16 year old recently diagnosed with hep c

[Danielle7]

Hi, my name is Danielle. I'm only 16 years old, 17 next friday (woot woot :D). I have been recently diagnosed with hep c and am scheduled for my biopsy. I am genotype 1A. I most likely caught this virus from IV drug use. I am a recovering roxicodone addict. I'm very scared.. I dont know whats ahead of me.. what to expect ? Whats going to happen ? Will I never recover and eventually kill myself by destroying my liver ? HELP ):

[pjhep80]

we are all broken records around here LOL same method of infection for me as well back when i was 18 i wasnt diagnosed until about 7 years ago, so i have had this for 30 years... stopped iv drugs when i was 21 but i continued to use a bit and drink pretty heavy and i am only stage 2 (stage 4 is cirrosis)  ... so, dont freak out you will be ok, this virus will most likely take a long long time to do any major damage... stay on the suboxone i have a friend on it helping him out alot... also, you are so early with this prob only a year or so infected right??  your biop will probably show absolutely nothing stage 0 grade 0 you might not want to even worry about treating now, the 3 drug cocktail you have to take to get rid of this is pretty toxic and you still have to treat for a year if you are type 1... there are clinical trials in the works right now to shorten treatment and to cure this without all 3 drugs... you have lots of time im sure... stay away from needles... you are a young beautiful girl dont mess yourself all up...

[marsfrank8]

Hi Danielle! My daughter is !6 and we just found out she has Hep C also! She has had it longer than you, though, she has had it since birth, from her birthmother. First, you need to get that biopsy. If your liver is doing well, please wait until you are 18. The incivek is not approved for use on under 18s. That is only one year. My daughter is a !b genotype and that is what we have been advised to do. For geno 1s, the treatment with the new drug is soooooo much better. 75-80% cure rates compared to 45% just interferon and riba. It sounds like you haven't had Hep C for very long and you should be able to clear it. Youth and being a female are on your side!!!

[roostermom]

Danielle, my daughter was diagnosed when she was 21. She got it from me somehow but we don't know how. We were geno 1 also. I got her into the Incevik drug trial and she was cured. It turns out your age cohort has a very high cure rate on the new triple therapy.

[nomorehepcliz]

Hey - welcome!  I got HCV the same way 35 years ago, have known about it since '91 and am just starting treatment.  Definitely try one of the new triple therapies.  Is your doc a hepatologist, or a gastroenterologist? make sure your doc is one of those since they will be much more up on all the newest developments.  What kind of support system do you have?  Is your family helping you?  It helps so much to have a good support system.  But, as you can tell by all of the posts here, you really don't have much to worry about now.  The biopsy is not a big deal, and if you start treatment soon you should do great.

Good luck!

[lal959mik]

        You are not in danger from Hep.C. the first Doc. that I went to said that most of the time you will have no symptoms till you get older.  He said have a Biopsy ever 5 yrs. Stay clean from drugs and live.

[Jakied]

       Women normally have an easier time in therapy and have a higher Svr rate than men.

  Estrogen is a natural barrier to hcv.  Take this one day at a time and all will be well.

[belle19]

ask your doctor about the milk thistle.  my doc said no!  i have had hep c 1a for 37 years and i have minimal damage to my liver.  i had a liver biopsy 3 weeks ago.  it's not that bad.  and i was really scared.  i started treatment 2 weeks ago and so far it's fine except my legs itch like crazy.
good luck to you and happy birthday.

[kirk8]

Thank you. I didn't know that the nave numbers were so good back then.  I have an HMO and I think that they may have told me the 20% number to discourage me from pushing treatment.  They told me to wait for this new generation of drugs to come out and to get down to 180lbs to have a good chance of success. This was a completely unobtainable goal because I was 260lbs at the time.  Then they said “don’t worry, we’re going to cure u.” I have never heard of numbers like 45-50% for 1a.  I never looked them up.  I really think they were just trying to get me to go away.  I’m not going away this time!  

I’m going to post a question on the message board.  I would like to hear your opinion please.

[Aaron57]

You are lucky to be covered by insurance and able treat now with no or minimal liver damage .. Good luck !

