telaprevir? incivek

[jemaggie]

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

[Idyllic]

Greetings and welcome to the forum. I treated with Incivek and did not have very bad side effects other than nausea and a little mental stuff (apathy, disinterest, etc) but luckily none of the other side effects I had heard about (rash, diarrhoea, etc). After a while finding 20 grams of fat to eat three times a day with the Incivek became a hassle and I was so glad that part was over.

I guess just be sure you have copies of all your labs and be sure you have your other labs on time. Keep up with your follow up visits so your doc can make sure you are tolerating the meds and the side effects are managed. There is all kinds of insight and support on here.
Best of luck :)

[Conanhcv]

Stick with it! It can be tough at times. Ask your Doc about some sort of pain relief.
DRINK LOTS OF WATER!!!!!!!!! Always have a glassful next to you. Good luck!

[jemaggie]

thanks sweetie, good to have someone with all the knowledge xxx

[jemaggie]

thank-you am keeping the water up and yes, i am hoping this will get better as i go along-- xxx

[Dee1956]

Hello, welcome.  I found that the first shot was the worst, it is just a shock to the system.
Incivek is really working well for most people.
I wish you well, keep in touch, if you have any questions please ask, everyone on here is always helpful, informative, caring.  I think we have pretty much discussed every thing on here.
Dee

[cheflady]

hi and welcome to the forum my hubby 9/10 wk post tx he to was on teleprevir and for him to the 20g of fat and strict timetable was the worse part of it and was glad when the 12wk was over.Saying that he was UND from wk 4 and remained so throughout the 24wk. I wish you all the very best keep us posted Jules

[lrup1952]

Hi, I am also on tx with incivek and while it was not pleasant with the exception of week three it has been doable.  I had a hard time also with the 20 grams of fat but knew the importance of it so made it work.  The water really helped me and I continue to keep it near me and drink it at all times.

The first shot was in my dr. office and I didn't do the tylenol and paid for that shot.  However after the first shot, I took the tylenol and haven't had any further problems with feeling so bad.

I am now on week 23 and hanging in there.  While I have muscle aches in my legs and my back is giving me a fit I continue to work and try to walk everyday although some days are harder then others.  Will probably do water therapy to help with legs and back.

For each person sx are different so be prepared to stay on top of them but I found that not fretting  about what may not happen helped me.  I also stopped counting weeks because it seemed like the less attention I paid to it the faster the weeks have gone.  I am now almost at the 1/2 way mark (48 weeks) and it is hard to believe.  

You will find your own way of dealing with it that works for you but the folks on this site are so gracious and helpful and know so much about all of this that you are in good hands.

I wish you the best and can't wait to hear about your 4 week UND!!!

Best, Linda

[jemaggie]

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

[jemaggie]

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

[jemaggie]

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

[Conanhcv]

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.

[Advocate1955]

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

[jemaggie]

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 ♥

[Advocate1955]

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

[Dee1956]

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 :)

[Dee1956]

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

[jemaggie]

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

[Reidmusic]

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.

[jemaggie]

thanks sweetie-- yep!! it's so good , so happy, will help me heaps, please keep in touch hugs xx

[malcyboy]

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.

[malcyboy]

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.

[jemaggie]

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

[malcyboy]

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.

[Advocate1955]

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