Side effects after Incivek is over?

I am about to begin week 8. I was just curious to see if any of you have already wrapped up your 12 weeks of Incivek. If so, did your side effects get any better? Since I have to treat 48 weeks I have been counting down the days until the Incivek is over and hoping that things will get a little easier once this part is over. Thanks!

[scoleman]

I'm in the middle of the 3rd week with Incivek triple therapy and am hoping someone responds soon to your post.  How bad have your side effects been?

Sherry

[SunShineGirlie]

I am only on week 4 with Incevik, sides are still pretty bad

[taccs4]

I didn't really to start to feel too bad until a couple of weeks ago maybe around week 4 or so. My platelets were at 33,000 and hgb at 10.8 almost two weeks ago so I think that may have caused the fatigue to kick in. I have the headaches if I don't get enough water, and lately I have had some nausea but ginger ale has really helped. I notice a lot of people talking about the weird taste in their mouth. I have noticed that too, so I was going to take someone's suggestion and get some sour hard candy and see if that helps. I mean any excuse to eat a piece of candy, right?! I am still working and running my kids around, so I can't complain too much but there are days when I feel like it is a forced effort to even breathe! I have my labs checked again soon and hope the numbers improve and some of the side effects taper off. I think we are all hoping the first 12 weeks are the worst. Counting those days down until the Incivek is over has been my saving grace! It is also so nice to know I am not the only one going through this.

[JAY0914]

im in week 16 of incivek trial...when i stop the inc at 12 weeks  i felt sooooooooooooooo much better!!!

[joemc34606]

That's great to here Jay, on goin on shot 8 this weekend counting down to week twelve. Joe

[taccs4]

Yay! I hoped someone would tell me they felt better afterwards. I am glad to hear you got some relief Jay. I hope we all start feeling at least a little better when we are done with week 12.

Joe,

It seems like we are on the same schedule (I take shot 8 tomorrow) what are your latest platelet and hgb levels?

[his3707]

I am getting ready to start week 17 and Yes, I feel much better since stopping incivek!  Not normal, just better.

[working dog]

i'm in the middle of 8...the rash gets a little worse everyday...tonight even after taking benydril i'm back awake itching...if i can make it two more weeks i'll be happy....billy

[joemc34606]

I just got a CBC done last Wednesday but havent talked to anyone about results yet. My 4 week was und and all levels were good. I think my hgb might be dropping because I'm feeling a little more run down each day. At first it was only right after the shot now it's going on for three or four days after the shot. Joe

[taccs4]

Billy. so far I don't have the dreaded rash thank goodness! However this week I have woke up every morning looking like Robert Pattison with dried blood all over my mouth and pillow from my bleeding gums.

Joe, I hope your numbers are good. I get winded pretty easily. I was running before I started treatment but I had to stop because I sounded like an asthmatic oompa loompa.

[crossroadsec]

So glad to hear the sides get easier! Gives us all something to look forward to.  5 more weeks here.
taccs4 n billy. I'm there. Itchy and.. okay this would be funny if it weren't gross. I ate a boiled egg n a banana n had blood all over em. gross. Ate it anyway. No more bananas in my lunch sack...  Karen :)

[Dee1956]

Really glad to hear that you feel better after stopping the Incivek, I start tx tomorrow.  When I was on a triple therapy it did help when I stopped the 3rd drug and just took the peg and riba.  In my case no rescue drugs were allowed so that did not help.
I am rooting for all of you
Dee

[spyderman370]

Going on shot #9 Monday and I too am counting down the days to Incivek's end. I have 4 more weeks - was eRVR UND at 4 weeks so I am hoping and praying that I got 24 all in. It is nice to hear that things will change after the 20g fat gorging, meal chomping, cream cheese sucking eating sessions 3x a day.I find this to be the most depressing aspect so far of the tx. Other sfx are itching and gasping for air - hg's now at 9.9 - close to Procrit tx. I feel like a goldfish that jumped out of the tank. Thanks for the info gang, I come to this site every day!

