Debating trying it again - Please toss in your two cents

I am 43, 1a, vl 6,000,000. Had it for at least 20 years. Maybe longer. Bx showed Fibrosys stage 3.
Tried tx, went 17 weeks, could not take it any longer. Depression, anger, anxiety, etc.
At 12 weeks, vl was down to 30,000.
Now after my last followup visit the Dr said if I could get "Certified" OK by shrink, I could go again. Also, he mentioned clinical study underway that I would be eligible for.

Now I just don't know what to do. I am bummed by the fact that I could not stick with tx. I thought I had time to wait for next tx options, but now I am not sure.

And am I right in my understading that AST, ALT, and BIL values are not indicators of damage occuring? Also, viral load is not an indicator of damge being done?

So, I have no way to tell how rapidly the damage is occuring, I have failed tx, I have no options other than to try and enjoy life?
I find it kind of hard to enjoy life under these conditions. (and I know that there are others worse off than me)

Factors leading me to quit tx were:
Not clearing at 12 weeks - thought at the time I had slim chances of clearing if not by 12 weeks.
Hyper sensitive to stress. Easily angered, when angered had extreme reactions to situations. Screaming, crying. Very emotional. Not able to control myself, breaking things, etc.
Not able to work, running out of insurance, worried about job.
Depression. After quitting tx, attempted suicide. Did not tell GI doc. Still did not tell him.

Does my suicide attempt preclude me from future tx?

[Amerabrit]

I am so terribly sorry that tx was so hard on you... You know you have to tell your Dr. about the suicide attempt, don't you?  There are so many different Ads on the market these days, maybe he can prescribe an Ad before you start tx again, one that will work well for you and then, after another evaluation you could discuss tx once again?   It's ok to get help for this, truly it is.  You are important, your life has meaning, please take care of yourself...

[snook_man]

You are in a tight situation buddy..Real hard, and totally up to you..Many have probably told you already, there are two paths, the one you take, is up to you!! Get on AD's, before tx. Talk to a shrink..Get your mind made up, that this is what you want to do, and all that you can do..It has to come from within, and you need to be confident with your decision. No one can tell you what to do, or knows exactly how you are feeling. I tried to explain this to my family, and I do not blame my Dr for pulling me off meds, as I was not confident with my decision.. Now, I am armed and ready, and I want to kick some @ss!! Your name suggests the same, so keep your chin up, and fight this damn thing!! You have a family that needs you, and a group to lend you support.. Of course, I am just a certifiable loon, so get your advice from a qualified Quack!! Best of luck with whatever you might do, and wherever life might take you!! Snook

[cuteus]

I shared those same fears that are now working on you and pushing you to consider tx. I could not think of the "be happy with hcv" idea, there was no way I could get to that point without trying tx first. You had a great log drop, but your mental condition was severe and needed more closely monitoring. maybe they can do that in a trial, but you must check that depression is not an exclusion to that trial.
You remember that study tnguy linked us to? those subjects who developed major depressive disorder had a higher SVR!

Now, I'm in trouble since i did not get depressed? talk about a reason for been depressed...
good luck

[layla]

I am wondering if you suffered from depression before tx or if it all happened then? I think just the stress from being dx'd and all the worries that go along with it like you mention, can you work, insurance, etc. are big factors that contribute to stress in addition to just the meds. This should all be discussed with your doc. Perhaps you can get settled onto a good AD that worked well before you did tx again if you chose to do so. I would be very worried about such extreme depression. You really to need to have that in control which it sounds as if you did not again I am not sure if this was nnly while on tx or before also. I imagine this is a very diffcult decision and I wish you the best in making it. LL

[honey1616]

This is something you would have to check out thoroughly before starting again.  First,,,you would have to tell your dr all so you could talk about the best ADs or support you would need to start.  Were you depressed before tx and I mean even before finding out you had hep?  Because I never suffered depression but of course when finding out I had this,,,,its bound to make you down.  They do say,,,Depression for years tends to not do great mixed with tx so you would have to answer these questions yourself. You do know what tx is like so only you with your dr could answer,,,if you could handle a 2nd round.  Maybe even starting a smaller doseage to begin with like Dr Cecil does to get your body to adjust slowly,,,,,I don't know the answers to your questions Want2live,,,,but you do have us here for support but then you know that also...Wishing you the best in your decision!!

[landfill]

I'm 62. I finished tx in 8/03 and I was negative in 2/04 so I'm SVR.  The psychiatric effects almost made me stop.  The physical sx were bad but I could put up with them.  I had a 2 log drop at 12 weeks, like you, and I didn't go negative until week 18.  I had a riba dose reduction for 4 months, week 5 through 20 because of anemia.  You had a good response to the drugs.

I didn't start antidepressants until the 4th month and by then I was beside myself with anger and obsession with decades old experiences.  It didn't go away when I started taking them but I don't know what it would have been like without them.  I'm still taking them (bupropion and buspirone).  If I had to do it again I would start the ADs with the tx if not earlier.  The psychiatric symptoms hung on for 6 months or so after the end of tx.

The virus is hitting your liver hard.  Next stop cirrhosis.  You're right that VL and enzyme levels aren't good indicators of damage.  I think that the rate of scarring accelerates as you age and your chance of SVR diminish.  I know that a history of depression and suicide attempts are reasons for not trying to treat it, but not treating it is dangerous, too.  I'd tell the dr everything then get a second opinion.  Good luck to you.

