Hep C Discussion Forum

Gidday Nimbus,

I understand your concerns about the possible side effects (sx) that treatment (tx) can possibly bring on, but you have to realise that the list of sx are those experienced by many thousands of people all over the world collectively.  What I mean is most people experience a few sx, nobody experiences all of them let alone very many of them.  The majority of people experience a few sx, and at the same time others experience none at all.  While that all sounds promising, I wouldn't be honest if I didn't also say a small number of people also suffer quite a few sx, but they are in the minority.

I suffered qute a few sx and some were serious, but my case WAS unusual and I also had problems with handling the drugs, but chose to go ahead with tx when I did, and face the consequences, so I can't really complain.

While you are having trouble deciding whether to start tx or not, perhaps it would be easier if you had no choice and just had to do tx, or even worse, were not allowed to or able to start tx.  The reason why I chose to do tx and then continue when I experienced problems with the drugs and my body, was because the HepC had started to affect me in my daily life, and although symptoms were unnoticeable at first, after a few years it got worse and things began to progress fairly rapidly.

Many people that get infected with HepC will eventually go through similar problems, and in my case, the prognosis was for things to eventuate with probably the need for a transplant, if one was available.  Needless to say, because I was in the process of having been fully diagnosed etc; I chose to do tx, regardless of what would happen.  Once I started tx I encountered the difficulties I would have with the medication available, and was able to continue tx on a reduced dose, but for it to be successful, I had to do tx for 72 weeks.

To cut a long story short I went through the ups and downs of tx and only just managed to be able to stay on tx, by testng clear of the virus (UND or undetectable) at 24 weeks.  Since that test, I remained on tx for the full 72 weeks and continued to test UND at weeks 36, 48 and 72 weeks.   Since finishing tx I have remained UND and go for my 6 months post-tx test in a matter of days, to see if I'll be clear of the virus forever.

I tell you all this, to show you what might happen, possibly sooner than you anticipate.  This story is not about me, rather it is about you.  HepC tx has now got to the point that even someone like myself could have possibly only have had to do 24 weeks tx instead of 3 times that, like I did.  The results that  people are returning from this new generation of tx drugs are simply outstanding, and the stories you hear about all the sx are the worse case scenarios.  You never hear the stories about the heaps of people that fly through tx, sx-free. That's just not news-worthy and doesn't make good reporting, people are only interested in the worst cases unfortunately, unless they are people like yourself tearing your hair out about doing tx.

As Kirstin tells you, sure the sx exist, but all the bull about how bad it is, is an exaggeration.  Tx isn't a walk in the park, as I say, and yeh' you have bad days as well, but you only have to read through the heaps of pages of stuff here about people overcoming their fears and doing tx, and they have no regrets.

In my own case, if I were to fail after finishing tx, I said it and I would have no hesitation doing it again.  I've seen what the alternative is and instead I did tx and now I'm free of the virus and have pretty well recovered from tx.  I feel terrific and haven't felt this good in years.

I wish you all the best in making a well-informed decision about starting tx, and that it is in the affirmative.  Good luck.

Cheers,

Brendan.

Doable for sure ! Ambien for sleep, and AD's for the mental side effects, which can be huge. Drink half your body weight ounces wise in water each day. My liver was stage 3, HCV treatment is much more doable than end stgage liver disease...imho.

Some people you will see post don't understand the role of "sleepers" and "ADs" in treatment don't listen to them. It's the equivalent of saying procrit shouldn't be used to raise HgB should it drop
Good luck,

James

Honestly, the first few weeks werent that bad. The past few have been worse, mostly because of the insomnia but I have that pretty much under control now. Its doable, truly. I heard & read about all the horror stories as well, thought the worst but we manage. It's hard at times, but I manage

I can just tell you how I felt about starting Tx & that was this...

As soon as I found out about my hepc status I wanted it treated & gone.

Even though its been rough over the past few weeks for me (I am now in my 11th week out of 24) it's been a decision that I am glad that I have made. That day when I found out that I was UND@4  was the best.. I know I am slaying this dragon, I know that my life will be so much better without the virus hanging over my head, causing more damage. I wasnt going to wait till it got any worse.. It was a no-brainer for me but I also know everyone is different. I want to wish you luck with your decision. May it be the right one for you

as my sig states, I was diagnosed in 1991, and just started tx last week - decision made by my doc and me based on no fibrosis, no symptoms, family with (at the time) small children to take care of, history of depression in the family and cure rate just wasn't high enough to make the sx worthwhile. But with all the new drugs coming out I just started trials last week, and so far have had no sx - hope that continues! But the trial I'm on may be giving me the new interferon, Lambda, which has fewer sx. I do have the Cc allele, so I guess I'm lucky.

But, what I wanted to say is that you may not have the side effects, or fewer anyway. Find out more about your genotype, and maybe a trial would be good for you. Maybe wait a bit till this new interferon comes out more. It seems like we always hear the horror stories, and never the boring ones where everything plods along OK. As Ron said, it's a personal decision, purely based upon your situation.

I really should clarify that the quote I made about 75% of HCV cases, is from the CDC web site and it states that 75% "develop problems"

Dont ask me what that actually means because I have no idea.

As far as I'm concerned the CDC is owned and operated be the drug companies and they can say anything they want to say to promote the use of modern medicines.

Ron

For me it came down to being tired of feeling bad all of the time and just having the constant knowledge and worry to deal with. BUT, I was diagnosed 5 years before I made my decision. The good news is, depending on how long you want to wait, there may be treatment in the future that does not involve interferon at all.

Right now I'm going into my 8th week with interferon, ribavarin and teleprevir. While this is not fun, I have absolutely no regrets and feel sure that I will be able to beat this thing.

Best of luck with your decision and remember, this is not an emergency situation, you can do your research first and then decide.

pj