Hep C Discussion Forum

Northern · Veteran Member

RE: Who here has been on incivek?

Tedlandry · Member

Hi Angie

I'm on my last week of Incivik. I'll be glad to be done with it. The sx came and went. I can't tell you how key it is to have 20+ grams of fat about 20 minutes before taking the Incivik. That will not only give it the best chance to work, but it is key in helping your body process the drug. It will also relieve/prevent some of the anal discomfort. The key is to let your doc know as soon as possible when you start feeling a new sx coming. I had terrible itching, but with their help, it passed.

Stay strong, you'll kick this thing.

Ted

hepcat60 · Senior Member

Amen Joanneh. There have been a couple of times that I tried w/o the dispenser andi would have the same problem. I would forget if I had taken the meds 10 minutes after taking it. Good suggestions.

JoAnneh · Guru

I couldn't imagine working every day while
Taking Invicek! My hats off to you
Who have. Enjoyed reading everyone's post.
Suggestion:
Keep your medicine in a pill dispenser that
Has am and pm daily. Forgetfulness/the fog
Was so intense (I did 48 wk) that it helped
Me if I couldn't remember whether I took my
Medicine. I could check my dispenser.
If all RIBA was in one container I wouldn't have known
If I remembered or not.
Yes I used alarms but the fog was deep
At times:)

edmed · Veteran Member

Hi Angie, I already did the first 12 weeks of triple therapy and now I'm on WK 22. What i can share with you is, i was on TX in 96 then in 2004 and now the present. The Peg and Riba had it own SX that i learned to deal with in 2004. The usual aches, tiredness, and some rash. I live in sunny Florida were its hot all the time except for a couple of weeks out if the year. I got through those times and i got through the Incevik also, The Incevik was more intense with its own SX but i learned to deal with the triple therapy, one SX by one SX at a time. I'm 51 and been living with hep c geno 1a for over 30 years. The search tab save me when it came to knowledge of what to do with these reactions to the meds. In 04 i work everyday and got thru it and now in 2013 i'm still working everyday and work thru all the SX. I'm allways busy between work, a wife, two teenagers, two yellow lab pups,and making sure i get enough rest to get up and do it the next day again. hope this helps and good luck.

Tig · Admin

I started Victrelis on June 20th. confuse Your answers await!

AngieV123 · Senior Member

She said they would talk and then call me and tell me which I will take. Given what she said, I think I am going to push for the victrelis. Now to bug victrelis users lol

AngieV123 · Senior Member

The doctor knew I had it and still said he still preferred the incivek but the nurse has more direct experience with it because she handles his patients when they have issues with side effects. I don't want to do 28 weeks of 3 meds but I guess it looks like I may have to and should. She said that there were patients that were red all over with rash and had to switch to victrelis anyway.

Tig · Admin

I think that is an excellent idea. If you've already got an issue with psoriasis I believe you'd be very susceptible to severe rash complications with Incivek. I would ask for confirmation on that but I feel that it may be troublesome at the very least.

AngieV123 · Senior Member

I just saw the nurse and she said she may put me on victrellis because I have a touch of psoriasis and that may mean that I will explode in rash and have to quit anyway. She is going to talk to the doc and tell me the verdict.

Kellie · Senior Member

Hi Angie! Yes I did the Incivik also. I was taking 3 tabs twice a day, 12 hours apart. I used a protein smoothy with a product called Udo's Oil pretty much exclusively for the duration. (Don't ask me to drink it again though, I've burned out on it.)

Like Ubcgal I started having sx soon after starting. I got a preliminary rash the first 2 weeks. My doc had me on a Desconide .05% lotion immediately. That rash went away quickly. I did ok for the next 2 weeks and then I got a really bad rash over 65% of my body at it's height. I started taking organic oatmeal baths 2 twice a day. 2 or 3 cups of ground oatmeal and lavender oil. It was a strong mix. I ended up having the rash for 4 1/2 weeks. I was also taking Atarax 25 mg & Zyrtec daily. I also had hemorrhoids on and off. Nothing that Prep H wouldn't take care of. I do believe I got that because I skimped a few times on the fat intake.

