued now the search seems a little unbearable..

[jberlin]

It can be done. I befriended and advised a young lady, ex IV drug user, single mom to a preemie, had to work to survive, had to quit drugs to survive and had to beat Hep C to survive, and she did all three last year on the same treatment I went through, Incivek triple therapy for 24 weeks.  I was so proud of her, and made me feel guilty for ever complaining while being treated! She toughed it out, and got through it, is cured, and so can you!

Not sure where you live, but I am in Tampa Florida, and we have great liver docs at LifeLink, part of Tampa General Hospital.  Most major teaching centers will have a liver treatment center, like Duke in NC.  But I have just named the only two I have been to, but a quick internet search would find you some options.  Or post what state you live in, and maybe people here will have suggestions. Hope this helps, jack

[lporterrn]

Hi,
There are many people in your situation - I don't know if they are on this forum, but the facebook and Yahoo forums have people who deal with multiple hep C complications. One of the bloggers on this site, Karen Hoyt http://www.ihelpc.com/ was cured despite end-stage liver disease. Unfortunately, like many, hep C treatment can't cure her cirrhosis, but at least the treatment stopped the progression. I have never heard that it needs to be treated early or not at all, albeit earlier is better. Our immune system declines with age, so hep C progresses faster as we age. A friend in the study I was in had hep C for 43 years and now she is cured. A woman in one of the forums I am in is 78 y/o and the treatment is working for her, although final results are not in yet. At this point, it sounds like you need a doctor, top-notch or otherwise. Start with primary care. Ask around, ask friends, etc. You are assuming you will miss work because of treatment - the new treatments are different - I didn't miss a single day of work or my regular work-out because of the new treatment. I even went dog-sledding. Perhaps just collect info first - no need to make decisions until you have the facts.

[spider123]

Alongtimenow;

              Hep-C can hide for Three to Four Decades, (Thirty  To Fourty Years),
without any Symptoms !   This is what I, was told by my Liver Doctor !
I had an Abcessed Tooth and went to a Dentist, who would not treat me till,
I went to my Regular Doctor because she discovered HIgh Blood Pressure !
Doctor did a Blood Work-up and a CBC and Discovered High Liver Enzymes !
We Discussed it and then she ordered a Liver Biopsy to Confirm Hep-C !

I, treated for 48-Weeks 2008-2009, on Peg-Interfuron and Ribavirin and did Obtain SVR =
Sustained Virological Response- Below 50 = Non-Detectable on August 2009 !
Today, they are working on Better Drugs, and, if, I, were you, I, would talk to a Good Liver Specialist, and get yourself, a Good PCP,  and Discuss your Options with your Team of Hep-C Doctors and if you and Decide to Treat, do it for your son, so you can be around at least, a little longer for him !  There are support Groups out there and online like this one to help you cope !  You, also can change your "Diet" to Help your Liver to Re-Generate itself !    And, there is also the "Holistic Approach"
to Treatment as well, so, you do have choices ?   

Hugs,

Keep On Keeping On,

spider123

[jberlin]

Spider, things have changed a lot since 2009.  The virus doesn't hide, it will always show up in a blood test, but liver disease can be very slow to progress.  I contracted in 1976.  I too did 48 weeks of dual therapy, in 2004, became SVR (<10 then, now lab tests are <7), then relapsed, as 40% of us geno 1 did.  In 2012 I did 24 weeks triple therapy, and I am now cured - and yes they do say cured now.  Were you undetectable at 6 months post treatment?  I read your posts and you never said if you were cured or relapsed.  I hope the former.   Treatments now are 12 weeks and over 80% effective, so much more manageable, and perhaps soon no interferon! 

jack

[spider123]

jberlin;

      According to my Liver Doctor the Hep-C Virus can Hide in Other
  Organs !   I did Achieve SVR in August of 2009 and have maintained
 that Leval of 50 or Below =  Undetctable But, I read a letter online about How Most Doctors Stop - Short of Telling You that you are Cured like I said in my Post only because they Do Not Want to Create False Hope ?   We will allways have the Markers for Hep-C, this is why Most Insurers Do not Want to Cover us !
Plus...I Believe that Many of Us are Guineay Pigs for the CDC !

I, have also Heard of People who have treated and are 10 Years Post-Treatment,
that have Relasped !  I am Now 5-Years Post Treatment, and Still Suffer 24/7 and
All my Doctors Say it was the "Nasty Meds" I, Took !   Peg-Interfuron Effects
Brain Stem Cells, that is Why the CDC wants a New Drug to Use !

