Sooo I started to date a girl who has hepatitis c

[wallywest]

I started to date a girl who has hepatitis C, and I really like her. She's fun, smart, really pretty. But I have this underlying fear of catching the virus... I know the chances are slim. We've only kissed intensely a few times, and had minor minor foreplay (hand job, not oral). I really want to take things slow, but what risks, actual risks do I have with her? I don't want to reread the websites of how I can and cannot get it, I want someone who can really advise me. Do the pros (her being awesome) out weigh the cons? :-/

[Metoo2014]

Hi all - new to the forum - old with the C.  My story, for (5) years Doc kept telling me I was only depressed.  Finally, he ran blood tests & found Hep C with a high viral load.

Too afraid to try Interferon back then - I went holistic.  It did not touch the virus but I believe it helped once I decided to do the Interferon.

Outcome:  C undetectable.  Still feel run down, etc. and I'm thinking it's a chronic side effect of Interferon.  I cannot find any stats or studies dealing with this - any suggestions?

Summary - although I still do not feel well, I'm the same as before we found the C and happy that C is undetectable.  Would I choose Interferon again?  Yes, unless today we have better choices.

Last but not least - I'm sorry to hear someone else has passed on.

The Guy with fear about catching C from his Girlfriend - my Ex Husband did not get Hep C.  I think it has to be blood to blood although I'm not sure.  I am sure he never got it from me which hopefully will calm your fear.

Thanks for this site - I've needed to talk about it!!!

[nygirl7]

Love.

[can-do-man]

Well your doctor might be world renowned but if he is telling you this... "The Gilead-Bristol drug you are referring to had a 100% cure rate in clinical trials with two genotypes.".... Or this, "The one drug she said is literally a miracle drug. All genotypes, 100% efficacy rate...No interferon..." Then they don't know what they are talking about as what's up for approval does not have 100%, as a matter of fact genotype 3 the results are not that great.  

[IAmTheWalrus]

Fwiw - I was married and raised five kids with my wife before I found out I had hcv for the last 35 years. My wife was tested and is negative for hep c. It is hard for me to believe that it is possible for hep c to be contracted sexually.

But, for her own sake, your friend should get treatment. This disease is insidious because it often causes no symptoms for decades, then, when symptoms finally appear, liver damage can be significant and irreversible. She doesn't want this to happen. Often the choices at this point are liver transplant or death. Many people die from the effects of hep c every year awaiting a donor organ. Even if one is lucky, like me, and gets a donor organ, the risk, expense and suffering make the trials of hcv treatment look very attractive. Plus, even with a successful transplant, treatment is still required because the transplanted liver always gets infected. The treatment options are more limited and the treatments are generally more difficult and less successful for a transplant patient.

If you like her, you might want encourage her to seek medical treatment.

[ahavs0308]

I did the interferon and ribavirin...It wasn't half as bad as everyone made it out to be...

My doctor is world renowned. William Carey of the Cleveland Clinic. This was from his mouth. I lumped all that info together; which may have been confusing. There is a genotype 1 drug in the works right now. With this 24week treatment they were yielding SVR rates of 99%. Yes, genotype 1. No interferon. I will post a link below.

The Gilead-Bristol drug you are referring to had a 100% cure rate in clinical trials with two genotypes. I believe treatment naives with 1 will still need the interferon. I was trying to be encouraging above, not cynical and pessimistic. Or ignorant for that matter; as you didn't know about the drug I was talking about.

Here is that link: http://www.medscape.com/viewarticle/807674

http://www.businessweek.com/news/2013-06-07/gilead-s-hepatitis-c-drug-to-get-priority-review-by-u-dot-s-dot-fda

[dontworry_behappy1]

The up coming drugs that will be likely approved by the end of the year are not for all geno types, don't have a 100% efficiency rate and are not interferon free for everyone.  You might want to ask for clarification from your doctor about the up coming miracle drugs.  If you are a genotype 2or3 then the new treatment will be interferon free.  Hope you are one of the lucky ones.

DWBH

[ahavs0308]

Just talked to my doctor last week and they are just waiting approval of the FDA. She said hopefully by Christmas they will be approved. The one drug she said is literally a miracle drug. All genotypes, 100% efficacy rate...No interferon...

[ahavs0308]

Wallywest,
                Here is a small article and link that underscores the fact that many prominent Gastro/Hepatologists ARE labeling SVR as an actual CURE...The terminology and dynamics of diseases changes quite often...When they first started treating hep c the success rate was like 20-30%. Then it got as high as 50%. Now, 80-100% depending on the genotype and the drugs that are used...

I am 28 years old and I just finished hep c treatment. It was tough but it was the best decision I have ever made in my entire life. I would advise you to convince her to see a hepatologist and to weigh the options of treatment in the near future. Once SVR is achieved doctors say to go on with your life as if you were a normal person that never had it...My blood will always have hepatitis anti-bodies but I don't have the active virus. I can't give it to anyone and it isn't harming me anymore...I am engaged and over the course of 5 years I never gave it to my fiance. It is actually pretty hard to transmit hep c unless she were to literally take her blood, cut your arm open, and then inject the blood into your blood stream...

