Is there anybody out there......who has experienced Infergen?

[willows]

I am in my information gathering mode and wanted to ask, AGAIN, if anyone has experience with Infergen?  I believe it will be the next treasured route I get to try, after non responding at 24 weeks of Pegasys.  From my research, I gather Infergen is triple-strength IFN, minus the peg, so one has to wonder if that means triple the sides?  Three times the hair loss?  This is not pleasing me, I was very sick from regular strength IFN, so am a little apprehensive about Infergen, will find out in three weeks if this is Doc's next option.  My liver is a bit worse now, cruised after failing for about two years, does liver condition afffect choices of tx?  No cirrhosis yet, but what a freakin trade off, extra-strength, lots more shots, vs. my flamin liver.  This virus is....very vexing.  I am vexed today.  Very.

[giddyup]

I participated in the direct trial.I took 15 mcg for 48 weeks with daiy riba. The study had a 15mcg and a 9mcg sample group.I finished in September. As a participant in the study I was not allowed to take procrit and I think  it would of helped.It was difficult on my mind and body from begining to end. At 24 weeks I had a viral load of less than 500 but it returned in higher numbers at week 30 and I did not clear.My doc believes that the 9mcg is probably as effective at the 15mcg dose. I think it is less tolerable than peg,especially at the 15 mcg dose.I feel as if I am still recovering.

[zzzztime]

Im wondering if there isn't some new info or study somewhere on starting tx with infergen. I was told by my docs nurse that this is his standard tx.(daily infergen & riba),im worried also because she didn't say at what dose but did say that he is different than other docs in that he treats very aggresivly. Im also not shure if that is his standard for all hepc or just geno 1a. that goes back to a question in my 5/9 post about docs. I suposedly have a "world reknown" hepatologist and have been told I'm lucky to have gotten him so does that mean I should go with his insticnts? Dr. David Van Theil anyone hear of him. He does practice in a couple different states I think he has started up liver transplant teams in 5 states and opened a liver/hepatitis clinic here in Milwaukee a couple years ago. But he definatly focuses right in on your liver (and the whole body) hes very thorough but he doesn't see that the patient still has a life outside the clinic. Iam just really torn now about starting tx. id like to just go bac in denial like i have been for the 20 years but i now have sx.

[returntosender]

They may not be on this forum but there are many SVRs documented from Infergen and Riba.  I have not seen or heard of any deaths from the treatmtent itself - not that I am any expert but if anyone died on this stuff, it would be out there and probably a hot topic on this forum.  

They use Infergen for "Peg-nonresonders" which includes relapsers and those who never cleared in the first place.

[ASmile4U]

I have been on Infergen since December '05.  I did 15 mcg 3 X weekly until March '06.  Because I didn't have a 2 log drop, I am currently doing 15 mcg daily along with 1000 riba.  I started daily at 252,000 and at 4 weeks was at 64,900.  Personally the sides aren't much different than Peg...still have good days and not so good days.  The fatigue is much worse tho, I sleep a lot...my dogs are loving all the nap times!  
My platelets are falling rapidly...doc said he may have to reduce to 9mcg...we'll see how it goes.
I'll let you know what the 12 week PCR says...3 more weeks...hoping for ND.  Something has got to work.
I honestly don't think Infergen at a normal dose is any worse than weekly peg...but ask me that question in a couple more months, I may very well change my opinion!  :)

[willows]

You two folks kind of represent the whole spectrum of Infergen, SJ, what you described is what I sort of envisioned, maybe without the flares.  And ZZ, you need to find a different shrink, I got soooo depressed first time on Pegasys, so when I failed, the first step of the new plan was to get depression under control.  Found an amazing shrink and we have a PLAN.  Makes me feel better to know that he is there if I start hitting the bottom, bouncing around on the rocks.  ZZ, I gotta wonder why, if you haven't done ANY tx, why not do Pegasys?  It's waaaay easier than what SJL describes about Infergen, which is kind of what everyone says about Infergen.  Something is seriously wrong when the decision to start treatment feels like volunteering to have your arm chopped off.  And yet, one can be very happy with one arm, but my liver, I love my liver, original equipment, want to keep it.  Strange world..........needs magic cure.  Soon.

Willows

[LvdByGod]

if i fail tx i was concidering infergen too. i wish there was just one person here who at least cleared as a result of going on it... and perhaps just one person who didn't almost die from using it too...  hmmmmmmmmm

ANYONE LIKE THIS OUT THERE???

also do they use it for relapsers or just non~responders?