I didn't work through this as the rash kept me from sleeping at night much of the time and I had to sleep during the morning hours.

The rash mysteriously disappeared around the 10th week and I developed a bad case of face swelling and nausea. That is why they discontinued the Incivik early. It was pretty knarly, but most of it is a fog now. I won't sugar coat it.

The docs didn't really seem concerned about the early stopping and I'm still considered to have an excellent chance. Since I had the time and resources to do it I'm glad I did. It was important to me to finish this cycle and rid myself of this virus I've had since I was 16. I turned 50 during the foggiest part of the Incivik. Not much of a bday but now I'll have many many bdays to celebrate happily, without depression, body aches and that deep fear of getting liver cancer. I'll gladly leave it behind and go through this in order to achieve this. I'm working on week 16 on Wednesday. 8 weeks to go and then I'm done.

Thanks for asking, I'm happy to share my experiences with you. Best, Kel

ucbgal · Senior Member

angie,

i started triple treatment w/incivek on june 18th and was fortunate to get und on day 17!!!!! i found the waiting to start treatment and anxiety about sx unbearable. i highly recommend joanneh's advice about stocking up on sx otc meds prior to beginning of treatment. i personally believe that the higher your hemoglobin,hemocrit and platlettes are the less side effects you'll experience.

my sx started on day 3 and i've experienced just about every single one. i believe this is because i started treatment w/an 11.2 hemo count.

just be a trooper,have a lot of support and believe in yourself.

on a lighter note i had the rash,nausea,rectal,insomnia and even had to go buy adult diapers for 2 days....ha-ha.... here's what really is bothering me right now;high uric acid from the meds and swelling of calves,ankles and knees. i'm choosing a healthy liver over the possibility of rheumethroid arthritis.

keep the faith you have 2 gorgeous children who love you unconditionally.

sandy,ucbgal

Biggyb · Guru

Good Luck, i was not on Incivek, but the alarms were a life saver. You got to have alarms.

I even did a Google search and downloaded a alarm on my computer, which worked great. So if for some reason i missed my phone, the computer would pop up an alarm at drug times..Never missed a dose either. ~Bob

Dillo · Senior Member

I just completed my triple therapy with Incivek. I didn't have too many problems during the first 4 weeks. I was on the 2-375mg dose 3 times a day. Most of the itching was bearable using moisturizer like Aveeno and their bath wash also. I tried to keep cool. Sometimes I would take baths with the bath wash or a shower without rinsing the bath wash off and then sleep under a fan that blew directly on me to help with itching. My pharmacist said to make sure I used some kind of skin moisturizer everyday but to make sure it didn't have alcohol as an ingredient cause it would dry out the skin.

I had a worsening rash towards the last 2 to 3 weeks of tx ....when it looked like the moisturizer or bath wash wasn't doing it I went to my Hepa Doctor who sent me to a dermatologist. He did a biopsy of the rash, determined it was drug related and and gave me Triamcinolon cream 1% that didn't get rid of the rash but kept it from becoming worse. It would die down and then pop up somewhere else ;). I alternated with the cream and moisturizer till end of treatment. The rash can come up on you pretty quick so good to keep an eye on it and take care of it quick.

Kellie here at the site used something different that made the rash go away all together so you might talk to her.

Lots of water, 20gms or more of fat before and during taking the meds, and the moisturizer is how I survived. Of course plenty of rest. I had two different alarms set up on my phone and I always had a small pill container to have my Incivek and Riba doses on me if I was going to be out.

I had some rectal issues also but nothing that usually couldn't be helped with a witchhazel pad like Tucks.

Good luck. It wasn't easy but I managed. Try to see if someone can help with the kids every now and then so you can get some rest.

-- Edited by Dillo on Monday 29th of July 2013 04:15:10 PM

AngieV123 · Senior Member

Haha! I can't say that I blame you for wanting to smash your phone/alarm with it going off so often. I will surely be taking the advice to set alarms on my phone.

