Infergen to Take or Not to Take.. Non-Respoder

[KDH59]

I really need to know what everyone thinks about a Non-Respoder to prior treatment.

I was told i had HEP C in December of 2005 and started treatment with Peginterferon Alfa-2a. I was Genotype 1 in stage 2 with a low Viral Load of 440,000. After 6 months i stopped treatment as a non-responder. My doctor asked me to wait a year and come back. Once back new test showed my Load was at 890,000. He told me he wanted me to start treatment of with INFERGEN. It said it had a success rate of "20% -- 25% for SVR in past NON-responders. So since i had a very,very,very hard time with the side effects before i was/am a little leary to start this treatment. Not just because of the side effect but because once i got the medince the new information data sheets enclosed now stated the success rate was now 3% to 12% for NON-responders.

SO i have $40,000 worth of this in my fridge...... Is it worth it to take it considering everything??

Please let me know....................Thanks Kirk

[sfbaygirl]

I can't speak for Kirk. I didn't know you were a non responder. Please check out some of the more aggressive tx's for you. Did you have enough Riba? Perhaps Double dose, add Alinia. I hate being a relapser, but it is a whole different ball game than a non responder. You really need to come up with a plan.  Good luck.  I understand why Kirk would think this way, but perhaps you didn't explain yourself.  

Linda

[katerika]

Gee Kirk, I didn't mean to be disrespectful.  The answer to your question... no I have not tried Infergen, but I also am a non responder to PegInterferon & Riba and am planning to retreat with Pegasys.

[miked]

Have you investigated the clinical trials with the new protease inhibitors?  I too failed my first SOC tx and treated again with VX950+RBV+INF for six months.  At 12 weeks post tx I'm still clear and my research says I'm now 94-100% to still be undetectable at 24 weeks post tx.

I'd advise you to go to www.clinicaltrials.gov and then type in protease inhibitor for HCV.

miked

[KDH59]

Zena & katerika....  as far as sucking it up,, don't you think thats an insult to me.

Since i was already on the pegasys and I am a non-reponder to the treatment...

Have either of you been on INFERGEN? no...

i was asking for constructive information,,,,not sarcastic remarks..... Kirk

[sfbaygirl]

I had a talk with HR and asked about non repsonders and relapsers. Yep, we are in a totally different position than those that are tx naive. I had a great fibroscan so my stage 1 gives me more time to wait for new drugs that will help maybe. As we know as relapsers our odds go down to like 30% if we retreat with SOC.  HR recommended to me to get on those anti fibrotics. He has seen someone at a stage 4 go down to a stage 2 just using these drugs. I hear Gauf has the diet on his profile.  I plan on doing this, as I am not going to tx again anytime soon, if ever. Those of us that are stage 3 or 4 should really consider these supplements and if on tx, consider oxymatrne (sp) and Alina. Even in the middle of tx. It could make a difference.  I wouldn't take it as a monotherapy, as it works best on tx and you don't want to become resistant to it if you go on tx.

Apparently at the Boston conference this year there was a big session on Alina, most likely why Hep/GI dr's that are up with the new drugs are putting people on Alina with SOC. They had a 91% success rate with Alina and SOC. Hopefully, many more Dr's will prescribe this. It is off label, but they can totally prescribe Alina if they want to!

That said, no Alina while not on tx, but while expensive the Anti Fibrotics are what we that are not on tx should be taking.  

[katerika]

Great advice. I am on a vacation from meds at the moment and enjoying my 14+ hemoglobin levels. I see my Dr. next month and we will talk retreatment. Last biopsy before tx was Grade 3 stage 4. I think you gotta suck it up and go for it, Shoulda and coulda will sneak up on you later, if you don't try now. If it doesn't work you'll know by 12 weeks, then you need to decide what next.
Teri

[zena49]

I relapsed back in 02, on peg-interferon. I now am 17wks into tx with pegasys, and was UND at wk 8, and it's not been a cake walk but these tx are not near as bad as the interferon was. So just my opinion suck it up and go for it because your liver gets a rest and you have better odds than you think. At least in your heart you did all you could do right. Lifes all about challenges jump on the wagon. GOOD LUCK

[sfbaygirl]

Ah, I hate to say that borderline anemia is NOT anemia.  You need to be a sick puppy with that anemia b/c of the anemia.  IMO.  I have seen to many people that didn't get so sick with anemia and never responded. Anecdotal, but IMO it seems necessary, although awful. You weren't on weight based Riba, could be why you didn't respond....just an opinion.  I think you will get SVR yet...me and Deb too.  To me it is a matter of getting the right drugs and the right amts at the right time. We will have our day and achieve SVR.  Holding out hope is essential. We will get there, it is a matter of time. Yeah, me and Kirk are NOT ready to tx now, but someday, somehow, we will have to and will.  I think we both hold out hope for our SVR, as well as all the relapsers and non-responders.  One day we will make it....I have faith we will.

