Incivik; Triple Therapy; Need help & honest Answers!

[ontrackbasis]

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.

[dontworry_behappy1]

I treated with incivek.  The issue with Hepatitis C treatment is it effects every differently.  I personally needed little assistance on the medical side.  Others
have a much harder time.  I know that's not much to go on but I'm sure you will get lots of other experiences.  You asked if you can work?  it depends on your job and how you are fairing the treatment.  I know that's not much info either but true.  I will be honest and tell you this treatment isn't easy for the veteran who has treated in the past.  Incevik has side effects like rash, anal
issues an the plan I don't want to do anything including socialization.  What you have done is stumble onto this site which when you get a side effect you
can post and get direction ASAP.  If you haven't read the Incivek workbook-
It's online at "Hepatitis.va.gov".  You will greatly benefit from reading the Hepatitis lesson plans on that site before starting.  It will help you know the basics....so you can ask more questions here.

Welcome

DWBH

[Reidmusic]

Welcome to the forum. I think we were all scared when we started treatment. I did triple with Incivek and just finished in March. The first 12 weeks were hard with the Incivek and the fat requirements and rigid schedule. I had to set alarms and bring food with me if I had appts. I got a bad rash from it but you might not. Not everyone does. I don't think I would have been able to work because the anemia really kept me down. But some people do work and hopefully you will be able to.

You're right, people who haven't gone through it can't understand the reality of treatment. I stuck very close to this forum because people here DO understand. Wishing you a successful treatment.

[nzkiwilife]

Hi and welcome to the forum. :-D
I am at Week 22 of Triple tx with incivek and I can tell you that everyone reacts differently. You just won't know how you're going to respond till you start.
You will get more posts later and more indepth details no doubt.
My advice would be to just make sure you are prepared for possible sx, know who/where you're going to turn to after hours for help and don't put up with any sx that you can't tolerate. There is a "fix it" pill/cream out there for just about everything so make sure you tell your doctor specialist/nurse practitioner looking after you asap.  
I am not working now as the anaemia just makes it impossible. I got down to 80 which was all tolerable but just too tiring to work. Others cope with anaemia fine. On the plus side, I have not got rashes/anal issues/headaches. (Touch wood) We all get a different mix of sx, lol.
Make sure you take the incivek on time and with the fat. All that fat can make you nauseous if you're not used to it but you must take it for the incivek to be the most effective.
Eat properly - make a special effort to eat quality, nutritious food. Can be hard with the incivek but gets easier after.
Please don't be scared. The drugs are powerful, but as long as you have competent medical staff looking after you that are accessible, you should be managed ok.
This forum is amazing.
You can ask questions at any time of day.
Good luck on your journey.

[timothy141]

Welcome, I am doing peg/riba. Currently half way through week 30. I would only wish to concur with nzkiwilife, "My advice would be to just make sure you are prepared for possible sx, know who/where you're going to turn to after hours for help and don't put up with any sx that you can't tolerate. There is a "fix it" pill/cream out there for just about everything so make sure you tell your doctor specialist/nurse practitioner looking after you asap."
I neglected to tell my hepatologist about all my sx and when I would he would always say," follow up with my primary." And of course I never did, always afraid they might stop tx because I wasn't tolerating tx. Part of me would rather die than give into this virus. And so I might write about it here, but never to my Dr., who when I finally did because I could no longer stand  abdominal discomfort. Went and saw her on Thursday last week, man was she not happy with me. Long story, anyway bottom is no I have upper and lower  GI scoping coming up next month.
I have said all that because all this extra suffrage may have been avoided had I been more complete in my disclosure of info. to my medical team, and as I have now become completely aware of they are just that my medical team.
This is a great place to be, there's a lot to be learned,          

[lrup1952]

Welcome. I can only add my story.  I am doing tx with incivek and will begin the second half of my journey on Friday (next 24 weeks).  I had a couple of bad weeks but overall have done well.  Did not like the 20 grams of fat 3 times a day, did not like waking up to eat and take meds but found a way to make it work for me and those 12 weeks went very quickly.  This is important so get into a routine and stick to it.  Also drink water, water and more water.

I have not missed work but have had to drag my butt out the door on some mornings.  Had the incivek rash the entire time and it was worrisome, painful and even on meds for itching and to help me sleep had problems with it.  I did icepacks, cold air walks, oatmeal, cetaphil soap and lotions, perfume free detergents, etc. However it left shortly after the incivek.    

