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29837 tn?1414534648

Infergen: the Miracle

I've been away from the scene for a while because this brutal treatment has me in bed an average 20 hours per day, and unable to work. It's been 5 weeks now under Infergen 24mcg injection daily and 1200 Ribavirin daily.

The Good: This is my fourth treatment. Infergen is the miracle so far. We started at 2,750,000 just before treatment and after 4 weeks, I'm down to 66,000. I have never been lower than 380,000 on any of the previous treatments, including six months at one shot per day of Peg-Intron and 1200mg Ribavirin.  The doctor and I are very excited and he feels the treatment is finally working!

The Bad: This treatment is definitely not for everyone at this dosage. I have never suffered so much through any past treatments. The doctor attributes this to the mega-dose daily. I don't want to do anything but stay in bed, but the doctor said I must force myself to get up even if I throw up.

Some of the side effects: Constant nausea (I mean constant), except when I do some Medicinal Marijuana, and even then, it does not completely get rid of the nausea. I've tried three different anti-nausea pills. Joint and back pain, for which I take a low dosage Lortab. Blurry vision. Brain fog. Absolutely no appetite at all except after some Medicinal Marijuana.

So, in conclusion, after only four weeks, Infergen has done what three prior treatments including Peg-Intron, Pagasys, and Peg-Intron with Amantadine have not been able to do. If the drop is down to 66,000 in just four weeks, I'm very excited to know what the 12 week test will show, as that's the next step.

Magnum
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96938 tn?1189799858
I can't imagine what you have been through over these years.  I hope this is the one for you. Folks like you, Susan400 and others are an inspiration. Hope it continues for you. When's the next pcr and how's the blood work?
Helpful - 0
92903 tn?1309904711
I second what FLguy has said so well. I think of you often. You are a pillar of strength.
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Avatar universal
whoa!! i can't imagine doin the trx you are-my sx r bad 'nuff for me..You gotta be one determined man w/ an ironwill....and constitution!...glad to hear that weed helps-it is a minor miracle at times-Good luck&strength-
Helpful - 0
Avatar universal
Good deal on your undetectable pcr results. I don't know how your putting up with yhose kind of sx's. Thats a good drop in just 4 weeks and it looks good for you this time around. I hope your sx's get mildre.

    Dyce
Helpful - 0
Avatar universal
Magnum! this has got to be it! it has to!
It does sound brutal this round, you have so much determination it has to pay up.

too bad they can't pump you up with some analgesics by IV. You are in bed anyway, so why not be in comfort?
be well
Helpful - 0
Avatar universal
I have been wondering how you were doing. Yowza! This sounds incredably tough. I pray this time it works and so far, so fabulous. Hang in there(or rather, lay around in there).
Keep us posted.
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Avatar universal
Been thinking about you...what a wonderful PCR result! Sorry it has been rough for you so far...I can't imagine what it's like on your dose...I started Infergen shortly before you but only do 18 mcg 3 X week and it's kickin my butt. I work part time and sleep the rest of the time...However, my 4 week PCR was a disappointment.  Still at 498,000...seriously talked to the doc again last week about upping my dose and he won't give.  Waiting for my 12 week on the 28th and will go from there.  May very well be time for a second opinion...It's very discouraging to suffer through this tx and not have it do much...Hang in there...it's working for you...  :)
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Avatar universal
Your name really fits you, can't imagine those sx's only someone like you could handle them.  It sounds like you hit pay dirt with this tx, you are going to be SVR soon.

My prayers are with you,

   The Beagle
Helpful - 0
86075 tn?1238115091
God's speed to SVR for you...sure sounds like it, youre an inspiration....
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Avatar universal
Inspiration: that is exactly what i take from this site..This forum gives me strength,resolve,perspective and a real sense of humanity...Thank you everyone for posting and thank you Med Help for this special place!
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Avatar universal
The miracle is not the infergen. The miracle is you. You define determination and courage, a Gladiator. Wish we could help carry you. It would be an honor.
May the opponent fall at your feet.
Don
Helpful - 0
Avatar universal
Thank you.  There is a great probability that I am going to be starting on the Infergen after I detox the Interferon out.

While it is a much more brutal therapy the results that havE been proven for Geno 1s are simply amazing.

I am scared of doing it of course but thanks to your inspiration...I KNOW about it number one and number two I have the strength to try it if necessary!

I would do ANYTHING to get rid of this virus and thanks to you I have alternatives.