[returntosender]

Lucky you, there is a trial site at Univ of Washington.  Good luck.

University of Washington
Seattle, WA
Investigator: Anne Larson, MD
Contact Number: [phone]

[lackalustre]

you went thru a lot.  your list of  infergen side effect symptoms sound similar to the side effects i experienced with peg/copegus.  i cleared the virus but it near did me in doing it and i was only on it 28 wks- geno 2b.   yet i was determined to beat it. i went down to 108 lbs. i now weigh 140 lbs nearly 3 years later and still clear!  you people on treatment are heroic creatures in my eyes. keep up the good work!

[Magnum]

I don't know if you read my previous threads, but everyting was fine for the first week, then I started getting the typical sides, then worse, and worse, so that after three months, my ALT & AST went into the 700's from the 80's (prior to treatment).

I didn't know until I saw the doctor last, but I was Jaundiced, and the Bilirubin was way off, and the liver was dangerously swelling. That's what I mean by "slowly killing me". The doctor had me stop immediately.

Knowing me, I will probably try it once more for a 5th treatment, but obviously at a normal dose, along with 1200mg Ribavirin, and Protease Inhibitors. If that doesn't work, then...

Magnum

[willows]

Good info, thank you very much, but may I say, once a day, OMG.  Okay, got that out of me.  Took my breath away to think of it, but am back in control again.

I have the most important part of your equation, I think.  Am going to the Liver and Hep Clinic at the University of Washington.  That is all they do there, try to fix livers.  My gastro doc was "less than experienced" with even Pegasys, I have some regrets, I let him make choices for me that I now know there were better options available.  But regrets are wasted time, I could be contemplating daily shots of infergen.  I guess since I was a non responder on Pegasys and Infergen is usually what comes next, then I truly am contemplating Infergen.  My, my.  Need an aspirin.  

Hey return, thanx for the info.  after the aspirin, I will check out some of the links.  

Willows

[SJL]

I did 48 wks. of Peg-Intron/Riba. Responded & then relapsed. I then did 52 wks. of Infergen/Riba. Started out at 3 x wk.,then daily injections. I showed 6 straight undetectable's at the end of the 52 weeks and one mth. later relapsed. Sides were extremely bad for me. I eventually had to stop working. 1B, stage 3, grade 4, with beginning cihhrosis. Age 62. I then went on Pegasys maintainence, twice, and both times I flared terribly. My last VL was 30,000,000. I was only at 1,000,000 when I started treatment in 02. I have been left with Neuropathy of the legs, feet and right hand. This is a direct result of interferons. We don't know if it is reversible or not & I started P/T today. My feet go numb & this travels up to the knees-no feeling what so ever. I have fallen 8 times. Their will be no other treatment for me unless something miraculous comes down the pike. The trade-off wasn't even a trade off. I am now worse than when I started. This is not meant to scare you, but is only my story. Everyone reacts differently, as we all know. If you give Infergen a whirl, I wish you nothing but success, and who knows, you might sail right through it!
Sandy

[zzzztime]

I have not experienced infergen yet but i too want to find out more about it. I was having a difficut time deciding weather to startr tx. or not. After watching this forum for a while(the people here are great) I decided to do it. Until I called my doc office and found out that he uses daily infergen and riba for 48wks. im geno 1a with high viral load. never had tx. before. Now Im back to undecided and becoming very depressed.From what Ive been reading if this depression keeps up i may not be able to tx. anyway. im already on prozac, obviously not helping.

[returntosender]

I havent taken Infergen but you never know what the future holds - I am just completing 48 wks of regular PEG/RIBA. I have heard many people mention this stuff and thought I would take a look at what is going on with it.  I discovered that there is a trial being conducted across the nation examining the use of infergen on a daily basis with riba.  The results of this trial are expected in the first half of 2007 - and it is called the DIRECT Trial - "direct" meaning d-daily, i-infergen, r-riba etc etc.