My hair keeps falling out but it is cut really short so may last through to fall where I will add a lovely collection of scarves.  I am now on thyroid medicine and have problems with the back and legs.  Can't go in the sun at all and the humidity in DC makes it hard to breathe.  Can't get a tooth pulled because no one will do it until my neutrophils have rebounded.  However saying all of this is to say sx impact everyone differently and some have the same and some have different.  I am not complaining at all because I know I have been very fortunate on my own journey and life is just going on.

I totally agree you need to have competent medical staff and you need to let them know what is going on with you even if you think it means nothing.  This journey is different for everyone but I think you would get a resounding yes, if asked if folks would do it again.  

Folks on here are very knowledgable and kind.  I did learn one thing early on and that is I am responsible for my treatment and my own best spokesperson so I dug in and read everything there was to read and when I go for each appt. I have a list of questions/concerns, etc.  I keep all of my labs and when I don't know what something means I research it.  I don't miss appointments, I do labs on time, I walk as much as I can in this heat, I try to eat right and I get as much sleep as I can, when I can since some nights I can't sleep.  I also read as many post as I can because ultimately someone will have my same problem and I can read the responses.  

So to end this, I wish you the very best and look forward to hearing how you are doing.  Do take care of yourself and remember nothing that is worrying you is to small to ask.  Linda
I

[ontrackbasis]

Thank you all for your comments and words of truth. I wanted to give a quick update as yesterday was my first day of treatment!

I had my first injection yesterday at about 6 pm at the dr office. Was doing pretty good till about 11pm when I got up from couch to go to bed. Started shaking and freezing then would bundle up. I was up the majority of night... several times in tears :( I had a fever of 103.0 around 3 am. I couldnt handle the pain anymore so I took some ibuprofin and about 20 minutes later finally fell asleep.

I awoke to my alarm at 7am and I was soaking wet with sweat. My head is pounding and muscles are still little sore. At 7am I had to eat 20grams of fat in some food and take my Incivik pills. At 8am I had to wake back up to take my ribaviran pill with a bunch of water.  The time is now 1115am and I just woke up and thought I would let you all know how it went/is.

I have to do my injections on Monday nights, take 6 Incivik pills each day, and 2 Riba pills everyday... I assume this is the same regimen for all tho on trip ther. Thanks again to everyone... I really do appreciate it.

[Idyllic]

An injection once a week, Incivek three times a day (with 20 grams of fat) and Riba twice a day is the protocol for Incivek. Many of us followed it (for the first 12 weeks).

Not sure about your job though. It depends on what you do for a living. Like Irup above saysm many people work while on treatment. If anything I would make sure you have flexibility in the event you have some off days.

[lrup1952]

Hi, and thanks for checking in.  Yes, that is indeed the regime LoL

I did my first shot at the doctors office as well which meant I didn't take the tylenol before the shot since I didn't think about it and they didn't mention it so my first shot was the worse for me.  I felt like I really had the flu.  The shots after that I took the tylenol first (30 minutes before) and did well so maybe that will help with your second shot.  Being a chicken and afraid of the second shot, I swallowed pills, injected and ran to bed before I could feel sick.  However I fell asleep and slept through the entire night.

I know we are all different but I will hope that your second shot goes better and that your sx will be bearable.  

I do agree you should be prepared that you may need time off,. just in case.  

Keep us posted and congrats on beginning this journey.  It takes courage and you did it!!  Linda

[ceanothus]

Im a little slow to this thread, but want to welcome you anyway. Congratulations on taking such a strong step towards evicting the HCV and protecting your future health by starting treatment now! This is where the roller coaster ride might begin, so hang on tight. Side effects are not very predictable, and terms like "usually" are the best anyone can do. Usually tx (treatment) has fewer and milder side effects when the patient is younger and when the liver damaged has not progressed as far. I treated at ages 41, 52 and 58 (the last one was triple tx and I'm now SVR) and each tx was much harder for me. I also had cirrhosis already during both of the last two treatments and that adds to the difficulties, as do any other serious health problems one might have. If you are otherwise pretty healthy and your liver is not yet cirrhotic, you will stand a better chance at an easier tx. If you are also under 50, you may get off really lucky! Of course, these are all maybes, probables and possibles, and nothing is for sure except ONE THING: whatever happens, you will get great support here at this forum.

