welcome eyore....yea theres new trials out w/out interferon..that triple w/incivek is brutal,,very,,people hospitalized fighting for there lives cause of that tx..u're viral load enzymes very good..i did interferon twice,,last almost killed me...now trial all pills,,undie day 8 on wk.14 of 24..i believe i'm beating it this time..u have time to search for a trial w/out interferon..thats my advise to u....and all man susan osborne,,rn,,and bubba aka jbtmx,,al got hospitalized all 3 very bad off..i must say that tx.. is to brutal and not always effective..u say 198..i've seen at least 4 people here who have had to stop or relapsed.....hers u some sites to research,,plus u work in a clinic u're drs there may be able to hook u up.. i say interferon free the way to go.................god bless........

http://clinicaltrials.gov/ct2/results?term=hep+c

http://clinicaltrials.gov/ct2/results?term=hep+c

I hate being the 1st to respond as I could not tolerate the tx. The worst part is we are all so different. I am geno 3A, and supposed to have the mild version, but since I stopped TX,
it is the only thing on my mind and driving me crazy.

Why did I stop tx? I did fine the first 7-8 weeks, and then it the treatment meds just really took hold of me.: , depression, headaches, low WBC, low RBC, sent to the ER, sent to a hematologist - he started talking bone marrow transplant, I got scared.
I thought the tx was killing me. I had raw open mouth sores, could not fight off any minor virus without getting ear infections, etc.
I can't even call it being tired, I was EXHAUSTED....
The RIBA RAGE for me was horrible. ALL THE MONEY WE WERE SPENDING WAS ALSO ON MY MIND....

NOW I AM KICKING MYSELF FOR BEING SO SCARED AND STOPPING. That I should have not panicked and stopped. IT IS SO IN MY HEAD NOW, I CAN'T GO A FEW MINUTES WITHOUT THINKING ABOUT HEP C, WHERE BEFORE IT DIDN'T PHASE ME THAT MUCH. IT IS MAKING ME A CRAZY PERSON. MY THOUGHTS ARE ALL MESSED UP AS hep c IS ALWAYS ON MY MIND.
I want you to hear some good stories too. I read them and they make my kick myself for not being stronger.
I just read of someone getting rid of it and never feeling better.

You are doing the right thing - ASK PEOPLE here. You will hear many different and wonderful responses. I have to go somewhere now or I would have posted later to let you hear some good stuff first.

I too think I have had it for about 25 years and then my enzymes
started climbing. mY VIRAL LOAD WAS OVER 3 MILLION.
As I said before, I didn't want to be the 1st post, READ everyone's, and then make a decision.
I wish I had this group before I started the tx, they are more helpful then my doctors.

Thanks guys to the first posters, don't worry about being the first to post. I know that Incivek is tough. From what I hear pryor treatment was tough too. I have alot of friends that went through the old treatment and it was bad but there still undie at 15 years.Yahoo. Like I said ALL opinions are welcome. I've been watching this site as part of my research and its all good. Incivek is BRUTAL but it is working, especially for people who failed before. But for someone like me, I might just wait for newer drugs that are easier. I'm just being proactive which we all need to do. Like I said i've been watching you guys and taking it all in. I really appreciate you guys being here because you guys are more knowledgable then the people that make these drugs.

IF it were me.....and I mean I am talking about Me...I wouldn't do the triple for my 1st Rodeo.....BUT there are ppl here that are doing it & doing it well...I am sure you will hear from them......

Eyore says..........."almost feel like my hospital is part of ongoing research of Incivek even though its approved, I believe there still doing studies to look at the long term side effects. "

And there in lies some of the problem.....................they do NOT know what the long term side effects may be:(:(:(

Learn all you can........read all you can ...........research all you can......then decide what is best for YOU.................short term.......long term...........

And........welcome to DS.........lots of helpful folks here:):)

I think its really important to prepare for triple tx before going in. You need to line up all your ducks in a row. A good hepc doctor that is on top of your treatment is vital. Also the person being treated must be in relative good shape going in. Meds have to be taken correctly. And blood tests can't be missed. I am going into my 14 week today. My counts are stable. I have been undetectable since week 8. I could not work while on incivek, but some people do. This is my first time on tx. I would be lying if I said its a breeze. But it is doable. Its your choice to be treated are not. Good luck

Amen, Debbear. My Doctor has 19 years treating Hep C and hes really pushing me to do this, That makes me wonder. Nothing against Incivek, It is a damn good drug that is working. But somebody in my shoes that might have time on my side, Thats why I want to get all my ducks in a row. The Doc already started me on MEGA vitamin D pills, 50,000IU every other week and celexa.

Hello Eyore. I am doing 3x and just finished incivek. It's rough physically as well as emotionally. It may exaserbate your panic disorder to some degree. And you may be right about the hospital wanting to continue to research. Your numbers & the fact that you have minimal scarring - 3 yrs ago anyway, may allow you to wait for easier drugs. Maybe go to an outside hepatologist to get another opinion.
@Loveall. I stopped my tx first time around for only half the reasons you did. I was upset w/myself for awhile, but what' done is done. Ear infections, open mouth sores, on top of all the other sx & low blood counts, not many would have chosen to continue. Dont beat yourself up.