If you truly care about her and want to alleviate your worrying, adivse her to see a doctor and consider treatment.

[dontworry_behappy1]

I'm sure this fun, smart, really pretty, acts so level headed AND composed is wonderful.  Sounds pretty honest too.  Told you right off they has Hepatitis C
and everything.  Sounds to good to be true.  

[FlGuy]

"She's fun, smart, really pretty, acts so level headed and composed  I do like her, I think she is wonderful"...It's just that ugly HCV thing, huh?  Just need her to conform to you for your needs, huh?  May be back up a bit and fairly evaluate what you bring to the relationship table from her point of view. Sure HCV is curable, other things are not.

[BoceprevirGal]

    That is a good point, about estrogen possibly protecting our livers.  During our child-bearing years,  men (our same age) have higher instances of their Hep C leading them to cirrhosis. But once women go into menopause, then the rates equal out between men and women.
   I am just hoping these new meds come out quickly~

[libzo2]

I sure am glad you came through Doll.  One is scared to jump into treatment while being fearful of not beginning sooner.  I remember one of my Doctors saying waiting while monitoring was not wise for women as their estrogen was a plus for treatment.  

Wally - I want to honor your heart.  With your support, she will prevail better.  Do you have an older brother?  

I am really sorry for Creewoman.  I always think she could have been me and I am sure no one is ever ready.  I thank the forces she found us to hold up her mirror.  Maybe Wally's sweetheart should just read some of our stories.  Lord have mercy.

[Dee1956]

Hey Mike, good response,

Wally, I had slightly elevated liver enzymes, the doctor thought I had plenty of time to think and to treat my HCV. Then he did a liver biopsy and I was starting to go into cirrhosis.  I had no time, I had to start tx right away.
Good luck

[mikesimon]

You said that your girlfriend "claims her Hepatologist told her that they don't like to start treatment until her levels are bad...."

That statement troubles me Wally.

Frequently patients infected with hepatitis c have elevated liver enzymes - ALT, AST and GGT. However, some hep c infected patients have normal liver enzymes. The fact is that even some patients with normal liver enzymes can go on to develop significant liver damage. So, if the doctor is referring to liver enzymes when he is talking about "her levels" I would question his judgment on that issue. Liver enzymes do not necessarily correlate with liver damage.

There is also what is referred to as "Viral Load" which is the quantification of the amount of virus detected in the blood. If Viral Load (VL) is what her doctor is talking about when he mentions "her levels" then I would again question him. VL also does not necessarily correlate with liver damage. There are cases where the patients had a very high VL and mild to no damage and conversely there are cases where patients had a very low VL yet had significant liver damage. So VL does not tell us what the condition of the liver is.

Now, on the other hand if the doctor is talking about FibroTest/FibroSure results then I would feel much more comfortable because the Fibrotest/FibroSure does reflect the condition of the liver.



FibroTest and ActiTest combine six serum markers with the age and sex of the patient:

    Alpha-2-macroglobulin
    Haptoglobin
    Apolipoprotein A1
    Gamma-glutamyl transpeptidase (GGT)
    Total bilirubin
    ALT

I would definitely ask the doctor precisely what he is referring to when he says "they don't like to start treatment until her levels are bad". Until WHAT LEVELS are bad.

Good luck,
Mike

[Dee1956]

Since her doctor is saying her levels are low, perhaps you could ask her to get copies of all work she has had done.
Has she had a biopsy?  If so perhaps he is saying that her liver is not damaged to an extent that tx is warranted.
I would still want to know if I were her.  I would want my geno type, my biopsy results and a treatment plan.
We just had a member die on this forum.  She did not realize that she needed to treat and waited too long, we are very sad to lose Creewoman

Good luck
Dee
p.s. when I first joined here I did a lot of searching for information, at the top of the page there is a magnifying glass, you can click on that and look up anything you are interested in.

[ActingBrandNew]

"Relapse meaning if they pursue the same old behavior that got them the virus to  begin with?"

No, this is a different kind of relapse. Lets say your GF treats and becomes undetectable during treatment and finishes. She will then have a series of viral load checks. If the virus comes back detectable in one of these checks, it is clinically classified as a relapse.

"Relapse is defined as undetectable HCV RNA at EOT but detectable HCV RNA during follow-up. In general, if patients experience relapse, they do so soon after stopping treatment [4]. Patients who attain SVR are considered cured because the likelihood of expe- riencing late viral recurrence is 0–3% [5–8]. "

http://www.intmedpress.com/serveFile.cfm?sUID=690afbf7-b39b-4046-9eb8-0b456b16253d

So...its not "in theory" she would be cured but rather she would actually...physically be cured.

