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Incivik; Triple Therapy; Need help & honest Answers!

I am just getting ready to start triple therapy on July 1, 2013. I am scared with what I am reading. My Dr is starting me off with all 3 at once, and has chosen Incivik,. On top of being concerned with the pegasys n Riba now I am concerned with this Incivik.. Any help would be great... honesty too... Apparently the Pegasys & Riba will be for 9 months and the Incivik will just be for my first 12 weeks on treatment...

I am wondering if I will be able to work as my job can become very demanding at times.

Thank you to all of you who share your stories... I am getting tired of people trying to tell me how I feel who have never personally done treatment.
35 Responses
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4950316 tn?1394184585
Hi there.
Yes, get onto the butt issues ASAP. the firhoea can make your life so miserable. And haemorhoids aren't much fun!~ The burning is the Incivek leaving your system. It IS lessened by upping the fat, and making sure you eat 20-30 minutes in advance of taking the pills. But it stuck around for a good half of my 12 weeks on Incidious (that's what I call it!).
I kept Loperamide around for the diarrhoea, and kept my stools reasonably solid. Less burning anus. Less crapping shards of glass.
I also had Proctosedyl, and used that a helleva lot.
And make sure your baby wipes are a good brand with aloe vera. Some of the cheaper brands tend to burn your tender extremeties.
Helpful - 0
317787 tn?1473358451
Good for you.  Yes, go before your next shot
Hopefully your next injection will not be as much of a shock to your system, still not fun but a tad better.
When I would do the shot I could figure it would take 5 to 6 hours before I would start to feel a fever and aching so I would take something based on that.   Everyone is different. you will figure it out as time goes by.
Take care
Helpful - 0
Avatar universal
Thanks so much to all! Thank you Dee1956 for all the links. I will look into them.

I am no longer up against a 24 week tx! Finally 1 Week Down :) lol... Slowlyyyy but surelyyyy I will prevail.

Injection #2 is tonight... O how wonderful...  I am going to get some baby wipes @store, another huge jar of peanut butter, and I will most CERTAINLY pop some tylenol or ibprofun prior to my 2nd jab!!

Thanks again to all..

PS, I got a Dr appt tomorrow to get some of that med for nausea.
Helpful - 0
317787 tn?1473358451
Here is one more, (I promise, no more) this is on anemia, you probably don't have it though you want to be prepared.
One thing I just thought of was try not to get a lot of sun until you can tell if any of the tx is making you more sensitive.  It can cause problems.
Now that I think of it there was not much information when I treated, I was the first one my doctor had so many on here started in 2011 and we kind of helped each other.  If your mouth gets dry, Biotene is very good.
Drinking water is the most important thing.  My doctor had told me not to drink coffee for that reason though I would still have a bit.:)  Again, good luck
http://www.medhelp.org/posts/Hepatitis-C/Incivek---/show/1631622
Helpful - 0
317787 tn?1473358451
Hi cheating here, in this post, are copies of other posts for help with side effects.  I just remember being too sick to find this by myself

http://www.medhelp.org/posts/Hepatitis-C/incivek/show/1657839
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317787 tn?1473358451
Hi I typed in Incivek help and found this, not very good at this but will try to find more
http://www.medhelp.org/posts/Hepatitis-C/incivek/show/1657839
Helpful - 0
317787 tn?1473358451
I think you are so right, the more fat the better though if you get a specific problem please ask,
Sometimes during tx I was too sick to search and needed the help of my friends.
Hang in there
Helpful - 0
2059648 tn?1439766665
You see the magnifying glass in the heading of this forum.  It's on the left.  If you click on that magnifying glass you will see where you can search to forum for answers.  There are 100S of posts about the bathroom side effects of incivek.  Some going into lengthy detail.  It would benefit you to read some of those post about relief you can obtain from side effects of incivek.

The more you know about this treatment and its sides before hand...the better off you will be.  It's not easy and demands your attention.

