Just tested HEp c genotype 3 positive

[reallyscaredindian]

Dear All,

1. I have just been tested HCV positive - genotype 3. Viral load 4.5 million. Is there anyway to tell if this is a new infection?

2. I had sex with an indian csw 2 months back? I had used double condoms(I now know, double condoms is a bad choice)
Could I have acquired this from her?

3. I had an ultrasound done. Showed it to a hepatologist. He said liver was normal and there was no damage.

4. I had my cd4 count dome one momth and 2 months after the incident with the sex worker. My cd4 count dropped from 850 to 450? can HCV cause this drop?

5. I am a 30 year old indian male. I have read that the treatment for HCV can be very brutal. I live alone in the city where I work. Can I get the treatment done living all alone?

6. I have heard about Sofusbivir. It should be out in the market in the next year or so. Any idea if it would be out in India as well? and about the costs. Unlike in the US there is no substantial health insurance in Idia. If the cost is going to be high. 85000$ is the estimate) then I guess I should go ahead with interferon therapy.

7. Andy advicdes, people?

[can-do-man]

1. I have just been tested HCV positive - genotype 3. Viral load 4.5 million. Is there anyway to tell if this is a new infection?

No as ones viral load will be different at any given time
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2. I had sex with an indian csw 2 months back? I had used double condoms(I now know, double condoms is a bad choice)
Could I have acquired this from her?

NO, sex is not at all a common way to get Hep C, besides you used protection.
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3. I had an ultrasound done. Showed it to a hepatologist. He said liver was normal and there was no damage.

While a biopsy is the best way to gauge liver damage blood work and a ultrasound can give a doctor a very good ideal
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4. I had my cd4 count dome one momth and 2 months after the incident with the sex worker. My cd4 count dropped from 850 to 450? can HCV cause this drop?
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A cd4 count does not seem to effect treatment though you might want to read this article on it as for starting treatment.

http://www.aidsmap.com/CD4-cell-count-is-no-predictor-of-hepatitis-C-treatment-success/page/1429264/
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5. I am a 30 year old indian male. I have read that the treatment for HCV can be very brutal. I live alone in the city where I work. Can I get the treatment done living all alone?

Sure many have, though at times it does help to have someone to help out at times. Treatment effects everyone different.
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6. I have heard about Sofusbivir. It should be out in the market in the next year or so. Any idea if it would be out in India as well? and about the costs. Unlike in the US there is no substantial health insurance in Idia. If the cost is going to be high. 85000$ is the estimate) then I guess I should go ahead with interferon therapy.

No way to even guess on the cost or when it would be available there, just so you know the cure rate for genotype 3 is not much better then regular treatment for type 3....If I was ready to treat I would go ahead with whats already here for type 3.
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7. Andy advicdes, people?

Learn as much as you can and make sure your doctor is very use to treating Hep C............ The sooner you rid yourself the better as Hep C can cause other problems besides the liver. Remember it seems scarier then it really is.
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Welcome to the forum and best to you.

[reallyscaredindian]

Thanks, can-do-man.

I have been thinking about getting treatment. Don't want to give up my job.

From what I have read here, pretty much everyone had a hard time undergoing treatment.

1. Is there anyone who was able to manage work while undergoing treatment.
        I work in an office from 9 AM to  6 PM.

2. I already have a low BMI. Can treatment cause me to lose weight further?

3. Did anyone here acquire HCV during sex. Can vaginal fluids transmit HCV (ihave heard only blood to blood transmission is possible). Still want to confirm

[pooh55811]

Just to add to Can-do's excellent post, I just want to add the following.

I had a normal ultrasound and yet my liver biopsy showed Stage 2 fibrosis. The ultrasound will show Cirrhosis but it is not good at showing the lower stages of fibrosis. However, as Can-do said, while a biopsy is the best way to gauge liver damage, blood work and a ultrasound can give a doctor a very good idea.

