Daily Infergen

[agatha56]

I would like some input from anyone on daily Infergen. I am contemplating this tx. and at the same time have been
offerred an excellent job.I only work weekends at this time and the new job would be 5 days a week. I do not want to commit to a new more demanding schedule and then not be able to follow through because of side effects. Can I get some honest input from some of you guys who are doing this tx or who have done it in the past. I would so much appreciate your help.

[Dee1956]

Hi there, I am sorry you are having to choose, if it were me I would not treat while starting a new job.  I started a triple combo trial after getting a new job, missed a lot of work and ended up losing my job.  There were people who resented me at work as they had to carry my load when I could not work.  The doc I see at the Liver Institute in Fairfax VA said it would be worth it to wait until the new drugs are FDA approved sometime in 2011.  I know you ant to get rid of it, so do I however I was told if I am going to treat again to wait for the new drugs.  They are anticipating a shorter time to treat as well.  I don't really have a choice as my doctors will not treat me again until the new meds are approved.  If I were you and knew then what I know now I would not have treated but continued in my new job
I wish you all the luck.
Dee

[JennyPenny2009]

I was a non-responder to SOC and did Infergen 15mcg daily when the standard dose was 15mcg 3 X week. I've tried every interferon combo they have. Infergen was by far the worst. The fatigue was unbearable and actually my viral load went up, not down. You have Stage 2 disease. I'd wait for the PI's. Treating hep C is never an emergency. It would be very odd if you progressed too quickly to be able to wait. I have been Stage 4 since at least 1992 (Geno 1b) and I am still here. Good luck to you.

[FlGuy]

Before going to infergen, I'd try a different approach first.  I think you said you got to und at week 12 and relapsed after 24 weeks as a geno 2.  Find a doc who is willing to be aggressive and knows his way around personalizing treatment.  Consider with him things like increased dosing of interferon until undetectable, increased riba (expecially if you were not weight-based the first time), proactive use of rescue drugs, early and frequent testing (both vl and cbc), extending to 48 or some number greater than 24 - based on when first undetectable.

[agatha56]

Thank you. How are you now? I hope you have recovered. THIS DAMNED DISEASE!!!!!!!

[Magnum]

I did and it almost cost me my life. Keep in mind that I was doing 24mcg daily for 4 months instead of the traditional 15mcg. The doctor said that he will not use Infergen on any of his patients even at the normal daily dose. Must be a reason..... Better think adbout it... better think about it...

Read my past posts on this subject...

Magnum

[agatha56]

Have you done Infergen? You sound pretty adamant.

[Magnum]

DON'T DO IT...

Magnum

[agatha56]

My odds are only 40% per MD. I just thought that I could hold off more damage while I am waiting for the new meds. MD says I can still do the PI's if Infergen is ineffective. I just don't know when these new meds will be available. ****, it could be 3 or 4 yrs before the insurance companies will pay even if they are FDA approved. There are just too many IFS with this damned virus. You know some people live to ripe old ages and never have a problem. I am 54 now, just had a birthday and would really like to have many more. Anyway hang in there and I will do the same. Things will get better for us.

[Trinity4]

Oh yeah, I know exactly how you feel.  I live with this everyday and sometimes I feel like any day my liver will go south but I'm a numbers kind of gal and the numbers with Infergen aren't convincing enough having relapsed after 72 of SOC.  No drug use here either, transfusions in 1971 and 1981 but I figure with the degree of liver damage I have I must have been infected in '71.  It's something like 6% of the population was infected by transfusion prior to 1992.  Lucky me hey?   I was so angry at first but now I don't care, I just want to get rid of it but I want better odds and I don't want to kill myself in the process.  

Our livers caught a break with treatment and I really think I'll be ok until the PI's come out.  You're a stage 2 and I really think you'll be ok as well.  I'm going to have a biopsy done in October which will be three years since my last one.  What if I have crossed over to stage 4, what can I do?  I'm still going to wait for the PI's because I think that's the only way I can SVR.  

I don't know what the odds of SVR are for you being a geno 2 and treating with Infergen.  It's probably higher for you than me.  What I wanted you to know is you'd be in for the ride of your life if you choose to treat and may very well put that new job in jeopardy.

Mind boggling isn't it?

Trin

[agatha56]

I am just worried about waiting because you just never know how fast this damn disease can progress. It's been almost a year since I finished tx and I wonder where I stand at this time,don't you? I get angry sometimes. Hell, I don't even know how I got this. Never did drugs. Either from an ex boyfriend or more likely from splashing blood in my eyes doing a procedure at work 19 yrs ago. The woman was 90 yrs old but she had  had blood transfusions during a surgery she had. Just my luck!! Now I freak when I have to take care of patients with Hep C. I know it is ridiculous to be afraid but I am. I am sure that I could probably get a different strain on top of what I have. Sorry Trinity just had to vent I guess. I am here for you if you need a shoulder to cry on.

[Trinity4]

Agatha,

I relapsed after 72 weeks of SOC and seriously considered Infergen.  You are a geno 2, stage 2 and I am a geno 1, stage 3/4 and the odds of SVR (25-30%) were not impressive enough for me.  

You experienced extreme fatigue with SOC and big drops in blood values.  My friend Debc (geno 1) did Infergen for 72 wks and achieved SVR but I've heard her state many times there was no way she could have worked while treating with Infergen because the fatigue was brutal and her blood values tanked big time and she was on Neupogen and Procrit.  She treated with SOC twice prior and relapsed but worked both times.

If you're serious about that new job you may want to really think about treating with Infergen.  You do have time to wait for the newer drugs and as a nurse working 5 days a week your schedule will be very demanding.  I have an office job, sitting most of the day and even though I don't have the luxury of waiting for the newer drugs I also know I have to work and because Infergen is such a brutal treatment to me the risks outweigh the benefits.  I've heard a few people say it's not much different from SOC but the majority say it's hell and I tend to believe that.

Good luck
Trinity