Incivek Treatment

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Jake Says:


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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Rick Says:

I am a 56 Caucasian male.Probably Have had Hep C for 37 years.I am stage 3 Geno type 1a . I am finishing my 7 th week of the Incivek/Peg and RIBA. I guess my biggest fear was would I be able to do the injection, then I did it and wondered why nobody mentioned you feel nothing, I thought I missed my self. Let the alcohol dry and let the syringe warm up, other wise a small sting from the alcohol and slight burn from the cold drug.That worry was a waste of time. You might study on Citrucel for keeping your fiber up to head off constipation ,which causes hemorrhoids, just don't let it get started. Your rectum will have a feel of I eat to many peppers most of the time when you have a bowel movements and it will be a must you wash that area good every time to get all the bile or stomach acid off that area then use a hemorrhoid cream to head off the anal itching from the drugs or Bile ??,compares to athletes foot just don't let the hemorrhoids get started and this will be very manageable and tolerable,I had to do it the hard way, I wished the two educational classes I attended would have offered this info. You have to eat 20 grams of fat food 30 minutes before every Incivek dose (every 8hr) , this will increase the uptake of the drug by 250% , Google foods high in fat, warmed whole milk (7 grams per cup) has been my way out for the bad days you could go either way, 1/4 cup walnuts (23 grams fat) go down easy,18 cashews 20 grams .I measure and pre pack in baggies .I am not a pop drinker but found it to help me belch which was a problem .I have been lucky with no rashes, but my first 5 injection sites got red around 6 inch , no itch or pain . Make sure your hands are dry when you handle the incivek as they start to dissolve at the first drop of water, the coating is not what you would expect from a $48000 drug. But it did put me at almost zero in 4 weeks, Again thank you Incivek/Peg and RIBA, I had to learn how to belly breath, I got to were I was to lazy to exhale completely so there was no room for fresh air so I complained I was having trouble breathing. Many good videos about belly breathing on google. They gave me a bottle of Zanax and taught me to breath, never have taken the zanax. Not knowing was the worse part, You have taken pills before, the injection is nothing , you have had the flu before , There is 24/7 numbers to nurses from your pharmacy and Incivek and genatec they are Hep C nurses , You are never alone unless you want to be through this treatment.


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2
Jake Says:

Thanks Rick. Good information. When do you inject? Do you have flu like symptoms after you inject and how long after injection before thay start and how long do they last? Is Tylenol appropriate or just tough it out? Just preparing myself, lol. I hope I can laugh in a few weeks.

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Rick Says:

I read Tylenol is bad for the liver so I bought Ibuprofen, maybe I am going to far. I have yet to take one . I inject Friday night at 10 pm with hopes of sleeping through 8 hours of it and the first 4 weeks was nothing the 5 week I had the tired eyes and felt feverish but was 98.7 when checked.Blood pressure was up 140/90 , blood sugar was 75-85 , i was making sure it was not low blood sugar because it is real close to that feeling.I take my riba at 6 am and 6 pm, my incivek at 6am 2 pm 10 pm, so you have to get up at 5 am to eat the fatty food by 5:30 am to take the pill at 6 am , at one I have a big milk shake, no fat free for me, not sure why they think we will loose weight , then my incivek at 2 pm at 9 pm I am careful what I eat to lay down with , I made a mistake with onions with cream cheese and Buddig meat wrapped around it, man was it good, till it crawled up and burn my throat in my sleep , I could hardly swallow for 2 days, and did not do any favors for my butt. You will laugh about it, the fear of not knowing is a lot worse then dealing with the side effects , you will be surprised how tough you can get when there is no place to run.and it does help to be able to talk about it to somebody that wants to hear about it. My Dr. made me loose 65 pounds, when I did the blood pressure , sleep apnea and ER went away, then she made me go on anti depressants before we started treatment, they put some hurdles up for me, so this is just another hurdle, Sometimes I wonder if I have been sick so many years I don't know any better.