Just My OPinion, I am not a Doctor,
But, I read everything I can on the Subject !
Check out this Website --->   Lloydwright.com 

spider123

[jberlin]

Spider,

Again, the hepatitis C virus will not hide, and yes once infected we will have antibodies forever, but my life insurance company did accept a letter from my doctor saying that I had successfully cleared the virus.

I did consult with top hepatologists, and there are no confirmed cases of Hep C ever relapsing on anyone that was still UD after six months post treatment.  You can re-expose yourself, but not relapse after the incubation period of 3-6 months.

One doctor I talked to was Dr. Muir of Duke Medical: 
“This has made me change the way I’m talking with patients. These regimens are essentially going to cure everybody,” said Muir, who has conducted related research but did not participate in these studies. “I had a patient in my office this morning who said, ‘If I get cured,’ and I said to him, ‘When you get cured,’” Muir added.  http://news.health.com/2014/01/15/most-with-hepatitis-c-may-soon-find-hope-in-new-treatments/ 

I did 72 injections of peg-inteferon, I know how much fun it is - but it did cure you & me (with help from Incivek in my case)! 

People on this site need to know they can get cured, and how much more tolerable the treatments have become.  -jack

[iana5252]

There has been very little news on relapse cases being associated with the original infection returning. Here is once piece we published in November on the topic.

Relapse Long After Hep C Cure May Be a Dormant Infection
http://www.hepmag.com/articles/viral_relapse_2501_24808.shtml

We continue to monitor this topic closely as obviously it is of incredible importance to the hepatitis C community.

[jberlin]

Doctors continue to refine this as time goes on.  The current thinking is that you have less than a 2% chance of relapsing is you were UD 3-6 months post treatment, and now some doctors are questioning even that, thinking it was re-exposure or some other cause than relapse.  Ten years' ago I was told the best you could do was SVR, now for at least 98% of the people treated that were UD at 3-6 months post treatment, the word is cure.  The other thing to note is the improvement in what UD means, as blood tests now require <7, where it was <10 a few years' ago, and so on....  This is a good article from U of Chicago Medical: "Dr. Donald Jensen, University of Chicago Medicine: “This is a curable disease.”"

http://wgntv.com/2013/03/07/hepatitis-c-cure/

[jberlin]

I found this in a discussion group, and it is very much to the point, and this was 4 years' ago:

Melissa Palmer, MD:
The chance of relapse - i.e. a return of the HCV virus, after 6 months of discontinuation of therapy and the HCVRNA is still undetectable ( < 5-10 IU/dL) is so rare that the medical community is now comfortable telling patients that they are cured. This means that you are not contagious to others by any means
It is important to remember two things.
1. HCVAb - hepatitis C antibody will remain positive - this does not mean that you are infectious to others, but it does mean that you will not be able to donate blood or organs in typical situations
2. If you have cirrhosis, you are still at risk for liver cancer and liver failure.

[spider123]

   iana5252;

          Thanks for the Heads-Up on that Article you Posted.....

    Very Interesting and Informative !   I, now have Problems with my Intestinal

    System, of which my Liver Doctor  says  That I can,  Thank Peg-Interfuron,

    for, ....and I, am Glad that he is Honest with me !!!

    Don't ....Get me  Wrong...I am Thankfull, that I got SVR...but I still am

    Always thinking about a possible Relapse ?    I, also have Developed,

    " Leukopania Anemia " = Low white and Red Blood Cells For the last Two (2) years,

     and was Referred to a "Cancer "   Docter  who says I, have  what she

     calls "  Lazy Bone Marrow " and Not even the Mayo Clinic Knows what that is ?

     She has now ordered an  " Ultra-Sound" to check my Liver and  "Spleen"

     And...also Blood work to check Ferritin and Iron Levels ?

     Keep On Keeping On,

     spider123

   

   

[rainbowray]

Wondering where alongtimenow is? This is a old thread.

If your still on the forum, It took me 43 years on hepc to seriously seek treatment.
I too did not want the old treatment, but the new is tolerable. You have other complications from the Hepc such as RA probably from cryoglobulinemia which I was told starts from cryocrit from the liver, which is caused by hepc. Not getting a fibroscan or fibrosure to find out the condition of the liver is not advised in my opinion. I had 3 million viral load most of 43 years, had mostly fatigue as my main symptom, later my feet became numb from the cryoglobulinemia. So I got serious to get on the new treatment. Hepc is a no joke disease, not getting treatment asap is ill advised in my opinion. Your symptoms are advanced from this disease.
I discovered after the tests I was Stage 3 Fibrosys-Bridging which is enough reason to get treated immediately, so permanent damage to the liver may not occur.
Give the forum a status.