Hi, my name is Sally and I would like to share my story dealing with the hepatitis C virus. I was diagnosed in the spring of 1998. I had been experiencing a lot of heel pain in my right foot from walking during daily exercising. I went to my Internist for an evaluation and treatment. She did some routine blood tests and everything looked normal. I had hepatitis B in 1982, so I was told at that time, to periodically have my liver enzymes tested. My liver enzymes (ALT and AST) were in the normal range. She gave me a prescription for a high dose of Ibuprofen for the inflammation, sent me on my way, and told me to return in one month for another evaluation. At my next visit with her, low and behold, my liver enzyme function tests were elevated (Ibuprofen tends to elevate these tests). Being the great doctor that she is, she then tested me for the hepatitis C virus. The test came back positive, and from that day on, forever changed my life. She referred me to a liver specialist for further testing...

     My new doctor, Dr. Michael Ryan, was the doctor I was looking for. He was very knowledgeable with the hepatitis C virus, and had many clinical trials going on at the time. I knew that I was in the right hands with his experience and knowledge. He did more blood tests, one of them being the HCV RNA by PCR (Hepatitis C Virus - Ribonucleic Acid Assay - Polymerase Chain Reaction) which came back positive. The test revealed that I had 178,000 copies of the hepatitis C virus per ml. of blood. He then indicated that I needed a liver biopsy to see what kind of liver damage I had going on from the virus. I was very scared at this time because I am in recovery. I was petrified that I might have cirrhosis even though I had been sober for over 3 years.

     A few weeks later, I had my first liver biopsy. I was given Demerol 10 minutes before the procedure, which really helped to calm my nerves. First they gave me an ultra sound so see if they're were any tumors, and to help them pin point a good location for the biopsy. Everything looked good, so the doctor started the biopsy. I didn't feel anything until he said it was all over with, then the right shoulder pain set in. This happens to some people and not to others. Lucky me! The nurse injected me with another shot of Demerol, and within minutes, the pain was gone. I stayed for an hour, and then was released to go home. Now, was the hardest part. Waiting for the results to my biopsy. On a score rated from 0 (being low) to 22 (being high), mine was a 3. Very little damage to my liver from the hepatitis C virus. From that day on, I was able to stay positive and really focus on getting prepared for treatment...

     I started a study with Schering-Plough's Intron A and Ribavarin or called Rebetron therapy on August 16^th, 1998. The Intron A is an injectable drug, the Ribavarin are capsules you swallow. I started with high induction therapy consisting of 5MU of Intron A daily for the first 30 days. I had heard that some people experience flu like symptoms for the first few days. After my first injection, I waited for the symptoms to appear, but they just never happened. My first month was a breeze. Then, as I dropped my dosage of Intron A down to 3MU three times a week, I also introduced 1000mg. of Ribavarin to my system. At this same time, I had my first PCR with the study. I was negative < 100 copies of the virus, after only being on the therapy for one short month.

   About the 12^th week of treatment, I started to experience a lot of joint pain in various parts of my body. It would take me 10 minutes just to get down 13 stairs in the morning. I was hurting bad! The next time I saw my doctor, I told him about all the joint pain I was having. He told me I could quit the study if I wanted, or I could continue with a 70% chance of becoming a sustained responder. How could I quit this therapy when my PCR was showing that I was negative with the virus? I just couldn't quit! I reduced my intake of Ribavarin to 800mg. and also I changed my Intron A regimen around. Instead of dosing with 3MU three time a week, I divided up my dose to 1.5MU six days a week. This made all the difference in the world. A little a day, kept my virus at bay, but also helped relieve the roller coaster side effects you get from dosing three days a week. I was still getting my 9MU of Intron A each week. I had another PCR at week 12, 24, 36, and at the end of treatment, week 48. All my PCR'S showed that I was still negative < 100 copies. Sure, I had some aches and pains, hair thinning, brain fog, weight loss, headaches by the dozen, and finally some thyroid problems, but the treatment was well worth it to me. I recently had my 3 month post combo PCR, and the results are still negative. One more test in January, and then I will know if I will become a sustained responder. If I had to do this all over again, I would. Not only has hepatitis C changed my life for the better, it has taught me to take my medical health into my own hands. I am now more knowledgeable in the medical field, and am now the new support group leader in my area. One thing I still don't understand…Why it took the hepatitis C virus to change my life around, and make me the person I am today…

*Update-

Today is July 10th, 2000 and I had my blood drawn for my 1 year post combo PCR test. Soon I will know if I am still sustaining a response. They should have called this virus Hepatitis W... More Wondering, Worrying, and Waiting!

July 17, 2000 I received my 1 year post combo PCR blood test result. I'm still showing a "UNDETECTABLE" status! There is no virus detected in my blood. I am now considered a durable sustained responder!

I will be having my 2 year post combo PCR on July 24, 2001. I will post my results when I receive them.

Well folks it has been 2 years since I took my last treatment of Interferon and Ribavirin. Today is July 30, 2001 and my 2 year post PCR returned as "UNDETECTABLE" again! My doctor has now used the "cured" word with me!

This brings me too...

 ~The end of my story and the long and winding road back home ~

 

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