Tig · Admin

Joanne's recommendation to set personal alarms on your smart phone is an excellent idea! However, by the time this is all done and over with, I think I may smash that damn phone and thoroughly enjoy doing so. Right now I have to take my treatment medication 5 times a day. I started by setting a individual alarm for each dose. Then I had to set a second for each to remind me if I hadn't got off my butt or woke up completely!! So now I've got that thing chirping or dinging 72 times each week! I may even buy a special hammer to use the day I decide to smash (turn off) that last alarm smile But it is a good idea because it has saved me more than once!

AngieV123 · Senior Member

Thanks JoAnneh, congrats on the UND. I am not sure of my liver condition in detail...last biopsy was 12 years ago. I surely feel inflammation daily..like it's enlarged under my rib cage. For the past 3 years I have been very tired and having joint pain and more migraines so I'm thinking treatment will basically just amplify that. I'm 32 but my body feels much older to me..I am excited about the prospect of getting rid of this virus one day and feeling normal. That is what pushes me through my worries about tx.

JoAnneh · Guru

If you have iPhone preset daily alarm times
To take your medicines. Never leave home
Without a dose of Invicek...just in case.
My nurse told me if my arm was cut off and
I had to choose between getting the Invicek or
My arm, take the Invicek, I could always get an arm!
She lectured enough in orientation that I
Understood the important amber of eating
20 grams of fat with each dose for medicine
To work!
Rash was bad at times for me. I hung in there.
I also had rectal issues. Do search on these
Topics for ideas. I prepare by buying items
Recommended by forum members.
Treat symptoms as soon as they appear.
Keep symptoms under control.
12 weeks is only temporary and worth it
To save our liver.
You look young and that will help your energy
A lot. I have had Hro C long enough to develop
Chirrosis, great news I am Hep C FREE 3 month
Post and feeling like a new person.
Please know I am here for you as members
Were so me. Like you, I was fortunate the find
The forum before starting the medicine.
Really does help mentally prepare!
You can do this!

AngieV123 · Senior Member

Thanks for the input. My doctor did mention to report any rash that pops up and that I would have to get it seen right away to make sure it's not something bad. That part does worry me a bit. I go talk to a nurse tomorrow who is going to give me counseling on the meds and she will be the person I contact for any problems. Nurschic, I hope you get your undetected. I am glad to hear that you are able to stay active. I have a 3 and 9 yr old so I will be forced to remain active I'm sure lol. I am a big water drinker now so that is not going to be a problem for me.

nurschic · Senior Member

I have been on Incivek for 8 weeks and only have 4 weeks to go. I have been very active and keeping positive. I had a slight rash for the first week but it has cleared up with Zyrtec. I take it every morning with my meds. I am not UND yet, but plan to be by the end of 12 weeks......fingers (and everything else) crossed. THere are days that I am very tired and others days that I am wired, I just listen to my body. We are all different, but my Dr said his patients that have been more active and drink plenty of water have less problems with side effects. I also use baby oil after showers and LOTS of coconut oil as my skin lotion.... Hope this helps and feel free to PM me any time!

hepcat60 · Senior Member

I did my 12 weeks. I won't sugar coat it. It was pretty rough. Lots of nausea, rash, itching, and severe fatigue. A shot of Procrit at 10 weeks helped greatly, but I was almost through at that point. I was able to work, but had to conserve my energy. Overall, if I had to do it again, I would. The side effects did not out weigh the possibility of being cured. Be sure to take any rashes that may occur seriously. Mine were tolerable and now almost totally controlled w/ meds. It wasn't as bad as I had imagined, but everyone is affected differently. Each day can bring a new set of variables. I hope this doesn't paint too bleak a picture. Hang in there! The twelve weeks is only temporary!

AngieV123 · Senior Member

Hello! I am just a couple of weeks away from starting triple with incivek. I want to gather some info on how everyone did with it. I know everyone is different and will react differently but I am trying to just prepare myself mentally. I am not so concerned about the side effects of riba and interferon because I've been on it before. I am worried more about the incivek. The only appealing thing about this vs the victrellis is that this one is only 12 weeks. My doctor only wants me on victrellis if I become intolerant/develop rash with the incivek.

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~Bob~

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