Some people had a more difficult time with treatment than others. Most of us on this site are Genotype 1, which means we had to treat with triple medication treatment, which is generally much more difficult than doing Interferon and Ribavirin without the third medication. That third medication adds a host of side effects to the side effects of Interferon and Ribavirin. Some people do very well on treatment and other do have more problems with side effects. Many people work through treatment although some cannot work through treatment or need to cut their work hours. It is beneficial that you have an office job. It should be a lot easier to do an office job than to do a physically demanding job while on treatment. I think I could have handled an office job while on Interferon and Ribavirin. Like I said, many people, even some on triple med treatment, did continue working throughout their treatment.

I live alone and I did 12 weeks of Incivek (Telaprevir) in conjunction with 48 weeks of Interferon and Ribavirin. I had a lot of side effects, especially with the Telaprevir. I did better (fewer side effects) once off the Telaprevir and only on the Interferon and Ribavirin. It would have been nice to have someone clean the house and cook meals for me, but otherwise i managed very well alone and with no help.

Yes, the treatment may cause you to lose weight but most people regain that weight after finishing treatment.

Hepatitis C is transmitted blood to blood. You would both have to have had open cuts or sores and she would have had to be bleeding in order for her to have caused her blood to get into your bloodstream. That is very unlikely. Most people on the forum have had Hepatitis C for decades and have been married for years or decades. Their partners do not have Hep C. The statistics and research show that Hep C is not easily transmitted via sex.



Abstract

The efficiency of hepatitis C virus (HCV) transmission by sexual activity remains controversial. We conducted a cross-sectional study of HCV-positive subjects and their partners to estimate the risk for HCV infection among monogamous heterosexual couples. A total of 500 anti–HCV-positive, human immunodeficiency virus–negative index subjects and their long-term heterosexual partners were studied. Couples were interviewed separately for lifetime risk factors for HCV infection, within-couple sexual practices, and sharing of personal grooming items. Blood samples were tested for anti-HCV, HCV RNA, and HCV genotype and serotype. Sequencing and phylogenetic analysis determined the relatedness of virus isolates among genotype-concordant couples. The majority of HCV-positive index subjects were non-Hispanic white, with a median age of 49 years (range, 26-79 years) and median of 15 years (range, 2-52 years) of sexual activity with their partners. Overall, HCV prevalence among partners was 4% (n = 20), and nine couples had concordant genotype/serotype. Viral isolates in three couples (0.6%) were highly related, consistent with transmission of virus within the couple. Based on 8,377 person-years of follow-up, the maximum incidence rate of HCV transmission by sex was 0.07% per year (95% confidence interval, 0.01-0.13) or approximately one per 190,000 sexual contacts. No specific sexual practices were related to HCV positivity among couples. Conclusion: The results of this study provide quantifiable risk information for counseling long-term monogamous heterosexual couples in which one partner has chronic HCV infection. In addition to the extremely low estimated risk for HCV infection in sexual partners, the lack of association with specific sexual practices provides unambiguous and reassuring counseling messages. (HEPATOLOGY 2013)

http://onlinelibrary.wiley.com/doi/10.1002/hep.26164/abstract


The current studies actually show a better rate of cure/success with the Interferon and Ribavirin treatment for Genotype 3 than with the Sofosbuvir and Ribavirin treatment.

http://investors.gilead.com/phoenix.zhtml?c=69964&p=irol-newsArticle&ID=1780873&highlight=

http://www.elsevierbi.com/~/media/Supporting%20Documents/The%20Pink%20Sheet%20DAILY/2013/October/Sofosbuvir_AC_FDA_briefing.pdf

[pooh55811]

PS: Just wanted to add that you are 30 years old and that is definitely in your favor. Keep in mind that many/most of us on the forum are in our 50s and 60s and we generally have more age related medical problems and Hepatitis C related medical problems than someone in their 30s. I was 65 years old and had had Hepatitis C for 37 years when I started treatment 2 years ago. I had a lot of extrahepatic manifestations of hepatitis C before I ever started treatment, but I did 48 weeks of treatment anyway. I am now cured (attained SVR).