DWBH
Helpful - 0
Avatar universal
Thanks for your info. I am taking the two Riba pills per day... one in morning and one in evening which are each 600mg. These darn incivek pills are what are really making me hurt I thnk. I have to take 6 of those a day (2 at a time) which each pill is 350mg... for a total of 2100mg per day.

I have one week behind me thank God. However, I have been noticing some problems when I goto bathroom... some discomfort... kinda like crapin fire! I have noticed it got better tho past 2 days which I think may be from the amount of fat intake with each dose. I increased it to 25-30g of fat instead of the recommended 20.

Anyhow, thanks so much for your response. Greatly appreciiated,
Helpful - 0
789911 tn?1368636783
Most important.. Stick to the dosing schedule for the first 12 weeks with incivek.  Set alarms, pill boxes, whatever it takes.  I worked a part time job, it was very rough but without that job time would have gone by so slow.  Keep busy no matter how you feel.  Just keep going.  I am 15 months post treatment after doing 48 weeks.  Treatment was a success and it is starting to be hard to remember how difficult it was for me.  watch your blood levels carefully, anemia can sneak up on you fast.  That can make you feel the worst!   Best Wishes!
Helpful - 0
Avatar universal
CD8
***living my life withOUT HepC.  lol
Helpful - 0
Avatar universal
CD8
Hi - I beganTriple therapy October 2012.  Have been partial responder twice in years past without the Incivek.  This time, by week four, virus was non-detectable and has stayed that way.  I got the convulsive shivers after Peg interferon shots for a while, long hot showers helped.  I work Monday thru Friday days so I do the shot on Friday evening.  Was able to continue to work but used a lot of sick leave.  Sometimes I felt like I was crawling on my hands and knees just to survive - but I did it anyway.  Big challenge to find food with 20grams fat that I could actually ingest due to severe nausea.  I tried anti-nausea script once but did not like side effect so just learned to deal with it on my own (soda crackers, 7Up). I never had to actually throw up.  After 12 weeks had severe anemia so had to get some Epogen Procrit shots for a while and stop my Ribavirin for 2 weeks, normally was taking 1200mg per day.

It has been hell, but I have no choices left.  In 2006 liver stage was 1 via a biopsy.  2012 biopsy showed stage was 4 = cirrohis.  Very frightening.  I don't smoke, drink, drug, eat very healthy, but liver is dying anyway.

Am 55 yo female. I live alone but my parents are my neighbors.  My mom would check in on me but I tried to refrain from involving her much.  Never had her do my errands or anything although she helped with mowing the yard.   I tried to shelter them and my 2 sons from this as much as possible - so as not to overly worry or alarm them.  Frankly, if I had to do this again, I may consider short-term disability.  I just don't know if I could have the strength to repeat something like this.

My biggest challenge was food.  Am vegetarian so coming up with 20 grams of fat 3X a day was overwhelming for me.  Especially when nothing tastes good anymore.  It's a sad day when you can't even enjoy your favorite guilty pleasure like ice-cream or chocolate.   :)

I am not trying to introduce negative thoughts to others - but for me I wished I would have known what to expect before I started this so that I could have been more prepared.  I was so sick I could barely go to the store... and so much food was wasted because it looked good but then it did not taste good.  I finally conceded to 'healthy' fast food options.  But all this is moot after about 14 weeks or so, once the Incivek gets out of your system.  I suppose I am still a little queezy from the Riba... but it's easy to ignore.

It's difficult at work because it becomes obvious something healthwise is going on but it's not something I wanted my coworkers to know about.  Big trust issues when it comes to HepC.  There are still a lot of uneducated people out there.  My boss and cubie buddie know and that is all.  They have been sooo supportive of me, I feel lucky and grateful.  Frankly, I had to come up with "stories" to appease other people's questions of me.  I finally resorted to telling people I was on chemo but told them I would prefer not to go into details when they asked what kind of cancer I have.  Awkward.

