Infergen

[gems3]

My husband was dx with hep c in 2002.  His biopsy was grade 2 stage 2. Viral load was 2.1 mil. genotype 1a.  His first round of tx on peg + riba was unsuccessful.  He was considered a non responder after 6mths.  He continued follow up with his dr. who monitored his alt and ast.  Both were above normal.  He is currently in his 29th week of infergen 15mcg + 1200 riba daily.  Due to his work schedule his blood work has been done at odd times.  His base line viral load was 5.1 mil.  His viral load at 3 weeks was 210,000, at 16 weeks it was 109, and undetectable at 24 weeks.  The side effects are much more challanging this time around.  I am more hopeful than I have been in the past; however, I remain cautious with respect to him becomming a sustained responder.  As many of you know the wait is the worst part.  It seems as though he may be going through this to be let down in the end.  I was wondering if there may be any of you who have experience with the infergen tx, and if so if you would be willing to share your experience?

[hdkash]

So my results are back and they are mixed. Quick history, When I switched to daily my VL was around 4K, 4 weeks into daily it was at 1800, at 8 weeks it was 800 and today at 12 weeks I am at 670. I started with weekly Peg for 4 months and then Dr switched me to daily Infergen. I am going to keep going to the 24 week mark and test monthly along the way. If I can get some sleep and stop the headaches I can make it through, but I don't like all the perscriptions - Infergen, Riba, Effexor, Ambien, (new) Rozerem, Norco, (new) Fiorinal. Had a long talk with the Dr and we decided since I am early Stage4 we need to keep doing everything we can. Hardest part is not knowing when we can make the call. Feels like I am in limbo much of the time.

[Lonestar823]

I'm a gambler and I'm willing to wager you'll be undetected. ; ]  Wanna bet?  1800 at four weeks?  That's great and when they find you undetected at week twelve you'll find an odd kind of peace comes over you.  Somehow after I was undetected, difficult as the infergen is, it seemed in a way easier hd.  Another big plus is that you won't have to do the long haul (72 weeks) as some of us have had to do.  Please don't give up yet.  It's just a block of time divided by four and you've just knocked one off.  Three more to go.
Please keep us posted.  
My best to you and your family,
R

[hdkash]

Thanks for your words of support.
My count was 1800 4 weeks into daily Infergen so I will get new results on Monday Jan 14th. This will be the 12 week mark and if it is not UND (or very close) we will switch to maintenance treatment. Part of me hopes it is not UND, I am getting tired of treatment that does not seem to be working. I started weekly Pag back in June and here it is 7 months later and still detecable. I f I can acheive UND I am committed to the full treatgment but I am not as hopeful as I once was.

[Lonestar823]

Hello dear Gem, I'm not surprised you don't find much on Infergen.  When I treated with it, I didn't either.  Really, I felt like I was flying blind.  Recently I read that the company Valeant Pharmaceuticals was selling Infergen because of poor sales.  No wonder too because it has such a bad rap.  I'm not saying it's reputation for bad sides isn't deserved but I can think of hundreds and hundreds worse things in life.  Thousands really.  It can work Gem.  I am testament to that.  It didn't seem like a very big price to pay for me.  But then, that's me.  I've seen what this virus can do to us, up front and close.  And I know Gem, I was one of the ones that suggested 72 weeks.  I'm not a big strong person physically.  I did it.   And I suspect your husband can too.  Sometimes this is more frightening for people who love us than it is for ourselves.  I know my husband was very afraid for me.  He was so afraid that I began to hide things from him.  My greatest fear was that my doctor would take me off.  Let your husband and his doctor decide Gem. They'll know best and you know where to find me when you are afraid for him.  
Love,
R

[gems3]

Thank you for your response and congradulations on your svr.  There does not seem to be alot of current information with respect to infergen.  Most of the information is from 06.  I have all the confidence in the world in my husbands hepatologist.  Although I must say that I feel like this virus has total control over our lives.  My husband has taken alot of this in stride; however, this go round has certianly taken it's toll.  I am just concerned that should he not be an svr he may not try again.  The odds do not seem to be in his favor.  I have been reading many of the postings on this site and the majority seem to indicate that he would need to treat for 72 weeks.  I am not sure he can hang with that.  Again, thank you for your response.

[hdkash]

I started daily Infergen (15mcg) 3 weeks ago after 4 months on weekly Peg-Intron, I did not have a 2log drop but did have a 1log. I also take 7 ribas a day and Procrit weekly. So far I am still working but it is a very high stress position. Most mornings my wife has to push me out of bed to get going, all I want to do is sleep. I will have my labs on 11/12 and see the DR 11/21 to see where my viral load is. Unless it is not UND I plan on the full 48 weeks of daily, I will beat this, my biopsy was early stage 4 so whatever it takes. Glad to hear from others that have made it through.

[Marl37]

I just finished up 6 mts of tx of daily infergen (cut down from 15 mcg daily to 12 mcg daily) and 600 riba daily(cut down from 800).  Cuts were due to the side effects.  I was lucky, my job enables me to work from home.  No way I could have gotten up and gone to work.  Could barely move from my bed.  Unfortunately, my vl only went from 308,000 to 12,500 - not a 2 log drop.  GI felt I should stop tx due to the side effects and said since I didn't drop 2 logs it wasn't going to work.  Seeing a hep doc nect mt.

[Tallahassee]

Yes, I completed 98+ weeks of daily Infergen (15 mcg daily during the 1st year, ~avg. 18 mcg daily my second year), plus 1200 - 1400 mg daily of riba (my weight at the time was ~110lbs).

I admit, it was difficult, especially the first 3 weeks and my 2nd year. (All my prior Interferon and Infergen treatments I was doing almost great -- side effects wise).

I don't know if I will achieve SVR, but I have a little hope (at 3.5 months post tx I still was UND).

All the best and we wish your husband straight highway to SVR!!

[Lonestar823]

  Good morning and thanks for the into m'lady.  Yes, I finished 73 weeks on the daily last year and I'm now officially svr.  I only knew one other person who had finished the treatment while I was on it.  Since then there are others here who have.  Tallahassee, Triggertime, Captainhardass  and then there's Honda Patches who has just started.  There may be more too.  This treatment doesn't have the most popular reputation Gem.  The fact that your husband is still working 29 weeks into this tells me he has incredible endurance.  I also didn't clear until somewhere between week 20 and 24, that's why the 73 weeks.  My doctor wanted me to stay undetectable for one year while still on the meds.  Recently I received an email from someone who had followed my treatment from afar through these posts.  He also achieved svr three years ago with infergen.  Here's the last two paragraphs of his email to me.  I hope he won't mind.





" I have always been pleased to read your posts regarding your path to SVR because they helped me to feel a little less like the lone survivor of a plane crash who is always asking the question, “Why me and not all the others?

With that said I would offer again it is a viable option for others who have been able to tolerate the other treatments without clearing. But even under the best of circumstances those people choosing to follow the infergen path should recognize the real possibility that they may be facing the most difficult mental and physical fight of their life. It is possible. You and I are testaments to that fact. My life is better now than I could have possibly imagined only a few short years ago. Sad but seemingly true though, often times great reward only follows great risk.





Godspeed,



OB"



You may email me anytime Gem.  Just click on screen name  and you'll see how to do it.

And like OB said,

Godspeed,

Rebecca

[ladywhy]

There is a woman (Lonestar823) on the forum who txed daily with infergen and she just announced 12 months post treatment that she IS SVR. You might want to give her a shout out. She doesn't come visit on a daily basis...but you could send her a private message. look for the post on Community side..."Lonestar is SVR"...
Blessings to you.
Y