It's a paradox, isn't it; you had hcv and felt fine. You were successfully treated for hcv and you now feel terrible. I really wish this wasn't the case for you; I wish you felt as good as before. I appreciate your warning about treatment and agree with you that people should really do the homework as there is much that can go wrong. It may be easier for me. What you describe as post tx symptoms is rather along the lines of how I have felt everyday for the past six years, minus the headaches, except I haven't had treatment yet. Unfortunately for me, I don't think I will be able to endure too many more years of virus ravishing my body, so successful treatment has become an increasingly pleasant daydream for me. I may end up feeling even worse after tx, I don't know. I certainly hope not, but one thing I can tell you is that you can wait too long and the repercusions can be rather unpleasant, too. Lets hope 2011 is a year of improved health for all of us.

Robin, I met with the drug company before and after tx and there was never a mention of most of the sides I have. UCLA liver clinic called the Roche medical liaison and Roche states they are unaware of any long term side effects and they are also unaware of any reported. That was last month.
What do you mean- how did I get through tx? i took my shots , swallowed my pills, drank my water and felt like shit. I had my fair share plus some but that was only 24 weeks.

keep in mind that this is a hepc support group not just an interferon support group. I think there are others that would disagree with you regarding this is the way to battle this. My point in writing this post is to make others aware of the long term dangers of tx. I'll write it again next month

mcslo I think your point -that this is a hepc support group not just an interferon support group...is an excellent one....I have Hepc...I have decided against TX...I am ever cautious as to not offend anyone who decided to do TX....I know people disagree with me...but I won't do TX...and I do not try to market my beliefs on the main....if someone asks...I will talk about it...BUT I am not a lessor person because I am not doing Tx....And i do think that the drug companies are just after their bottom line...what is cost effective to them....Believe me Ptriss...i do not want to die a slow horrible death from liver failure...but I believe it is appointed unto man once to die...and meanwhile I am trying to live my life to the fullest....

I had Hep C for probably 25 years with no symptoms, felt fine, enjoyed life. I never took the treatments because of genotype A1 and have very little chance of the Hep C being irradicated. Then a year ago, seeing my enzyme levels suddenly go way up, I found out I had early cirrhosis and liver cancer (HCC). I was put on the transplant list and was lucky enough to get a transplant in 3 months. Now, 6 month after transplant, the Hep C is back worse than ever and the transplant doctors are practically demanding that I take the treatments. I now know that Hep C is more aggressive after a transplant. So at the age of 66, and still dealing with taking immunosuppressants for the rest of my life that keep my immune system low, I have to decide about taking Hep C treatments. I feel good right now and am back in church, spending time with my grandchildren and enjoying life, so why would I want to spend the next year sick from treatments when they most likely won't help. And of course, the doctors haven't mentioned to me long-term effects after the treatments. I'm already faced with long-term effects from the transplant. Their job is to keep me alive as long as they can, but like you said, there's life then there is quality of life. I'm praying about what to do, and haven't made a decision yet.

This is something I've been struggling with lately, and I see both sides. At this point in my tx, 36 wks, I'm pretty much bed-ridden, too exhausted and sick to do much of anything. I am concerned with how long it will take to recover and possible new long term illnesses.

Robin, you mentioned that many people "would do anything and sacrifice anything to be free of this disease."...but really? anything? Since I've been on tx, so much has happened within my family that I really don't know if it's gonna be worth it, esp with not knowing at this point if I will be SVR.

My 15 yr old daughter has left home, is living with friends and refuses to come back home. I don't know that we will ever have the close relationship that we used to have. My child is definitely not something I would have been willing to "sacrifice" to be free of this virus.

Also, my 14 yr old daughter is now pregnant, due May 25...about 5 wks after finishing tx. I worry that I'll still be to tired to do anything, and I have to be able to function to help with the baby.

