Interferon Confusion

I am a 26 yr old male who is a new father, i found out about my hep a couple yrs ago. i recently saw a g.i. for the 1st time.  He sent me to have a viral lode test.  As it turns out i am eligible through his office for free interferon treatment and all tests because i am over 200 lbs. They are doing some study to monitor the effects of interferon on patients over 200lbs who supposedly have a lower success rate. i really know nothing about interferon so i am scared, if i wasnt married with kids i would probably just skip this oppurtunity but i dont want to die at 45.  He says the side effects will be just a little ache and pain but i will be able to work and go on about my normal life. i have heard things quite contrary. can anyone advise me on whether i should go foward with the treatment or not, and whether anyone has heard about these kind of studies. please help me im very scared and alone!!!

[jmjm530]

First, welcome.

Briefly, you first want to know what genotype (variant of hep c) you are. Then, especially if you're genotype 1, you would want to have a liver biopsy before making any treatment decisions, trial or not. Also, start asking for all copies of your blood tests.

Meanwhile, find out exactly what the trial involves. What drugs, what doses and length of treatment. Also find out if they allow rescue drugs (Procrit and Neupogen) and under what conditions. All this should be explained by your doctor but in addition you should ask for some sort of written paper detailing the trial point by point.

Once you collect all the information, and assuming you do decide to treat, the question then becomes is this trial better for you than other treatment protocols out there. Do you have medical insurance? A good medical insurance polidy should cover most of treatment outside of a trial.

Lastly, a some point in the process, you might want to make an appointment with a liver specialist (hepatologist) not involved in the trial -- best from even a different hospital affiliation -- and get their input.

Do let us know what the trial is all about. My guess is that they will be dosing the ribavirin higher, but it's only a guess. Of course an alternative to bumping up ribavirin if you're overweight, is to simply get down to your ideal weight prior to treating. This has been recommended to a number of folks here.

All the best,

-- Jim

[ChrisDDD]

I agree with everything Jim said, but if your doctor is talking about free treatment with only interferon alone, that sounds like the clinical trial I went through in 1999.  Since then, standard treatment is generally some sort of interferon with ribavirin, not just one drug.  Interferon by itself doesn't work too well.

As for the side effects of interferon, mine were extreme fatigue, shortness of breath, mental confusion, and occasional headaches.  I did manage to continue to work full-time, but it was much harder for me than it sounds like it is for some people here.  I also lost some hair, and was taken off the drug after 6 months because it didn't work, although it had helped my liver heal quite a bit.  I went through a second round of treatment with Pegylated Interferon and Ribavirin in 2000, and also continued to work full-time, go skiing and boating.  This was only to prove to myself that I could do it.  It was extremely difficult.  That treatment didn't work either.

For my third round of treatment, based on the above, I went on disability.  It was Infergen and Ribavirin, same sides, but I found it MUCH easier to deal with in that I could rest as often as I needed, drink tons of water (crucial on any treatment!), but was taken off of Infergen/Ribavirin due to retinal bleeding.  I'm hoping to get into the VX-950 trial for non-responders and will remain on disability until I get well.

You're young, though, so I bet you won't have anywhere near the problems some of us have.  I first went through treatment at age 44.  I'm now 52, and have no desire to prove anything to anyone about how tough I am.  I stay plenty active, including physical exercise, while not working.  My job is being held for me, and I can't wait to get back to work if I ever actually get treated and cured!

[Myown]

hi and welcome.
Jim gave you great advice. I would take notes of what he said or print it out so you don't forget to ask your doctor ANY of the questions he gave you.

Treatment is not hard on everyone. I just did the 8th shot and it has been a very easy ride thus far. If I didn't watch myself stick the needle in, I would sware this stuff isn't even in my body.

Try not to worry. I thought I was going to be laying in bed pueking all day with my hair falling out while I was contemplating suicide or something. Every sx I read about I swore I was going to get it and worse. Nothing! I just have a rash on my stomach these last few days, but now it looks good. I still have pink dots, but not as many, hardly at all actually.

You'll be fine. You are young and will probably breeze through it. But the advice Jim gave you as far as what route to choose as far as trial meds or current meds, really think that through. That is very valuable advice that will make more sense to you as you learn about the virus.

wish you the best! you're not alone. We are here for you, but that 'alone feeling' is natural, we all go through it, especially in the beginning.

[bobbyullc]

i had hep c 10 before you where born and just treated. relax all the odds are on you side. a biopsy rate liver condition from 0 - 4. unless you got this a birth the chances are you can wait for years. new drug are in final trials and around the corner