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4
Verwon Says:

Just to add some information on the drug Incivek...

It contains the active ingredient Telaprevir, which is an antiviral drug. It has been shown to be effective for those who have been resistant to other therapies.

https:/­/­www.medschat.com/­wiki/­Telaprevir/­

And Rick, Ibuprofen can also be bad for the liver, since it is an NSAID medication.

https:/­/­www.medschat.com/­wiki/­Ibuprofen/­

Does anyone else have any advice or comments to add?

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5
Matt Says:

Hi Rick,

I would be happy to provide you with some VERY good information on this treatment. As someone who has also had it for 35 years, I am currently on week 16 and have been "nondetectable" since week 4. I am on the road to cure... :) I'd be happy to talk with you personally. Please email me and we can chat.

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6
Beth Says:

I started incivek yesterday. I had prior treatment of pegasys & ribaviron that didn't work. I noticed flu like symptoms yesterday but I am feeling better today. I have been eating a 1/2 bagel with cream cheese with the incevik. Any other suggestions? I'm not a morning eater so eating so early is making me gag

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7
Andrea Melendez Says:

Hi everybody :) My name is Andrea. I've been dealing with Hepatitis C all of my life. I'm 20 years old, Genotype 1 A, viral load over 3 million. I was infected through a blood transfussion when i was just 2 months old, I received Interferon in 1994, which helped me at the time. However, it's back and its stronger than ever. I'm currently taking the triple treatment (Ribavirin, Interferon and Incivek). In MY experience, Ribavirin and Interferon have been a piece of cake. NO side effects at all, well sometime a headache but I just take ibuprofen 600 mg and I'm good to go. I'm currently a full time student at Florida International University, I babysit as a part time job and I'm involved (Part of Relay for life committee, Student Government, etc). This is my second month with Incivek. At first it wasnt even bad, yes there was itching, my food taste changed a bit (nothing extreme), reocurring headaches and fatigue. However, this weekend has been hell for me. I feel like a truck ran over me, i have ZERO energy, all i want to do is sleep, I get moody, sad, nausea, vomiting, and i am SO sick of food. All I do is eat, need to eat to take Ribavirin, checking food labels to make sure I get my 20 grams of fat. Also taking vitamins everyday because my doctor said that seems to help. I get blood tests every 2 weeks to check for my viral load and anemia, I'm pretty close to becoming anemic as of now, which explains how s***ty I feel. However, I have a MILLION things to do. Tests, papers to write, meetings, work, etc, I'm trying really hard to stay busy so i dont even have time to feel sick but this weekend has been the worst. I cannot get out of bed, all of my friends are out having fun which just makes me depressed since all I do is stay in and rest or do homework. Oh and all this eating, I KNOW im going to gain weight and look like a whale. But anyway, it's just one year. Because I have chronic hepatitis, my incivek and everything else is going to be for one year, depending on my lab work and my liver biopsy later on. I recommend a lot of patience, lots of sleep, surrounding yourself with people who really care about you and keep yourself busy. For 20 grams of fat, half a cup of ice cream, avocado, almond/peanut butter, nutella, chocolate milk, potato chips, anything that's fried really cause of the oil, nuts, bagel and cream cheese. If you have any questions, or feel like venting, feel free to contact me at !

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8
Ed Says:

