tx treatment and side effects

[Mordred]

Is there anyone here who doesn't have a tx side effect horror story from Hell to tell? What exactly does the tx treatment do to the virus? And why do a lot of people have to quit tx because of severe reactions? Someone told me the tx treatment itself can kill you, but I can't be certain if he knew that to be a fact or not. Is tx chemotherapy for the liver? Will your hair fall out and have you throwing up all day and night? And if you choose not to do tx, will the disease keep progressing and continue to trash the liver, even if you aren't drinking and doing drugs anymore? I'm curious about how long you need to be on tx, and how many shots per week one has to take. Hoping someone can clue me in on some of this. My specialist wants two months sobriety, which I've been accomplishing, so I'll see him in March. The price of sobriety definately does not come cheap. I've lost more than a few of my friends already because they think I'm insane for not drinking. I guess they feel like I'm no fun anymore. And in a way I guess they're right. There seems to be little fun when you're the only sober one in the whole damned club.

[Mordred]

That's one of my major concerns with hospitals. I had my gall bladder out a couple of years ago. In surgery the three choices of narcotics is Demoral, Morphine, and Dilaudid. I can't take Demoral, and Morphine is like a placebo to me; does nothing to get rid of pain. Dilaudid is the only one that eases the pain, and I made sure it was in my charts and on my wrist bands. Got wheeled into surgery on Dilaudid and wheeled out on Morphine. When I came to it was like I woke up with no pain med after major surgery. I'll never forget that day. From now on I'll have to be near death before checking into a hospital ever again. And Laika, I don't watch Pamela Anderson for HepC advice. I watch her because she is Pamela Anderson.

[AK - Hepper]

You can't predict the sides, some have it bad and some seem to breeze through. I don't think I ever actually threw up, but was pretty queasy for the first few weeks, then it went away.
I think I read somewhere that it is a form of chemotherapy but only about 1/10th of the dose for cancer. I lost a little hair, but it all came back. What was weird was hair started growing in places it never had before.
I don't think anyone has died from the tx. itself, a few have committed suicide because of depression, they will monitor you for that. I had to take a test every time I saw the nurse.
They have it down to 1 shot a week, now. Plus, you have to take the ribavirin pills, dose depending on weight. Most take 8 pills a day, 4 in the AM, 4 at night. They come with their own lovely little side effects, too. Riba rage, where you may fly off the handle at the least little thing. Really bad itching that will drive you up the wall.
Mostly, I just felt extremely burnt out all the time. The first day after the shot was pretty tough, I spent a lot of time on the couch feeling like ****. That's why they tell you to time your shot so the sides hit when you don't have to work.
You can't really predict how the disease will progress, either.

And, yes, staying sober all the time cuts down on the fun you'll have, but you will save a ton of money.Your friends will get used to you not drinking.
End stage liver disease sure doesn't sound like a whole lot of fun, either, though.

What's your genotype? 2's and 3's only have to do 24 weeks, that's a piece of cake. It's after that when us poor 1's start to really grind it out.

[Mordred]

Thanks to both of you for your input. I don't really feel sorry for myself. Just a lot of anger that my entire lifestyle has to stop. I'm genotype one. And that flying off the handle should prove to be an interesting sight to see since almost everything pisses me off anyway. I honestly don't know how you guys tolerate it all. I'm guessing it must get easier with time. I certainly hope it does. Thanks guys.

[cao]

I just finished 24 weeks (yippee) and while I wouldn't describe it as fun, I too mainly experienced fatigue.  No horrible vomiting fits, hair loss only noticible apparently to me (though I have certainly noticed it), no thyroid issues, etc.  It hasn't been a walk in the park, but for me at least, it was doable.  Every person is different.

[BarnGoddess]

I had no puking, no riba-rage, no riba -rash, no depression.
First week or two just felt crappy 3 outta 7 days. After  3rd week was  really tolerable until at 24 weeks when  my  blood counts, white and red, bottomed out. Of course I did have to stop TX at 28 weeks because I had a Doctor that "didn't believe in Procrit or Nuepogen". ASK ABOUT THAT  FIRST! It could mean the difference between having to stop tx or not.
I did have thinning of my hair at 15 weeks, growing of my eyelashes, and a few friends that  left because I didn't drink anymore. Not really friends afterall.
I still go to parties have many great supportive friends and my hair is thick as ever now. Only drink - drink I ever have is an occasional O'doughls n/a beer. Maybe 2 a month.
Oh.. I did relapse because of stopping Tx and have to wait for something better. I had cleared right on schedule till then.

Good luck and  hang in there.
April

[Mordred]

That's what I'm doing. Waiting to see if something better comes along. But I'm sure not fooling myself. I know the risks.

[new-sojourn]

I'm not saying to drink w/the virus.  i'm saying 'Kill the virus, and then decide!'  B/don't feed the virus now.

