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967045 tn?1378403273

Do I Need Treatment???

I have had Hep C for over 30 years. All my blood tests are normal. No liver disease.

My doctor wants to put me on a 12 week - 3 drug program - 1 of the drugs is interferon - which I will inject every Friday.

She said in 12 weeks - I will be cured!! Sounds great right??

So why am I scared to death!! And - why get treatment if I feel fine??

My doctor made a good case - you feel good now - but in a few years you may not . . . . . .

If I get NO treatment - what are the odds that I will get sick??

Many thanks!!
21 Responses
Avatar universal
"So why am I scared to death!! And - why get treatment if I feel fine??"

I would be more scared by not doing treatment after having Hep C for so long, you say you feel fine. Well that is why it's called the "silent killer". I felt fine to only to realize I was cirrhotic. Even though now that I am cured I still have to deal with the cirrhosis... Cure rates are very high, treating has never been easier. As for your odds of getting sick. The only thing that can be said with certain, the longer you have it the odds go way up that you will become sick, very sick... 12 weeks of these new treatments is nothing to worry about, not dealing with your Hep C is........... Good luck
7469840 tn?1409849436
I just found out last year that I had it, for probably over 30 years. I am just lucky things were looking ok, and I am in good health right now. I had an old boyfriend who I got it from, and he got liver cancer and died several hers ago, not a good way to go. I am doing the 3 drug program for 12 weeks right now, day 20, it is not that bad. Why take the chance? Right now your immune system is keeping it at bay, but your liver is paying a price, and if your immune system ever takes a dive for any reason, you may get liver cancer. Why take the chance. This is just my perspective, and this why I am doing it now rather than waiting, I am 63, how long do I have anyway? I am sure other people on this forum may have other advise and perspectives, but that is mine. Good luck! It is not that bad! 12 weeks, 84 days!
967045 tn?1378403273
Thanks!!

I'm 54 (soon to be 55) and I work full time. I am a very high energy person and I am worried I'll be "sick".

Still thinking about it . . . . . .
1815939 tn?1377995399
"why get treatment if I feel fine?? "
--------------------------------------------

You may feel fine but that does not mean your liver is fine. Hepatitis C attacks the liver and causes fibrosis, but people often have no or few symptoms until they have advanced Cirrhosis. One woman on this forum had no idea she had Hepatitis C. She found out by accident. Just a few weeks later her liver stopped working, decompensated, and she had to have a liver transplant. Others on the forum also had advanced Cirrhosis by the time they discovered they had Hep C. Some decompensated while preparing to treat. Some treated and attained a cure, but because they already had advanced to Cirrhosis, they now have a much higher chance of developing liver cancer, even though they have attained SVR. They have to be monitored every 6 months to be sure they have not developed liver cancer.

In addition, all cause mortality is considerably higher in people with Hepatitis C.

In addition, Hepatitis C causes many extrahepatic manifestions such as Lymphoma, Cryoglobinemia, Autoimmune Diseases, Diabetes, kidney disease, thyroid disease, cancers, vasculitis, and many more diseases.

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

My question would NOT be, "Why get treatment?" My question would be, "Why NOT get treatment."

The current treatment is only 12 weeks long. It has very high success rates. The time has never been better to treat.


"If I get NO treatment - what are the odds that I will get sick?? "
----------------------------------------------------------
No one knows the answer to that, but as Can-do man said, "the longer you have it the odds go way up that you will become sick, very sick."


I had Hep C for about 37 years. I treated in 2011-2012 for 48 weeks. I am now cured of Hep C but I am dealing with an Autoimmune Disease that was caused/triggered by Hep C. If I had never had Hep C or if I had been able to treat successfully many years ago, I would not have this Autoimmune Disease. And, there are no cures for Autoimmune Disorders, so I am stuck with it.

My advice would be, treat while you have the chance before you develop liver problems or extrahepatic manifestations of Hepatitis C.

Best of luck.

163305 tn?1333672171
Feeling fine doesn't mean a thing with this virus.
However, if you get a biopsy and find out your liver is healthy, you might want to delay treatment.

Some people never have problems with the virus, their livers remain healthy. Others can die from it.

And as noted by others above, just because you're healthy now, doesn't mean you will remain that way.
And if you have it there is always the chance that you can pass it on to others.
180992 tn?1383377657
"I have had Hep C for over 30 years. All my blood tests are normal. No liver disease".

If this is true I would wait for the non interferon treatment coming at the end of the year, or by early next year.  Interferon has caused so many of us permanent side effects. I'm a walking allergy mess since taking interferon, horrible! Not counting the ringing in the ears and neuropathy in my right leg.  I participated in the Gilead Trial combo without ribavirin and am SVR. I had no permanent side effects from this treatment.  Wait for these drugs if you can.  I would only do the Sovaldi, interferon and ribavirin for 12 weeks now, if I was stage 3 or 4 and couldn't wait.



