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29837 tn?1414534648

INFERGEN AT LAST!

Through many struggles and much doubt, I've been sitting on needles and pins for Medicaid to okay the $4000 per month Infergen. They approved it immediately! Yeah!!! I'm still in shock!!!

In case you're wondering why the excitement, I'm a 1a three time non-responder and this has a 37% chance of eradicating this beast for non-responders like myself!

I would like to hear from anyone who has been on Infergen (Consensus Interferon) and the side effects and temper problems you may have had or are having. Although I already know the brutality of the Ribavirin side-effects, I'm hoping the Infergen is not as brutal as straight Interferon Alpha-A when combined with Ribavirin.

It's been a long battle in which I finally hope to be victorious. The doctor wants me on a full regiment of Ribavirin daily and 25mg of Infergen daily. All help and feedback on this type of Interferon is greatly appreciated. As we are all waiting for the Protease Inhibitors, this is basically my only chance and I'm going for it. Damn the torpedoes, full speed ahead...

Magnum
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Avatar universal
Magnum, the very best of luck to you.  Surely this will be the one
frijole
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Avatar universal
I did not clear but I learned alot about living and living with hep c and livin with hep tratment and.....seriously your on the best road for you be on right now.I wish you the best of luck trying to wipe out the virus . Supposedly  you have a 50-50 chance.Thats good!. You have experience, which is good also.My next step is to take half shot of peg weekly with no riba. I should start in Febuary.It's supose to keep my liver swelling down. I'm stage 4 but feeling pretty well.
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Avatar universal
That's great news. Keep that positive attitude! You're an inspiration.
Lauren
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29837 tn?1414534648
Did you clear?

Magnum
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Avatar universal
I finished 48wks of daily infergen at 1.5 dose in August. Prior to that I did peg for 14 wks.You are getting a high dose. My doctor said he can tell the differerce between a person doing 1.5 instead of .9 just by looking at how worn out they look.I didn't find a big difference between the infergen and the peg. When I stared infergen the doc said "this is not like peg, be prepared for a wopper". Good luck in your treatment.
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Avatar universal
same here, the best to you on this new quest, I hope this is it.  I was reading a few abstracts at Precismanagement from the AASLD about re treatement for relapsers/non responders, I did not get to read those yet. You might want to glance at what is happening on that arena, in case a little modification is necessary, instead of stopping completely.
gl to you
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Avatar universal
Congratulations on finally getting approval.  I am on week 2/48, 15 mcg Infergen 3 X weekly plus 1000 mg Riba.  My tx plan is a little different as doc would not do daily Infergen.  So for now, I follow his plan and see what the 4 week PCR shows.  I think he is somewhat cautious which hopefully doesn't affect my long term goal.  Although I'm not doing near the dose you'll be doing, it really isn't all that bad.  So far, personally, I think it's been easier than the Peg/Riba.  But I'm just beginning this journey...time will tell.  Don't seem to be much of a zombie the day after like I did with Peg, but the fatigue is setting in.  Not sure about the difference in attitude, I started taking an AD shortly after stopping 1st tx and I definitely don't seem to be as ugly since I started the happy pill.  I'll continue to take it so my family doesn't boot me out!  :)  I was not very nice 1st round, however, didn't realize it until I stopped and was returning to my somewhat normal self.  My doc gave me a 50% chance at SVR with Infergen, I am type 1, a/b undetermined, 44 yo female, infected in '03, VL this time 827,000.  Have labs done Monday...looking forward to seeing what Infergen has done to me in the first 2 weeks.   There are a few other people here also on Infergen...sure they will stop by.  Best to you on starting tx...this time next year...we'll join the SVR bus...they're on their way to pick us up!    Stay in touch and let me know how you are doing.  :)
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29837 tn?1414534648
Yes 25mcg daily. I guess I was able to tolerate full regiment of Ribavirin & Pegasys and Intron and Alpha-a the entire three treatments. I did have a very volatile temper though, but the Anemia never surfaced.

I guess he wants me on the high dose at first because of my past history of tolerance to torture and also I never used anti-depressants through three treatments.

I did experience a lot of fatigue, loss of appetite, loss of hair and loss of interest in sex... Hmmmm ....

At any rate, I will try as the doctor prescribes and see where it goes. With the upcoming liver biopsy Tuesday, he will also be able to judge more, according to severity of damage. I was last at stage 2 Fibrosis three years ago. I'm prepared for battle...

