Diagnosed with Hep C a week ago...In need of some advice...

[d-boy86]

My test 6 months ago was negative. Now it is positive, so I guess the good thing is that I'm finding out VERY early. So does this mean my chances of clearing the virus with treatment is on the good side?

I'm awaiting my confirmation test to tell me my geno type and viral load. I'm also HIV positive. However, I'm UD and my liver numbers have been great. So everything is under control on that end. I just don't know how well or bad these two will work with each other--or if it even matters that much since I'm catching it in the very early stages.

Please help me out here. 

[diannastarr]

Hi D-Boy,

Welcome to the forums. Sorry to hear about your diagnosis.

It sounds like you are doing all the right things. You need to collect all the information and see where you stand. As it appears you are catching it early and your liver is strong, you can likely wait a while before needing to start treatment.

That is great news as there are new treatments coming in the next several years that have much less side effects and shorter treatment periods. It can also take a little longer for the new drugs to be tested with an HIV co-infection so it's doubly good you can wait for those results.

But make sure you take care of your liver (no drinking, etc...) in the meantime.

[d-boy86]

Thanks! I rather not wait too long considering it will probably lower my chances of treatment success, right? Would it hurt if I went ahead after my doctor does all the appropriate blood work to move forward with treatment?

Also, are the side effects that bad to where people may not be able to work? I have a desk job as a paralegal, it doesn't require much physically. I also have a part time gig at a retail store.

[iana5252]

Hi d-boy, welcome to the forums. Bummer on the diagnosis but good for you on catching it early.

Current treatment options have as much as a 70% chance of success (depends on genotype) but they tend to be very difficult to manage with the side effects and length of treatment. Check out the Hep Blogs (http://blogs.hepmag.com) to read about folks currently going through treatment. Most folks are NOT able to work while on the currently approved treatments.

You also have to look closely at what works with your current HIV treatment regimen. There are a lot of ongoing trials looking at how the therapies work or don't work together. Check out our comprehensive lesson on co-infection...
http://www.hepmag.com/articles/2678_9984.shtml

Definitely talk to your doctor about when is appropriate to start treatment as everyone is different. More than one opinion doesn't hurt either. Especially if one is a hepatitis specialist. Here is our lesson on factors to consider when looking at starting treatment...
http://www.hepmag.com/articles/2512_18754.shtml

[d-boy86]

Thanks. My doctor just got back to me. I go in for blood work tomorrow, and I have a ultrasound scheduled for my liver next week. Not to mention, I just found out about this Friday to be exact. I know I said a week ago, but the weekend felt SO long for some reason. So it looks like I'm moving along on the right track to fight and destroy this thing.

Also, my doctor mentioned that there will be some new treatments coming out within the next year that she might want me to take instead of rushing along with the current treatments. I'm honestly afraid to wait considering there's a chance that these drugs may not ever be released.

Has anyone had any success with treatment here? I'm assuming so right?

[jberlin]

First, I too am sorry you have to deal with this, but deal with it you must.  I was unsuccessfully treated in 2004 (relapsed, dual therapy, 48 weeks, geno 1) and recently found out I am cured from my second treatment this past year (Incivek triple therapy, 24 weeks).  I have stated here before, if your liver and health looks ok for the immediate future I certainly advise waiting another 9-18 months to see what the new treatments bring, hopefully 12 weeks and no interferon!  Good luck and keep us informed. -jack

[karenhoyt]

The new drugs are great. If your doctor is wanting you to wait, give it some thought. I waited until the current treatment was released. It was scary business, but I am so glad I did. Unfortunately, I was end stage and needed to treat in 2011.
The medical community is highly aware of how to treat co-infection hcv/hiv. I hope you have a doctor you feel comfortable with. Keep educating yourself. Eat like a nutritional ninja. Karen:)

[d-boy86]

The new drugs are great. If your doctor is wanting you to wait, give it some thought. I waited until the current treatment was released. It was scary business, but I am so glad I did. Unfortunately, I was end stage and needed to treat in 2011.
The medical community is highly aware of how to treat co-infection hcv/hiv. I hope you have a doctor you feel comfortable with. Keep educating yourself. Eat like a nutritional ninja. Karen:)

Thanks Karen! I just received the results for my genotype today. It's Hep C 1a. I know it's one of the hardest to treat, but from what I'm reading on line the success rates are pretty much the same, just the possible harsh side effects right?

[karenhoyt]

I was 1a also. Now I'm dada-zilch! haha. You'll be able to say that someday. Soon, I hope. You are right, it is shorter treatment and much fewer side effects. They have come sooo far! I have a few friends who did the clinical trials and said it was smooth sailing for the most part.
I know you'll be getting your body ready. Best of luck to you! K

[d-boy86]

I was 1a also. Now I'm dada-zilch! haha. You'll be able to say that someday. Soon, I hope. You are right, it is shorter treatment and much fewer side effects. They have come sooo far! I have a few friends who did the clinical trials and said it was smooth sailing for the most part.
I know you'll be getting your body ready. Best of luck to you! K

Thanks K! I just got back from getting my liver ultra sound. Everything looked normal they said. I will ask my doctor if it's okay to start treatment as soon as possible. I rather not wait as now my VL is VERY low and my liver is still functioning perfectly. This means that I should have no problem eliminating the virus with the current treatments. I rather just fight and have this out of my body immediately. Lol.

[d-boy86]

Hi Guys. So I went to see a gastro specialist yesterday. She's insisting that I wait for the new treatments to become available as they have a higher cure rate. So far all my results show no liver damage.

However, I have a question -- is treatment really bad? I've looked at some youtube videos and read some online comments. Some people say its not good, but they can still manage to go to work and maintain their normal life. Others have said they weren't able to work and could barely walk.

Can someone share to me their experiences with treatment? Thanks.

[jberlin]

Current treatment ain't no picnic!  I did 48 weeks co-pegasys in 2004, relapsed, and 24 weeks of Incivek triple therapy last year.  I did not miss work, but on the best day felt like I had the flu, and the worst days fever, aches, itching and headache - and always tired (blood count drops).  Everything tasted like I was sucking on a rusty copper pipe - yuck.  Plus the emotional roller coaster, I would get sad, then angry and was moody.  My poor wife!  Best case for you under the current Incivek triple therapy is 24 weeks.  As a 1a (I am too) that is the only treatment you should consider.

My liver doc told me I should consider waiting also in early 2012 because my liver was in good shape and liver disease takes a long time to develop.  I opted for treatment in 2012 because of my age, and at that time it looked like perhaps five more years before new treatments.  Now, 15 months later, the guess is 18 months until geno 1 sees a non-interferon treatment regimen (sooner for geno 2).  If your liver is in good shape, waiting 18 - 24 months for a easier to tolerate treatment seems a good idea to me.  As to the 'higher cure rate' - not sure... Incivek treatment is over 80% effective, and if you respond in 4 weeks and complete treatment, over 90% effective.  Main failures are non-responders who should bail out anyway, then people who quit because of side-effects and don't finish.  Responders at 4 weeks that are UD at 12 weeks are able to quit at 24 weeks - which is what I did and I am now considered cured.  Hope this helps & good luck!