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29837 tn?1414534648

Infergen Torture

In case some of you don't know, I was on 24mcg Infergen and 1200mg Ribavirin daily for 3 months. Doctor took me off treatment 2 weeks ago because my ALT & AST levels went from the 80's to the 700's. My urine was also very dark, due to Bilirubin imbalance.

This treatment is only for those who don't mind feeling like they're going to die. I DON'T recommend this for ANYONE personally. I was getting a blood test every three weeks and will have another liver panel today to gauge the swelling.

I would never ever consider this treatment again. Maybe it's okay at the normal dose, but I believe that the megadose I took for three months could cause permanent liver or other organ injuries. BE VERY CAREFUL!

I was a very strong proponent of Infergen at the beginning because I went from 2,700,500 count to 6000 in three months, but the horrific torture and agony is NOT worth it! I will now wait for my 5th treatment in 2008 with VX-950.

This is two weeks after stopping treatment. Here's What's happening to my body:

I itch unbelievable - I have a reflux problem - I shake like an alcoholic drying out - I'm still brain foggy - I feel at times that I'm on speed - terrible Insomnia, averaging 5 hour per night sleep. The Medicinal Marijuana helps. - No appetite, compounded by nausea (Medicinal Marijuana help) - Aggressive behavior. Yelling, pounding, name calling, throwing things.

My doctor now has me on Aciphex (pricey) antacid at 2 per day to see if it will counteract the Reflux.
My friends, if you are thinking about Infergen, ask your doctor MANY questions...

Magnum
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Avatar universal
magnum, i hope you recover from this battle soon and fully! what about NM283? I read that it includes non responders and relapsers in its trial and Rudy is almost done and has been negative for a while. Is it for you?
stay as well as you can
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Avatar universal
Magnum:   I understand where you are coming from regarding the Infergen.  During my first round of tx I did the 15 mcg. dose at two times per day for a little over two weeks, or a total of 30 mcg./day.  I felt near death at almost all times, and had to hold onto the walls just to walk.  I reduced to 15 mcg. /day, after two weeks, which in itself is a HIGH Infergen dose, especially on a daily basis.  The two weeks at 30 mcg./day were the most horrific two weeks in my life, and I thought that I could easily die at any moment.  So, I really understand what you are saying and feeling.

That said, I want to make sure any new forum members do not get the wrong idea.  This ultra-high, daily dose of Infergen is very different from standard tx dosing, with the Pegs, or even with Infergen at 9 mcg. three times a week, or even daily.  When you bump up to 15 mcg/day it gets rough, and when you go to 28 mcg./day, or 30 mcg./day, it is totally OFF THE CHARTS!  

If one could compare severity and difficulty level, the 30 mcg./day of Infergen that I did for two weeks was easily 100 times more frightening and difficult than any week that I later endured on Peg-Intron!  And Peg-Intron is usually even worse than Pegasys.  So, do not fear the current tx programs, if you are considering the therapy.  Standard tx using the weekly Pegylated interferons is a total 'cakewalk' compared to double high dose Infergen at 28 mcg/day.  This doubledose, daily Infergen tx is reserved only for the very most difficult, intractable cases who need treat the virus urgently!

Magnum, I hope you can recuperate, recover, and get in shape to beat this thing in a couple of years with Vertex/combo, and whatever else is available in 2008.  It may take a bit of time to return to feeling stable, and somewhat normal, but I think you will get there.  Keep an eye out for post-tx depression, and be ready to treat if necessary.  You probably feel like you were run over by a train, but in time it will pass, and you will feel strong again.

My best wishes to you, and keep the optomistic feeling about the future.  Better treatments are around the corner, and you WILL succeed!

DoubleDose

Helpful - 0
Avatar universal
When i read about your trx regimens-i cower in dread...i can't imagine pulling that off;probably haveto lock me inna padded cell and keep me Heavily sedated....ALSO,yu guys give me certain perspective: my trx? Hah-could be worse! GOODLUCK guys, sure got some coming...
Helpful - 0
Avatar universal
Sorry for your sx's there my friend. Makes m y sx's seem like nuthin! You'll get this behind ya and you'll be able to get on the tx with the new drugs coming down the pike.

Dyce
Helpful - 0
Avatar universal
Sorry to hear this round of tx was so bad on you...hope you continue to recover quickly.  I can't imagine what 24mcg daily does to ones body, however I can somewhat relate at 15mcg daily.  I started daily shots 3 weeks ago after 12 weeks of 3 times weekly without much of a response.  I can't believe I begged my doc for this tx, now I know why he waited til I didn't respond.  I have decided that I will insist on a 4 week PCR next week and if I am not "unfreakindetectable"  or damn near, I'm stopping.  It's tough and has changed who I am in more ways than one.  
Hope all continues to go well for you.  Let us know how you're doing.  :)
Helpful - 0
Avatar universal
I just saw on the early news this morning that the VX will hit the market in the early part of 2007.  They said all trails are showing much promise.

Beagle
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