Incivek Treatment (Page 2)

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I am a 59 caucasian male. Have had Hep C for 30 years. Type 1a and 5-million viral load. Will begin triple therapy in two weeks (Incivek/Peg and RIBA). Waiting for agency to work out insurance, nursing care, education arrangements and all that. Should take first injection and beging orals around October 1. Any advice on how to prepare, what to expect, how to manage and cope and just to make my tx overall successful and as comfortable as possible. I will provide weekly updates for everyone to follow once I start. Good luck to everyone.

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21

Natasha my email address is xxxxx and I'm at xxxx [1]

[1] Editor's note - In order to protect privacy, we do not allow individuals to post their personal contact information on our discussion threads (except in some very rare cases).

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22

Day number four of the pill regimen and my have things changed! Okay, here's what we have.......Constant nausea accompanied by occasional vomiting and a lot of dry heaves. Severe cotton mouth, at all times. Fatigue. I tried to clean my apartment today, as I always do, and now find my self taking a break while I am cleaning, and then taking an even longer break between each room. Yesterday, I had to take a nap I was so exhausted, and while I slept I had the worst nightmare, oh, it wasn't pretty. Okay last night, same thing, another nightmare. But wait, the best is to come. Yesterday my rectum was lit on FIRRRRREEEE and has not subsided. I have experienced hemorrhoids a time or two in my life, but this is NOTHING like that, at all. I went out and bought some suppositories, and for a while it offers some relief, but not entirely and not long lasting. I feel as if I have an entire family of hemorrhoids living inside my rectum, It is the most painful thing......ummmm....ever! Not to mention, I am so very sure the onset of diabetes should be coming to visit any damn day with all this junk food I am eating to digest this incivek. Can't wait for that!

Okay, so let me not be Negative Nelly over here. I know no matter how bad this gets it will never be as bad as dying of liver failure. I just pray I am not doing this in vain, that the outcome I desire will ultimately be the end result.

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23

In my research/some solutions to your problems with your "bottom" is taking metamucil every day and regularly wiping with baby wipes to get the chemicals from the meds off, followed by hemeroid ointment. It has apparently helped others.

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24

Kathy, I will be getting the Metamucil today. Finally, my situation yesterday subsided, but let me tell you something. I have a pretty high pain tolerance, but a few hours after my last post the pain was so severe that when I used the restroom I thought I was going to pass out. I don't ever recall being in so much severe pain. I broke out in a cold sweat, saw black dots, and could barely walk. The pain had me in bed for several hours. It was something so horrible that in words I can't convey. For now, I am okay, but so scared of a repeat. I was ready to throw in the towel as of yesterday. I was like what the hell, I'm not strong enough for this s***. And to know me, those words are something I would never say. I survived...and I am still going forward.

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25

That was yesterday and today is another day. Glad you're feeling better. Right now my doctor is checking into all oral clinical trials available and also getting my insurance in place if I do the current treatment. You're helping me to understand the process. I'm so sorry that any of us have to go through this but I enjoy our conversations. Do you have family helping you through this? My fear is that I won't be able to work. I'm a special ed teacher and other than my son who is grown, it's the reason I get up every day :) Hang in there! I will say a prayer for you too!!

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26

I made it thru 12 weeks of Incivek but haven't got VL test results yet. I kept thinking of Talking Heads lyrics "This ain't no party, this ain't no disco" ironically from "Life during wartime". And this really IS a war in your body. But post-Incivek is like a walk in the park. No more sores, endurance is improving as is apetite, no nausea.
Ladies and gentlemen, please just hang in there, it does get better. But keep an eye on loved ones. Their worry and attention and sympathetic pain can easily run their health into the ground.

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27

Isn't it funny how you run lyrics through you're mind when going through tough times. I do the same thing. Glad you're recovering and hope the VL is in the zero range. :) Such a crazy virus that we are all living with. Wish everyone on this board could just sit down and meet/talk with each other. Keep hopeful and I hope I can be as strong as you all when I start fighting the battle.

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28

To Natasha...make sure you eat enough fatty foods with the Incivek, otherwise, it doesn't get absorbed into your bloodstream and it works on your digestive tract rather than the virus--I found out the hard way.

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29

Thank you. I am very careful to eat enough grams of fat before I take the meds, but damn, I am still hurting. Did you experience similar kind of pain? Are you still taking the "therapy"

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30

yes, I experienced much discomfort in the digestive tract during the Incivek phase. I just stayed close to bathrooms and baby wipes helped. But, it was worth it as I have been undetectable since my first blood test at four weeks. I am now at week 21 and am scheduled for the full 48 week protocol. The side effects are much more predictable and regular now, much less intense and somewhat easier to deal with.

