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Pegintron Toxicity
March 4, 2004

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

 

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