[desrt]

"1. Is there anyone who was able to manage work while undergoing treatment.  I work in an office from 9 AM to  6 PM."

I treated geno 3 successfully with PegIFN and ribavirin, doing work that was both physically and (for me) mentally demanding, and never missed any work except for scheduled doctor appts. and blood draws. As mentioned above, it's different for each of us, but it's extremely helpful if you can get support from your co-workers and you have a doctor who is quick and willing to work with you on any side effects.
Good luck.

d

[Willy50]

I agree with much of what has been written, but there may be new data on G-3 response rates.

If you have seen a qualified hepatologist and they tell you your liver is normal you likely have some time to wait, review your options and then decide.
I agree that a biopsy may be in order, but many people who become infected do not see serious damage for decades.

The treatment landscape is rapidly changing but I am unsure as to that timetable for your area (when the new drugs might arrive in India), but your hepatologist can advise you on this.

The most recent data on Geno 3 response is here for Sofosbuvir.  It will be unveiled this week at an international liver conference;
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http://finance.yahoo.com/news/gilead-announces-sustained-viral-response-130100600.html

"In the Phase 3 VALENCE study, 85 percent (n=212/250) of treatment-naïve or treatment-experienced patients with genotype 3 HCV who received a 24-week regimen of sofosbuvir plus ribavirin (RBV) achieved a sustained virologic response 12 weeks after treatment (SVR12). Patients who achieve SVR12 are considered cured of HCV infection.

“The VALENCE results demonstrate the high efficacy of a 24-week, sofosbuvir-based, interferon-free treatment regimen for genotype 3 HCV patients with and without liver cirrhosis,” said Stefan Zeuzem, MD, Professor of Medicine and Chief of the Department of Medicine, Goethe University Hospital, Frankfurt, Germany, and principal investigator for the VALENCE study. “Notably, the majority of these patients had failed prior therapy, and sofosbuvir was able to produce a sustained virologic response.”

I think and perhaps others in this forum might agree, that a person with no damage and a treatment naive (a person who has never treated before) would likely have an even better chance of success......
Success somewhere rates in the 90's?
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(compare to SOC-IFN and RBV)
This article shows G-3 chances of success with SOC (this is a 2012 article).

http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02715.x/full

Genotype 3 is a common type of HCV infection, and standard therapy using pegylated interferon (PEG-IFN) and ribavirin (RBV) is quite effective in these patients. While a short course of 16 weeks may result in comparable end of therapy responses, relapse rates are often high. A 24-week course is therefore preferable, and is expected to result in sustained virological response (SVR) rates of more than 70%.
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Here is what is happening with genotype 1's in the USA.  Doctors are "warehousing" patients; having them wait for better treatments.

http://www.usatoday.com/story/money/markets/2013/11/03/rise-and-fall-of-incivek/3357489/

The doctors do this because they have a sense that the risks of treating with the current treatments outweigh the risks of waiting.  This is not just my opinion, but it is the clear choice of those who are waiting and hundreds, thousands of qualified doctors both nationally and internationally.

While the article pertains to Geno 1 patients being warehoused, the rate of damage progression is roughly similar from Geno 1 compared to Geno 3.

Further, keep in mind that G-1's are currently being cured at about a 70% success rate (triple therapy), and have been/are waiting to move to a 90% success rate (sofosbuvir and SOC).

I believe that this same increase may be similar to your case; a 20% or better increase in success chances, a relatively short wait, and an easier safer form of treatment. (*relative* being the operative word, the time delay with be different in each country)

This is what many people (and their doctors) are doing here in the United States.