"When I was diagnosed, 3 years ago, treatment wasn’t done for a1 until these conditions started to develop.  There was only about a 20% chance of clearing the virus with Interferon and Ribavirin."

I'd like to point out that you have your 1a success #'s for P/R (peginf/riba) off .. and I do believe many folks in the last 3 years underwent Tx for 1a & many before they had any symptoms ..

There always has been a 45-50% chance of SVR for 1a Tx naive .. if not cirrhotic ..

[kirk8]

I forgot to mention, most Drs won’t know the answers to your specific HVC questions. You should talk to a  hepatologist or a gastroenterologist

[kirk8]

Oh, suboxone, I remember what that is now.  I had a friend on that a year or two ago.  I hope it helps with cravings.  It gets easier as time goes on.

[kirk8]

I don't know much about anti-depressants.  That is what suboxone is rite?  R they taking u off it because it could cause liver damage? I know a lot of anti-depressants can cause liver damage.  I was taking naproxen (which brings down swelling) for an injury. My Dr cut me down to half doses because of possible liver damage.  

If u ever have any more questions or just want to message someone who’s been there I added you to my friends list.  You can send me a note there.

[kirk8]

Your other question was about vitamins.  You should probably take a one simple multi-vitamin a day.  Don’t take anything fancy.  Remember, everything u eat and vitamins or supplements all have to be processed through the liver. So, taking more vitamins than u need does more harm than good.

There is one supplement called milk thistle which my Dr recommended.  It reduces inflammation of the liver but this is the only supplement I have ever heard of a Dr recommending. Most people with hep c get inflammation. You might not though so I would just stick to the multi vitamin until u know more.

[kirk8]

Diet probably isn’t necessary. Especially because of the new drugs,  Incivek (Telaprevir) and Victrelis (boceprevir.)  These are brand names and (generic.) Most people in this forum use the brand names but I tend to use the generic because that is what my Dr. calls them.

Before these drugs came out a1 was the least responsive hep c genotype to treat.  Although there is conflicting evidence on how harmful different genotypes are to the liver. They probably all do about the same amount of damage.  With the possible exception of some genotypes that are found mostly in Southeast Asia.  Doctors suspect that these genotypes r less harmful because of lower rates of fibrosis (liver scaring) and cirrhosis (which is like when the liver just becomes one big mass of scar tissue.) These conditions take many years to develop. In some cases never. Anyway I won’t get to technical.

When I was diagnosed, 3 years ago, treatment wasn’t done for a1 until these conditions started to develop.  There was only about a 20% chance of clearing the virus with Interferon and Ribavirin.  With such a low chance of success Drs thought it was better to wait.  In theory, treatment (even in unsuccessful cases) will slow the progression of life threatening cases of cirrhosis in people who needed liver transplants.  This bought time as people waited on transplant lists. 1 in 5 people with hep c developed advanced cirrhosis and ended up needing liver transplants.

This is why we are lucky to be newly infected now.  The addition of a the new drugs increased the chances of SVR, (sustained viral response) or clearing the virus, to about 75%.  Sorry about giving such a complicate answer to a simple question but this is a complicated disease and I’m trying to give u some information that I think u should know. I wish I had someone to explain this all to me when I was diagnosed.  I thought I was going to die too.

Anyway, with the 20% success rate. They wanted me to become VERY, VERY thin because hep c hides in fat cells.  Back then it was more important than it is now.  I started going to the Dr again about three months ago because I knew these drugs were about to b approved by the FDA and wanted to get treatment ASAP. My Dr didn’t even bring my weight up as an issue until I asked about it.  

The FDA approved the 2 new drugs two months ago and I’m just trying to get all my levels perfect before I start. I would have liked to have started already but there is a big rush to get treatment right now.  Millions of people who would not have been candidates for treatment before are now.

Remember, I’m not a Dr.  Nobody on this forum is.  I’m trying to give u a summery and I hope I got my facts straight.  If I didn’t I’m sure someone will read this and correct me. There are some people on this forum who are a lot more knowledgeable than I am.

