Life span with Hep-C (no therapy)

I am HCV positive.
I am really scared reading the side effects caused by Pegasus and Ribavirin written by lot of patients who passed through extremely horrible experiences with a lot of permanent and severe health damages and disorders. Some of them are not even cured of HCV but they just got more health and psychological troubles.  

I am 43 years old and I am seriously considering the option to live with disease since the medicines may brutally disorder me with no guarantee of cure. What is going to happen if I don’t take those medicines? I mean, for how long I will be able to live normally. What would be my possible life span from now on?
My doctor suggested the well-known therapy.Doctor estimated that my illness certainly have been existed for at least 15 years or more, although it was detected just a year and half ago.No symptoms occurred.  The test I made three months ago shown my viral load was 6 million copies, and five months ago it was 3 million. Is this multiplication too fast to be worrying???  My genotype is G1. Liver shows the mild-second stage of fibrosis.

The other question is:
Is it possible to get rid of HCV spontaneously by natural immunity? Have any case of self-recovering ever been recorded?

[pcds]

No one can tell you what your future may be with  this virus.  I have the virus for 35-40 years and have little liver damage now.  But I know it's a good idea to get rid of it.  Everyone progresses differently.   You said you have stage 2 of fibrosis.  You probably should wait for new medications coming out that will have a shorter treatment time.  Or if you wait 5-6 years even better medications are in the works.  Don't worry about different viral load amounts.  It really only counts when in treatment.  Don't drink alcohol when you have the virus or when you are being treated.  

[knottek]

ive been on treatment for almost 12 months now, its horrible, i tested negative 5 weeks after starting treatment, im almost done with treatment, yes it really messes with u. Makes me depressed and very short tempered but i cant deal with that for the time being, not to mention all of the rashes and pain the medicine has put me throught. right now my body is covered in a riba rash, i dont even like going around people right now, good thing its cold, GET ON TREATMENT IT WILL SAVE UR LIFE, THE NATURAL STUFF IVE READ ONLINE BUT U NEVER KNOW IF IT WILL WORK OR HOW LONG YOULL STAY NEGATIVE FOR, ITS HELL DOING TREATMENT BUT SOMETHING YOU CAN DOM AMEN AND GOOD LUCK, I ALMOST DIDNT WANNA GET ON TREATMENT AND IM ONLY IN MY YOUNG 20S

[knottek]

OH AND BY THE WAY I HAVE DRANK ALCOHOL ON TREATMENT AND BEFORE I KNEW I HAD IT, I KNOW MY LIVER HAS A DISEASE BUT THE WAY I LOOK AT IT IS IM STILL GONNA HAVE A FEW BEERS EVERY ONCE IN A WHILE AND ENJOY MY LIFE WHILE I HAVE IT AND NO DOCTOR CAN CHANGE THAT GOD BLESS

[willbb]

You have posted your question on a holiday weekend so there are not a lot of folks around at the present time to respond . However in the next few days you will get more feedback.

In the meantime, let me address what I can for you. Everyone who is considering treating their HCV is nervous,when reading about all that treatment entails. Their are many side effects for some and can be quite severe, for many though the side effects are few and very mild. Every one reacts differently. Personally I am 7wks.into tx. and the side effects are very min able.

Yes,it is true some people don"t achieve viral clearance,for your particular geno type(1) the odds are approx. 46% of people will achieve this. However their are also other factors involved in that, age  ,degree of damage being 2 important factors. At stage 2 you have relatively minimal damage which gives you options even further.

Currently there is much going on with the development of new drugs that may be on the market as soon as next yr. with shorter treatment times and better odds of results. So that is a viable option for you at this time,to wait and  treat at that time.

Your viral load is really not an important factor when considering to treat or not and the fact that it is multiplying is also of little concern at this time. those numbers can move up and down all the time.

your last question about being able to clear on your own spontaneously..After beiifected for 15 yrs.or more the chances of that happening are basically non existent. Their have been very very rare instances however not enough to consider viable in your case.

I hope that helps for now and  good luck!

WILL

[James10500]

As  Paleo said no one can tell you how fast it will progress.  I've had it either 40 years when a had a couple of blood transfusions or who knows, there is no carbon dating.  There must be different rating systems as I thought stage two was "bridging" stage three was fibrosis and stage four cirrhosis. But I'm stage 3 fibrosis point is everyone is different.  The disease doesn't follow a script.  

Treatment isn't fun but I know people who have done 72 weeks and continued to work the entire time.  There are millions of people that have achieved SVR and gone on to lead normal lives. Remember again it's different for everyone. End stage liver disease sounds exponentially worse than treatment.

Good luck

Oh and drinking with liver disease is like putting out a fire with gasoline.

[Trinity4]

knottek,

It's almost as if you are making a statement of defiance.  Hey look at me, I've got hepc, I'm on treatment and I drink.  So what, whoopdedoo, nobody really cares if you drink or not.  It's your decision, your liver and your life.  Most of us are knowledgeable enough to know that world renowned hepatologists and most studies highly discourage drinking alcohol while undergoing antiviral therapy and especially if you have advanced liver disease.  That is not something I would recommend to other forum members but we are not naive here and certainly know other people have consumed alcohol while treating.  I just don't see the point in you making it a point.