Look here for explanation - http://www.directtrial.com/

This sounds like it will be the definitive study on the daily use of Infergen and Riba for PEG nonresponders.  I saw a number of smaller studies where they have used daily amounts as high as 27mcg but only for a short period of time.  The toxic dose of Infergen is supposed to be 150mcg - a volunteer took this for four days before his liver enzymes blew up - took him 30 days to recover.  The "standard" original dose, according to the product documentation is 9mcg every other day.  I did not see that there is a "standard" daily dose as yet although 15 mcg seems to come up as the dose of choice in many studies.  There are two doses being used in the Direct Trial but I do not know what they are.  

If I were going to do this tx, I would make sure I had a doc who has investigated daily use and maybe is involved in the Direct trial - you can find the sites at the link above.  Maybe look for one of the docs who reported at this conference:

http://www.hivandhepatitis.com/2005icr/aasld/docs/112805_d.html
http://www.hivandhepatitis.com/2005icr/aasld/docs/112805_e.html
http://www.hivandhepatitis.com/2005icr/aasld/docs/112805_c.html

Getting a regular gastro to do this feels scary to me like flying blind although it seems clear that the 9 to 15 mcg daily dose along with Riba is pretty efffective for non and slow responders with dropouts fairly consistent with that of regular combo.  The drug was reported as well tolerated even by those individuals with compensated livers.  

I did not see anything about Infergen as "three times" the strength of regular interferon, although I read that it elicits 5 times the immune system response of regular interferon!  I have no idea what this feels like but if it is stirring up the immune system like this you must know it.  

Knowing my head, if I thought it would be worse, it WOULD be worse!  One thing for sure, it is definitely an option if the regular combo doesnt work.  The SVR rates look pretty good for Peg non responders.  Dont know what I will do if this tx doesnt take.  Probably rest a bit.  Wont hurt to have some more data - I think the Direct trial had all of its 400 or so patients by August 2005 so folks should be finishing up treatment pretty soon.  By March there should be some good info coming out on this tx.

[susan400]

I've been on Infergen and high dose Riba.  This is my 3rd time of treating with Infergen.  I'm on daily doses of 15mcg.

I just got my latest viral load in and I'm down to 200 copies. While I realize that by this time, I should have cleared, at least it's dropping and not going up.  I've been treating for 10 mon.  My doctor wants me to make at decision and let him know about whether I want to keep on trying to treat on my current regimen.

What questions do you have about the Infergen?

[willows]

Speaking the sharing of information and experience, it seems to me that the virus is one issue where "empirical" data is the most valued, more so that any facts my doctor could spout.  Thank you for sharing, it is useful to me to know that standard dose is a good choice, more ammo when I talk to doc.  I keep amazing myself in my attempts to re-tx, it was such a hard experience, why the he!! do I want to go there again?  But this silent, invisible little bug is the reason, so here I go again.  Thanx.  
Willow

[Magnum]

Ah yes, a subject dear to my heart. The standard dose may be just fine. In retrospect, I would have tried that instead of the mega dose I was on that nearly killed me.

I will say this... I had three prior treatments before, including Interferon/Ribavirin. Pegasys/Interferon, then Interferon/Ribavirin at one shot per day for six months, and nothing came close to the positive results I had with Infergen.

The lowest count I had with the three prior treatments was 380,000. With Infergen, it was 6000 after three months. You do the math.

However, let me point out again, that I was taking Infergen at 24mcg daily for three months. The reasoning of the doctor to put me on this mega dose was that nothing seemed to work before, and he was testing the waters with this mega dose, which was working while it was slowly killing me.

I would recommend ONLY the standard Infergen dosage, unless you are prepared for the consequences... good luck...

Magnum

[willows]

Thx for the info, like you, I will try ANYTHING, I am fond of my liver and really want to keep it as original equipment.  Peg was hard for me, lots of sides, so I am prepared for the rough road.  
Waiting is the hardest, I think, we all get so used to waiting for so many different issues around Hep C.  Perhaps it will not always be this way, I like to think I am an early bloomer, that someday tx will be easier and people will not be so stupidly rude about the virus, I wait for that day too.  Bloomin, waiting, wondering, whining.
Willows

[NYgirl]

Magnum was on Infergen but he was on a VERY VERY HIGH DOSAGE of it and had a NIGHTMARE with it.

I think there might be somebody else in here who is on it presently but I just can't remember WHO.

If I don't stay clear I am going to do it as well.  I want to get rid of this stupid disease - I would try it and see if the sides are tolerabele.

Not everybody gets the same sides from the same meds as you know...maybe this is your LUCKY time and you wont have any reaction from it at all!  I sure hope so!  :)