As to life style changes, I found not drinking was like realizing that I never had to go into a toys r us again.  I don't have to buy it, I don't have to think about it.  I just don't do it.

I still go to parties and clubs and concerts b/I remember them now.  Now instead of a wine snob, I'm a tea snob.  garlic connisour-do you know there are dozens of different varieties?

I just read that high altitude mt climbing-in the dead zone above 26,000ft., each breath kills millions of brain cells!  So w/ a virus free liver w/little to no damage, its safer to have a drink than breath some places.  just goes to show.....

[Mordred]

I'm getting smashed from all angles by people who seem to think their advice, suggestions, and treatments are "the ones" to follow. I know you aren't supposed to drink, then I turn on the TV and watch Pamela Anderson say her doctor said a few drinks at dinner is no big deal. A friend told me to quit drinking for about 6 months to give the liver a chance to rejuvenate, then I could start drinking again. One suggested switch to beer because it doesn't have as much alcohol in it. Once you've gotten the alcohol out of your system and been clean for 6 months it seems pointless to start the drinking and drugs again. Since I quit drinking last month I've had two friends who brushed me off and literally told me I'm no fun anymore. Great confidence booster. I had my parents lock my car keys in their safe the other night to keep from going out. I'm not "boo-hooing" or expecting sympathy from anyone. I just hope this gets easier to deal with as time passes.

[Laika]

It really will get easier.  It's getting used to a new reality.  Anything new i.e. new job, moving--is stressful, most people are uncomfortable with change.  Then when they get settled in, they wonder what the big deal was, right?  Letting go of your drinking buddies, whom you know as "friends", is hard, lonely.  But you have us until you can make new friends who will come to know you as a sober person and not have expectations that you're going to be their personal entertainment committee!  Right?

Hang in there.

[Laika]

Forgot to say:  please tell me you're not looking to Pamela Anderson for serious advice about hepC.

[SICKOFC]

My husband and I have known several people that have opted for treatment.  They tell us horror stories, and one patient has been having problems post treatment after eradication of the virus.  Made my husband think he didn't want treatment.  was going to tell the doc..no interferon.  HE SAID IT WASN'T FUN WHEN HE WAS ALL WORKED UP TO REFUSE TREATMENT AND THE DOC SAID HE WASN'T A CANDIDATE.
TODAY THE GI DOC SAID THAT HE DID NOT HAVE DECOMPENSATED CIRROHSIS, AND MAY BE A CANDIDATE FOR TREATMENT!  HE IS CONCERNED ABOUT HIS DECLINE SINCE THE LIVER BX. AND ORDERED MORE BLOOD WORK AND A TRIPHASIC CT OF THE ABD.  I'M GOING TO VERBALIZE MY CONCERNS TO HOSPITAL ADMINISTRATION, (SINCE I WORKED THERE FOR 20 YRS BEFORE RESIGNING), IF THE RADIOLOGIST THAT DONE MY HUSBANDS BX. SCREWED UP.  ON THE UNIT I MANAGED WE SENT PATIENTS EVERYDAY FOR CT OR US GUIDED BIOPSY.  I NEVER HEARD OF ONE STICKING THE CAPSULE OF THE LIVER 20 TIMES.  NO WONDER HE FEELS WORSE SINCE THE BX.  THINK OF THE TRAUMA TO A CIRRHOTIC LIVER.

[new-sojourn]

As I recall, you have minimal damage now.  One advantage of trying to clear the virus now and stop the damage is, you could go back out afterwards.

Now my liver is f****d, so I can never drink again.  B/if you have minimal damage and no virus, you could join your friends in destroying brain cells once again.

Its the hep c virus that is the killer, and the drugs(alcohol) just act like jet fuel for the virus.

Another funny thing I've noticed is that some 'tea totalers'-sp?- have just as much damage over time as some party animals.  so think of tx as just a temporary state, not the abandonment of a life style.

And I was one w/liver failure and so many problems b/cl'd quickly and had an easy time.  I do live in a medical marijuana state.  I told everyone I was takin 2 yrs to either beat this or enjoy what time I had left.  and I did.  and now 3 1/2 yrs later, we don't want to rejoin the 'rat race.'  We rediscovered our inner hippies.

[Jane_s]

Hi Mordred. I am up to week 37 out of 48 and I have been lucky to have less side effects that it appears a lot of people do. I did bet Riba rash in the beginning but mild quartezone cream cleared that up. I do get tired and achy but Panadol gets rid of the aches, I don't have an apetite and often feel nauseous but I force myself to eat 5 small meals a day (plus here is I've lsot 13 kilos) and I generall feel like shite but now it is a way of life and I don't remember anything else. I still function OK... go to work, out socialising etc - I sometimes have to force myself to do these things but I really believe a positive attitude is esential. If you lie around expecting the worst and feeling sorry for yourself then I think treatment will rule you when really you have to rule it - hope this helps!