Paleo,

There are better drugs coming out sometime next year which will shorten the exposure to interferon and increase the odds of a sustained virological response from 45% to 75%.  Those are pretty good odds.  No one knows how the treatment drugs will effect them until they try.  If you want to live with the disease that's your decision.  At stage 2 you may go for the rest of your life with no problems or you may not.  No one can predict what the long term effects of hepc will be on the liver just like they can't predict what the long term effects of treatment will do.  Keep in mind, after the age of 50 fibrosis progression tends to speed up.  There is a great deal of documentation out there to support that.

Trinity

[willbb]

"ive been on treatment for almost 12 months now, its horrible "

"OH AND BY THE WAY I HAVE DRANK ALCOHOL ON TREATMENT "


Small wonder!!

[Trinity4]

Maybe the beer is having an adverse reaction with ribarivin hence the raging riba rash.

http://www.medhelp.org/posts/Hepatitis-C/riba-rash-or-scabes/show/1403050

[eureka254]

Keep in mind that people tend to seek out forums to write about the troubles they have, but those who are doing well and not having horrible experiences oftentimes don’t visit forums such as these.  It’s important to remember that what you’re reading from is expression from a minority.  The majority of people who do treatment do not have extremely horrible experiences.

Being young and at Stage 2 means that you have some odds in your favor in terms of treatment success, but being genotype 1 does mean that your chance of cure with the current treatments are estimated to be about 50%.  However, it’s important to remember that as liver damage progresses, the likelihood of cure using treatment diminishes.  Those who have minimal damage have better chances of success.  Also, as Trinity mentioned above, it is expected that additional medications available to be added next year may increase your chances of cure significantly.  

Whether you choose to live with the disease or to do treatment, it’s essential not to ignore the presence of active hcv, as the timeline for hcv liver damage is unpredictable.  You may stay at stage 2 for decades but the possibility of quick progression to stage 4 is also possible.  No one can say how quickly this happens for each person, but I will tell you from the standpoint of someone whose spouse is Stage 4 and fighting liver cancer (and got to that point without any symptoms):  if you have the opportunity to get rid of this disease sooner rather than later, take the opportunity when a good one presents itself.  In my opinion, fighting end-stage liver disease and HCC and those psychological troubles is far less preferable to taking whatever risk of ‘health damages and disorders’ might occur from treatment.   Hope that helps, and best wishes. ~eureka

P.S.  You’ve seen terrible car accidents that have disabled people, but that doesn’t keep you from getting behind the wheel, does it?  Hopefully what it DOES mean that you learn the rules of the road and follow the road signs ahead…

[paleo]

Thank you very much everybody , really
If anybody else  wants to add  farther info to  the thread from his personal experience I would appreciate it too.
May somebody tell me the name of this new coming medicine?
Best regards

[copyman]

The new drugs coming out next year is called Telaprevir and probably not long after the same type of drug called Boceprevir. Either of these new drugs will be added to the present combo drugs. Telaprevir will offer a shorter course of therapy (24 weeks) which helps cut down on long term side effects.
I can speak personally for Telaprevir. I did a shorter course of therapy and now still cured 1.5 yrs later.
Side effects were minimal for me.

Like one of the other posters wrote the internet horror stories you read about treatment are misleading. There are many more that have no need to post on internet because they don't have any problems with treatment.

When I first found out that I had HCV I felt the same way you do, that I will just live with the disease. Then when I decided to educate myself about the disease I realized that dying from liver disease is far worse then any side effects from the medicine! Liver disease is probably the worse way to die, not only for the person but the family as well.

If I was you I would treat with the new drugs coming out next year. Even if you feel good now this disease has a way of sneaking up on you. You could be a stage 4 in a few years or 30. It is different for everyone.
Add to that the extra hepatic manifestations that occur with HCV and can make your life miserable.

Best of luck whatever you decide.

[Andiamo1]

The rate of fibrosis progression is not linear. Just because it took 15 years for you to get to stage 2, does not mean it will take another 15 to get to stage 4.  The older you get, the faster the progression.

You have to make your own decision, but make sure you understand the probabilities of what might happen depending on which choice you make.  I agree with Trinity -- there will be drugs on the market next year that will increase your odds of success and shorten the treatment time.

Best of luck to you.

[WriteItDown]

I agree with Andiamo1. Progression rate is impossible to predict.

As for treatment, it's also impossible to say how you will react to it.  My husband had only mild to moderate side effects, worked throughout, cleared within 4 weeks, and only had to do 24 weeks of tx altogether (he was on a clinical trial of a new PI, like Telaprevir but newer.)  He felt pretty much back to normal after 2-3 months, and is now SVR.  I do think that if you treat, you should try to do one of the newer drugs that gives you the possibility of a 24 week tx.  Much easier to do 24 weeks than 48.

Everyone's different. My advice is to do a lot of research and think hard about how you would feel about all the possible options and outcomes.  It's a very hard decision to make and I wish you the best of luck whatever you decide.

[jumamosi]

Please could you tell me what you mean by 'extra hepatic manifestations'?

[hepman]

i have some friends that have it there ten years older then me and probably had it ? ten years be for me there stage 2 im stage 4+ every one is deferrant eat healthy stay active as long as you can the stronger the body the better chance you have to them finding a cure it will happen some day?