[Deb_c430]

Linda ~~thats what I am talking about, quality of life!  I am so tired of this, but I do keep on keeping on.

I have been trying to get some info on alinia also, kirk to i think?

My GI says it is not cleared through the FDA yet,  yet I have read on here that Docs are prescribing it  so I am confuzzled yet again!  I do know it is an Egyptian study..    

I took  about  year break in between peg and infergen. I felt pretty darn good!  

I am on Effexor.  

Geesh  we are the forgotten ones!

Deb

[KDH59]

Oh i was borderline, right on the edge of being anemic.. And it was a fine line. I also was on Paxil too....  I lost 25 lbs too.   Kirk

[sfbaygirl]

I feel for all of us non responders and relapsers. We are in a different world. What are our odds as relapsers? Not good.  Sounds like many of us have long term sx that will not go away due to tx...... what about the quality of life? I need some!!! I agree, I spent too much time in the hospital and relapsed. It has taken over a year to even feel human again after tx. I am a low stage, I believe I don't want to do this ever again. If I do I am looking at infergon and who knows....double dosing, Alina, if I can get it, more Riba and unknown sx again? I am already dealing with Fibromyalgia and blood thinners for life due to tx.  Geez, I want to get rid of this virus, but at what cost?  What may happen next?  I had a rough time on tx and was a slow responder.  Yes, I don't want to give up, but how about the quality of life?  I can't do this again soon. I need a big break and hopefully new drugs will be there for me when I decide to tx again.  Yuck is all I have to say at this point.  I am trying to make the best of my situation and get my life back together, with Hep C and sx I am stuck with.  

I don't know what to tell you except after talking privately to you, I don't think you had enough Ribavarin to clear.  If you have lots of symptoms maybe you should tx, if not enjoy life for awhile and check your stats.  This stuff is awful and I wish I could console you and say, yeah go for it, but I am not sure I can do that.  

All my best,
Linda

[Deb_c430]

I agree it is all about money with pharmetucial companies.  Look at the common cold virus, they can mask it's symptoms, but still can't cure it? Come on!  Same with diabetics, I have a bro in law who suffers  from it,

Though viruses do mutate and so maybe harder.

He has maintained for a long time that by now it should have been able to be cured and not just maintained, why hasn't it? $$$$  Insulin sales through the roof, add needles alcohol swabs,  You got big business!

I am starting to think also a lot more  about quality of life.  

[Deb_c430]

I agree it is all about money with pharmetucial companies.  Look at the common cold virus, they can mask it's symptoms, but still can't cure it? Come on!  Same with diabetics, I have a bro in law who suffers  from it,

Though viruses do mutate and so maybe harder.

He has maintained for a long time that by now it should have been able to be cured and not just maintained, why hasn't it? $$$$  Insulin sales through the roof, add needles alcohol swabs,  You got big business!

I am starting to think also a lot more  about quality of life.  

[KDH59]

Thanks,,,,   I am getting those deep down feelings like you with the quality of life and as DEB says"Sometimes I think us relaspers and non responders live in a totally different world" Now it is getting harder for us to be included into the new trials because, they don't want to skew the success of the medicine... they are all about money...


Thanks again..........Kirk

[KDH59]

Hi,  I am happy for you.  My concern is with the non-responders with Genotype 1.  We all know 1 is the hardest to get SRV.... Thansk i hope everyone keeps adding their comments. I still dont know what to do......Kirk

[bluetrane98]

  I would try the Infergen. I was a non-responder to Peg/Riba and then went on Infergen and reached UND shortly after. I had to stop tx however, due to a severe allergic rash, presumeably to the Riba. After a 3-month break, I went back on Infergen monotherapy @15mcg daily and had a 2-log drop by week 3, UND at week 12. I'm a geno 3 w/cirrhosis. I've had NO problems with sides on the monotherapy with the exception of some rash at the injection sites. I'm only at week 15, so can't say what the future holds, but it's thrilling just to hit UND and have a chance of success.

[Deb_c430]

sjl  you been through the mill! thanks for sharing your story, frightening.  

it is a personal choice, and somewhere along the line (this is time # 3 for me), you start wondering about quality of life and how much  this is really worth it.   As much as I want UND, and as stubborn and sure I will one day beat it.  