It's you decision knowing all the information    
Avatar universal
I sure wish I hadn't "waited", not only would I not have cirrhosis but I wouldn't also be diabetic... Like was said about Hep C causes many other problems... Also not sure what you mean by blood test being normal, a biopsy has always been the best way to go and even more important if one is going to keep waiting...
444337 tn?1428077110
The choice to go through treatment is a personal one.  If you've had a liver biopsy and have little or no damage, you certainly don't have to rush out tomorrow and sign on for treatment.  You may be able to wait for an all oral drug combo and avoid Interferon altogether.  Blood tests (liver function test) are not a good indicator of liver damage.

In terms of statistics, the CDC says:

What are the long-term effects of Hepatitis C?
Of every 100 people infected with the Hepatitis C virus, about
75–85 people will develop chronic Hepatitis C virus infection; of those,
60–70 people will go on to develop chronic liver disease
5–20 people will go on to develop cirrhosis over a period of 20–30 years
1–5 people will die from cirrhosis or liver cancer

Of course, this list does not include any of the ancillary issues that have been linked to HCV like Diabetes, Lymphoma (while the risk is small, it's higher than those without HCV), etc.

If you haven't had a liver biopsy, you may want to ask for one to get a true gauge of where you're at.

Best.
4670047 tn?1375734001
Hi Wildewoman. I think the big question is have you had a liver biopsy or not. It doesn't sound like you've had one. Can you keep us posted on that?

My doctor made a good case - you feel good now - but in a few years you may not . . . . . .

You have a wise doc!!!!!! Good luck!
1815939 tn?1377995399
CLINICAL GASTROENTEROLOGY AND HEPATOLOGY June 2011

"In conclusion, SVR is associated with improved survival among patients with HCV GT1, GT2, and GT3 and with substantial comorbidities in routine medical practice. These findings extend the prior observations that SVR reduced liver-related mortality and show an all-cause mortality reduction for each of 3 common genotypes. Moreover, these findings strongly support an important and clinically significant benefit of HCV antiviral treatment irrespective of the HCV genotype, patient age, and comorbidities."

"In this large US cohort of patients with HCV treated with PEG-IFN/ribavirin in routine medical practice, achieving SVR was associated with a significantly reduced risk of all-cause mortality for patients with GT1, GT2, and GT3, after adjusting for numerous baseline patient characteristics and comorbidities. Previous research has focused on liver-related mortality and thus any potential benefit of SVR on all-cause mortality, particularly in populations with substantial competing risk, has not been clear. Because our cohort was from routine medical practice, the patients had relatively high rates of comorbidities. Despite this, SVR clearly conveyed a substantial reduction in mortality."

"For GT1 and GT2 the 5-year mortality rate for responders was approximately half that for nonresponders (GT1, 6.7% vs 14.4%; P < .0001; GT2, 7.3% vs 15.9%; P < .0001). For GT3 the 5-year mortality rate for responders was approximately a third of that of nonresponders (8.0% vs 24.4%; P < .0001). For all 3 genotypes, patients with SVR had comparable 5-year survival rates (approximately 92%-93%)."

http://www.natap.org/2011/HCV/060211_04.htm
979080 tn?1323437239
"No liver disease"
What is your definition of liver disease ?
HCV is a liver disease.

Normal blood tests such as Metabolic Panel or CBC do not rule out liver damage. After 30 years at the very least I would run some of the noninvasive fibrosis tests  as a  next step and go from there...

b
967045 tn?1378403273
Thanks all.

Many blood tests have been ordered. Stay tuned . . . . .
1446517 tn?1304550175
Wow...if my doctor knew I had Hep C (symptoms) 28 years ago, then why did he never order any treatment?
I have felt fine, but then I was diagnosed with Hashimotos thyroiditis, an autoimmune disease, about 10 years after that.
Hashimotos makes you feel tired until the synthroid kicks in, and then
weight comes right off.

Should I be asking him: "why are you doing nothing?"
Or, do I not need treatment, if in 28 years, I have been fine?
I was 24 when I slept all day for a month. Now I am 50.

I feel like they want me to croak, and that is not nice.
I have a physical next month, and I am going to make sure, he tests, however he can, to make sure my liver is healthy or not.
Thanks for your comments....all of you~
4113881 tn?1415853876
Hey Wildewoman...good to see you over here. There are many things you may be feeling that you wouldn't think to link to your Hep C (Extrahepatic Manifestations of Hep C) but can be directly related. I will copy and post a small section below but will PM you the full link so you can see a list. I would provide the link below but was given a warning by MH not to do it again....

Anyways...its good to see you over here.

An Overview of Extrahepatic Manifestations of Hepatitis C

Several studies have found that between 70-74% of HCV patients experience extrahepatic manifestions. Some of the most common symptoms and conditions reported include fatigue, arthralgias (joint pain), paresthesias (feeling of numbness and tingling), myalgias (muscle pain), pruritus (severe itching), sicca syndrome (dryness of the mouth and eyes), insulin resistance, type II diabetes, kidney disease, thyroid disease and many other conditions. Many of the conditions have in some way been related to cryoglobulin (anabnormal blood protein) production.
1747881 tn?1546179478
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
Avatar universal
I guess I was like you to an extend, I wasn't sick but pretty far along when I was first diagnosed. I refused to do the interferon/riba. that's what was available. So I watch my liver very closely. Started to get sick about a year an half later, incivek was coming out soon. I new that would be a shorter treatment and a pretty sure cure for me, so I waited. I think I was the first person in my doctors office the week incivek became available. I was down 20Lbs by then and early cirrhosis.It's really your choice. I chose to wait because I knew I wouldn't be able to do any longer than the six months.Your lucky with all the new meds coming out without the awful side effects. It's you choice but if you wait for the good drugs, Keep up with you blood work and doctor, watch you liver closely, but do treat....Well that's my advice, because when you get sick you will regret not treating.