[tina-b]

WOW! Does what you say about the anger (pure old hateful mean) sound familiar. My man is on second tx, relapsed after 24/24 last year. He is 3a 31/48 now. He was getting soooooo bad, I told him, either take all the AD and anger meds or quit the hepc tx. It was that bad. I couldn't do anything right. Neither could our kids.

It got soooooooo bad that our son (my mans favorite person in the whole wide world) said he should quit the tx. I explained  to him that Dad has to take them to get cured or he might die......I ask him if he wanted that and he said to me..."I just really don't know, but I don't want him like this." Quit a sobering thought coming from an 11 year old man.

He is taking Lexapro, marinol and ativan to keep him from having so many outbursts. It is just nutz! He is a big guy and really laid back when he is his normal self so these outbursts can be pretty rough.

His answer was always that he is taking enough pills and doesn't want to take anymore. He is now taking all the meds like they have been tx'ed for him and he is acting much better. WHEW!

Since his last labs, (the heptimax coming back good) he is in much better spirits. He left for work on time today and it is 5:30pm and he is still at work so something is working.

There is no doubt that these are some rough meds and the sides are unbarable at times. I don't know how you all do it.

God's Speed All!

[britgirl]

May I ask if you were on Pegasys or peg-Intron? My nurse said that they had found fewer psychiatric problems in patients taking the Pegasys. It might be worth be trying that if you decide to treat again.

[BNR]

My doctor requires that his patients be on anti-depressants while on treatment.  In fact, you start them before treatment so they can be working when you begin your regime.  I did 3 rounds of tx (1b) and didn't obtain a SVR so I know at some point I will have to go another round. However, I can't imagine doing this stuff without ADs. Why put yourself (and your family and friends and co-workers) through that horror?  A patient might think that they are handling the depression sides okay, but I'll bet family or friends have a different story to tell. You definetely need to discuss your suicide attempt and depression with your dr, and as suggested, a second opinion never hurts.  This is a hard decision for anyone to make and being depressed makes it very very tough to know what's best.  Please, please talk to a dr about your depression.  The wonderful people here in this forum will support whatever decision you make, but you must get the depression under control.  You are in my prayers.

Pam

[want2live]

First, thanks to all that replied. And thank you for your compassion to my situation.
Layla and Honey, I had a little depression now and then before dx, but no suicidal ideations or anything like that, just normal life ups and downs like everyone else. I did drink alot to deal with stress, which I know is wrong. I don't drink anymore.
Brit, I was on Peg-Interon, I will look into the Pegasys. I always thought (maybe wrong) that the damned Riba was the culprit in my anger/psychotic behaviour. Hard to tell. I know I hated the Riba's "jacked up" effect that it had on me.
Tina, please hang in there. Your man does not mean to be that way. I know my poor wife had a very hard time watching me sink into madness. There was nothing she could do for me and felt so helpless. With 3a he has a good chance. Please keep him fed, even if he does not want to eat.

That reminds me, a major factor for me during tx was my Hypoglycemia. (I discovered this accidentally)
With no appetite, food tasting funny, and feeling like sh*t, eating was not exactly high on my list. The worst thing I could have done. And sugar is poison for me. When I would feel like eating, I would pig out on comfort foods. Bad idea. I feel much better now that my Hypo is under control.

Thanks again for caring about me everyone. I care deeply about all of you too. I don't know how others make it without the ability to talk to others that KNOW what this is like.
Everyone else is just a spectator, we are IN the game.

Now I am off to look for another Dr (I HATE his HCV nurse - even without all the meds she is a 1st class b*tch), off to find a psych that has HCV experience (my last one had NO HCV experience - thanks Aetna), and hopefully on my way to kill this dragon!

[mikesimon]

Good luck in your search for better care. I agree that Pagaysy would be worth investigating. While I was taking peg-intron all my sides were considerable worse including the emotional ones. It's worth a try I think. I'm not convinced that the ribavirin is as significant a factor in the mental sides as is the interferon but I could be wrong on this. I believe I have read this somewhere. For the hypo I'd keep as much fresh fruit around as I could. That shouldn't be too hard to eat and the benefits are many. I think if your doctor is aware of your history you will be treated prophylactically for mood problems and monitored very closely. I think you can do this safely with the right doctor and complete disclosure on your part. You are well aware of the benefits to your liver of tx so that in itself is probably reason enough to try again. And you were responding last time so I wouldn't think you've had significant deterioration but if you and your doctor are concerned enough a biopsy would tell the story. I know they aren't recommended more frequently than evey 2 to 3 years but it is an option if you push it. It's a tough decision but I know you'll make the right one. And although I can feel through your posts the dread I know too well I must say that I'll take this dread readily over the despair I felt in your previous post. You show me strngth and determination and that means a lot in this fight and in life in general. Stay stong my friend. You'll be okay. Mike

[fsplink]

I'm happy to see you're going to try again. I agree you maybe should get on some ADs for a while before starting tx. That way you'll have a good base to start from. I'm on Lexapro now and I still have outburst at my husband. I can't imagine what I'd be like without them.

[cuteus]

I hope there is a major research center close to you that you can use for tx. Mine is, and they had me complete a Beck mini mental electronic survey, every month to monitor any changes that might signify depression. Nobody here has stated that their GI practice uses this diagnostic tool. It gives the GI practice first glimpse at a possible crisis, and the chance to intervene early. They insist on  monthly visits, which I find tiring, but I can see the purpose for it.
Good luck in your search