[nygirl7]

20g fat gorging, meal chomping, cream cheese sucking eating sessions 3x a day.I find this to be the most depressing aspect so far of the tx"

Remember you still gotta fatten it up with the riba - you want to stay UND (but you wont have to gorge like you are now).

Good luck to you all.

[spyderman370]

I feel like a horse...gained 10 pound in 2 months. I don't think we need to engorge for Riba....at least that is what I understand. Just normal meals, twice a day along with the blue meanie pills, arrrgh. I will get my fat *** trimmed very soon as I have 4 more weeks of Incivek and then we get new religion on diet. Good luck to all as well. This site has been a mind and life saver, as pople here know what your are going through. Truly invaluable...

[streamline569]

Does anyone know if lower platelets is one of the side effects of incivek? I think it's the incivek that is causing me to sleep so much. I don't think it's the Riba or the pegasys. Anyone else feel that is one of the sides of incivek? Also counting the weeks now. Just started week 9. Only 4 more to go and then no more incivek.

[taccs4]

Incivek may reduce the number of clot-forming cells (platelets) in your blood. Avoid activities that may cause bruising or injury. Tell your doctor if you have unusual bruising or bleeding. Tell your doctor if you have dark, tarry, or bloody stools.

I found this information on this website - http://www.drugs.com/cdi/incivek.html

I think it could be a result of the combination of the meds and maybe how they work together. I am not sure if there is a way to specify which medication is causing which side effect.

Don't know if that helps, but I hope you get some relief soon. I think we are all counting them down. :)

[banarep]

did a trial a couple of years ago.  the worst for me was around week 10 of treatment, by week 14 all the sides from telaprevir were gone.   Hang in there.

Now 20 months post treatment,  feeling great.

[Dee1956]

Hey girrrl, thanks so much for your comment on the riba.  I am embarrassed to say that when I treated in 2008 all I was told was to eat something when taking the riba.  They didn't say anything about fat helping it absorb.  I was on a trial and it seems much info was left out
Back then I was diabetic and was on Metformin but doc said he didn't think I needed it since my weekly draws were so good.  To be fair they were just starting to talk about the effects of IR and Diabetes on success of tx, I wonder if that would have helped me.
Thanks again
Dee

[dobroman]

Man thats good news. 2 more weeks of Incivek for me. The itching is bad, however I happend onto a product called "Ocean Potion" its for sunburn. That stuff really gets rid of the itch for me. I think it has a little numbing agent for burns pain, whatever it has it has saved me every night for 10 weeks. I was undetectable at 4 weeks so all is well so far. I am looking forward to getting rid of the sides!!

[ann61]

Week 8 starts for me this Friday and I am counting the days until I am done with the Incivek.  What a kick-*** cocktail of drugs we take!  It is so helpful to read the comments of those of you who have completed the 12 weeks and are feeling better.  I don't expect 100%, but I pray for some improvement.

In reading the posts, people seem to believe that low hemoglobin accounts for feeling overly tired.  For me, at least, a low WBC and platelet level, put me into bed.  They tanked very quickly while my hemoglobin tends to go up and down.  Presently, my hemoglobin is teetering between 8.5 and 9.4 but doc has been more concerned about getting wbc and platelet counts up.  After 2 doses on neupogen, I feel so much better.  I'm still tired, but at least there is life beyond my couch.

Hang in there everyone!!

[taccs4]

How low did you platelets and WBC go? My CBC on Friday showed platelets at 29,000 and WBC at 2.0. My hgb is pretty good - 10.0 I had labs repeated today and am waiting on those results. They have put me on vitamin k.

[ann61]

My wbc count was down to 1.5 and my platelets were at 75,000.  My absolute neutrophils were 630.  After 2 doses of neupogen my wbc count is up to 2.3.  I can't remember my other results which the doctor gave to me over the phone, but they were also begining to increase.  I will get a copy on Tuesday when I have my next appt.  Although I have not taken procrit, my hgb was down to 8.5 and is back up to 9.4.  I guess it's my body kicking it's own ***....lol!  I take vitamin d supp but that's the only supp.  I have to say, I felt almost immediately improved after my first dose of neupogen.  It will be interestting to see what your doc has to say, but you may need a wbc boost.  Keep me posted.