Good luck
967045 tn?1378403273
Thanks for all the information.

When first diagnosed - 12-15 years ago (I think I got it in the 1980's - the 80's were a blur for me)

I had a liver bx way back then and it was fine. So they asked if I wanted chemo for 24 months & I said no.

Fast forward to 2014 - my PCP has been asking me to see a new liver doctor who she said is amazing. I have put her off for a year or so & finally made an appt. I saw her this past Wednesday - and she is amazing.

But I am afraid of the treatment.

Is anyone out there on the 12 week treatment program? Where you get a shot once a week & take the pills every day? I would love to hear how you're doing.

If you need the exact names of the meds I can look them up.

I am not educated AT ALL on Hep C.

I know I have 1a - my Dr. said that is good.

967045 tn?1378403273
Hep C genotype 1- Sofosbuvir + PEGINF/ Ribavarin x 12 weeks


Above is the treatment plan she wants me to start.
Avatar universal
Hi and welcome I agree with alot of the other posters personally i would wait for interferon free tx Hubby did triple tx with incievk and yes he achieved SVR but is still suffering side effects and it made his neuropathy alot worse anyway what ever you decide is up to you its personal but whatever you decide i wish you all the very best and please keep us posted Jules
Avatar universal
That is the correct new treatment for Hep C Genotype 1a that has been approved by the FDA.

Has your new doctor ordered an ultrasound, ct scan and/or liver biopsy?
That is the only way you can confirm you have no liver disease which frankly, I find hard to believe having had Hep C for so long.

By finding out your true liver status, you can decide whether you can wait a little longer for the interferon-free treatments soon to be approved (expected by Dec. 2014 though not confirmed yet).  The interferon based treatment, while highly effective according to the trial results, can make treatment more difficult because of possible side effects. Every person is different. You may have minimal side effects. My husband had advanced liver disease when he started an interferon based triple treatment and had to stop after 5 weeks.

That's why I think its important to get an accurate reading of what your liver
status is.  Blood tests will not give you that answer.  The most accurate test is the liver biopsy. If this test result showed my liver were in very good shape, then I would wait for the interferon-free treatment. If the test result showed
advanced fibrosis I would start treatment immediately.

I wish you good luck. You have been given advice from people who have experienced first hand what Hep C can do to you.  The decision is now yours to make.

Nan


Good luck in making this decision.
Avatar universal
I would not presume to tell you to wait or not but I would like to suggest you research and know what is available now and what is in the near future. The landscape is changing almost weekly and in a good way for those of us contemplating treatment. This is one of the more recent reports....

The American Association for the Study of Liver Diseases (AASLD), the Infectious Diseases Society of America (IDSA), and the International Antiviral Society-USA (IAS-USA) this week announced the first new hepatitis C treatment guidelines that include next-generation direct-acting antiviral agents recently approved by the FDA. The guidance is available on a new website, HCVguidelines.org, that will enable frequent updates to reflect emerging data.

"It is important to keep in mind that FDA only will approve drugs that have gone through rigorous testing," said IAS-USA panel co-chair Michael Saag from the University of Alabama at Birmingham. "We cannot run a Phase 3 trial on every possible [drug] combination or every possible patient population. The website allows experts in the field to look at the emerging data and craft what we feel the evidence supports, [which] may fall short of what is specifically in an FDA-approved package insert."

"For genotype 1 patients who cannot take interferon, the panel recommends sofosbuvir plus the HCV protease inhibitor simeprevir (Olysio), with or without ribavirin, again for 12 weeks. This off-label regimen has not been through full Phase 3 testing, but performed very well in the Phase 2 COSMOS trial.
An alternative for this group is sofosbuvir plus ribavirin for 24 weeks, though the panel noted that it is not as effective as sofosbuvir plus simeprevir, especially for patients with liver cirrhosis."

"For patients infected with genotype 1a HCV, baseline resistance testing for the Q80K polymorphism may be considered. However, in contrast to using simeprevir to treat a genotype 1a HCV patient with PEG/RBV when the mutation markedly alters the probability of an SVR, the finding of the Q80K polymorphism does not preclude treatment with simeprevir and sofosbuvir, because the SVR rate was high in patients with genotype 1a/Q80K infection (SVR12 rate for cohort 1 was 86% [24 of 28 patients]; SVR4 rate for cohort 2 was 90% [10 of 11 patients]). To date, virologic failure has not been observed in patients in either cohort infected with HCV genotype 1b and with HCV genotype 1a in the absence of the Q80K polymorphism. Thus Q80K testing can be considered but is not strongly recommended."
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