| Lloyd,
I am looking for direction, I was on PegIntron for 5 1/2
months and had a toxic reaction. I became encephalopic and
was in the hospital for 5 days.
I was confused and unable to really function for at least
three more months, I remain fatiqued, thyroid is shot, body
aches, etc. I was 44 years old at the time with a low viral
load and probably didn't really need treatment, but that is
hindsight. I am a nurse (was oncology prior to treatment)
so I knew the risks of chemo.
However, I did not know that treatment was not my best option
and after beginning treatment I was so sick, the brain was
not functioning. My numbers stayed good, and my doc said I
was doing GREAT!
My primary md ended up treating my side effects as gi doc
was hard to access. Strangely enough, I have not seen him
since treatment, Schering who contacted me weekly during treatment
never called again, and I don't see my adverse event in any
of the reports. I was denied my disability insurance and didn't
work for 9 months, ended up in bankruptcy, and owed my gi
doc$126.00 from old co-pays (of course he did make quite a
lot of $$ on me)
For this reason when I tried to make a followup appt his
office told me they could not see me because of the balance
and I was too angry to pay it. I still have significant problems,
but I can work - But it would seem that a reaction of my magnitude
occuring with a new treatment being followed by the major
hepatology group in Charlotte, NC would warrent a phone call
at least.
I have just recently learned from a friend
who went to a major oncology convention that this encephalopathy
is a syndrome to watch for with a couple of different chemos,
alfa interferon being one, that could have been reversed with
steroid therapy at the time of the occurance. This wasen't
done, in fact I received fluids and that's it for the 5 days.
If not treated at the time of occurance, the neuro damage
and autoimmune damage is
permanent.
If you are interested I will get the references and articles
from the conference to you. It might help someone else. I
just don't know where to proceed from here. If anyone has
any ideas please email me at brgaskins<at>hotmail.com.
Hi:
I read this same story several times a day. It is pathetic
that something as treatable as hep c is treated this way.
I have dedicated my life to helping people "JUST SAY
NO to INTERFERON"!
Hep c does not warrant such a drug.
Over 70.000 people have normal lives by doing what I did.
If you would like to join the class action suit I sponsor
you can call Patrick Catalano at 619 233 3565.
He takes time to call back but he is working on the suit
against schering.
If you like I can help you with side effects. Taking steroids
do not help, most of the time, they offer some temporary relief.
I see this every day.
They can keep you alive if you are dying. I have helped many
with these problems as they happen and the way I do it works
much better than more drugs.
Read my message board, read my books.
I am here for any questions.
Lloyd
|
