A FAQ : What Does Interferon Do?

I receive more email that is similar to these than anything else.

This drug has side effects worse than the disease, it usually does not work and if it does, people relaps and are not followed in order to not effect the statistics Schering wants you to beleive.
Lloyd

I would like help with the side effects, although at the 2 year point - I have gotten used to mood swings, fatique, and all the various other day to day things, such as chronic nausea, body aches, etc. I would like your input - My GI doc has clammed up (won't see me) and I don't know where to turn. I am going to see a lawyer, but feel he won't believe me either. I don't know anyone else in my area that has had my reaction.

Sometimes I feel like it is all in my mind. But I know that isn't true, I was an excellent nurse and highly functioning human being prior to peg - but so be it I suppose.

My family doctor who has been my only support, told me this week that this was probably as good as I was going to get, that the nausea, neuropathy, depression, and fatique were not improving. He is excellent and I totally trust him. I am waiting for my two year numbers to come back - I go see him in two weeks (gi doc has never even asked about labs., just denied me appts because I owed 125.00 no telling how much he made off me.

You seem to have a good pulse on the hep c world, Are there any people you have heard of from around the Charlotte NC area who have been affected?

I know I have to pursue this, but I feel so isolated. Is there a way to get a listing of lawyers who have handled these cases? I am really angry that my professional life will not ever be the same, I have ended up bankrupt (though working very part-time now), lost friends, professional respect and haven't felt really good for over 2 years. My memory is crap, and so on.

I feel like such a whiner - If there are products that could help and are not too expensive I would be willing to give it a go. After all I loaded up with Ped Intron until I became encephalopic. I crashed in June 02, was unable to do anyting until sept then just work 1-2 days a week, not good with a kid in college, but he graduated and is well. As far as I know my numbers are good, and I am Hep free (though we know the recurrance rate) but my new numbers come in this week.

The crazy thing is, my numbers were ok before treatment, my bx was less that one percent affected I never was sick and was 43 years old. I now find out my chances of ever being affected by the positive status were neglible.

Hope you continue to do well.
Thanks for letting me vent. I would appreciate any direction you might give me toward help.

Sincerely, B. R. NC

An excert from a email marked private.
Lloyd

No I am very aware about not doing the interferon. I have a friend who is
on the board of the hepatitis foundation in Washington (State) and they
used her for a guinea pig three times for three different combinations of
poison.

None worked and they almost killed her. She flat out told me DON'T TAKE
ANYTHING.

She is also a pioneer in this. Sadly has buried friends with it as well.

My Peg-Intron Story

Lloyd:

Thank God for your website. I was beginning to think that I was the only person in the world w/ a Peg-intron nightmare story until reading similar stories here.

A little background. Diagnosed in '82 w/ non-a, non-b hepatitis. When the test for HCV came out I was diagnosed w/ cronic HCV. I was told in '92 by Duke Medical Center that I needed a liver transplant. I refused, because I was still able to work.

Except for the normal problems; internal bleeding, fatigue, lose of appatite, extreme irratiblity, I was able to cope by following a vitamin program recommended by a medical doctor in Georgia.

In '95, after transferring to UNC Memorial Hospital Liver Program, I was told again my only hope was transplantation. Around '98 I was told that I was in the final stages of liver failure and would die if I didn't receive transplantation.

In January of '99 I received a liver transplant, and miracliously I was back at work by the end of March. At my annual checkup in January of 2002 I was told that the HCV had returned and my only hope was Interferon / Ribovirin treatment.

I started interferon alfa-2b and ribovirin treatment in March and in April, when my number came up, I switched to Peg-Intron and Rebetrol. The next 48 weeks was a hellish nightmare of violient behavior, mood swings, excrucating pain, vomiting, etc.

In May, I told my doctors if they didn't give anything for pain I was quitting treatment, they reluctantly gave me Vicatin 7.5, which helped some. They prescribed medicine for depression, but I refused to take it because it made me feel weird.

Somehow I managed to stay the course and still work all but three months of the 48 weeks, although my financee left twice during the time because of my crazy and sometimes violent behavior.

In February of 2003 the nightmare was to be over, 48 weeks of treatment ended, the HCV untracable, life back to normal.

At both my three and six month post-treatment checkups I still complained of muscle pain, daily nausea and depression. I was told that the side-effects would end, although because of being a transplant patient it might take longer than usual, I could take medicine for the depression, which I again refused.

It's May of 2004, the HCV is still untracable, but the side-effects still remain. The pain in my left arm is so bad I can hardly use it. I have muscle cramps in my legs and both arms (the Magnesium helps some), and blurred vision.. I feel like I'm in a deep mental fog. I have gotten in legal problems with the law, which I had rather not go into, which has caused me to lose my job. Although, truth is, I could no longer perform the rigors of being Computer Database Administrator.

I have to fight back thoughts of suicide on daily basis. I have no job and doubts that I could work. I have no motivation and all I want to do is sleep. I have my annual checkup at UNC on May 13. I don't know what to do. I guess they'll put me on depression medicine, a person can't walk around like a ticking time bomb! I'm a strong person, a fighter, not the lunatic I've become.

Please, is there any hope? I'm desperate.

CB.

RE: TLM

Lloyd

As of this morning, no more headaches, and I'm feeling better than I have in a long time! I guess with my advanced stage, it's taking a few days to get rolling.

Not to mention I have only been off the Interferon/Reebetol for around
three months.

Nasty poison.
That stuff is like poisoning the entire pond to catch one fish..

Matt

Another example of interferon failure with a opinion of it.
Lloyd

For Further Information Regarding InterferonTreatment Visit Interferon.WS