[Danielle7]

Oh and my physiatrist is having me blood tested for like everything possible to make sure Im as healthy as I can get before I am weaned off of suboxone. She says the withdrawals wont be as bad this way.

[Danielle7]

Right now my wieght is about average. I've always been a big girl since Im so tall and big boned. I wouldnt say Im overwieght but Im sure I could lose some wieght. Ive started working out. You think a diet is also necessary ? What about vitamins ? Do you know of any that are used for wieght control ?

[kirk8]

Yes, I’m supposed to start in Aug. and u will need to take one of the new drugs telaprevir or boceprevir in addition to interferon and repairing. Dr told me that I wasn’t a candidate for treatment before these new drugs came out; so I’ve had some time to get in the best physical shape possible for treatment.  I found out what I had to do from blood tests.

These tests can b very helpful. I found out I had high iron so I stopped eating as many stakes and started eating more chicken. This is important because too much iron is toxic too the liver. I also learned that I have a fatty liver from drinking so I cut back and then quit. It took a while but I got all my liver enzymes back in normal levels and I lost weight because hep c hides in fat cells.  The thinner you are the better chances u have of clearing the virus during treatment.

Have a good trip and happy birthday to u both. My birthday is July 16.

[nygirl7]

hahahahaha it IS a great day, we are special :D

[Danielle7]

Okay I'll definitely ask him.

And no, my birthday is July 8th, I was saying July 9th is the day i fly out to NY. So we will have the same birthday (:

[nygirl7]

Danielle make SURE your doctor includes one of the new drugs if you can - the new PIs make the odds so much better for a geno 1, up from the old days with just interferon and ribavirin only having a 40% - 50% chance of winning to now when it is 75-80%. If he doesn't know about them then find another doctor.........run fast!

That is huge.  I had geno1a and 1b (I'm telling you I was a good awfully good at doing drugs ;) and beat them both with regular treatment cause they didn't have the new drugs out yet when I treated but if they had I definitely positively would have added one. For me I ended up having to treat for 72 weeks because I didn't respond quickly enough........you dont want to have it happen to you.  Get all the odds on your side and beat those critters up good!

So you are July 9th well that's just as good as July 8th at midnight we will both be on the same birthday ;)

[Danielle7]

Happy Birthday (:

[Danielle7]

I do plan on starting treatment after I get back from my trip. Im goin to up state NY for a horse camp the rest of the summer (starting the day after my bday, july 9). My doc wants to do the interferon and ribavirin. Are you planning on doing the same ?

[kirk8]

I am 25 and also 1a. I was a heavy substance user from the time I was 15 to 23.  Giving up the drugs and alcohol was the hardest thing I’ve ever had to do but after my diagnosis I realized I had to make a change in my life. I was able to cut back at first but had a hard time because all I did with my friends was drink all day and grow pot.

I was living in Humboldt County, CA where most of the good weed in the country is grown. I was able to get any drug for free at any time and people would come to my house and offer to get me high all day. They were shocked when I started turning them down because I had been doping up with most of them for years.  I was able to keep high all day, make enough money to get by and all I had to do was watch my beautiful plants grow.  I was a practiced professional at drug use and have done enough O.C.s to kill a person more times than I can count.

I was able to give all that up but I had to move to do it. I had to give up some friends who I still love but just weren’t helping me. It took a change of life to get me to give up drugs (especially boos). My point is, if I could do it, u can to. I’m not saying It’s going to be easy, life isn’t easy but if u face your issues head on it will b more rewarding.  My mind was the same place yours is now a year ago.  Now I’m 6 months clean and sober and much happier.

Also, I will b starting treatment soon and highly recommend u look into it. Especially if u have good insurance through your parents. We have much better options than most because of our age and the emergence of new drugs. U can likely be cured in a year and will never have any complications.

[frijole]

Welcome to the forum, Danielle.  Ditto on the method of infection -- 40+ years ago for me, and I still have a very healthy liver.  Good luck on the biopsy - they aren't bad -- I will be having one soon too.  

You will have a long and healthy life.  Good thing you have taken charge of it.

frijole