Hey Eyore,
I am currently doing ribo, victrelis, pegysis. I did fine till week 10 or 11 and then started to get some sides like getting some infections and fevers. being tired(very tired). Not being able to get to far from a bathroom (not good for a dyed in the wool striper fisherman with center console!!). But all in all i havent had anything i can't handle! I know my doc told me the sooner the better, but this is a personal choice! find all info you can and study up. I was given meds to offset my PSYCO actions! Found could chew nails and spit nickles. Took about 2 weeks to strike the right balance. So far have been undi since week7!! To me it was a no brainer, but we all are different. just rember there are many in this group who will keep you and all others in our prayers however you go!! (I am one)
Good luck ii your decision making
Bill

Eyore, I was diagnosed 40 years ago and am 1A. Like you my LFTs are normal and my iver is in good shape. But I wanted to get rid of the hcv

I tried INF+Riba and the depression was terrible and the VL went back up as soon as I stopped the meds. Then came pegalated INF and i never went UNDIE

I dd 40 weeks of victrelis, not incivek (not sure why Vic was selected by hep doc), went Und at week 8 and am now 7 weeks post meds. The treatment was no picnic, but no depression and i didn't take anti depressants. huge fatigue, and then the anemia came it is was terrible. But no rash which seems common with incivek, and with victrelis you also don't have the huge fat requirement

Anyway, i survived, and the meds cleared out pretty quickly. Not sure if I'm just lucky or that victrelis clears quicker than incivek

For me, and its obviously personal, even with normal lft and no liver damage i never felt confident that liver damage was not right around the corner. Which is why i decided on a putting up with the treatment side effects a third time.

FYI, the first time i did Inf + riba was part of a clinical trial. I'm not sure I'd do that again only because even less is known about the immediate impact on your body, and nothing is known about the long term effects. Of couse, little to nothing is know about hte long term effects of even the approved drugs. I believe I read in a Merck brochure that most men will look like George Clooney 5 years after completion of Vitrelis. I am willing to settle for that level of reduced sex appeal and good looks if I can cure Hep :)

It is a hard decision. Wait or not wait. I had it for 30 years, did tx twice and when Incivik came out with great results for prior tx'ers with 1a I decided it was time. I'm 53 and had insurance and was sick of being tired, knowing the liver would eventually just get worse.

Because you have panic attacks, keeping up with your doctor with the meds for the panic will probably be crucial. I think you should give it a try.......it's hard but when you get rid of the Hep C you will be happy!

My doctor really pushed me to bite the bullet. I think his thinking was that it may be three to five years before the new drugs are fully approved, my liver was still in good shape and therefore I can hopefully get this thing behind me and live a normal life without the worry of hep c. My viral load was also in the 800,000 area, my enzymes have always been normal and the fibrosis test this year showed 0 fibrosis. I did show some minimal inflammation in a biopsy about 4 years ago. Some of these new meds sound really good so do your research. The triple was very hard on me but I am done in 6 days! Welcome. We are with you!

Hello eyore and welcome.

I used to get panic attack and learned how to stave them off for the most part and now get them very rarely but they caused me a lot more grief than hcv. I am on a trial. I was afraid to do RIba/IFN. I was afraid my fragile mental health wouldn't be able to handle it. Afraid I'd freak out and do something drastic to me or someone else.

It's pretty standard to take anti-depressants during tx and I'd say it's imperative for you. I find AD's and tranq's work pretty well although I'm not currently taking them. Lexapro and Xanax was a good combo (so was vodka and vicodin too but that's a whole different story :-)

I don't know if you should treat or wait but I deliberated for a while and ended up getting on my trial which I researched and pursued.

Vertex is currently conducting new trials with Incivek- some for triple tx for 12 weeks and some with a forth drug thrown in and probably others. I don't follow those trials that carefully.I'm not sure I would not do a trial with Incivek at this point since the understanding is that you cannot use it a second time due to resistance issues. If I were to do triple I'd do the normal approved protocol. But on the other hand, I think 12 week trials got good results...I'm rambling, sorry.

Your clinic is WRONG in claiming at 99% cure rate for 1A, CT. I've read all the studies and that's simply not true. You have an 89% chance of SVR if you're eRVR (UND at Week 4 and 12) and 54% if not. The overall SVR rate was 75% (based on ADVANCE and ILLUMINATE studies). .

Sorry about the long-winded response, I'm over-caffinated and keyboard happy...good luck!

Edit-
I meant to say "I'm not sure I WOULD DO a trial with Incivek at this point " and not "I'm not sure I would NOT do a trial with Incivek at this point"

I asked DS for an edit button repeatedly but they have not obliged.

I just finished 3tx with incivek a couple of weeks ago, did 6 months. It was hard, but was much easier for me than most on this forum. My main complaints were fatigue and skin rash. These did not improve after incivek was over, the only thing I can blame on incivek is pain using the bathroom. I was undie in 2 weeks! I would talk to the doc about your panic attacks - some here (bellamin) have a problem with that and I don't think she got them before tx. My doc thinks new meds are more like 5 yrs away. Once liver damage begins it can progress very quickly (mine did) and I think the worse the damage to your liver becomes the worse the side effects of treatment will be. I say go for it now and if things don't work out, then wait for something better. Just don't forget to talk about the panic attacks with your doc, I know they can be awful. I know you will make the right decision - good luck to you!!