Lately i been wondering if it is worth wasting  time to try and clear something that will not be cleared.

Sometimes I think us relaspers and non responders live in a totally different world.

Still it is good to hope.

Deb

[SJL]

I felt compelled to answer your post, even though it isin't very positive. I guess the first thing would be to look at your stats and relate them to your age. I have done all three interferons. On the Infergen/ Riba-It appeared that it was working(6 straight undetected), and then whamo, back with a vengance.It was diffently the worse treatment that I did. Many, Many side effects. Even with rescue drugs, It really hit me. (I did 52 wks.)totally miserable, unsocial, mean, a witch, and angry. I was just sick! I am a 1B, stage 3, grade 4, with bridging fibrosis. I panicked, even though I worked for a hospital, and went to a Gastronterologist for 48 wks. of Peg-Intron.The choice of Doctors was bad and I feel that I wasted those 48 wks, only seeing the PA very few times. I then took a small break, and really researched comprehensively and found a wonderful Gastro, who specialized in Hep C. (remember that you are hiring your Doctor, and if it doesn't feel right-find one who does.)I am now on Rituxin treatments for cryoglobulemia which is a direct result of the Hep C, and I have developed Neuropathy-at times putting me into a wheelchair or a walker. All of this is contributed to the Hep C. For the Rituxin my Hepatologist set up a complete round of Doctors at Shands, a teaching hospital in Gainesville, Fl., a neurolgist, a orthopedic surgeon, a Rheumatologist, a Hematologist. They all were in agreement, no more interferon for me. Hallelujah!
I have done a complete round of Rituxin,( 4 treatments, once a week, given intraveniously and lasting 4 to 6 hrs. per treatment. I tracked all the numbers that Shands was looking at and compared them to my last CBC with my other Hepatologist. Their was minimal change. I felt at one time that I did feel better, but your mind can play tricks on you also, as you want so much to get better. Just this past Mon., I saw my original Doctor who sent me to Shands, and discussed alternative herbals,& infra-red laser treatments. He told me to go for anything I chose, as nothing would hurt me, and possibly do some good. The next interferon coming down the road is still about 4-5 yrs. out and will be the same meds, plus including more. It was explained to me more like a HIV cocktail.
No more of this for me. I have spent 5 yrs. of my life in a fog and miserable. At 64, I felt that I had to give everything a try. But, please remember that all bodies are different, and some people sail through the therapy with minimal side effects and reach SVR. It is a personal decision and depends on your enzymes at the time, and if you are having any trouble at the present.I wish you the best of luck and whatever decision you make will be the right one. If I can answer any more questions for you, don't hesitate to post, and I promise that I will keep it shorter!
Praying for you,
SJL

[KDH59]

THANKS,,, PLEASE KEEP YOUR THOUGHTS COMING. I STILL DON'T KNOW WHAT I WILL DO. I AM LEANING TOWARDS WAITNG FOR THE NEXT THING. I KNOW I DON'T TRUST INFERGEN TO HELP NON-RESPONDERS. I REALLY THANK YOU FOR YOUR THOUGHTS,,,, AND WAIT FOR MORE....

[Deb_c430]

I am on infergen,  I am not really confident it is working.  There are some bonuses tho,
it is giving your liver a rest. which is a good thing.

I have heard conflicting stories  of the "new drugs" not be any great bonus or cure for non responders.

My thoughts for myself, are it is better to be aggressive,  to take the chance you might be one of small %.

I have been trying to find some research on this Alinia also.

Good luck
Deb

[hdkash]

I was considered a non-responder after 4 months of weekly Peg and have now been on daily Infergen for 3 1/2 months. I am pushing on to 24 weeks of daily to see if I can get to UND. While the effects are not fun I am determined to beat this.

I say give it try.

[dointime]

I see you are stage 2 so you might not like to wait for the new drugs to be approved.  I guess if you don't do the infergen the next thing would be a trial with the new drugs which was accepting non-responders.  The only one I know of at the moment is the Alinia trial by Romark.  Vertex should be doing a phase 3 trial for non-responders but that won't be for a while.

St George on this forum is doing infergen with Alinia.  If you decide to go for the infergen you might be able to up your odds by adding Alinia.  Maybe he could tell you more about that.  

dointime      

[cruelworld]

common sense says no to those ridiculously low odds.

common sense says yes to the new drugs on the way.

[lor325]

i am considering infergen also .my friend's husband became SVR after 4 other tx. I am 1a VL 978,000 then at 6 months 119,00 stopped tx . Thinking of getting new doc feel kinda lost.