Hi Guys, I too have had Hep-c 1a for many years. In 2001 was when I found out I had it. At that time Iwent on Peg-interferon and ribrivirin for a year. My viral load was undetectable after treatment, but unfortunately it came back. So I went on the Peg/Rib tx again for two more rounds (3 years all together) and had the same outcome. After that my doc offered me a new tx that was a shot a day. I couldn't take it anymore so I declined. Well Ihad been following the news about Incivec and decided to go back and see the doc after over 6 years. I am on my first week of the triple tx and I am so depressed that I have to do this crap again, and with more symptoms to boot. I don't want to sound like a whiner but if this week was any indication of how the next eleven weeks could be, It's going to be hell. I need to know that it will get a little better rather than worse. I have read where people have done good in the beginning and progressively gotten worse as the tx went on. I have been doing everything they said I should do and I feel like s**t. I don't see any smoke but I think my butt has to be on fire it hurts sooo bad. The thing is I think I did really good on the old tx for those three years. It wasn't easy but I just pushed myself to get through it for a possible cure. I hardly missed any work at all the whole time, and I am a paid fire captain. This time I told them I am taking off at least a month to see how this thing goes. Now I'm thinking I should stay out the whole three months, which I feel guilty about. I just don't want to mess up this schedule for the incivec. If I don't get a undetectable load at 4 weeks I don't know if I can keep this up. Anyway I am sorry about my rambling and I really do appreciate your posts as they have great info in them. I just needed to vent a little bit. I think it might have helped. Thanks again and good luck to everyone!!

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9
donho Says:

I went thru it once with just Pegasys and Ribavirin and had no problems. I just did what the doctor said and that was all for the HCV. BUT, I changed my diet and started to exercise daily. You'll learn to live with exhaustion. I could bike about 3-5miles before stopping to rest. Just make it all routine so you don't have to think about it, just do it. When I did allow myself to consider it, I remembered that dead really sucks.
Hope it's going well. I start the triple crown next week.

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10
Frank Says:

I have just completed week 9 of the triple therapy and can hardly wait for this phase to be over. I am amazed at what a nuisance the whole "fat fix" aspect of the treatment has been. However, I have been very compliant, stuck to the schedule, and the "high fat" diet and that seems to have helped me avoid some of the more serious problems described by others. But despite my efforts, bowel movements have become an adventure; I am hoping that goes away when I stop the Incivek.

I am a 58 year old Caucasian male, who has had HepC for 30+ years. I did the pegasys/ribavarin treatment about 10 years ago, but immediately relapsed. My doctor says I have the Type 1a genotype of the virus, and a "wimpy" type of natural interferon, which makes for a bad combination.

After my relapse, I changed to a healthier lifestyle, and started running. I have completed 6 marathons in the last 6 years. On these meds, I now have trouble running for more than 3 or 4 minutes before I get short of breath and have to walk. I try to at least get out and walk a few days per week, but it is an effort. When I am resting, I feel pretty good; otherwise, I usually feel a bit "whooped" and have no energy. I do my injections at 10:00 pm on Fridays, which leaves me a bit tired on Saturday, but totally drained on Sunday, which I usually spend on the couch. By Monday, its back to work; for a few hours Friday morning, I actually feel normal.

I also experienced the "Incivek rash" around weeks 5-6. It got progressively worse for about 2-3 weeks, but has now begun to subside. I consulted with a dermatologist who prescribed a steroidal spray, which provided some relief; Benadryl at night helped me sleep. We recently had a spell of hot weather which seemed to aggravate the condition. I am hoping I finish with the drug before the weather breaks for good here in NJ.

I have found the comments from other patients helpful and hope that others can benefit from my experience as well. Good luck!

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11
Margo Says:

I take my 6th shot sat the only side effects I have had is a rash that has gone away is my treatment working or is this a waste of time I thought this would make me deathly sick but I feel nothing

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12
donho Says:

What to expect... Top of the list, you will experience exhaustion. I think a lot of the depression folks see is because, when you get a full nights sleep you expect to wake refreshed. No mas. It's with you untill the last pill goes down. Other side efeects seem optional and/or cyclic. Regardless, Only your aqttitude will get you thru. Psychology is a big hammer and if you hit yourself with it enough, you'll be amazed. 1) You are a risk to friends and family. I can't imagine how I'd feel if I gave my wonderful wife HCV. I can tolerate an awful lot for her. We can do more for our loved ones than we'd ever do for ourselves. 2) This treatment is long, inconvenient and annoying. But check out the symptomes of people who's liver gave out. That's real pain and suffering.
3) If you ever feel that you're not Superman and able to beat anything in the world, it will become extremely difficult. You have a good chance of saving your life and possibly the lives of your loved ones. So, YOU ARE TOUGHER THAN A BAG FULL OF BALL BEARINGS.
Now go beat the hell out of that virus.