[gjbones]

i've completed 7 weeks of incivek, and for me the rash didn't come around until week 4. then things got progressively worse, along with the rash my lower lip started to chap and burn really bad. of coarse the fatigue has always been there. my faith has kept me going and knowing at the end of week 4 my viral load dropped to zero, so that was encouraging news. so hang in their, keep the faith, never give up!!  your in my prayers!!!!!!!!!
                                God Bless,
                                    gjbones

[pjhep80]

well, now i know why my last shot, my stomach is all black and blue and my last blood work my arm looks like someone beat the hell out of it, i am bruising BAD... guess i should tell the drs... but, i am only on week 4, and 2 wk VL showed <43 so i dont want to stop anything now...

[redsurfer]

i think they can give you something for that bruising ...they can give you vitimin k .. they are going to see your blood work anyway you might as well tell them and get help .. my doctor is doing everything possible not to reduce my meds .. they have all  kinds of ways of treating the negative side effects ..unless you are on a trial where they kick you off.. in which case i would beg

[MrRon]

Sunday Oct 9th will be my lasy day of Incivek.. What a freakin ride... For your itching,blister's,hive's.......I got you covered..! Benadryl make's my skin crawl.. Nothing worked... OATMEAL ...!!! That's right plain old *** damn Oatmeal.. Take a cup  of Quaker put it in your little hand held food processor with two tbs of Corn Starch.. Mix that baby up into a powder. Get a small bowl and maybe a pop stick. Mix it to say baby food consistency with water,little at a time - spreadable not runny otherwise you'll have yourself a real mess.. Spread on a layer with the pop stick or just your finger's. . Let it dry on your skin for 20 to 30 min. Don't touch it.. It may burn at first ,but that's the bad stuff gettin sucked out. Then it's gonna itch.Don't touch it.. The reward's coming. After it drie's stand in the tub or better yet go outside and rub it off. Try not to let the nieghbor's see ya ha ha . It will be rough and  and you'll get to scratch... Rinse with cool water or a wet towel. If you get another spot paste it on there.You'll see those rashe's start to dry up within a few hour's..  You can even throw that whole cup into the bath tub and soak.. I mixed some up and kept it in a sealed container on the kitchen counter.My worst month was #2.. People don't realize how bad this disease can be.. The head trip alone can kill you. You don't feel right,you don't think right. It get's scary.. In Aug. 2005 I was in the hosp. with end stage cirhosis. They told me to buy a coffin I wasn't leaving.. I was 44.. Well I told Dr. Death to " STICK IT "...!.    I'm still here. I responded to the Inciveck within the first month.. NO HEP C..!!!     The road back was Horrific... What I did was a miracle,no lie . It would have been far easier to have just died.  FORCE yourself to do something, walk ( I must have walked a million mile's at all hour's) rock in a chair,cut the grass. Move slow if you have too. Your gonna have to reach deep down in your gut's.. DO IT.. You'll feel better.. If there's anything I can help anyone with ,drop me a line.. I'll tell you what I know.. Fact's not fiction.. This disease really suck's....!!! Got it before I was even 20..?????              

[tiered]