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31

Hi Jake. I am a 59 yr old woman with genotype 1a HCV. I have probably had it for two decades + and was diagnosed accidentally while ruling out other causes for fibromyalgia symptoms. I'm in my 4th week of the triple tx. This has been my experience:
The fear of injecting myself was so much greater than the actual injecting. Easiest for me is to sit down, use abdomen or leg fat, pinch up a good portion with left hand and holding the syringe in my right hand just like a pen, slowly inject, then slowly push plunger. Remember to pull the needle (which is very short) out the same angle you put it in. It is a snap, doesn't hurt, and is nothing to have anxiety over. But for me it was my biggest fear.
Incivek (Telaprevir): This is the drug I most dislike. Eating the fat is the most difficult part for me. I've made smoothies, using yogurt, fruit, Carnation Instant breakfast and a tablespoon of safflower oil (almost tasteless) to ensure the 20 g of fat. Oatmeal with 2 Tbs of butter, avacado slices on a sandwich, potato chips, hunks of cheddar cheese, nutty-butty ice cream cones, macaroni and cheese, cheese sauce on broccoli. It's a killer if you are used to a low-fat diet like I was. But it is doable. Plan ahead; decide what your stomache can handle. Sometimes make the smoothies the night before.
Ribavirin: I got the rash on the second day. Mix one cup distilled water, 1 Tbs virgin olive oil, 1 Tbs Johnson and Johnson baby wash. Spray on or pat on with moistened cotton pad. Works great for itching.

Alll the best to you. I use Life Beyond Hepatitis C website for lots of encouragement and great ideas. Prayer is a great help. God Bless You.

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32

You are in for a bit of an adventure, but one you will get through. Looking over some of my earlier posts (starting at #10) the Incivek phase, which seemed interminable, now seems so long ago. I just completed week 30 and life has settled into a fairly constant rhythm: injection Friday night, tired on Saturday, exhausted on Sunday and back to work Monday. The only real symptoms currently are fatigue and some insomnia (so I take Benadryl every night).

My single most important piece of advice: be consistent and be compliant. When I ate the right fatty foods at the right times, the Incivek was tolerable; if I screwed up, I would pay for it. Try to get some exercise and drink plenty of water. At times you are going to not want to move out of your chair, or off the couch--when that happens, stay put and just relax.

You will probably have occasional flare-ups of side effects...like the Incivek/riabvarin rash, which for me was controlled by a steroidal spray; painful and burning diarrhea (eat your fatty foods!) and some agitation...but it is all temporary. And, hearing the first "undetectable" result makes up for it all.

Good luck, and remember, there are no dumb questions, so just ask.

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33

Anybody else hve severe pain in back of head n neck I can't even swallow without pain....I'm on triple tx.....4th day I can't sleep n to top it off I'm on a gluten free diet.......n 3 kids to care for 2 of em still babies

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34

Linz, I had such severe pain on exactly the 4th day of my triple tx, I thought I wasn't going to make it. I was fixin to throw in the towel and quit. Your side effects and mine, with the exception of not being able to sleep, are different, but I can still relate to your pain. This is my last month of Incivik and I survived, you will too. After one month my virus was completely undetectable. I assume your side effects will flare up any time and any where they choose. Keep your head up girl, the pain won't last forever, and the results are worth it!

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35

hi all, am type 1a, had hep. c 30+ years. started tri. therapy 10 days ago. tired all the time, when i do feel decent a few simple chores wear me out. hopefully as time goes by i will get some energy back. my only other side effect is i get the jitters. after i take my pills with dinner i grit my teeth, tap my fingers a lot, and get short of breath. no fun watching t.v. for a few hours all wired up. does this problem get better over time? should i ask for valium or just tough it out? i am a 59 year old male.

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36

I often wonder where all us 59-year old males were hanging out years ago! it seems a fairly common profile in this group. My experience was that the early days of the drugs caused my metabolism to go up and there was a bit of "nervous energy" which I tried to compensate for by walking, etc. That usually worked, and that symptom eased up eventually. I had more problems at night with insomnia than during the day.

I have completed my treatment (36 weeks instead of the planned 48 weeks) and am living proof that one does survive. I have been "undetectable" since the Incivek days, and am just waiting for my post-treatment blood test to see if the treatment worked.

Good luck.

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37

I'm a 59 year old male who started the triple dose one year ago today. Just suck it up for the first three months and it will get better. My viral load was 15 million and I was negative at 4 weeks and ever since. I've seen some friends go out the bad way and your discomfort ain't crap to what they went through before they gave it up. I'll be 60 in 2 months and hep-c free!

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38

Bristol Mayer is coming out with a new drug that cures hep c in 7 days.

I took it in the first clinical phase. Two pills every day. No injections. No side effects.

I was virus free in a week. Seriously!!!

I've been virus free for 8 months now. No other treatment and I feel good.

If you live in Southern California, call Dr. DESTA in San Diego, hematologist to get into a trial.

Free treatment and meds!!!!

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39

To meet the fat requirement I used ensure-extra or something like that. Don't remember. Read the label to make sure you get the right one! Each bottle had the fat requirement right there in liquid form!! I bought it at cvs and Walgreens.

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40

Hi yeah friend, here in UK, 80 to 100% affective, friend cleared, doing great, no so bad side affects

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