Most people who work through tx take their injections on Friday nights in hopes that the worst sx will be over the weekend and not interfere with work. Don't feel bad that you didn't get this schedule though, as like everything else about tx, the timing of the sx is unpredictable too. At the very beginning mine hit me soon after the injection but later in tx it didn't hit me very regularly and when it did it could be anytime, but was usually 4-5 days after the shot. That interferon hit of sx (side effects) does get milder as your body gets more accustomed to the meds. Your next most common and likely sx will be nausea from the Incivek. Lots of us have had it, in greatly varying degrees. If it is mild you can just try ginger - ginger tea, ginger candy, or ginger capsules if you don't like the flavor. If it gets severe you will need a prescription med called Zofran. It's a good idea to get that Rx called in to your pharmacy right away if you start feeling any nausea because once it starts it can increase really rapidly and then you might have trouble getting the Rx quickly enough. The Incivek needs to be taken on a very careful schedule of every 8 hours, with a meal or snack with 20g of fat taken first, within 20-30 minutes. When the nausea started for me it was less than 24 hours before it was so severe that I couldn't keep my Incivek down, and its really bad for tx to miss any doses. Fortunately the Zofran worked like a miracle for me. I was gagging and barfing, then dissolved one tiny pill on my tongue, and within 20 minutes all nausea was gone and I was actually wanting to eat. Not everyone gets the nausea but it is pretty common to get it. You can avoid some of the sx just by bring really vigilant about always getting enough fat with your Incivek and by making sure you drink tons of water, at least one gallon per day. Speak up if you start getting other sx like skin issues, anal problems, mouth sores or blood count problems, as you will find a lot of good advice here.

[justpzin]

Hello,

I am to start triple treatment on July 5, 2013.  I have been reading the post and it is good to have a place to share what I am feeling. Of course I am scared but if this is what it takes I'm all in.

justprzin

[Dee1956]

Hello there.  I wanted to say that I was told that I had a hard time due to the cirrhosis.
I was very lucky, my doctor had me do 24 weeks of tx.
I am now 16 months post tx and doing and feeling better than I have in years
That is the most important thing...hope...and this forum
I know you have already started but if you can get some baby wipes, lots and lots of baby wipes.
What helps the most is to make sure you eat the 20 grams of fat, there are many many lists on here that can be found by clicking on the magnifying glass at the top of this page and type in 20 grams of fat.
If you are too sick to search just come on here ask a question and everyone here will be more than happy to help you in any way that they can.

I would not have been able to get through my tx without this group of people .

I started my tx a few months after it was approved which was bad because there were side that doctors did not know how to treat.
Saying that...you are treating at a good time as most sx have some kind of help.
If you start itching benedryl can help however as others would tell  you, don't wait if you get a sx, call your doctor right away so he/she can call in a prescription for what ever sx you are having.

If the doctor does not know you can ask here.  What ever it is can be asked on here.

When a bunch of us started in 2011, right after Incivek was approved, we talked about blood, guts, and yes poop so please don't be afraid to ask.

Many of us have been through the tx and we have stayed close by to help those who are coming behind us.  I call it paying it forward in honor of those who went before us and were so willing to reach back and give a hand to lift another person up.

I know I sound corny, I am just trying to say that we are all here for  you.  as someone above me said, any time of the day...someone is here.  We are from all over the world and in my opinion we have all joined forces to kill this damn virus.

As I said there are many lists of foods that have fats and I ate all of that however when I had to take my medicine and could not cook at 6 am I would take 3 table spoons of peanut butter and eat it with two apples.

Some have tried just taking fat and drinking it.  Most have found that it has to be solid food or you will end up with firerhea.

All my best to you, hang on it could be a bumpy ride.  Listen to your body, when you are tired..lay down, this is not a time to try to do more than your body is capable of.  Try to think of yourself as a friend, and do for yourself what you would do for a family member or a best friend.

Hope for the best, prepare for the worst. :)  You will do fine.  Oh your reaction to the shot was completely normal.  It will get better as time goes by, the shots.  I took them on Friday in the hope I could work on Tuesday.

[Growzer]

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

[bbj2856]

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

[crossroadsec]

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:)

[asle]

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.

[asle]

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.

[ceanothus]

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.

[cheflady]

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

[Dee1956]

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

[hepCFREEwanab]

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!

[dontworry_behappy1]

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

[can-do-man]

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.

[ceanothus]

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!

[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.