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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
32 Responses
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Avatar universal
I HAVE TO START INFERGEN AFTER SOME DAYS. I M AFRAIDING TO GETING IT BUT I KNOW IF I LL NOT GET IT I LL DIE SOON BECAUSE OF SEVERETY OF THE PAIN AND OTHER COMPLICATIONS OF THE DISEASES.I M REALLY UPSET ABOUT MY LIFE SO ALL OF U MUST PRAY FOR ME AND PLZ TELL ME ABOUT THE TREATMENTS IMPROVEMENTS AND SIDE EFECTS.
THANKING OF ALL.
REGARDS
TASLEEM MAGSI
FROM PAKISTAN.
Helpful - 0
92903 tn?1309904711
some buy their vegies online
and others go down to the market
with Beamie he's out in the sunshine
coaxing caorrots to sprout out of horsesh*t
Helpful - 0
Avatar universal
You sir,are No Emily-but i am honored nonetheless to be the subject of your mangled ode to root vegetables.......the sh!t house poet has struck again!!
Chev-honey will soon be "fixed" and none to soon-neighbors dog is once again showin inordinate fondness for my girl-fickle fellow........
Helpful - 0
26471 tn?1211936521
Congratulations!

Best of luck to you.  

I lasted ten days on 30 mcg daily Infergen (+ Actimmune).  My viral load went up.  Having ridden the Infergen train, I know you're a true treatment hero.
Helpful - 0
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
Avatar universal
ahh yes my church...i look around me and am surrounded by beautiful snow capped mountains...

goin to the oregon coast for a few days next week


i still checkin here almost every day, just seem everything is as it was, help hope humor..

cept i'm on the mend right now..i took a header over my chopping block while lookin at a cresent moon..stiff armed the fall..tore the tendon in rotator cuff..that happened dec 4 and just got surgery last week....doc said it was worse then mri showed which was 4 weeks ealier...so i have some screws inserted into bone to tie tendone back about 5 inch incision with 14 sutures to and 6 weeks of sling immoblized..like carryin a 6 pack under my arm.. big chunk of foam to keep shoulder..
and just happen to be my right hand..and i just happen to be right handed..at least i use to...kinda hard typing lefty

wish you all the best health and svr for each and everyone

ken
Helpful - 0
29837 tn?1414534648
Thanks to all for your well wishes. I can't email often because of the nausea, but I wanted to mention something my doctor said regarding Protease Inhibitors. He said that even if they came out tomorrow and we were able to use them, he would have me wait a year first to be sure there are no dramatic side effects that could damage the heart, kidneys, etc.. This is his way of thinking after the mess with Celebrex and Vioxx being pulled from the market, he thinks it's a good idea to wait. He will also still use a combo drug. Maybe Ribavirin.

As for my condition. I'm on the 6th week now and there is no change or improvement as far as side effects. The doctor said the body will take at least one month to acclimate to this torture, but that's not true unfortunately. I am NOT getting used to this. I can't make any travel or work plans. The bills keep coming and I can see that by the time treatment is over, I will be in debt, but that's a small price to pay to get rid of this once and for all. When I'm well again, I can earn again, so I'm not discouraged, just frustrated.

I will post my progress. Good luck with treatment everyone...

Magnum
Helpful - 0
Avatar universal
I don't know if they use Infergen for relapsers, but what I understand is that it is not used as a first time treatment.  Maybe that's where trials come in for first time tx.   I am a non responder according to my doctor...even though I went from 1.9 to 44,000 in 12 weeks.  He stopped peg/riba and started me on Infergen.  I am not in a trial, use my own personal doc.  However if this doesn't work, already asked about new trials for us special non responders!  :)
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
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
Avatar universal
Nice quote from miss Emily-my garden also functions as zen meditation /church...never miss a season-i too grow things w/ the aid of horse manure-the smell is soo much easier...formerly i used pig&chicken-too aromatic,thank you..rite now the only thing planted is garlic;frozen solid&waiting for summer....Deer r real nuisance hereabouts,but honey keeps them moving rite along.....Grew up on a farm;we planted acres of hay&oats for the horses(my fathers passion) nothing like watching a field of golden oats & combining same-fillin 100 lb burlap bags w/ the seed! My father certainly knew how to keep boys out of mischief-buy a farm!
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
Helpful - 0
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
92903 tn?1309904711
I understand. I think maybe you misread my post where I answered NYgirl's question?
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?
Helpful - 0
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
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
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
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!
Helpful - 0
86075 tn?1238115091
God's speed to SVR for you...sure sounds like it, youre an inspiration....
Helpful - 0
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