Treatment Success
Treatment Success
Alan Franciscus, Editor-in-Chief
In this article, I will briefly describe my treatment experiences and my general
feelings about what it means (to me) to be hepatitis C virus free. First of all,
I am not recommending treatment for anyone. Not everyone should be treated and
treatment is not for everyone. Treatment decisions should be made after
gathering as much information as possible and weighing the pros and cons as they
apply to each person. No one should rush into it because I or someone else you
know has had a successful treatment outcome. The ultimate decision is between
you and your medical provider. Below are my thoughts, experiences and feelings,
but as the saying goes "It don't make it so."
In 1994 I was feeling the symptoms of hepatitis C - moderate to severe fatigue
and other mild flu-like symptoms, but I didn't know the cause. I went through
many tests over a two-year period and no one could medically explain my fatigue
or the other symptoms. That was really frustrating because I thought I had this
bizarre disease that no one knew about. I'll never forget the day that I had a
doctor's appointment with my new primary care physician. After I explained my
symptoms, he ordered blood work, including a hepatitis C antibody test. I had
never heard of hepatitis C, but luckily, he had. A week or so later I received
my test results - I had hepatitis C. Of course, I was devastated by the news,
but in some ways, it was a relief to finally find out what was causing the
severe fatigue.
About 3 months after I was diagnosed I decided to try treatment with
non-pegylated interferon monotherapy (3 injections a week). I was on treatment
for a year, but I did not achieve an SVR. In fact, during treatment my viral
load never reached a point where it was undetectable. I also had many side
effects. The first evening I had severe chills and a fever. After a while, the
physical side effects such as the flu-like symptoms seemed to diminish somewhat
- at least to the point where I could handle them. However, the psychological
side effects (anger and depression) slowly became worse. After about three
months, it was decided that I should start on anti-depressant therapy. I also
started to meditate regularly and between the meditation and the
antidepressants, I felt better and was able to finish treatment.
Looking back, I wished that I had been more educated about the chances for a
successful treatment with monotherapy because I am not sure I would have tried
it. The data about the treatment at that time showed that I only had a 9% chance
of achieving an SVR. However, even though it didn't eradicate the virus,
treatment did help with the fatigue, for a while at least.
But eventually the fatigue returned so in 1999 I decided to try high daily
dosing of non-pegylated interferon monotherapy. At first, there was a dramatic
reduction in HCV RNA (viral load) levels, but after 10 months, the virus came
back so I stopped therapy. Again, my energy level dramatically improved, but
over the next couple of years the extreme fatigue as well as some of the other
symptoms like brain fog, lack of concentration, difficulty with mental retention
and other annoying symptoms came back. Surprisingly, the side effects of high
daily dosing didn't seem that much worse than when I took interferon three times
a week. I think this might be because of what I learned the first time about
managing side effects. I also started on anti-depressants a couple of months
before I started therapy.
In 2002, I decided that I wanted to try pegylated interferon plus ribavirin
therapy. I began towards the end of 2002 and my viral load began to drop, but
not as quickly as I had hoped. After about 3 months, I had a 2-log drop in HCV
RNA, so I was well on my way. At about the 9-month mark, I began to do some
research on treatment duration for people who had characteristics similar to me
- older, genotype 1, high viral load, had HCV for a long period of time. Most
data suggested that I should be treated for a longer period of time. After
consulting with my doctor, it was decided to extend the treatment from 48 weeks
to 72 weeks.
The side effects of pegylated interferon plus ribavirin were much less than the
side effects I experienced while on the first two courses of therapy. In fact
the morning after the first shot I felt so good that I wondered if I really did
take the drug at all! That slowly changed and by the third month, the side
effects became worse, but I was able to manage them fairly effectively. My blood
chemistries looked pretty good throughout therapy, except that eventually I
developed anemia. I am VERY fortunate to have insurance to cover all of my
medications including erythropoietin (EPO). Epo worked wonders for the anemia
and the related fatigue, allowing me to finish treatment.
One of the strategies I put into place was to have a good support system well
before I started therapy. I relied a lot on my friends and family for support.
The side effects were managed aggressively with early intervention to prevent
them from becoming worse. I am very fortunate that I love the work that I do for
the Hepatitis C Support Project. This really helped to distract me from the side
effects. Don't get me wrong - it wasn't a walk in the park, especially since I
was trying to run a non-profit agency. I traveled extensively during this period
and logged about 100,000 air miles. However, I made it through, and it was well
worth it.
It has been well over a year since I finished treatment, and I am still negative
for the hepatitis C virus. This was not totally unexpected, but, as most people
who are treated know, it wasn't totally expected either. Ever since the news, I
have been thinking about what successful treatment and getting rid of the virus
means for me.
First, it was fantastic news that the virus was out of my body. I only wish that
everyone with hepatitis C could experience the feeling of beating HCV. It took
awhile but the side effects gradually went away and I began to feel better. The
hepatitis C symptoms that I had been experiencing for so long also started to
get better. Slowly, my energy returned. In fact, my energy level is better than
it has been in 10 years, and most of those hepatitis C flu-like symptoms have
gone away. Best of all I now feel clear-headed and I feel a general calmness
that I haven't experienced in years. This is a big difference from the way I
felt before treatment.
Many issues come up after successful treatment. One of the most frequent
questions people ask is if they can drink alcohol again. For me, this was a no
brainer. I'm in recovery so drinking again is not an option. Unfortunately,
there is no data on whether someone who achieves an SVR can drink alcohol. Until
there is significant data on this issue, the general recommendation is to
abstain from alcohol.
Another big issue is blood. Should I cover my wounds or take precautions if
blood is present? Definitely. Always be cautious where there is any blood
present whether it's yours or someone else's.
Feeling infectious is probably one of the strongest emotions that almost
everyone with hepatitis C feels especially after being newly diagnosed. I used
to be so concerned when my blood was present that I would needlessly become
almost hysterical about it. I still believe and practice safety precautions in
the presence of blood. But there is a big difference between common safety
precautions as opposed to knowing that you have infected blood that could
potentially infect another person.
Do I feel like I will live longer without hepatitis C? I do feel that I will
live a longer life, but more importantly, I feel that I will not have to suffer
with the severe fatigue or the other symptoms of hepatitis C. For me, the
decreased quality of life and suffering was worse than the idea that I might die
from hepatitis C.
My advice to someone who is thinking about treatment is to research hepatitis C
treatment medications. If you decide to start treatment, set up personal and
medical support well in advance of starting treatment. Another strategy that
helped was finding something that I enjoyed, which distracted me from the side
effects. Probably the best advice I can give is to take treatment one day at a
time.
"But let us remember, we cannot wait for others to tell our stories. We must
remain visible, vocal, and unified."
- Yvettte Sangster and Ed Kramer
http://www.hcvadvocate.org/news/newsLetter/2006/advocate0206.html#2