I happen to believe that since there are many companies developing these drugs that approvals and improvements will start coming faster, and there will be more drugs on the market and the price for treatment will drop as competition increases. These treatments will require far less competent physicians to administer treatments, far less doctor care and far less impact on the patients. The discontinuation rate is minimal for new treatments compared with old treatments.  (only about 1% in latest trials)

The recovery time is also a previously unmentioned factor for SOC which may also be worth considering.  I see people who say to give recovery 6-12 months after end of treatment.

There will be much more news on many new drugs and treatments in just a week or 10 days; mid November.  We are already seeing news articles unveiled this past week, such as the new figures for Geno 3 success rates with new drugs which I posted.

willy

[mkh9]

I have read the same articles and agree with you. That waiting is worth it as long as the doctor thinks one can do it  safely. It is wonderful that these new treatments will save a lot of lives and also lessen the suffering from the previous treatments.
mkh9

[can-do-man]

I will agree these trials show much better results. Up until now this has been prior results and frankly they were not good for type 3. As a matter of fact lower then just SOC. 61% cure rates was not impressive.

"In POSITRON, HCV genotype 2 or 3 patients who were interferon intolerant, interferon ineligible or unwilling to take interferon were randomized (3:1) to receive 12 weeks of either sofosbuvir 400 mg once daily plus weight-based RBV twice daily (n=207) or matching placebo (n=71). Of the 207 patients randomized to the sofosbuvir/RBV arm, 15 percent had compensated cirrhosis (more advanced liver disease) and 53 percent were infected with genotype 2. SVR12 rates were 93 percent in genotype 2 and 61 percent in genotype 3. In the small percentage of patients with cirrhosis at baseline who received sofosbuvir/RBV, 61 percent achieved SVR12."

http://www.hepctrust.org.uk/News_Resources/news/2012/November/Interferon+free+Genotype+2+and+3+trials
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And then you have this news from the top Docs saying type 3 was becoming the new type 1 as for having SVR rates

I think this is great that they have finally realized this, we have seen it here for years. Lumping the two genotypes together has caused a lot of relapses. And I agree 100% that type 3 may be the new 1 as for hard to treat...

Great find Pooh.
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Conclusion

Genotype 3 HCV is an important healthcare problem with its large global distribution, relatively unique pathophysiology and potentially more aggressive disease. It has also become the most difficult to treat based on SVR rates, not just because of any real host or viral issues but because of the neglect of the research hepatology community in developing novel agents against genotype 3. The polymerase inhibitors with only RBV are moderately effective, and this effect seems clearly duration dependent but the advent of newer DAAs moving rapidly into clinical trials have put a 'bullseye' on the head of genotype 3 HCV. We anticipate that with the renewed interest and targeting of genotype 3, the same success of 90% SVR will soon become attainable as we are seeing with the other HCV genotypes. Genotype 3 may be the new 1, but it will only stay there for a short time before innovative research, drug development and novel combinations make the concept of a hard-to-treat HCV genotype a historical footnote in our battle against chronic HCV.

http://www.medhelp.org/posts/Hepatitis-C/Treatment-for-Hepatitis-C-Genotype-3/show/2023571#post_9560638
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It should be interesting news coming out to see if minds have changed. We can only hope.............

[reallyscaredindian]

Thank you Willy, desrt, can-do-man and mkh9 for your inputs.

desrt, if you do not mind, may I ask you about your age, sex and the duration of time you had the disease. Also, is this true that the treatment works better for  people of certain races and not as well for certain others

I am asking this because certain posters here and also my hepatologist suggested that treatment is easier for young people and people who have been infected for a shorter period.

Its really good news for people in the USA that newer better drugs would be out soon. I wish all the people a very good luck.

I had a talk with my hepatologist and I enquired about the side effects of p-interferon and ribavarin treatment.

He was pretty dismissive, he was certainly answering questions but he made it sound that treatment wasn't that big a deal - that the side effects were very tolerable for 95% of people.But what I read here is completely different.

Reading about the far lesser side effects of sofusbuvir - I would have preferred to wait. But, I do not know how long will it be before the drug is launched in my part of the world.