Some information that would be helpfull would be to ask your GF or her hepatologist what her genotype is. Thats important information because treatment varies based on genotype. Also, has your GF had a biopsy? If so, what does her liver look like? How old is your GF and how long has she had HCV?

Keep in mind, HCV doesnt just ruin your liver. It can affects many other things.

Infection with hepatitis C virus (HCV) can lead to both acute and chronic hepatitis. In addition, there are several extrahepatic manifestations of chronic HCV infection, including [1-4]:

    Hematologic diseases such as cryoglobulinemia and lymphoma
    Autoimmune disorders such as thyroiditis
    Renal disease
    Dermatologic conditions such as lichen planus and porphyria cutanea tarda

Extrahepatic manifestations of HCV virus are common. In one series, 122 of 321 patients (38 percent) had at least one extrahepatic manifestation (table 1) [3]. In most cases, these manifestations appear to be directly related to the presence of the virus

http://www.uptodate.com/contents/extrahepatic-manifestations-of-hepatitis-c-virus-infection

"How would one go about ensuring that this doctor supplies her with the SVR treatment?? How does one word it to not come off threatening or demanding?"

If your GF is insistent on treating now but her doc doesnt want to....get a second opinion. The treatment can be very hard for some. The medications can cause nasty side effects at times. If your GF is a genotype 2/3 she may want to wait for the new meds because the combo will be interferon free although if she is a genotype 3, the combo isnt as promising.

[BoceprevirGal]

  Yes, I'm cured. But easier cures wont be here for at least another half year, then it will be on~
    The cure I took included 28 weeks of Interferon shots, which can be harmful, so they are trying to formulate a good combo that is Interferon Free~

[wallywest]

Relapse meaning if they pursue the same old behavior that got them the virus to  begin with? So, in theory, they are cured? That's amazing! I'm talking to her right now about it. She has Medicaid and claims her Hepatologist told her that they don't like to start treatment until her levels are bad. So, in retrospect, they don't like to treat their patients until they're dying. I asked her that the next time she sees this doctor, I would like to be there, and remind them of the hippocratic oath they swore to.

How would one go about ensuring that this doctor supplies her with the SVR treatment?? How does one word it to not come off threatening or demanding? Because from what she's told me, it seems like this doctor could care less of his patients. And with Medicaid being a state run insurance, her choice of doctors are pretty limited except going to the emergency room for the price of an arm and a leg.

[ActingBrandNew]

If your girlfriend treats and attains SVR...that's it. She doesn't have to have yearly maintenance or anything like that...its over and she can move on.

Sustained virologic response (SVR) is defined as aviremia 24 weeks after completion of antiviral therapy for chronic hepatitis C virus (HCV) infection. In analyses of SVR durability, the incidence of late relapse is extremely low (<1%)

I do like some of Alan Moore's work. V and The League of Extraordinary Gentlemen.

[wallywest]

Awww, Dee! Congratulations! That's awesome! I'm ecstatic that there is hope for this thing. You have also totally given me assurance in losing this fear. :) thank you. I'm really happy that you were able to beat this sucker into submission!

[wallywest]

But if she were to have the SVR, would it be permanent? Or something that she would need to have done once or twice a year? I'm seeing her tonight, so I would love to sit down with her and really talk about this. She says she has no symptoms and that she feels fine, and that she doesn't take medication for this. She acts so level headed and composed, meanwhile I'm freaking out for the both of us.  I want her to be healthy for herself and her daughters sake. Ugggggggggggggggh!!!  

But, on an unrelated note, are you by any chance an Alan Moore fan? Your avatar has V, which happens to be my favorite graphic novel of his.

[Dee1956]

Hi I just wanted to say that I was told in June that I am now cured of HCV.
There are many people here who did not know they had HCV, married, had and raised children, there families do not have it.
The risk is very slight and there is a cure.
Congratulations on meeting someone you are so happy with
Dee
Here is another person who was just told he was cured.

http://www.medhelp.org/posts/Hepatitis-C/Woot-/show/1991812

[ActingBrandNew]

Basically, when you become undetectable there no longer is any virus to pass on. I treated my HCV with drugs called Interferon and Ribavirin for 28 weeks. The virus hasnt been detected in my blood since week 5 of treatment and I am now 4 months post treatment and still undetectable.

Your girlfriend should make an appointment to see a Hepatologist to see where shes at. They have the current drugs but also have new ones the FDA is scheduled to review in December of this year.

I really understand the nervousness...I commend you for doing the research and educating yourself. You may even be able to educate your girlfriend some as well.

[ActingBrandNew]

Its called a Sustained Virological Response. You gain this status by the virus remaining undetectable 24 weeks after treatment. There are drug combinations to treat HCV.

Sustained Virologic Response to Antiviral Therapy for Chronic Hepatitis C Virus Infection: A Cure and So Much More

"Available evidence suggests that a SVR is tantamount to HCV infection cure".

http://cid.oxfordjournals.org/content/52/7/889.full