Aa
Aa
A
A
A
Close
Avatar universal

telaprevir? incivek

Started yesterday on the triple combo, they have it down as telaprevir, but that is just a different company's name for incivek, hoping that i can get thru to week 4 and have the required response, hope all you other heppers out there are doing well, any thing i shouild be aware of, didn't sleep last night, had terrible pains in every part of my body, but i have spinal stenosis, so i said i had spinal stenosis on steroids, boy the pain, has eased a bit now, so here's hoping, and will be aware of it next week when i have the next injection, xx
31 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Here is the info from the Incivek website, http://www.incivek.com/managing-side-effects

"Take 2 INCIVEK pills 3 times a day, 7 to 9 hours apart, with food. Eat a meal or snack containing about 20 grams of fat within 30 minutes before you take each dose."

Here is a link to the prescribing information:

http://pi.vrtx.com/files/uspi_telaprevir.pdf

I agree with can-do. I would not be willing to take the risk of jeopardizing SVR, if it were me.

Advocate1955
Helpful - 0
2062453 tn?1350332942
Hi Jemaggie:

I survived triple therapy (Incivek) -- fortunately a rash wasn't one of my side effects (although there were many other side effects).

One of the forum friends I made during treatment had a terrible rash -- she even posted photos of her rash. You may want to check out her profile -- LookingForward12. She may no longer actively post on the forum, but she may respond to a message from you.

Regarding the fat, it was my understanding the 20 grams fat was necessary to help the body absorbe the Incivek. I won't debate what your doctor said, but I will share with you my experience. When I was not consuming enough fat, I would get "fire in the hole!", which means my anus would burn. I interpreted this to mean the Incivek was passing through my sysyem instead of getting absorbed by my body. Based on my doctor's advice, I increased my fat intake -- to even over 20 grams -- in order to eliminate my butt burning.

I not only survived treatment, but I've been SVR for more than a year. I started treatment with a viral load of 22,000,000 and I was UND within a couple of weeks. It was a loooong road, but worth it! Good Luck!

Regards,
Glenn
Helpful - 0
Avatar universal
I am doing what my doctor rang me and told me to do, and he is the head hepatologist at the r.h.h., he said they are in an everchanging cycle, as they do these studies, they are finding more and more, and he said in another 12 months, to 2 years, all this will be old hat, that's all i can tell you, i have to do what i am told, so here's hoping thanks though, hugs xx
Helpful - 0
Avatar universal
I am not sure what you mean? Is your doctor saying that they have done different studies that show this? Or has he not been following the guidelines that have been through studies and has come to his own conclusions?

When you say this is what telaprevir is now posting so have they changed the rules??? All I know is we have had others here that their doctors have said things that was not correct, we have had a few that was cirrhotic was told that the new rules was 24 weeks was enough, guess what they followed what they said and relapsed.

Good luck, as of course some have got SVR and not followed the rules, I hope your one of them. My only question though, is it worth the risk?
Helpful - 0
Avatar universal
This came from my hepatologist , that they were reviewing everyone on this 20% fat, you still have butter, instead of margarine, a full cream milk drink of chocolate or whatever with your meds, or before them, whichever the case may be, but you don't have to be rigid with the 20 grams, 10 will do, which is easy, for meals, still have to eat well-- that was on the new forum for telaprevir, so i guess it;s going to be the new treatment, only started last weekend-- thanks guys x
Helpful - 0
5154342 tn?1370270967
Perhaps it might be a viable option for you to consider whether your husband could get either your family physician or your hepatologist to write him an FMLA (Family Medical Leave Act) certification for reduced work hours (albeit with reduced salary that comes with those reduced work hours). He is entitled to up to 12 wks FMLA, the equivalent of 480hrs. Hopefully, your husband's employer wouldn't want to "get even" if you know what I mean.

Dept of Labor website has the certification form at www.dol.gov/whd/forms/WH-380-E.pdf

I did the triple therapy about a year and a half ago, and was feeling bad enough before I started taking the meds. Being able to have a physician-certified justification for reducing my work schedule to, essentially, 6hrs/day, was a really big help for me, especially since I, too, have a pretty long commute -- 90 mins each way in good traffic. Still felt like crap at work and didn't like the reduced paycheck, but at least I didn't have to try to hang in there for a full 8hrs/day. 6hrs/day was challenging enough.

