Interfergen

[virtualsuzyq]

Hello to all.  I am 1b and will start Pegasus/Copeg very soon.  I have seen Interfergen mentioned in my readings.  Some people take it every day.  Is this a more successful treatment than the interferon?  Is it available in Canada?  Thanks.

[MichaelT]

Infergen is a consensus interferon. Unlike the alpha-interferons used in PegIntron and Pegasys, it is not a naturally occuring interferon.

In the U.S., Infergen was approved to treat relapsers or those that did not respond to the alpha-interferon. This was when alpha-interferon monotherapy or combo-therapy (with Ribavirin) with dosing of the interferon three times a week (TIW) was standard treatment.

Some genius doctor (heavy sarcasm) figured out that daily dosing of  interferon, in this case Infergen, produced better results than TIW dosing. So, prior to the pegylated interferons PegIntron, Pegasys, daily Infergen + Ribavirin was the best show in town. Daily Infergen + Riba is still a good option for retreatment.

Once upon a time, I read that a pegylated version of Infergen was being developed. I've quit constant active research, so I don't know where it is in development/testing.

I hope this helps.  -Michael

[scruffy]

I believe that most who are treating with infergen are people who have already shown a less then effective result from using one of the pegylated interferons. As a type 1a I treated with Peg-intron and Rebetol(Ribavirin) for 48 weeks and relapsed. The general consensus is that side effects are milder with Pegasys and the copegasys is just another brand of Ribavirin. As a person treating for the first time I believe Pegasys and copeg are a good choice and if I were to treat again those are the drugs I would choose to treat with due to the milder sides. Someone may give you more helpful technical info here. Be patient though as weekends can be slow on the forum. frank

[virtualsuzyq]

Thank you so much for your prompt answers.  The info really helps.  :)

[jmjm530]

Infergen is manufactured by Amgen who does not have the financial clout of a Roache (Pegasys) or a Shearing Plough (Peg Intron).

I'm thinking for this reason (at least in part) they've been relegated to "cleaning up" the mess left by the other two drugs in hard-to-treat cases, while the big boys get first shot (and the big money)in most cases.

One would think that if Infergen has a better track record for re-treatment, then it might be better for treating tx naive patients.

So where are all the trials in hard-to-treat geno 1, tx naive patients pitting Infergen against Pegasys and/or Peg Intron? I coldn't find any although the Ideal trial seems in full swing pitting two almost identical Pegs against each other ad nauseum :)

The only thing I read about was a trial with geno 2's and 3's which showed no difference between the peg's and infergen. But with the high SVR rate in this group, this trial really doesn't offer a lot.

Some might say that Infergen isn't used initially because of it's "severe" side effects. But at least on an anecdotal level, many doctors say the sides are identical. In fact, some doctors are using lower doses of Infergen with success and report very minimial side effects. Still no studies that I know of.

So unless you want to go where not too many people have gone before, then you're stuck with Pegasys or Peg Intron initially.
But I'd really like to see some decent head-to-head trials of Infergen for tx naive geno 1's.

(Most of the above is simply speculation and editorial. I'm not a doctor, haven't done any studies, haven't found any studies, so have no idea if Infergen is better than the Peg's, although logic suggests it might be.)

Big drug company rant over. :)

-- Jim

[kpj49]

At 5 months of tx, my blood test showed only a 1.5 log drop (before this I haven't been tested, the doctor wanted to wait).  So now he has upped the the PegIntron shot from .04 to .05 and kept the rib at 1000.  I have lost 20 pounds so that should help.  So after a month, he wants to check again and if I haven't done the log drop, he wants to discontinue treatment.  I have no unbearable sx, just a little tired and weak and little things.  He tells me that daily shots of interfergen for a year is the next thing.  (I am 1b, stage 2...3 for the other thing.)  That sounds really unbearable.  What is next for non-responders?  Do we keep asking for this other treatment...or do we stop and just get worse.  I know everyone is different but if we try and take care of ourselves, how long til it gets bad?  Or do we just live on and slowly fall apart? In other words, what is next?

[jmjm530]

Forgot your profile, maybe you can update.

Is this your first tx? If so, I don't know why you'd be injecting three times a week. Here, most treatment naive (first-timers) use either Pegasys or Peg Intron, both pegalayted inteferons.  Some doctors double-dose, but three times a week would not be the norm.

On the other hand, maybe your doctor is using consensus inteferon (Infergen). I'm not as up on it, but Infergen used mostly for non-responders, or possibly slow responders. I think it's sometimes injected 3X a week, but often it's a daily injection. Not sure what the studies say regarding SVR with the various injection frequencies. I have heard, however, that lower doses have similar SVR's with fewer side effects.

Don't think you want to use the older non-pegalayted, 3X a week inteferon. Probably best you ask your doctor directly what they have in mind.

-- Jim

[iceboy]

Hi there. thanks for the response. Don

[scruffy]

Good Rant.

[virtualsuzyq]

Very interesting comment.  I, too, wondered why Interfergen wasn't used first.

