Why, why, why??

[beeblessed]

Just something that's been on my mind and my family wants to know too:  
1.  Why treat if all tests are good and I have no symptoms and am not in pain?  
2.  Why treat at all when so much of the population walks around with Hepatitis and doesn't even know it?  
3.  For those of you who have had it long term, did something happen overnight to make you decide to treat?  A pain or some other symptom.  

I will be treating soon but in the midst of it, if I am having bad days, I want to be able to have a valid reason for doing what I am doing.  It's akin to skydiving in a way.  Someone once asked, why would you jump out of a perfectly good plane on purpose??  To some degree, the same could be asked of Hep C treatment.  I hope your answers help calm some fears of some other newbies here too.  Many thanks everyone.  I appreciate your opinions, feedback and experiences.

[halbev]

DO IT TAKE THE MEDS !!!

I am 56 Male stage 3 cirrhosis have had this Virus for 30+ years and still have good health, but did have some symptoms until I started treatment. Now most symptoms are gone.
Ask yourself do I have a upset stomach most mornings like a FLU, that will be your first clue bad digestion.
I was treated with Interferon,Ribavirin for 84 weeks or 20 months neaver could clear it on all tests,could get viral load down to nothing but virus was still there.  Currently on Incivek, Interferon, Ribavirin  Triple therapy first time I have achieved Neg SVR  at week 4 now in week 8 and going for the Gold! just be tough.
I do not know if Incivek is a option for you but it is a wounder drug for people who have been treated had positive SVR only to relapse.
DO IT BE STRONG and I am told by Incivek that females respond better then males to the treatment so if you have no problem yet why wait to get sick?

[peaches45]

Wow, what a great thread!! Beeblessed, you really started a thread that is helping a lot of people. I myself for one, I have plans to start treatment in Oct and I have been kind of worried about it and not sure. I am a stage 1, grade 2, therefore, was not sure about doing treatment now since mine is minimual. But, I after reading everyones post I think I have made the right decision to treat in Oct. I am 46 years old and I dont want to wait until I get older to do it and who knows if anything else could come up. I am also tired of this cloud hanging over my head, my youngest daughter will be graduating this year and leaving home and I will be alone. I want to do this treatment now so I can start my new life..I have been back n forth here asking questions and everyone is so very helpful. It is good to know that I have this site to go to when I start treatment..Thank you all for support.GOOD LUCK BEEBLESSED!!!!!
Becki

[suezeeque]

I know this thread is old and no longer relevant to beeblessed (I hope you are feeling blessed!).

But my reasons to treat now rather than wait are similar to many posted above.  I recall reading here, on another thread, someone describe feeling like they are "poison".  I feel this way.  I don't think my marriage will survive if I don't treat now.  And that's not because I think my husband will leave me!  He's a wonderful man and very, very supportive.  I think I may sabotage, feeling this way about myself.

I have a very good job now and a fantastically understanding employer.  However, I feel like it's time to move on after 10 years.  I have recently completed some professional association membership stuff and I'm able to find a better paying job or explore the possibility of self-employment.  

I have great insurance -right now-.  Will I have that great insurance if I change jobs?  Will my new employer be as understanding as my current employer about time off, etc?  Too many unknowns there.

When I first asked about treatment, shortly after being diagnosed, the dr asked why I would want to?  I have no liver damage.  There's no need to treat as long as I remain healthy.

My response was - why would I wait until I'm NOT healthy?  That just didn't make any sense to me.

I've had type 1 diabetes for probably almost as long as hep c.  Type 1 diabetes is an auto immune disease.  While I don't think there is any -proof- that hep c causes type 1 diabetes, I believe that it did or me.

I started having a bunch of other auto immune stuff happen in the past 2 years.  My esophagus started spasming so badly that I was only able to eat once every two days.  I lost 40 lbs in a couple of months.  Swollen lymph nodes, rashes, etc.

The time is right for me, right now.  I think each person has to do their own 'inventory' and decide based on their own personal circumstances when the time is right for them...