Anyways, something to give some thought...
Helpful - 0
Avatar universal
My poor husband started 3 weeks ago, and has had some awful side effects - nausea, painful anal rash (dr gave him rx for cream yesterday), now anemia, and just generally feeling awful. Biggest problem has been trying to eat the fatty food and keep it down - he is finding that avocados are the best for him, but I've been trying everything. He also finds that more frequent smaller meals work better for him. He has to stand on his feet a lot for job, and has long commute, so both are tough.
Helpful - 0
Avatar universal
I would not recommend stopping the 20 g of fat, unless your doctor tells you to.  From all I've read, and from all we were told, the 20 g of fat were essential for the effectiveness of Incivek and also for decreasing the amount of anal/rectal problems.
Advocate1955
Helpful - 0
Avatar universal
I would definitely ignore any conference that says fat is not important!

I have said before: high fat content has been proven beyond a shadow a doubt to keep the drug in the liver for a LONG time, which helps to give the virus a real beating. Also, because the drug stays so long in the liver, very little passes through the anal canal, result: no dreaded "BUTT BURN," which can be absolute agony. Someone's wife told me her husband's anal burn was so bad, he could not sit down, lie down or walk. He was in such a state he nearly gave up the will to live. It can be that bad, so stick to as much fat as you can stomach. I was taking 60g of fat 6am, 2pm, 10pm. A real blessing was "Virgin Olive Oil." I would take 30g before my usual fat intake. When eating fat was just too much, I would take 60g of oil. There are so many types and flavours, there's one to suit everyone. The nice thing about taking virgin olive oil is, it goes down in one shot, quick shudder, and it's all over!

So if you want the telaprivir to be less effective, and suffer the agony of the anal burn, go ahead and listen to these no nothings at the "conference." I bet your bottom dollar, no other scientists would agree with them.

Also, with the minimum amount of fat intake, 20g, you are still at great risk of the serious side effects I have just spoken about. So go for the FAT, it's well worth it. When the 12 weeks are over, you can start eating healthy again, and any weight you may have put on will disappear real quick!

Love and hugs to you all. God bless.
Helpful - 0
Avatar universal
thank-you so much! yes! just took my antihistamine for the night, but the dreaded injection first, take them at night, so i sleep some of it off1! hugs xx
Helpful - 0
Avatar universal
I have heard ice packs are pretty good.

I used a strong corticosteroid cream from doctor, helped fairly well in the daytime, but at night in bed with the warmth of the bed covers, I found myself scratching whilst half asleep, especially on my lower legs; this became a real problem, because once you start scratching it becomes a vicious circle, and it becomes difficult to stop scratching the dreaded "itch." So please do try not to scratch if possible!

You have my sympathy.
Helpful - 0
Avatar universal
Hi jemaggie.

Just a quick comment to give you the right information.

Incivek is is the trade name used by the drug company; telaprivir is the generic name. (Or the chemical name of the drug).

Best wishes for the future. God bless.

Malcyboy.
Helpful - 0
Avatar universal
thanks sweetie-- yep!! it's so good , so happy, will help me heaps, please keep in touch hugs xx
Helpful - 0
3159077 tn?1356031131
So you're saying the 5,040 grams of fat I ate while on Incivek wasn't necessary? I wish they would have had that conference about 9 months earlier when I treated. I feel your joy in this new way of ingesting Incivek.