I have 9 weeks to go of Peg interferon and Ribavirin.  Have to do 48 weeks total.  Most of my hair fell out but it will come back.  I didn't get a rash but was itchy.  I lost about 10 pounds and have managed to keep it off - YAY.  

Would I go thru this treatment again if I had too?  Of course!  The thought of living my life with HepC is exciting to me.  It has been my downfall since diagnosis in 1999.  I so very much want to get healthy both physically and mentally.

Virginia Mason in Seattle believes they can reverse my cirrhosis back down to at least a level 3.  How cool that would be to no longer feel like my back is pushed up against a wall.

Best wishes to you all.  My thoughts are with you.
Helpful - 0
1840891 tn?1431547793
Welcome to the forum! I think you should call your doctors office or clinic immediately for a prescription for Zofran, even if its evening or weekend or both, as most doctors have an after-hours answering service that will page them in an emergency. This is an emergency if he can't keep the pills down, as missing any doses of Incivek increases the risk of viral mutation and breakthrough infection – which will call for a prompt stopping of the entire treatment. If treatment has to be stopped for this reason it can't be restarted, and then the only choice is to wait  however many years it takes for the next drugs to be approved.

I'm also a little concerned that the doctor didn't order a biopsy prior to starting tx, as the tx for non-cirrhotics can be only 24 weeks if they respond rapidly to the drugs, but cirrhotics must treat 48 weeks regardless, as the virus is harder to kill in cirrhotics. Is his doctor just assuming he is cirrhotic based on his ultrasound? That is safer than assuming one is not cirrhotic based on an ultrasound. Best wishes!
Helpful - 0
Avatar universal
don't worry posted..."Zofran is the name of a medication that works
well for nausea."

I agree, there is no reason to suffer from that nasty side... Good luck to your Hubby and you.
Helpful - 0
2059648 tn?1439766665
Does your husband have prescription medication for nausea?  This is a very important medication when treating with incivek.  You can be just miserable if you don't have medication for nausea.   I asked for my doctor to prescribe something for nausea before even starting treatment so I would have it on hand.  It's extremely important that your husband doesn't throw up the Hep C treatment drugs.  Most everyone treating with Incivek needs medication for
nausea from time to time.  Zofran is the name of a medication that works
well for nausea.  I have taken it and it works fast.  I have also taken generic versions that also work really good.