[curiouslady1]

I forgot to mention in my post above that I have insulin resistance/diabetes as well.  There are a lot of reasons why my fibrosis should have progressed further than it has but it hasn't done so.  If there is any way to bring these all oral treatments to market sooner; I hope to G.. we find it.  The suffering from other treatments is just too great to ignore.

[suezeeque]

I am 46 and was diagnosed last year.  I have likely been infected for over 20 years.  So I, like many newly diagnosed, am reaching that "20 to 30 years" mark.

Will I be one of the 5 to 20%?  I don't know.  Can doctors tell me if I will be?  Nope, see above.  Will I then go on to be one of the 5% who die of liver failure?  Who knows?

So I have decided to treat now.  I'm now in week 5 and feeling like c r a p.  

If I achieve SVR, I will give "big pharma" a big, fat, wet kiss.  :D

[curiouslady1]

It is very hard to sit on the knowledge that one has HCV without trying to take some sort of action.  I still maintain that anxiety is the worse enemy that most HCV patients have.  Now there are some very good reasons to wait.  They are called all oral drugs.  If a person's fibrosis is 0 or 1 and their life situation is such that current treatments would jeopardize their career, he/she would do better to wait, try to maintain a healthy lifestyle and keep an eye on it through periodic exams.  Just because statistics say . . . doesn't it mean it will be you.  Such data can provoke anxiety big time.  Statistics have little relevance in individual cases.  Take it from a 1a with FLD whose fibrosis score has not progressed past 1 in 40 years.  I found my all oral trial with some well applauded drugs and have had no side effects; in fact, a feeling of well being throughout my treatment thus far and some wonderful restful sleep while the VL is plummeting like a rock.  There are few all oral trials out there and not all will qualify but if you do it is a better bet than going through the hell of ifn based tx. in my opinion.   I shudder to think of what might have happened to my career if I had jumped into treatment precipitously.  

[suezeeque]

rambeon40 said:  "I had a fairly well-known expert on Hep C tell me that once diagnosed with cirrhosis, you have a 5% chance of liver fail;ure each year." and "Only 5 to 20 percent of people with chronic infection develop cirrhosis in about 20 to 30 years, and doctors cannot predict which patients those will be."

^^^  THIS.

[rambleon40]

it's very difficult to transmit Hep C.

It's harder (but necessary) being honest with a partner about it.

Gotta walk the dogs.  Happy Labor Day!

[rambleon40]

Forgot a cite:

http://www.medscape.com/viewarticle/554637

if you get a log in page, google "cirrhosis progression hepatitis c"

article =
Progression to Cirrhosis in Hepatitis C Patients: An Age-dependent Process

[rambleon40]

Regardless of age of infection, cirrhosis is shown to develop between age 60 and 65.  Excess weight increases likelihood and pace of development.  

I had a fairly well-known expert on Hep C tell me that once diagnosed with cirrhosis, you have a 5% chance of liver fail;ure each year.  

Even money says you live to 75 without treatment.  These numbers are almost certainly skewed by people who did not know they had the disease and lived normal carefree lifestyle.  

I submit that a lifestyle high in dark colored vegetables, exercise, no fatty nasty CAFO meat, no alcohol, and lean BMI will get you through.

We all die sometime.  Be strong while you live.  

Big Pharma is pretty much full of hooey.  They'll say anything and hide truth to get the $15,000 to $30,000 your treatment regimen costs.

[rambleon40]

Cause maybe we don't want to take the time to eat really really healthy, keep our weight low, not drink alcohol and exerice regularly which, I am convinced, would be just as approiate and a whole lot safer therapy than any interferon combo therapy.  

"There is a risk that increased screening could result in treatment for people who will never need it. Only 5 to 20 percent of people with chronic infection develop cirrhosis in about 20 to 30 years, and doctors cannot predict which patients those will be.
“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway."

http://query.nytimes.com/gst/fullpage.html?res=9F07E7DE1E31F931A15754C0A9669D8B63&pagewanted=2

[beeblessed]

Hi everyone!  For those of you who replied to this post in September, I really appreciate your input but.......I started tx on September 1st.  Thank you so much for your advice, and I sure this WILL help other newbies who want the same clarification on....what to tell their loved ones, as far as their reasoning, and.......what to tell/remind ourselves in the midst of tx, especially if there are bad days.