I had the rash too and there are pics on my profile under photos. If the cortisone doesn't help ask for the Triamcinolone and the Hydroxizine. Those two medications really helped me.
Helpful - 0
Avatar universal
hi sweetie, good news, dr faxed thru a script to my pharmacy, oh! the modern era, sent a pic via phone, and script, arrives, so good, cortisone cream, good result, first use, also, the 20 grams of fat has been stopped, apparently was a conference in melb, last weekend, and now as long as you eat, like a glass of hot chocolate(full ream milk though) or lavish reall butter on a crumpet, no need to count the 20 grams, oh boy!! how good is this, a present from, god was really battling, to eat it, and keep it down, so now, it's on the back burner, also zirtec tabs for itching, take them with a zantac tab( yep! antacid tab) it inhances the ingredients in the zirtec, and makes them much more effecient, so am happy, will try and get the better of all this now, except, this pain in the bum, seems funny to say that, no it's not my hubby!! it's my bum!! ha! ha!, thanks guys, you are all rocks,, hugs xx
Helpful - 0
317787 tn?1473358451
I should have said I would wet the wash cloth or bath towel, put it in the freezer...then apply to the place that was itching.  It would numb the nerves so I did not itch as much.

I also had what I called convulsive itching where I itched every where.
Try to be as prepared as you can be.  when the itch was jumping around..so was I.  I would not have been able to go to the store like that :)
My best to you, Dee
Helpful - 0
317787 tn?1473358451
Hi when I had a problem with itching I took benedryl.  When that did not work I put ice cold wash cloths on the area.  If you are cold you may not feel like doing that but it really helped me when I was desperate..
I was also given a prescription of I believe Hydroxine for the itching and promethazine for the nausea.
I also remember one member using oatmeal on the area.
you can also click on the magnifying glass at the top of the page and look up Incivek itching and you will come up with other suggestions.

Good luck to you, please keep in touch :)
Helpful - 0
Avatar universal
You're welcome.  I hope some of the ideas in the link above will help too.  My husband took warm only showers, used Eucerin body wash, patted himself dry, plastered himself in Eucerin cream after the shower, put tea tree oil on the rash when some areas blistered a bit, stood in front of an open freezer door for a few minutes, stood outside in the night air for a few minutes, or turned a fan on pointed toward his body to get some relief.  The hydroxyzine and triamcinolone helped a lot and made it bearable.  The rash did change over the 12 weeks of Incivek, and improved greatly after he completed the Incivek.  You may also start to notice a sensation of tingling or zinging in your skin.  He did.  That about drove him crazy too, but that will improve after Incivek.  The hydroxyzine is a strong antihistamine and will help you sleep as well.  Sometimes it's good to sleep through some of the rashy side effects.  If you begin having trouble sleeping, you might ask for a mild sleep aid as well, such as Zolpidem.
Advocate1955
Helpful - 0
Avatar universal
thank-you so much for all your help, will ring the doctor in the morning, as it's driving me crazy, go outside in 1 and 2 degrees, freeze, shiver and anywhere clothes touch me i have a problem, hugs xx i am so grateful ♥
Helpful - 0
Avatar universal
My husband had the moderately severe rash with Incivek as well.  He used a prescription ointment called Triamcinolone, and a prescription antihistamine called Hydroxyzine to calm the rash down.  Here are some other ideas from others on this forum as well.  I put them in my journals:

http://www.medhelp.org/user_journals/show/333004/Incivek--Ideas-for-Managing-Rash

Advocate1955
Helpful - 0
Avatar universal
Have you talked with your Dr.? Hopefully it's not allergic.

Have you tried aloe? Get a plant (bigger is better) cut off a piece and squeeze out the gel onto your rash.

They also have benedryl in a spray.

Hope you find an answer.
Helpful - 0
Avatar universal
thanks, i hope i do, this bloody rash started this afternoon, and the weather is freezing but the rash is so so hot, and i have used and done everything they gave me, have taken a zirtec, but i am not going to get any sleep tonight i think and the heat in the bed will make it worse, any suggestions, thanks
Helpful - 0
Avatar universal
having trouble with a couple of bad rashes, have done everything they have told me, only used the wash and moistureiser they gave me, have taken a zirtec, but it's driving me crazy, i'm freezing cold, but the rash is about 100 degrees, anyone know what i can do, i would like to sleep tonight, hugs xx
Helpful - 0
Avatar universal
anyone got any ideas, going crazy, have started to get a rash and  it's driving me crazy, done everything i was told to do, only washing in aveeno bodt wash, using aveeno moistureiser, have taken a zirtec, the heat  on the rash , you could cook an egg, can't get any cooler, i am frozen, anyone know what i can do-- thanks guys xx
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.