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13
Deb Says:

You are so right. There is a lot you will maintain for your family in doing this TX to not have them to possibly suffer as we have by having this insidious disease.
Good luck with yours...I have 3weeks counting to go.
Hope the tri-meds will rid me forever!!! :-)

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14
Kathy Says:

I'm so afraid of the unknown. I'm going back to the doctor on Mon. and will possibly start the treatment. I was diagnosed in Dec. I'm a special ed teacher and afraid that I will not be able to go to work while undergoing treatment. I will get 6 weeks under by belt before having to return to work any advice.

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15
Frank Says:

Since my earlier post (#10) I have reached week 16; so I have completed the Incivek phase and am 1/3 of the way home, since I am scheduled for the full 48 week protocol. My best advice is to follow the dosing instructions carefully. In particular, the "fatty food" requirements. I ate a lot of vanilla ice cream (you'll find that there are many foods you just can't eat--or even look at!--for a while, which you will find through trial and error). Although eating all those extra fatty calories made me feel like a bit of a "slug" if I did not eat enough the drug tended to wreak havoc with my digestive system. That phase was very unpleasant and tiring. I did nothing but work and rest. But, you'll survive.

The other benefit of strict compliance is that you will probably eventually find a certain rhythm or pattern to your side effects, which will help you cope with them and plan around them. I do my injections Friday night which makes for quiet weekends, but enables me to work my regular schedule. I have also found that, once I finished the Incivek, the side effects from the injections diminished somewhat. As a result, I have been able to enjoy more foods again and even resumed some easy running.

Most importantly, the Incivek appears to works. I was "undetectable" at week 4 and every point since. While I won't know for sure if I'm cured until next year, I am encouraged by my own results so far and what others have posted.

Good luck.





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16
Natasha Says:

Hey guys. I just started the 3 combo treatment this past Sunday. At first, I was a bit fearful because the doctor's always tell you the worst of things to expect, and honestly, for me, trying to anticipate the unknown is the worst of the worst. So it's been three days and nothing too bad. First night I took the injection I did it before bed and I doubt I will do that again. I had a very difficult time sleeping with the chills, hot flashes, muscle aches, and headache. I would rather wait it out and then sleep later. I have been increasingly getting sick to my stomach, but no vomiting. And today, I experienced a serious case of being light headed, but it lasted for about a min and went away. Oh, and the palms of my hands are extremely dry and turning white, like ashy almost. Weird. How long did it take for anyone who suffered serious side effects to begin experiencing those side effects, and what were they? I am thinking, at this point, it should be smooth sailing, or perhaps that is just my positive, hopeful thinking. I have a very busy daily life, single mom, full time manager, full time college student, so I told my doctor that my will to get healthy, and maintain my life through this treatment as if I were not on it will supersede any side effect I may have. Call it arrogant, but I believe our mind is the most powerful resource we have, especially in times like this. But even still, there is a little shadow of the "what ifs......." I am focusing on a long term SVR. Is there anyone who has completed this treatment and been off for more than 6 months still in remission? I am apprehensive because I have, figures, genotype 1a, and that only carries a 45% SVR rate. Would love to hear from someone who is the same genotype and is in remission.

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17
Kathy Says:

Could you send me your email address? I may want to chat when going throught the treatment.

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18
Kathy Says:

Has anyone been in the all oral clinical trials? If so how successful were they!!

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19
Natasha Says:

Hey Kathy,

I would be happy to give you my email, but not sure that I can post it privately. If you know how to do that send me yours and I will then contact you with mine.

Talk to you soon.

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20
Kathy Says:

not able to send you my email I quess we'll just keep in touch on this site.
Thanks!
Kathy

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