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Avatar universal

newbie to Incivek treatment and im here to chat!

i started my treatment last friday so a week tomorrow!! i am 23 and i was born with hepatitis (from my mother, obviously). but i went through the pegasys and ribavirin when i was 13 and it was ok. i just remember being somewhat tired, thinning of hair, weight loss but i was loosing too much weight and nothing was changing so i was taken off the medicine. im thankful to say today that in in the Incivek treatment and im excited! i really hoping for great things. im nervous as well too... i dont want to lose my hair and get the "ribavirin rash". not a lot of my friends know i have hepatitis c. because they dont understand. they just see and hear what on the media. that drug addicts are more likely to contract this disease, most people dont know that you can get it from birth. but thats besides the point. yes, i could have taken better care of myself in my teen years, but i was angry and rebellious about my disease. i thought that it wasnt my fault that i had this, so why cant i drink and do drugs like everyone else. i want to ignore, forget and enjoy like everyone else!!!! but now, as i mature more, am still angry at what i have to live with but i cannot get better by doing those things and thinking that way. i have stage four liver cirrhosis and i cant reverse it, but i can prevent more damage. just venting.... i would like to hear what you all have to say. also what are other people symptoms and reactions to Incivek??? and eating these 20 grams of fat snacks are hard to come by. especially when you're not hungry!
<3 alycat
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Avatar universal
just want to say good luck and i hope you beat this rotten virus this time,you poor bugger,all the best.hows the symptoms going?
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Avatar universal
thanks lapis. ya i was told that 20 grams every time i take incivek. but ya im finding more foods. and yes, i hope this is my last time!!!!!!
Helpful - 0
683664 tn?1330966324
Hi.  I finished tx in 2009, took Incivek in a clinical trial, finished tx at 24 wks, and have been clear for more than 2 years.  I'm much older than you : ) late 50's.  In fact I have a son your age.  
I was told to take foods with fat with my doses but no one said "20 grams."  Because we're supposed to take Riba with food also, I found myself eating four small meals throughout the day.  Any of the full fat dairy products, which so many of us regularly avoid, will help to get you there for the fat grams:  ice cream, yogurt, cheese, sour cream, cream cheese.  Milk+PB+crackers was usually palatable.  French toast made with milk or cream, one egg, butter, and syrup on top, yum.  That was one of my favorites, quick to make and it smelled good with a little cinnamon on top while cooking.  I got really picky about food too.  Anything that smelled too strong made me gag.  Hubby smoked a piece of meat, proudly brought it inside, and I couldn't go near it, lol.  I ate lots of ginger, ginger candies, ginger teas, ginger in my food, and it did help.
I didn't gain weight on tx as some have said they're doing.  I lost maybe 5 pounds over the entire tx, which was great for me.  My hair did get thin but it didn't all come out or anything.  It did get a little fuzzy looking.  But I run a business and no one ever commented on how I looked so I guess I must not have looked too different to them.
You're a brave young woman to be doing this again and I just wanted to offer my support.  I sincerely hope that this will be the last time you'll have to do tx, and that your sides will be tolerable.  Glad to answer any more questions you may have.

Lapis
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Avatar universal
It is messed up how somethings end up, but im learning its those things that make u who u are and make u a stronger, wiser person
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Avatar universal
Thanks guys!!!! But yes i mainly get the strong effects from pegasys. And i feel already tired from nuts-- trail mix, almonds, peanut butter. Haha. But if anyone is interested, for every tbls of coconut oil (virgin/organic) its 14 grama of fat. Look it up! I use it on toast and i want to try it in a fruit smoothie.
But i feel good overall. Tired. Some mild effects. But nothing that distract my daily living. But thank u for the support. I would like to hear more of your stories and comments. I dont know anyone personally who has hepatitis c.
Helpful - 0
Avatar universal
I started week 7 today and so far I don't have a rash. My side effects sound similar to what Joe described. I was UND at week 4 so that makes the sides totally worth it. I have also had low platelets, low wbc, and low hgb. This is my 3rd time in tx so I am excited that it is working this time. I am 32 and got HCV from a blood transfusion I had as a baby. I found out what I was 19. Unfortunatley I also have cirrhosis but it is compensated and I have been lucky that when I am not in tx I feel just fine. I was a very calm teenager and my sister was the wild child and she is as healthy as a horse. We always joke about the irony that I am the one with the rotten liver, but hey that's just how the cookie crumbles! :) It's been tough to find the fatty foods but lots of people on the forum have great suggestions like nuts, avacado, whole milk smoothies, and ice cream. I have been eating a lot of peanut butter. Ginger ale helps with the nausea. Good luck!
Helpful - 0
1747881 tn?1546175878
Well alycat you sound like a very strong young woman, incivek also has a rash unfortunetly(52% expirience mild to med rash) but everyone will react differenly. I don't have it yet but I just started treating yesterday. If you go to incivek website and look at prescribing info it will list all possible sides with % of patient affected. Welcome to the forum and remain positive and strong.

Keith
Helpful - 0
244899 tn?1313624639
I'm on my sixth week of treatment und at 4. My sides come and go mostly fatigue, nasea sometimes, haven't got the rash or losing any hair yet, but it's still early. How are you felling? Good luck. Joe
Helpful - 0
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