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
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