Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012
8 weeks Incivik - stopped early due to rash.
Continuing Pegasys and Ribavirin until January 2013 - 48 weeks
Undetectable from week 4 --> present
I saw this thread back when it was new, but didn't know exactly where I stood, as far as my Hep C timeline.
I have since come to the conclusion that:
A. I got Hep C back in '69~'71 in the Army from Jet gun injections:
B. I picked up Hep C in the mid 90s at work, doing building maintenance & construction in correctional institutions, where up to 40% of the inmates are HCV positive.
I can't "prove" that my Nep C originated from either of the above, but I'm pretty much done with speculating, and will just focus on getting rid of it.
Treatment halted on Aug.8,2012 due to vision problem. Aug.2013 SVR
Be strong when you are weak, brave when you are scared, and humble when you are victorious. - Unknown
I don't know if they are all atributed to the HVC, but my symptoms have been:
Fatigue which sometimes just comes over me in a wave and I feel as though I could just sleep right then and there.
I used to get really bad stomach aches, but not so much anymore.
My feet hurt when I first get up in the am, but by the time I hobble to the kitchen and make coffee, they start to get better. Sometimes by the end of the day they swell up and have a slight rash on the top.
If I get too much sun, I break out in a rash on my chest and back, and it won't go away completly for a couple of months.
My stomach hurts most of the time in the area of my liver. Not a bad pain, but just enough to nag at me that something is wrong. (My cat has started sleeping on my right side on top of my liver) (I think she knows)
Worst of all, I get these terrible headaches that wake me up around 4am, and hurt so bad I can't go back to sleep. I was taking clonzapam for anxiety and suspected it of contributing to my headaches, so I stopped taking it, they got better, but I still get them about 2-3 days of the week.
These are just the ones I can remember because I am also getting more forgetful than I have ever been.
Diagnosed Dec. 2008. Genotype 1b, enlarged liver. Started triple tx with Incivek on August 12, 2011.
Hi there Iris, Lizard and karen, yes I`ve had it too since the `70`s, and waited a long while to do tx until the success rates improved. What really made me sit up and take notice was when my late husband (who also had Hep C but was in denial) was diagnosed with Cancer of the liver. We knew he had cirrhosis too, but somehow he believed he was invincible.... he wasn`t.
When I look back now I had been struggling with fatigue and fluey symptons since the early `80`s at least - I remember feeling so exhausted bringing up my kids and doing part-time work, I used to wonder what on earth was wrong with me. Like you Karen I had to rely on coffee, also pain killers and sometimes valium, to get by. What a mess! Finally got the dx in `95, but by that time I could no longer work. So, yes, I do understand what you mean, and it`s very hard going.
I`m not being judgemental towards anyone who hasn`t decided to do tx, but I`m just so glad I finally did it, wish I`d done it sooner, but no point in looking back.
Good luck in your tx journey Liz and karen, and all the very best to you Iris. As Liz said, the new drugs for gen 1 are looking really promising with some good results coming in.
Love, Jill xxx
Jill (66 yo, lives in UK)
Gen 3a, 24wks Peg/Riba, Sep 2010 - Mch 2011
UND @ Wk.4 and @ EOT, SVR Nov 2011 --> Still UND @ EOT + 4 yrs.
and, yes it does look like we are the same era! one of the most comforting things about this forum is I don't have to be embarrassed about how I got the disease. I don't mind telling people I have it, but I don't tell many how I got it.. although it may have been one of the several Gamma globulin shots i got as a kid in the 60's, too...
Genotype 1b. Diagnosed 1991. Started treatment July 12, 2011, in clinical trials. Viral load greater than 1.5 mill. Don't want to be sick...
I know there are people out there who know more than me - the CC allele is found when they do the IL28B test - it is part of your own personal genetic makeup, not the virus. It is an allele on (or near?) the genes we have that deal with our own interferon production (I think, please correct me if I'm wrong). At first it was believed that people with the CC allele's bodies handled HCV better, and they respond better to INF tx, which may explain why some achieve SVR and some don't. The TT allele did the worst and the CT allele did OK. But of course more studies are giving us more information. If you can get the test done, I would recommend it - knowledge is power, and may help decide what course of treatment to do. They did it to me as part of this study I'm on, and it probably explains why my ALT/AST levels have never been really high, and why, after having this disease since the 60's or 70's, I'm still Grade 1, Stage 0. Here's what a google search pulled up:
Hey liz, i was wondering what is a CC allele? I thought that had to do with your genotype.
in the silence of the woods, you will not be alone- Chief Seattle
Genotype 1a ......
Liz, brit,... looks like we have come form the same era to be for sure. Hope to be talking to you girls as you undergo your quest to quench your fire-breather. Best of luck! xxooxx
Hi all, well I just want to say thanks for starting a new topic.
I've been living with the virus for almost 35 years. Have had fairly consistent high alt, and ast enzyme levels since i contracted the virus. There was a few years in the 90's when they fell within the normal range...
I came to this forum looking for people who have, for the time being, decided not to undergo treatment. I have decided against it thus far due to the horrible side effects and the slim chance of success due to the fact that my genome is 1a, and the risk of permanent side effects. I have dealt with debilitating depression, and I can't even fathom being more depressed.
I was wondering if there is anyone else out there who suffers hep-c symptoms like extreme fatigue, and bouts that feel like the flu, and regular stomach aches and headaches, as well as the challenges associated with trying to hold down a job, while feeling so crappy. Blessings to all who read this, Love, Iris