HCV Questions

[jonilynn]

I had a blood transfusion almost 20 years ago , and believe that is when I contracted HCV.I was made aware that I had the disease when I gave blood years later (90’s) . When I asked the doctor about it at that time. He stated that I probably would never even know that I had it and there was no treatment anyway. I went on with my life, never verified the blood work and never thought about it again. In 2002 I began to be tired all the time and after several doctors visits I was referred to a Gastroenterologist were I live. I was told that I could do the Interferon treatments after a biopsy and blood test.I was only at stage 1, but started the treatment in Dec. of 2002. The medicine made me very sick, moody weak and weight loss,  but the biggest issue by far was the tremendous pain associated with the shots of interferon. I can only explain them as the growing pains that seem to radiate from your thigh bone as a child -only 100 times worse and joint pain. I only saw my Doctor for approx. 15 minutes on the first visit, after that everything was handled by a CNP at his office. After being off work for 3 1/2 months. I learned that the CNP had given me the wrong dose of Interferon . ( 50 instead of 150) and that I would now have to start my 12 month count down all over again.  Thankfully  the side effects stayed the same and were not worse I could not have handled worse. I was tested at the 6 month mark ( actually 9 month mark ) and was showing clear at that time. I was on LOA during the treatment. I had tried to work for a few months, but then just continued my LOA. At the end of my treatment I was told that I would receive a final blood test and that if it was clear I would be tested again 6 months after treatment and if that was clear too I would probably be OK for the rest of my life. He stated that the studies so far had shown no relapses after that point that he was aware of . My Husband and I were excited and happy that I  was almost done with  the treatment. A week later I received a call stating that I could stop the treatment 1 week before completion, because the blood test showed that it was not working. I have now been off the medicine for approx. 3 weeks The pain was gone very soon after treatment stopped and I feel much better, but I am still tired - certainly not as much as while on treatment, but tired. I have several questions, sorry to be so long but I need an opinion. I really need some answers.
1. Are the side effects that I am having normal?
2. Why would I still be tired after treatment has stopped?
3. Is there another treatment available?
4. Could the mistake in my medicine have caused the treatment not to work?                       Thanks for your help

[Kevin Pho, MD]

To answer your questions:
1) The side effects such as fatigue vary from patient to patient, thus making it hard to say what is "normal".  

2) There are many reasons for fatigue.  Of couse, the hepatitis itself can lead to fatigue.  It is possible that they may be unrelated to the hepatitis and its treatment.  Easy things to check would be a thyroid test and a blood count.  Fatigue and flu-like symptoms occur in up to 90% of people who are on interferon, it may take some time for the effects to fully diminish.

3) If this hasn't been done, you may want to inquire whether a combination of ribavirin and pegalated interferon can be considered if the initial treatment has failed.

4) It is possible that the mistake in dosage may have contributed to treatment failure.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[thanbey]

Your side effects were probably average. Some people experience fewer sides and others have far worse.

It will take your boidy time to recover from the treatment, which is a very toxic one on the body.

New treatments may be availalbe in the next few years, however, most of them will have interferon as a component.

the most important thing for you to know is that hepatitis C is not a fatal illness in the majority of people. With rigid lifestyle habits and continued monitoring from your doctor, you can expect to live a long and full life. Managing your hepatitis C symptoms, if any, will become part of your lifestyle.

For more informaiton on this, check out the website: www.hcop.org

The homepage has a dropdown menu where you can read about a wide variety of topics, including those I have mentioned here.

Also, "thanbey responds" talks about a lot of issues in frank language.
There is also a blog where you can contribute comments.

I hope this helps and you are feeling stronger each day.

thanbey

www.hcop.org