Magnum
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Avatar universal
Best of luck to you Magnum.If luck is earned then you have it.
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Avatar universal
I did Infergen daily plus riba on my first treatment round, switching to it after 9 months of non-response to the old Intron used daily, and Ribavirin.  I started out for two weeks doing 15 mcg. two times a day!!!  This was totally non-protocol, and was based on a German study on non-responders.  The total of 30 mcg./day was truly a butt-kicker...but I got through it.  I was undetected at the end of two weeks using that dosage, and then bumped back to once a day 15 mcg. infergen, and 1,200 Riba.  I was unable to tolerate the ribavirin, and the dose was cut in half (no Procrit at that time), and I went about five months total on this Infergen combo, and stayed undetected until the end.  I relapsed on one month after tx, chiefly because of the reduced Riba.  I also should have ideally stayed on this combo for a year at undetected, since I was a slow responder over the first 9 months.  I found the daily 15 mcg. of Infergen to be easier to handle than the daily Intron that I had been using.

Are you sure your doctor is starting you at 25 mcg. Infergen?  That is a very high induction dose.  Usually that is used for two weeks to a month, and then adjusted down to 15 mcg./day.  
It IS doable though.  I did the 30 mcg./day after 9 months of prior daily Intron/Riba, and was already pretty burned out!!!  

I did finally get my SVR three years later, using double dose Peg-Intron and Riba, full dose, plus Procrit 2 X/week.  I went for 18 months at that level, and it worked.  I think Infergen is the most effective drug out there...just keep the dose up, and the Riba at maximum, and go as long as possible.... hopefully you will get undected very quickly in this regimen.  Good Luck!

DoubleDose
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29837 tn?1414534648
Thanks for all your well wishes. I will post my progress and results. Even though I will pick up the goods Monday, I will wait until after Christmas and New Years to start. I don't want to go through a possibly brutal holiday season with friends and relatives.

The aggressive, young doctor really pulled for me in the fight with Medicaid here in Las Vegas. He is Frank Faris. A wonderful human being with a lot of compassion and determination to help his patients. He did say that if I don't respond after 12 weeks, he will pull the plug... No use in unnecessary torture... It is after all, one shot per day...

I wish all of you a wonderful holiday season and most of all, I wish all of you to clear ASAP...

Magnum
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Avatar universal
I want to wish you the best this time around. I know it's been a long journey for you but you've handled it with grace and style. I'll be in your corner rooting and believing that this time things will work out right. Mike
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Avatar universal
Your enthusiasim motivated me to respond. I am 1b, did not respond to treatment the 1st time around, and was undetectable the 2nd time in treatment, with a relapse post treatment in 3 months.
At my last visit to the GI clinic, it was suggested that I now begin treatment with Consensus of which I postponed until next Feb. Something that I am not looking forward to. And then you came along and gave me the strength that I needed. I wish you the very best of luck and sincerely Thank You.
A positive attitude I believe to be a main ingredient and I certainly need to acquire one.
Let's go for it!

God's Blessing's to all,

Edgar
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92903 tn?1309904711
No meaningful info from me - but we'll all we pulling for you. May your response be massive and your sides tolerable!
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Avatar universal
Go for it!  Keep us posted.
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Avatar universal
ral
mag, good luck

ral
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Avatar universal
Good News I was undectable at week 12. I replased on the other treatments.
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Avatar universal
I am on round 5 of treatments. I have been on Infergen since May. The side effects are about the same as when I was on Peg Intron. I do have less anger problems than when I was on other treatments, but I have more pain on Infergen. They had to put me on Oxycodan wich helps most of the time.Good Luck
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Avatar universal
where are those infergen folks???
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Avatar universal
i can add nothing,but i wish you all the best--GOODLUCK
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Avatar universal
Good Luck! I'm a newbee, 2 week.... not much to offer but I am interested anyway.

You are all in my prayers!

GIG,

Red
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Avatar universal
hello, how have you been? i remember you i think all the way back to the cow tippin days!

do you really want to know how the infergen is?????

i'm just now finishing up on new years a two year extended fun time of pegysys and riba normal dosing...i had a viral breakthrough so i extended a year past getting clear readings again....so we will see i may be joining you with the infergen...i have a very tiny chance of clearing more like a miricle....but they do happen!!!

there are some here on infergen and it doesn't sound as fun as pegasys or intron...it sounds like you will need the HEAVY ARTILARARY!!!!

WE GOTTA DO WHAT WE GOTTA DO!!! GO GET UM!!!

NICE SEEING YOU, AND I PRAY YOU GET UM GOOD THIS TIME!!!

SANDI

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Avatar universal
That's really wonderful news! Only suggestion is to make sure you're proactive with Procrit, especially if you've had anemia issues with past tx. A recent study administered Procrit prophylactively starting at day one with very good results.

-- Jim
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