ZA2AZ -- Welcome!!  So glad you wet your feet in my thread :)  Best to you on your test results, please post them in the forum, and certainly any questions you may need answered.

Blessing everyone!

[his3707]

If you dont have any damage, why not consider waiting to see how this  all oral drugs pan out.    just a thought,  I think hcv treatment in the near future is going to be so much better than now.   The drugs that are here now are not going anywhere.  You would have to weigh all of your situation.  and make a decision.  I would like to have waited another year or so.  I am ending up doing 48 weeks of treatment and have suffered with a lot of sides.   I just decided I was tired of the black cloud,  It was weighing heavily on me.   But underestimated  the effects of the drugs.  my liver damage is minimal at this point.  It is a hard call.   You might not have hardly any sides.  and could be done with it.  

[banarep]

why, because I have seen someone die from liver failure.  I did not want to be that person.  I treated 3 times before I reached SVR and would have gone 4 or 5 if I needed to.

[ZA2AZ]

I am sooo glad I started tx, and not doing it didnt even cross my mind. I was diagnosed by a fluke skin-punch biopsy of all things, may 2011. Im on week 5 of pegintron/riba and have managed, one day at a time. Some days, 10 minutes at a time..
Got it from a blood transfusion when I had my first-born, December 88. Gen2. I was living in South Africa..

I wish I had paid more attention to the creeping symptoms. When asked the family doc he said it was razor rash on my legs, and the fatigue was depression. In 2006 my liver function tests (LFT's) were already high and he did nothing about it. Had I known then I would have avoided deterioration of my "hives" and now the hyper-pigmentation. Going to find out my 4 week test results on 09/08.

The anticipation of starting was not a walk in the park. None of it is, but at least I am trying to eradicate the virus from my liver.
Go for it beeblessed! You will be blessed.
P.S. This is my first post and you made me do it ;-)

[babs824]

what a fabulous thread. it will surely help so many on the fence. i have nothing to add that has not been said and i just loved flguy's humor. i had hcv since age 25 and i was 64 when treated. it was an albatross of huge proportions altho i never had one symptom. the hardest part was when i got breast ca and needed major chemo wondering if my hcv would accelerate beyond return.besides the other worries. it did advance but took me 12 years post chemo to get the courage up! yes it is a deal breaker in sexual relationships, so much ignorance on all fronts in the food business just the h word sends folks running! the insurance issue with a serious pre existing condition was frightening constantly. it is a disease that only gets worse. why wait? if u have insurance and can get your life in order to do it there is no time like the present. i was geno 2 and tx was not fun but i feel better and stronger and mellower than i did prior to tx.the the albatross is gone and i believe the dragon is too. good luck to all. babs824

[Wildorchid1121]

1- Because Hep C is a silent killer, you can have it for years without any symptom and when you least expect it, it becomes cirrhosis or liver cancer.
2- Again, Hep C presents no symptoms so a lot of people have it and don't know they do. All of us who found out we have it is because of some other tests we had done, or by pure coincidence.
3- Not necessarily, we just made a choice when we found out, and it's better to make a wise decision than to eventually realize that it is maybe too late to treat.

Deciding to treat Hep C is a very personal decision, and we are the only ones that can make this choice, not our family, not our friends, not our doctor, we chose it because we don't know what's going to happen if we don't, and the alternative is to find a way to get rid of this disease.

You say you want to have a valid reason to treat your Hep C?
Well unfortunately you might have bad days, you will go through a very harsh time, flu-like symptoms, headaches, nausea, loss of appetite, wight loss, and to top it off, you will lose hair.
Some have worse side effects, some are lucky enough to have very minor side effects and you might be one of those people.

This is my second time treating, and I still believe and have faith I will finally be healthy again. To me it is worth going through this personal hell to achieve that goal, because I have children and I want to be able to see my grandchildren grow and to be a part of their lives. For that I need to jump off my perfectly good plane, without knowing what awaits me, and I might be frightened, but it is a very valid reason for me to want to do it, as long as you have your parachute on jump with Faith, the result is well worth it!

