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Starting treatment

I have genotype 1, stage 2 fibrosis, ALT 110 and titer of 200,000.  Doctor said the titer is low so that is in my favor, but I have the hardest to treat genotype 1, so that's not good.  I just found out I had hep C a few months ago, but I imagine I've had it for about 10 years.  I'm going to start treatment of peginterferon and ribavirin in a few weeks for 48 weeks, and I'm scared to death.

With my stage of fibrosis and genotype 1, do I have a chance at clearing up the disease?  I don't drink, but since I found out I had the disease, my depression has worsened (I have had depression for years), and I started having panic attacks that I am now taking medication for.  I'm interested in finding out how treatment has gone for people like me...whether chronic hepitits can be cleared even if it's progressed.

Also, I've heard that the drop out rate is high.  What causes the drop out rate - is it the side effects?  I've read that it drains seratonin, which is bad for me because I'm already depressed.  I switched my depression meds from cymbalta to lexapro when I found out I have this disease.

As for the side effects, I've read that the most common are flu like symtoms and fatigue, and the best thing to do is drink water.  Do a lot of people experience nausea and vomiting?  I'm an extreme emetaphobic - meaning I have a great fear of throwing up, so thinking about this has really stressed me out.  Plus, I work a busy full time job as a manager.  I've told them and they are very understaning...they're going to give me extra vacation time and a work at home schedule for when I'm sick, which is good, but I'm still scared.  So scared and my biggest concern is I'm going to be deathly ill, throwing up all the time, and that my disease has progressed too much and it won't go away.  My doctor is giving me a 50-50 chance.

Any advice is appreciated.
Thank you,
GG
7 Responses
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Avatar universal
To: anyone
Hi everyone,

My dad has been diagnosed with Hep C. it's the worst something-or-other of hep c.
He's only 50 and I'm really worried because his friend recently died of Hep C.

Dad's a bit of a rocker by trade and a hippie and i know when he was younger he did his fair bit of drugs so i guess that's how he contracted it.
He's also a bit of a hypocondriact and as a family, my mum, brother and I sometimes don't know when he's really ill and when he's just moaning.

At first he said he wasn't going to do interferon, he tried doing the chinese medicine and started to feel better but his blood test results showed he wasn't improving.

So he's gonna start treatment in December.
I want to convince him to wait after chrismas as it's the first year i'm back in england for christmas and i hate the idea that he won't be jolly daddy on the day.

Dad's always gone through phases since i can remember. mood swings. when he's jolly he's the best dad in the world, and he's a musician so on stage and around people they all think he's bubbly and wonderfull
but sometimes he'll just spend a week in bed complaining of bad tummy or head or exaustion. He takes sleeping pills and never gets a nights sleep. He does milk it a bit and when he's grumpy he's obnoxious and he and mum argue.
Mum tries to be caring but i think she gives off a vibe of "bring yourself together, do some work and pay some bills".

That's the other thing.
When dad starts this treatment, he's gonna be in bed. he won't be able to gig, or do any transcribing work he normally does, will he? I'm so scared i don't want to see him change, all this stuff about memory loss you guys are saying...

Is there anything that can help the side effects? anything I can do to make it better when he's bed ridden??? anything dad should be eating?

I'm 22 and don't live at home anymore but i'll come back and check up on him.

Basically i guess what i'm trying to get out of this is this -

Does EVERYONE feel like **** when they take these drugs.
How many people ACTUALLY get better from taking them,
During the months your on interferon do you EVER have a good day?
Will Christmas be a nightmare?

Can someone give me some bit of hope because all my dad's been told is how awfull it is. How he's gonna loose his beautiful long blonde hair and how he's barely gonna be able to get out of bed.

Is there any funding my mum can get to pay the bills because dad won't be working? He's never paid national insurance in his life so is avoiding all questions about funding because he's scared he's gonna get stung.

What a frigging mess.

