Thank you, I appreciate you sharing that info. Yep, you've got a full time job and then some. I limped to the finish line on SOC and I can't not work. Need the money and the insurance. I have a lot of responsibility at home too and the side effects from Infergen worry me. My whites tanked big time with SOC and I hated the effects of Neupogen about as much as the interferon. I'm mulling the options over in my mind, don't need to make any decisions right now but regardless my head has to be right. Actually, if biopsy shows I need to treat again sooner than later I'll see how I respond after 6-8 weeks with Infergen and a higher dose of ribavirin. If I'm not making good progress I'll stop.
Trinity
4 months ago my doc returned from some kind of conference in CA on hep C and he was still pretty disappointed with the timelines. I also read those articles, since 2006, and every year the promise there is "another 12-18 months"... So, realistically, I tend to agree with my doc's estimate, nevertheless - it would be awesome if he is wrong. I personally chose not to wait but try to treat as soon as I could for 3 reasons.
First - the longer you have the virus, the harder it is to get rid of. And I suspect I was infected as a newborn in 1976.
Second, HCV is so unpredictable, I've known people who seemed to be able to manage their condition without treatment successfully for a long time and then their health detiorated drammatically within a very short period of time all of a sudden. I didn't want to take chances. I guess, one have to choose which risks he wants to choose - risks of sx or risks of losing your health too soon, too fast.
Third, on a personal level, I have long-term goals, my life is about to get crazy busy on a professional level. So, I chose to undergo tx now, and not to risk my career in case if sx are too harsh.
These post-tx month before you get your SVR or non-SVR verdict are pretty intense :) I am still waiting to know if infergen worked for me. 5 more months. I will post my results then.
I am a stay-at-home mom now, so, no, I was not able to work... unless taking care of too super active 2 year olds (my twins) while my husband was deployed to Iraq doesn't count :) I would say my kids keep me very busy for 12-14 hours a day. And it's not like we sit around and relax, we are really active. I'd say when I did work and didn't have kids, my life was a lot more relaxing :)
I do understand that my "easy" tx on infergen was rather an exception than a rule. My hemoglobin dropped to 8 by the 4th months of being on this drug and only now is slowly getting back up. Other blood values were pretty scary. I remember when my regular PCM saw me she couldn't believe at first that I could make it myself to the office, as my blood values were so low. I lost 30 lbs during treatment. However, my liver doc was against using procrit, he simply managed me within the 8-9 hemoglobin range with riba reduction - my weight allowed it, as even 800 of riba a day was my max dosage as per weight, and I started tx with 1200 daily. So no matter what, even with reduction I was at pretty high riba levels. During last 2 months of tx I experienced some brain fog and heart murmurs - all of that is gone now, 1 month post tx. I am waiting for my PCM appointment to have my heart checked out now, just in case, as some heart conditions run in my family. Other than that - I definitely expected infergen tx to be much harsher than it was.
Tired, not typing well
Correction: at this point I don't feel like I've got a whole to to lose.
"Will we still be alive to have it? Or be too old to have it?"
That's based on degree of liver damage. I'm a stage a late state 3 and I did 72 wks of SOC to no avail except maybe slowing down the fibrosis. It wouldn't be prudent for me to treat with SOC again and except different results. You've never treated with pegylated interferon so you really don't know how you'll respond. If it looks like the FDA is dragging their feet approving the PI's by next year and biopsy shows fibrosis is advancing I will consider Infergen. My job is very demanding to and quite honestly I don't how the hell I'm going to do it but I'll do it even with a 25 percent chance of SVR. Of course I want better odds but I also don't want to transition over to full blown cirrhosis. This whole hepc thing is friggin balancing act, a game of chance and at this point I don't feel like I've got whole to loose. Maybe an SVR or only stopping the fibrosis from advancing, to me either way it's a win win.
Trinity
Were you actually told that your treatment with non-pegylated interferon disqualifies you or is it that you just don't see any trials that mention it specifically?
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