Good luck, and remember that you are not alone.

[eureka254]

1.  Why treat if all tests are good and I have no symptoms and am not in pain?  
---------------------
My husband had no symptoms and was not in pain when he was diagnosed, but along with hep c, he was diagnosed with cirrhosis and HCC (primary liver cancer)... and he had, I repeat, NO pain, NO symptoms.  

2.  Why treat at all when so much of the population walks around with Hepatitis and doesn't even know it?  
----------------------------------
Because you can get to end-stage too and not know it.

3.  For those of you who have had it long term, did something happen overnight to make you decide to treat?  A pain or some other symptom.
----------
Actually, my husband resisted treatment initially, even after HCC removal and cirrhosis diagnosis... because doctors didn't think he would have more than a year or two after tumor removal, he didn't want to "waste" what time he had left on treatment... but a year later, when he was still tumor-free despite expectations and docs kept pointing out to him that being virus-free would greatly increase his chances of long-term survival if he reached SVR, he decided to treat.  It was not an overnight decision... rather a recognition of risks and benefits and lots of reading and education.

[adamben101]

Treat!  Although many people with HCV will never have physical pain and will die from something other than HCV, Drs, patients and caretakers alike will tell you the symptoms of end-stage liver disease are far worse than the worst treatment sides.  And on top of that, the worrying about infecting others and living the rest of your days with it are simply not worth foregoing treatment.

[curiouslady1]

Why treat?  Do you want to always have to use a condom before sex?  This mode of transmission may be nearly non-existent but it still is often a deal breaker for relationships.  I personally think this infection is a major interference in developing intimacy.

[dreamcat]

in answer to your question re why 3 biopsies, and no, it's not too personal at all... My doctor just wanted to keep tabs on the progression and I thought it was a good idea, too.  

I never considered treatment in the past because the success rate wasn't high enough to put myself through all the potential side effects for so long, but now, there's a good chance to eradicate completely the evil C, so I'm a go!  

I see my doctor this afternoon to go over side effects (although I think I've gotten more information from this site than he can ever tell me!) -- so I imagine it won't be long now... excited, nervous and cautiously optimistic am I!

[beeblessed]

Hi Kirk.  Congrats on being clean and sober, and on losing weight (assuming that's a good thing)!!!!  I agree with you in wishing I were ignorant to the fact I have Hep C.  And I think that is where family (all of ours) have the dilemma i.e., why not just forget you know you have it, since you have no symptoms?  BUT by popular vote.........the day to day knowing, fear of infecting others, having a pre-existing condition, fear of liver damage, etc..., it puts me on better footing to move forward in my decision.  

Still nervous.  Still scared.  But much much more educated on the whys and why nots.  As ready as I'll ever be to skydive into treatment, kill the roots at weekend rates, and slay this elusive slowly creeping dragon -- evil Hep C.  Nighty night.....

[kirk8]

I worried about side effects from treatment and thought why treat.   I whished I had never been tested and thought that ignorance must be bliss.

I don’t worry about the chemicals from treatment anymore.  I worry about all the chemicals I put in my body before diagnosis.

I lost 30 pounds before treatment. Got clean and sober.  And, so far, I am having very few side effects from treatment.  Even though I have a little brain fog it doesn’t compare to how clouded my judgment was before diagnosis.  

Very glad I’ve started treatment.  It is a relief to be on tx.  The anxiety leading up to tx was the hardest thing about it, for me, so far.  

[beeblessed]

Hey dreamcat!  I'm curious.  If it's not too personal, why 3 biopsies?  Were you trying to get treated in years past and then changed your mind?  Or just checking the state of your liver every so often?  Wishing you the best.

Flcyclist -- Dang that bites.  I found out on a fluke too but not after surgery.  Thanks for sharing.

Frijole -- Excellent observations!

Don, Belle & Mykids -- We're all learning together, hunh?  Thanks for stopping by :)

Elpaso -- Hang in there.  Guess these thoughts hit us at the same time.  Good to see you :)

Many thanks to Everyone before and after my posts!  Hope this helps more people.  Blessings to all!