[iceboy]

Thanks boys for the reply to my qestions on the older thread re interferon. I have sort of left it out until now to dig into these drugs. Wasn

[jmjm530]

What kind of skin problems have started again?

Inteferon and/or ribavirin can often cause flare ups in pre-existing skin conditions, way beyond the more common "riba rash".

If you haven't already, now might be a good time to find a really good dermatologist to have in your back pocket if things flare on tx.

In my case, I've been doing some topical steroids plus 3X-week UVB Narrow Band light therapy for what appears to be (2nd biopsy pending) either psoriasis, Lichens Planus, cutaneous t-cell lymphoma, or a little bit of each. :)

People haved been pulled off treatment for severe skin reactions so early intervention is important.

-- Jim

[MichaelT]

PegIntron <i>should</i> be dosed at almost 2X a week. Pegasys is good to go at 1X a week. Infergen, and non-pegylated alpha-interferon should never be less than 1X daily. At least one study evaluated 2X dosing of Infergen - which actually makes sense for non-pegylated interferons - and was, if memory serves, quite effective.

-Michael

[iceboy]

About 13 years ago I got blisters all over my body, especially on hands, neck, palms. They grouped and made scabs. It was thought to be allergy for something, never found out what. I was severely ill, and completely drained from energy. This lasted for a year. I have been looking at the blood tests from that time and there is nothing out of the ordinary except AST and ALT are just about over the limit and bilirubin over limit. on CBC I was (Am) low on Hemoglobin, % RBC and MCV, but that could be related to Mediterranean syndrome. (some type of sickle cell?)

Now it has started again, but at the back of my calf

[iceboy]

Thanks for this michael. I can hardly wait to see my doctor to find out what she plans for me.

got the Biopsy date, 30th of august. tataraa. Wants me in for blod test before (guess thats for palatelet)

Jim, I did do some searching on the T- cell when you told us yesterday (day before!?) Seems to be quite complicated study. But you see, we care for you, not only demanding advice from you. (Im obviously in good spirit. I should go and do something)

[susan400]

I think that some of the skin problems related to treatment is probably of a yeast nature.  Way back when I first started treating many years ago, I was getting constant yeast problems, both in my throat and at the other end.  I started eating plain yogurt every morning and this has helped a bunch.  It has to be the type of yogurt that has the live cultures/acidolphilus.  A lot of the fruity yogurts don't use the live culture and therefore would not be effective.  Anyhow, yeast infections are a common side effect of treatment.  BTW, this can also occur in a man, too.   I have a friend (w/o Hep C) that had such a serious problem with yeast that it became systemic.

Susan

[jmjm530]

Thanks guys. I've been off yogurt for a few weeks so I'll give it a try. Right now there're thinking psoriasis, some a non-hodgkins skin lymphoma, or other autoimmune skin problems, but they spend so little time diagnosing (in and out in five minutes)that it's easy to get that unsettling feeling they really don't know. UGH! I'm sure things will get better when I'm off these drugs.

[jmjm530]

Not nearly as bad as yours, but I've had some sun sensitivity from the riba, but mostly on my face. I found a #30 sunblock "for sensitive skin" at the drug store that seems to work OK, not that I leave my couch much these days.:)

Ironically, I'm currently being treated 3X-week with narrow-band UVB (burning rays) for my skin problems -- too much of my body is affected for topical steriods. One doctor wanted to start me on an injectible biologic called Enbrel (etanercept). But we're reserving that as a last resort. I'm not crazy about the adding another potent drug to my hep c tx although some preliminary work has been done with Enbrel and Hep C.

In any event, based on a recent skin biopsy, some of the "psoriasis" now turns out possibly to be cutaneous t-cell lymphoma, a form of non-hodgkins lymphoma. It could also be mixed up with something called Lichen Planus. Boy this treatment has fun sides. :)

I'm glad your're heading into the shadier months for your skin condition. I think I'll order that hat you mention for my UVB narrow band sessions that take place in a full-body sun chamber.

Currently, I wrap a shirt around my head as my face doesn't need the UVB treatment. However, that makes things very hot in the  chamber and yesterday I thought I 'd pass out.  The Solumbra material looks like it might be cooler.

For anyone with skin issues, a very good site for reseach and dx (lots of pictures) is sponsored by the New Zealand Dermatological Society.  http://www.dermnetnz.org/

-- Jim

[SJL]

I did 4 weeks of Peg-Intron/Ribavarin, cleared and then relapsed. Side affects terrible, 3 shots per week. I have just finished 56 weeks of Infergen/Ribavarin, daily injections. The sides were almost exactly the same, BUT, I had 7 months of undetectable virus. I will go for my 3 mth. check on 10/10.
I was a 1b, stage 3, and would be glad to go into more detail, if needed. I really don't understand why they wait and treat non-responders and relapsers only with these meds. I will ask my Doctor on 10/10. A word of advice-FIND A GOOD DOCTOR-I went to a Gastroenterologist only the first time, who didn't have a clue. I researched and found a Gastro, who also specializes in Hep C. He is the greatest!
Wishing you the best,
SJL

[SJL]

Should have read 48 weeks of Peg-Intron/Ribavarin.
Sorry!