Jo
x
Helpful - 0
1051313 tn?1284780795
I am similar to you, as far as Geno, fibrosis etc., I put off treatment for 17 years, afraid of what it would do to me.  It really has not at all  been what I feared.
After my first shot I had so much anxiety waiting for it to hit,  like a tidal wave of sickness, but it never really did.  I remember thinking, "I still feel o.k." It is , at least for me, more subtle, but ever present. Nausea was mild, more of a mild yucky feeling, usually subsiding quickly.  I have never ever thrown up. Dizziness is subtle, like holding on to something for a second. I get headaches and take motrin or Tylenol. I remember once thinking for sure I had caught a cold.  My Dr. said it was classic side effects. I feel tired all the time but still function.
But for me, I went in as healthy and strong and positive as possible, and it is not all horrible.  It hasn't been easy, but  not the nightmare that I expected.
Everyone is different, but from what I hear, most of us do fine during treatment, even with the bad days.
Don't worry. Eat healthy, move around, sleep and don't feel bad about feeling bad.
Oh yeah i am about halfway through and my virus is undetectable.
V
Helpful - 0
87972 tn?1322661239
That is correct; the new definition of low viral load is <400,000 IU/mL; in fact, I believe the E.U. allows genotype 1 patients with low viral load that *also* achieve rapid viral response to reduce treatment duration from 48 weeks to 24 weeks; however this has not been established by the US yet.

Bill
Helpful - 0
Avatar universal
Thank you so much for posting your comments.  My partner gets on me all the time about being negative, and tells me not to think about it until we get there.  It's just hard, I feel so helpless.  I have every intention to buck up and start this with determination, and don't want to be the person that drops out.  

So based on what you're saying, my low titer number is a big plus, even though I have geno 1 and second stage fibrosis?
Helpful - 0
717272 tn?1277590780
I was 1b with VL of 275,000 on day 1 of TX and an unfavorable biopsy.  I cleared in a week.  I know you are looking at the negatives so that you won't be too disappointed but a low VL is very favorable and increases your chances of clearing early, which is also a good indicator for SVR.

Lexapro is a good AD for TX.  I had every side effect in the book but did not have the flu-like shot reaction and NEVER had nausea or the common headaches.  You just have to get into it and see how your body reacts to immunotherapy.  You could have lots of side effects or few.  Just got to try it.  You'll do fine, but you really need to brainwash yourself into sticking with it.  Keep in touch with your doctor and he will help you manage any side effects that occur.  TX is a drag but it is bearable.  You can do it.
Helpful - 0
87972 tn?1322661239
Hi there; and welcome to the discussion group. It sounds as though you’re fairly well informed; continue to read and ask questions here as well as elsewhere. Most people deal with a little nausea, but rarely loose their cookies; although it does happen. You can ask your doc for antiemetics if the need arises; there are a number of them available.

Yes; chronic Hep C is curable; at least from a clinical perspective. I had genotype 1a for probably >30 years, and it is now behind me. I treated twice, for a total of 152 weeks, but it’s now gone. The term we use for this is ‘SVR’ (Sustained Viral Response); this is achieved by completing the meds while becoming undetectable for the virus, then continuing to remain undetectable for a period of six months post treatment. If this happens, you have greater than 99% chance of this never recurring.

Read through ‘Janis and Friends’ website, including any subject of interest in the section ‘other HCV information’ located in the right hand margin:

http://janis7hepc.com/have_you_been_just_diagnosed.htm

Best of luck to you—

Bill
Helpful - 0
Avatar universal
HCA
Your assesment is unduly pessimistic.
I have done the treatment whilst doing a high powered job and got by.
Vomiting is not common-most people feel a bit rough,some sail throught it and a few find it very hard.
Your disease has not progressed to a critical stage.
The key to beating Hepatitis C is to knock it out quick-if you reach undetectable status after eight weeks treatment or better you have an excellent chance of being cured.
You are clearly very anxious but I suspect you will find the reality less daunting than the prospect!
Helpful - 0
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