My best of luck to you. And all my thanks.
Helpful - 0
Avatar universal
I'm stunned at what you are enduring.  Please Please may this one work.  Your perseverance is remarkable and I am so glad your PCR was the best ever.  I hope you can check in every week or so, because I will be looking for your posts.

The daily infergen is step two if the Peg-Copeg does not work according to my GI. I hope I don't have to deal with that, but am glad to hear that it works.
Kathy
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Avatar universal
Yeah if you don't respond to the Peg...

But the success rate for the Consensus Interferon for Geno 1s is REMARKABLE.

Magnum - are you doing the Infergen AND Riba or just Infergen? I was thinking to try and get in the BOTH trial myself (Hey the more the merrier ;-)
Helpful - 0
92903 tn?1309904711
Nygirl, maybe I can save magnum a post by pointing out that he says he's doing 1,200 riba up at the top of the thread.

--------------------------------------------------------------
I'm curious. Do docs turn to Infergen for relapsers too, or is it generally reserved for non-responders who couldn't get to ND on peg? Would a relapser normally go back on peg for a longer course, or would they be best to hit the infergen for round two?



Helpful - 0
Avatar universal
Great question and thanks for the riba info.  I'd like to do both if I have no luck with this (ah a still week to find out but you know me always obsessing about side plans and what ifs...)

There is somebody on this board (sorry I forget) who said they are treating for the FIRST time and are on the Infergen and that it was prescribed by their doctor and that this was NOT a trial.

I know up here in NY I have to go to one of the premiere docs and get in a trial on it.  I don't know why another STATE would be different though.

I don't know why ANYBODY would want to try it FIRST but...the results are supposed to be so much better maybe they didn't get the difference in sx or something?

Helpful - 0
Avatar universal
Great question and thanks for the riba info.  I'd like to do both if I have no luck with this (ah a still week to find out but you know me always obsessing about side plans and what ifs...)

There is somebody on this board (sorry I forget) who said they are treating for the FIRST time and are on the Infergen and that it was prescribed by their doctor and that this was NOT a trial.

I know up here in NY I have to go to one of the premiere docs and get in a trial on it.  I don't know why another STATE would be different though.

I don't know why ANYBODY would want to try it FIRST but...the results are supposed to be so much better maybe they didn't get the difference in sx or something?

Helpful - 0
Avatar universal
Hey goof, looks like ice cream is not the only thing this girl likes to double up on.

Double the post, double the ice cream, double the fun, hey girl?
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96938 tn?1189799858
Ok NyGirl, looks like we are going to have to help you manage your schedule.  Goof established that this weekend is #22 and you seemed to agree.  That means #23 is 2/18 and #24 is 2/25.  Your pcr should be somewhere the week of 2/27. But remember, February has only 28 days.  Lay off the Tutti Frutti flavor.
Helpful - 0
92903 tn?1309904711
Don't forget the 20th is a holiday. Not sure if the viri take that day off here - I'm pretty sure they're on the job in Italy that day. But then they do get the long summer break in Europe. In any case, why not give yourself that extra day just to be sure?

BTW, are you planning a 36 week PCR? The reason I ask, is why not have them draw that when they draw the 24. That way they can just hold it in the freezer over at the lab, and you won't have to watch the calendar for week 36?

Support and advice; that's what we're here for folks.  

Helpful - 0
92903 tn?1309904711
I understand. I think maybe you misread my post where I answered NYgirl's question?
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Avatar universal
You should start a garden.  I remember 4 yrs ago when I started tx, I started a garden.  Well, I was clear before the seeds had sprouted.

My guy made a raised bed garden since I couldn't bend or if I got down, I couldn't get up!

Well, I'm starting my 5th garden now.  I only gorw what I like and now I'm down to marijuanna, herbs, peppers and tomatoes.

Last yr was the 1st yr we grew med marijuana-i still have an Rx b/c 'hep c' is 'incurable' by WA state standards and I also am classified as end stage-and it was so satisfing.  It was light, happy 'hippy' dope.

B/the garden-whatever you grow-gets you out and gives you a visual timeline and ups your zen quota and we all need alittle help fromour zen.

good luck
Helpful - 0
96938 tn?1189799858
Great idea about the garden.
I've been meaning to ask you..Many months ago you discussed a problem with blood sugar that (I think) resolved during tx.  How is it now and are you doing anything about it now?
Helpful - 0
86075 tn?1238115091
what a nice post..I could see you gardening and I don't even know what you look like...maybe I should start diggin sooner then later...
Helpful - 0
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