[jmjm530]

sjl said prev: "I really don't understand why they wait and treat non-responders and relapsers only with these meds."
--------------------------------------------------------

We recently discussed this.

Hint: who funds more studies, hires more speakers, serves more free lunches -- Roache (Pegasys) plus Shearing (Peg Intron) or Amgen (Infergen) :)

Congratulations on SVR! BTW what was your daily dose of Infergen and Ribavirin.

-- jIM

[SJL]

I hate to think that this is true. As a Fund Raiser working for a hospital,I have found it incredibly hard to receive any funding at all from the drug companies. I know that I had to go on a wait-list for Peg-Intron for 6 mths.What you say makes sense, but I would hate to think that this is the reason. I know that dosing Infergen is much more intense and daily. Can you refer me to the location of the past comments? I am shaking in my shoes regarding my 3 mth. check. Most days have been much improved, but I still have those yuck days and a neurological problem. Are you still on treatment?

HAVE A GREAT DAY and I hope to receive your comments. For anyone which I was previously chatting with my pc died and I lost everything. I was Tess Marie, and my Doctor is in Lakeland, FL.

[jmjm530]

I forgot which thread (no real search engine here) but the gist was simply some comments as to why they don't treat geno 1's first with infergen since it seems a more potent solution.

I speculated it is because the big boys (Roache and Shearing) fund all the studies. In fact, hard to find a decent study on naive geno 1's treated with daily infergen/riba vs a pegalayed inteferon/riba. Seems quite strange to me.

But don't feel left out because I really know of no one who starts with infergen. In fact, I doubt if he insurance companies would pay for Infergen first. Which again is odd because you think they'd rather pay once than twice.

Yes, I'm a geno 1b in my 26th week of treatment with 1800/peg, 1200 riba/day. It's my first time being treated. Current plan is to treat anywhere between 42 and 72 (I've been clear since week 6) depending on a re-avaluation of my biopsy slides, how well I'm doing with side effects as I approach week 42, and possibly a Fibroscan test.

I was a little unclear about your upcoming 3 month test. Is this three months post-tx? Also, long have you treated total and with what drug doses, and when did you go non-detectible.?

All the best and good luck with the test results.

-- Jim

[SJL]

On 5/2/02, I was diagnosed with Hep c. The biopsy report showed 1B, grade 3, stage 4, probable cirrhosis. I went to a top Gastro and placed on a wait list.I started Peg-intron (.5 ml.) once a week & 1200 mg. of Rebetol (twice a day.) I had horrible side effects and the dosage was reduced to 2.5 peg & 800 riba for 7 wks. I then decided to raise the dosage back to .5/800, for the remainder. In Dec. of 02, after several months of undetectable, the Doctor felt I had cleared. I did a total of 48 wks. I then was notified that I was a non-responder and ultimately relapser was the term used. I dedided to research info & find a Hep C specialist who knew his stuff. I then started infergen/Riba on 6/04. Same staring dosage, but once again I could not tolerate. I once again had the meds reduced to .9 infergen & 800 Riba, only this therapy was taken daily. After 12 wks. a small amount of virus showed & from then on I was undetectable, except for 1 blood test which showed a trace. I finished this therapy on 7/04. I have had 6 wks., feeling rather well, comparartively speaking and a tough week this week. No energy-aching, dry mouth.As I an sure you know there is no rhyme nor reason, nor same side effects for anyone. I am scared to death to go for my 3 mths., labs. Due to my sides I have tried loads of precscribed drugs. If I can be of any help with any of your sides, or anyone else's, please don't hesitate. At times I felt as if I was going crazy, when the first Gastro told me he had never heard of the sides I was experiencing. It sounds like you are ploughing ahead with minimum sides. That is great. I would definitely stay in it for the long run. God is good & he has been with me every step of the way. I feel that my having gone through this is only to help others. Looking forward to hearing from you.

[jmjm530]

Thanks for sharing your story and offer of assistance.

Infergen is pretty strong stuff so gotta hope it brought down your virus for good! It's definitely worked for a lot of folks.

I don't think I'd wait 3 months to test -- it would drive me crazy. :) Legitimatly you could test any time. But a one month PCR makes snse because if you're still non-detectible at 30 days, that means you have about a 90 per cent of staying that way.

As far as my sides, if you scroll down to to the thread  "riba is more better" and look at my last two posts, you'll see why I'm hedging bets regarding tx length.

Sides have been a problem. First anemia, and then persistent  gerd (reflux), sinus symptons (sore throats, ear aches, etc.) and more lately skin eruptions. It sounds like you've had worse, and I really admire the folks that pick themselves up in spite of things and treat again. Not sure I have that strength, but if I get that strength it will be from folks like you.

-- Jim