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Interfergen

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.
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Avatar universal
I'm just beginning to treat for a second time with the interferon alfacon-1. I responded the first time with the interferon and rib and went in remission for a year or so. I am geno type II hopefully this will do the trick this time it will be a year of daily doses. If not then as always I lay may life in my Lord Jesus' hands, I know where I'm going anyway when this part of life is over. Ronster
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none that have reported actual SVR, mostly improvement in the alt/ast is what I hear. I know I would be looking for anything out there. did you check the clinicaltrials.gov for phase 3 trials?
I just went for my 9 month post tx pcr, and after 72 wks straight of torture, I had a hard time letting go of the meds, kept shooting half syringe for two wks, such is the fear of doing this again. I know we do what we have to, and that is all we are afforded in life. Tony tried the tx for the 3rd time and just reported clearing a few months back, he wanted to extend that time due to being the 3rd but they did not let him. It still worked. I now think that the virus might be weakened somehow by repeated tx in some folks, whereas in others it gets more stubborn. Susan400 is trying her 8th, I think, it seems to be working differently this time, you could ask her what she is doing. Please post a whole thread to those relapsers that re treated and achieved or are now achieving SVR, how many tries did it take them and with what protocol? It might give you more hope and a flicker of light. Please do it soon.
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SJL
Thanks Cuteus. I will stay on-line & I will get in contact with Dr. Cecil. I have received replies from him in the past. My daughter has suggested a Chinese Doctor? Have you heard if anyone has gone through their course of action?
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I guess the numbers speak, darn virus! I so wish the meds worked for everybody or at least a larger majority.
Please do email Dr Cecil, since he deals with a hard to treat population and has found individual formulas for his patients/
don't stay away, a lot of the oldies don't post, but they are still reading.
may peace be with you
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SJL
In answer to your question, my AST on this lab work, 8/30, was 258 & my ALT, 247. Alkaline Phosphatase 134. My AST had been running 38&37 the last 3 mths. ALT had been running 43&34. White cells,5.0& red cells 4.26. These numbers and diagnosis were given to me on 8/30. My VL will be back & I will see my Doctor on 9/13, for future planning. I had 5 good wks., and I can sure feel the difference now- fatigued, sore mouth, dizziness and headaches. How can this be when I have been off meds since 7/3? I thought all along that the meds caused these symptoms? It is very hard to accept this after almost 3 yrs. of treatment. I was diagnosed 1st. treatment as a relapser. I appreciate your responses so much as I am having a hard time speaking with my family about this---just to emotional. I used to say that I would beat this disease, now from a different outlook at this time, I suppose maintaining my liver is were I am at, until something new surfaces, BUT, I am willing to try alternatives. So, I guess I am not giving up!!! Take care & may God watch over all of us.
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Avatar universal
I remember your name, and some of your stats! so you don't know for sure if you have relapsed? there is still hope! are you relying on gut feeling?
I do hope it was enough and your system will kick out any remnants of hvc, as it happened with derail from Canada.
I can't remember if you were given Procrit also. These drs wait too long to intervene with that med, allowing for organs to go on with decreased O2. it can't be good!
What a trooper to go on even when the sides were hammering you!
let us know the pcr results soon.  Maybe you can email Dr Cecil at hepatitisdoctor.com?
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Avatar universal
I'll be gone for a day or so and will try and get back with some more thoughts if I can get online where I'm going.

Meanwhile, it doesn't look good with the dramatic rise in enzymes but let's hope that they were related to your rx drugs and not viral load. Do you know the actual numbers of your enzymes? Also, have you cleared all these rx drugs with your doctor?

Assuming you've relapsed, mainteance is one way to go. Another might be to look into trials with some of the newer non-inteferon drugs. You said you were "non-responder and relapser" -- do you mean you relapsed one round and didn't respond another?

Two other quick thoughts -- you might consider another biopsy at this point to see if all this treatment has helped your cirrhosis and also get an additional consult from a heptologist.

-- Jim
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SJL
Jim, I read all of your post & decided to go ahead with the labs yesterday, following it up with my Hepatologist today. VL won't be in for two weeks. My ast & alt didn't double, triple, quad, etc. it came in with a venegance, indicating acute Hep C., after two rounds of interferon. We are going to wait on the VL and then consider maintainence dosing. If we get the bad no's, we expect, along with maintainence, he has virtually said that I could try alternatives, as nothing will hurt.Do you or anyone on this information packed panel know of anyone who has tried maintainence or alternatives? It was a bum feeling after 3 years of therapy-but when I saw the broadcast of Louisiana, Mississippi, Alabama and knowing what it ha already done to us-Life didn' so bleak after all. I will not give up, I just need to formulate another plan. No one can give up!
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Avatar universal
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
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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.
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Avatar universal
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
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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.


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


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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.
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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
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Avatar universal
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)
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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

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