I absolutely did not do enough research before starting tx. If I had, I would've at least waited for the new meds and possibly until my kids were grown.

patty, i hear what you are saying. this whole thing has taken a ridiculous toll on the few i have around me; the worry, stress and sadness at seeing me so sick for so long, it really did change everything. it sure does bring out everyone's true character. i lucked out and had only two remaining people in my life (which once was overflowing), my daughter and my boyfriend, without whom i would not have succeeded. we all had full knowledge of the risks, especially with a study. both of them fully supported my decision to treat and they never wavered in their help, 24 hours/7 days a week. for those who dont have this kind of support, my heart goes out to them and i have no idea how someone can go thru the whole thing with a lot of stress from others. so, i ask you, was all the stress in your family there before tx also? or did the tx just fuck everyone up? and would you feel the same way if you were told today that you were svr? it is a personal choice, i agree and for those who choose not to treat and are able to go on with their lives, then kudos to them, i personally could not. i have a friend who is an author and has hep c. has had it for 20 years, decided not to treat. he says "i am going to live my life as i choose and if my little friend, hep c wants to come along for the ride, then so be it." and that is yet one more philosophy i hadnt heard before. its good to learn.
robin

Robin...There has been stress in my family for yrs, and that's why I waited over 8 yrs to do tx. I kept waiting for "a better time" which never came. I didn't know that tx would make things ALOT worse.

I trusted the Drs that recommended immediate tx, and not waiting for new meds after my biopsy that showed st2/gr2. I thought I had done my research, but really I was clueless. I joined DS about a week after my 1st shot and hadn't really talked to many people who had been through tx.

I've come close to stopping tx many times because of the constant drama and stress, which makes my physical sx worse, and now I have the added worry that I won't feel better after tx. I'm still questioning if I should finish or just quit now and take my chances...and if not SVR, possibly consider tx again in 4-5 yrs.

Good for you Mcslo! We really DO need to talk about POST TX Sides!!

I have seen so many jump into tx, not knowing fully what to expect after tx.

I'm at 14 months post tx, and my issues are> poor vision, lower body temp, achy joint pain, memory loss, fatigue, insomnia, and it must have killed my taste buds, because now I enjoy fast food! (I'm really embarrassed to mention that..lol)

Still, I'm glad I chose to treat. I knew what I was in for, because of friends that went through tx that said they don't feel like they did pre tx.

I do believe everyone should be aware of AFTER tx. We know what the drugs did to us during tx, and IMHO they are going to leave our bodies, about ten years older.

I chose to do tx because
1. I was a geno 2.
2. My liver condition and viral load, LOW and no scarring or fibrosis.
3. My age and health
4. Family support.
5. Non smoker, lite drinker, and was not on any meds.

It took me 8 months to decide. I researched and listened to people post tx, as well. Would I do it again, knowing what I do know? Maybe, yes. Leaning towards the yes..

AND, tx has effected my teeth, making them brittle. Just broke one a bit ago.

.. and just look at me! Where the heck did all this fur come from????? ;)

Hahaha! THe WATER! All that water we had to drink.......lol

Tom, I hear what you are saying. I'm back to sleeping my life away. In bed by 7:30 p..m wake up, get my daughter to school, back asleep until noon or later. Have every test possible ran. My back and joints hurt so badly. Was feeling FANTASTIC until this week. Hopefully, it gets better.

slo, you have to rebuild all those lost muscles. 10 months post id expect you to be exasperated. im betting in another 6 months youll be feeling stronger. at 10 months post tx i was still exhausted enough to fear for my earning ability..the future seemed uncertain.. i would gladly change positions with you. im old, dumb, tired, poor vision and bad tinitus . ( and hcv + )
your lingering sides surely beat the hell outta liver cancer..

Oh,capn, stated so well. You betcha better than liver cancer.

Sandee, I'm with ya on the nap schedule. Chronic fatigue sleeping my life away. But otherwise, no complaints except still have hcv.

I decided against tx early on....quit drinking...tried my best to be well but about 8 years into that, I developed cryoglobulinemia caused by hepc.Then I was told that I had no choice but to do tx....By that time I would have done anything to get out of the pain I was in...I could hardly move at all...0 quality of life...Now almost 6 months into tx,I feel so much better...my pain is controlable...I can walk again and I am a rapid responder..Geno 1a... I don't like the tx sides that i do have but I am still hopeful for that light at the end of the tunnel...Personally, I think it is better than a liver transplant anyday!!Wishing you much better days!!