Hope this is helpful to your husband
Helpful - 0
5725246 tn?1373138746
Hello everyone, I am writing on behalf of my husband who on June 25th started his HEP C treatment.
He's taking Interferon inj 1x week (tue 7:30 pm) Inciveck 3 pills 2x a day 9 am & 9 pm along with 1200 mg. Riba 2x a day 9 am & 9 pm.
The first injection brought chills and fever ( 101.1) after about 6 hrs. which lasted from tue to friday night. Week end much better.
Second injection NO fever but other SX have emerged such as butt pain, nausea, fatigue, insomnia and brain fog.
Today he has been so reluctant to drink liquids because he said that as soon as he does the nausea starts.  This morning after breakfast( which included the 20gm. of fat) he took his pills and drank some liquids. Within minutes he felt like throwing up.
I kept on praying that he would be able to hold the food down for at least a little while to give a chance for the meds to be digested.. He did but since then he has hardly had anything to drink.  I am so worried about him.
By the way he has had Hep C probably over 40 yrs, DX in 1992 officially. He never drank or smoked and always ate a very healthy diet. His liver enzymes were always elevated but the Dr. felt that the numbers were not that high to be concerned expecially since all the other levels were within range. Then on his last CBC many things were high and so the Dr. advised us to go and see a liver specialist. We did and here we are!!!! He is genotype 1b but I am not sure what his V/L is. Before treatment he had a sonogram which showed extensive liver imflamation. No byopsy was done.
I hope I will be welcomed here as my husband's spokesperson.
By the way his name is Angelo and my name is Mena.
I need all the help and support possible while my husband is going through this phase of his life.
After reading many of your posts, I can really feel how everyone cares about each other.
God bless all of you and may you all be successful in achieving SVR!
Helpful - 0
317787 tn?1473358451
I don't know if this will matter or not but my riba's (a generic) were 400 mg each vs the 200 mg each
Helpful - 0
Avatar universal
hi and welcome to the forum hubby treated with incivek and was UND from wk 4 and stayed that way throughout the 24wk of tx sorry that first jab was bad i hope it gets better as you go through tx, i wish you all the best and keep us posted
Helpful - 0
1840891 tn?1431547793
Good catch, asle, none of the rest of us noticed but the post really did say 2 ribavirin pills a day. I hope that was just a shortcut to saying 2 doses of ribavirin a day, because most people are taking 1000-1200mg per day, and all the ribavirin I've seen has come in 200mg pills, so that means multiple pills twice a day. I took 600 mg (3 pills) mornings and 400 mg (2 pills) afternoons. So ontrackbasis, how many mg of ribavirin are you taking? Under-dosing can cause treatment failure in some circumstances, so we are concerned.
Helpful - 0
4950316 tn?1394184585
Also, just a note. I took my Incivek at 7am, 3pm, and 11pm. I took my Riba at 7am and 7pm. I took all my morning pills together, and no worries.
Helpful - 0
4950316 tn?1394184585
Just read your posts, and am wondering why you started on just 2 Ribavirin pills per day. The normal protocol for Riba is 1200mg (or 3 x 200mg twice per day). It is dependent on one's weight, but why you are taking such a low dose to begin with concerns me. Do you have a previous history of low hgb, or platelets, or anemia?
Also, I always take 2 Panadol (or US comparison) when I have my jab. I also take 1 or 2 more in the morning. I found it counteracts against flue-like symptons.
Look out for anal issues, rashes etc. Get onto this forum ASAP and we can tell you how to manage it. Many doctors are hopelessly inadequate in helping you with sx.


Helpful - 0
1654058 tn?1407159066
This is indeed the home for many who treated. I still log on and check the cirrhosis forum.
I worked the whole time because of insurance. It got tough, but this little group cheered each other on. Some had to quit work or take FMLA or go on disability.
It sounds like you have a routine to deal with side effects. I love your attitude! xo Karen:)
Helpful - 0
Avatar universal
Good luck and hoping the sides are not bad . I did not have to do any thing but Rib  and Peg shot. I did 24 weeks but Before each shot my Dr gave me Ultram the generic form  (tramadol) and I took one about 30 min before each shot . I never had flue symptoms or any thing other than a fever on day 2 and day 3 it got up to like 102.5 several times but 1 Tylenol would take it down. It is hard treatment  but if you get rid of this virus it is well  worth it. I treated in Jan 2012 through  June 2012  and thank God I am SVR.
Good luck  this is a great sight and there are lots of very good people  who are very good at answering your questions. They helped me so much so thankful for them all.
bbj
Helpful - 0
5432782 tn?1368806956
Hi I'm on triple Incivek Riba and peg the treatment can be a little rough at time , but effects each person different. I am in week 8 und at week 4 and I also work everyday , I work in construction and this can be very demanding as well. I have to admit I'm not as fast as usual nor do I think as fast as before . When I try to interpret the measurements on drawings I really have to slow down and double think myself. My side effects have not been to bad , but the anal issues have made me a little crazy, but with proper medical care can be delt with. I did have the rash around week 2 DR gave me a steroid cream and it cleared up in about 4 days don't let it get out of control. I keep a daily diary on how I feel each day, when I do my shots and what I eat for fat, the eating can really get to be to much at times, sometimes I just don't want to eat . High heat temperature days really run me down fast but I just push through it. I have not been on TX long but I learned very fast , I need to be a part of this forum , the knowledge here is high and compassion is great!!!
   Good luck with your TX , and if you need anything just post a question and someone will get back to you with good advice.
Good luck Mike
Helpful - 0
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