Also unlike  Canada where health care is public or the US where insurance takes a care of a major chunk of cost of medicines, healthcare  in India is largely private - insurance companies do not cover the cost of medicines.
and 85k $ (from what I read somewhere) is way too steep for me.

Plus, I am 30 and would probably be married in a year or so. And I would like to be disease free by then.

What are the cure rates for genotype 3 on the p-interferon, ribavarin treatment.

[desrt]

SVR has less to do with race than with the distribution of certain genes detectable by a test referred to as 'IL28B'. A large portion of the different 'racial' response rates has to do with the distribution of this gene sequence among the population. If you can get this test, it is a valuable tool for genotype3s, especially if you are not undetectable at week 4 of treatment.
I am 57 years old, male, was 46-47 when I treated, and probably had the virus for almost 30 years when I decided to treat. Hope that helps.

[reallyscaredindian]

Thanks desrt.

I did a bit of search on Google. And it threw up the following result:

IL28B subtypes: CC, CT, and TT with CC being the one that is most responsive to HCV treatment.


So, in case one happens to have a non-CC sub-type, is the conventional treatment worth going for?

Did you also get your subtype test done ?
And what is the rate of success of current treatment for  genotype 3?

[rpl265]

"1. Is there anyone who was able to manage work while undergoing treatment.  I work in an office from 9 AM to  6 PM."

I am from India, genotype 1, and finished SOC Tx with Peg Interferon 5 months ago. I was able to work full time all through my treatment duration of 72 weeks. Thought it was somewhat difficult to drive a car to work, and to focus on the job with good concentration and energy, it was doable, and I was able to manage without my coworkers getting an idea about the state of my health. Like others said, it varies from person to person, and better to have a support system at home during the course of treatment.

[desrt]

Many people who are CT and even TT go on to SVR. The test that trumps everything is being undetectable 4 weeks into treatment. My opinion for g3 at this point, is that it's worth going for it with Peg/riba regardless of your IL28B type. The test is just one more tool to help you make decisions during treatment. My virus was 3e, if that's what you mean by subtype. The Il28B test that determines the patient's genetic makeup was not available when I was treating.

[ceanothus]

I just want to re-emphasize that your age is a huge plus. I am 59 and was infected with genotype 1a in 1984 at age 31. I treated three times: at age 41, again at age 51-52 and finally at age 57-58. I cured it with the final treatment. Treatment was very much harder on me with my age progressing. I'm sure it won't be really easy for you, but it is very likely to be something you can manage while working and living alone. When you read all the reports of hardship on this forum you have to remember two things: the vast majority of people treating are at least 50 years old, and the people who are managing well tend not to hang around on the forums to tell us all is well - they are out there living their lives. Best wishes for you!

[ActingBrandNew]

I agree with what desrt said

"Many people who are CT and even TT go on to SVR. The test that trumps everything is being undetectable 4 weeks into treatment. My opinion for g3 at this point, is that it's worth going for it with Peg/riba regardless of your IL28B type. The test is just one more tool to help you make decisions during treatment."

I was also a genotype 3a who treated. I had the IL28B test which showed I was a CT. Based on that and the fact that I did not go UND until week 5, I opted to treat longer than the 24 weeks. The IL28B is a useful tool in guiding treatment duration if one doesn't have an RVR (undetectable at week 4)

[reallyscaredindian]

Thank you all, for such wonderful and detailed replies.

So treatment affects different people differently.

My parents are aware of my disease and have been immensely supportive. They are pro-treatment.

I will be seeing the doc in 2 weeks time. And I will keep you posted about my decision.

[reallyscaredindian]

Dear all,

on the left side, just below my ribs, I have been experiencing persistent dull pain over the last few days?

Does this have anything to do with my liver?

[can-do-man]

The human liver is located on the right side of the abdomen.

[ceanothus]

The stomach is slightly left of center, and you may be stressing yourself into some acid reflux or related issue – its pretty common when people stay "reallyscared" for days or weeks on end. Try some relaxation techniques and maybe some meds for stomach acid if the relaxation doesn't work for you. You are going to be okay!

[ActingBrandNew]

Not saying your experiencing what I was but I had the same  "persistent dull pain".. "on the left side, just below my ribs" as you describe. I had this for over a year accompanied with nauseousness. I had a every diagnostic test in the book to try and determine its source to no avail. Finally, my gastro said, "Hep C can cause non-specific abdominal pain" and I should consider treating it.

Well, I did and my pain is now gone.

[reallyscaredindian]

Hi ceanothus,

My moniker spells it out my fear, doesn't it.
No, I am not too scared about HCV. I just want to get rid of it ASAP.

I just think that its a new infection and that I might have contracted it sexually.
And I am wondering if I might have contracted HIV from the same partner.
It is this possibility that has me afraid. Not Hepatitis C, per se.

My liver enzymes went north (roughly, twice the normal values) 50 days after having sex with a random female I met. They were perfectly normal 25 days after the encounter. And cd4 counts also went down by 50% in the same span.

My ultrasoud shows 'Normal liver'. Then again, I didn't have a biopsy done.
This makes me think my HCV is recent.

Then again, I had a blood transfusion when I was 6 months old. That might have given me the virus. Is it probable that I have the virus for 30 years and have minimal liver damage?



Anyway,I am not too old. Based on all the inputs I have got here, I guess I will go for treatment.

[ceanothus]

I'm glad to hear you aren't as scared as your moniker implies. My personal suggestions for you would be to get yourself a good hepatologist to work with and ask for a biopsy. Ultrasounds and blood tests are helpful indicators, but to know your liver condition with certainty requires a biopsy. If your HCV is recent, your liver will probably be a stage 0 fibrosis. If you were infected in your infancy it might be any number but would most likely be between 2 and. 4. Chances are also quite good that your infection was neither of these but some time in between, as there have probably been MANY other occasions when a little human carelessness could have resulted in exposure. There are many cases of HCV that simply defy our desire to know the exposure route. It can be transmitted by any blood to blood incident, so with some carelessness it can easily be transmitted via dental work, immunizations, tattoos, barbers

[ceanothus]

I hit the post button before I was finished (too easy to do on an iphone)! Now, where was I? ...barbers, manicurists, childhood rituals of "blood brothers" or even of just plain physical fights if both get bloody, surgical procedures, accidentally using someone else's toothbrush, scissors or manicure tools (if the are infected and they recently got blood on it). The list could go on, but basically it means its a pretty hopeless goal to try to be certain of how it was acquired. I've always assumed I got mine from a 1984 transfusion, but there are literally hundreds of other less likely occasions, and it could have been any of those. Sex is by far the least likely way - this has been shown by many studies, and I can also add the personal evidence that my husband has never acquired it from me in spite of many years of very frequent sexual relations, with at least 10 years before we even knew I had the virus. In those days we weren't cautious about anything! Many other forum members have had this same experience, and many of the women have also given birth to children without infecting them (though this does carry some small risk). So I recommend just letting go of guessing how you acquired it and focusing on how much it has damaged your liver so far. If it is stage 0-1 fibrosis I think you can easily afford to wait for easier treatment drugs, if it is stage 3-4 I think it is urgent to treat ASAP, and if you are stage 2 you are in a gray zone where I can't even say which way to go - but your hepatologist would probably have an opinion. Keep on practicing safe sex because of all the other std's out there. Good luck!

[reallyscaredindian]

What do these different stages mean?

1 .Stage 0 from what I gather is one wherein there is no damage to the liver. and stage 4 would be cirrhosis? Am I correct in my understanding?

2. Also does biopsy hurt? Is one put under anaesthesia?

3. I get the point about not worrying too much about when one was infected. I am not worried about that. Its the possible co-infection with HIV that is eating me up.