I was 16 and I just started treatment at 38.  I had a terrible issue with my anemia.  I would drop a gram about every week. The thinking part is terrible   I could not work, drive, or stand up for very long.  My husband said I was not the same person.  I also started hearing and seeing things that were not there.  Could just stare into space for hours.  It was so bad that they did a CT on my head because it can cause swelling of the brain.  Last week I was rushed to the emergency room and admitted for 2 days.  My Leukemia doctor wanted me to wait till I fell to a 5 hgb before he would transfuse. {mine was 5.5)  I was so low my husband said I looked like a corpse that had its blood drained.  Crawling I could handle better than standing up.  When I would stand my neck would hurt and my head felt like it was going to explode.  I had slurred speach, I could not read because it would go blurry fast.  That was better after the transfusion.  My Husband and I agreed at week 10 I had to stop.  My viral load was 0 so it had did it's job.  Eating the fat at precise times really sucked.  I have been off it 2 weeks and my hmg still dropping a 11.2 to 9.8 in one week.  Platelets around 40 and white count around 2.  I was fortunate to not have rash or severe nausea, i did loose hair..  Chemo was harder on my body but I was 16 and no responsibility and laid in bed all day with people bringing what I needed.  Now I am 38 have 4 children and a job, and left alone to take care of myself between 7:30 am to 4:00.  I feel  like a prisoner in solitary confinement    I was a very muscular person now I can wave with my legs and arms they are so flabby.  I did not have any symptoms prior to the treatment that I know of.  My viral load was over a million.  No damage of liver and enzyms normal.  I have had it for over 20 years.  They say that about 20 years you will start having problems that would lead to a liver transplant.  With my leukemia I was hospitalized for 3 months straight never left.  Then consolidated chemo for 4 months.  I missed my junior year.  I relapsed senior year and had to have a bone marrow the summer before college..  Many other health issues of course arrive from this. So it was hard for me to want to do this.  You are right people do not understand how hard it is.  You can't give them answers because you do not know what is going to happen.

[MrRon]

Jeez where do I start...Wow what a ride..I agree " not the same person" but you can't help it. It's what they call encephalopathy. you have high ammonia level's,your holding water and your body is not flushing out the bad stuff..It was absolute hell for me.The crazy thought's you have,anger,it's just too much for some people. I honestly don't know how I survived.. It was nutz.The virus want's to take over..! Don't let it..! Force yourself to do stuff,physical stuff.Move slow.Walk out in the yard,pull some weed's lol.. I know exactly where your coming from. Those doctors looked me right in the face and told me I was going to die..! No question,No chance..Nooooo transplant aaaannnnnd I have insurance that pay's for it all.. I'm still here..Fight...!!! You just have to get Clint Eastwood plum dog mean...!!!! When your gone ,your gone that's it.Don't go sooner than you have to. Don't eat anything out of a can unless it say's " no salt added" ,watch your salt..! Fruit,veggie's,brown rice,bean's for protien. "ABSOLUTELY NO ALCOHOL"...!! I cannot stress this enough..!! Ask the doc about a diuretic . I am holding water on the Incivek. My doc said it was ok for me to take it..Check first..! I did all this 80% on my own. Didn't get the help here that I needed from the wife and family... Oh well.So I had no choice but to fight or die.. My whole body hurt for year's ,my leg's - Pain - still have it. It's amazing what you can get used to.At first I wasn't ready for any treatment and then I spent my time waiting on the Incivek. Today and tomorrow is my last day..I'm curious to see how long it will take for the Incivek to clear out.My platelet's went down to 31. At 25 I would have had to bail out.. Had to adjust the Peg yet again. Down to 90 mcg a week. Plate's went back up to 48.Hope it get's better this week off the Incivek.. It's ok to go down on the Peg but not the Ribasphere. Get blood work every 2 week's. I have cirhosis so I have to go 48 week's. I feel like a prisoner here too .Not much to do.. I do everything around here.grass,grocerie's,laundry etc etc...Hate it but............... Haven't taken out the boat this year (once) My bike's been sittin for week's. I don't want to get involved with anything I can't handle or finish. Hey I was an electrician for year's and did it all on my own. Never needed help. So this is a real drag.!  I feel less than and the kicker is - nobody care's. I know my some people were dissapointed when It didn't kill me ... but the jig is up and I know who they are....:-} Ya know  the one's who can't look you in the eye. Well anyway, maybe next week I'll start to feel like a new man again.. No Hep C and no Incivek is gotta be good right..!

[MrRon]

It's the Interferon that's bringing them down. Started out at 180mcg .Down to 90 now. Plate's back up to 48 after dipping to 31. Tomorrow is my last day of Incivek and my next blood work is for the 14th. We'll see then..

[MrRon]

Try a cold pack on the injection site first,pat dry,swab it and grab a nice chunk of skin and stick it in quickly Don't ease the needle,jab it in. Try not to move around if you can help it. Keep the cold pack or a piece of ice ( whatever you have) on it for a couple of min. afterward's  and see if this help's. Some people just bruise easy. With the cold pack first you shouldn't even feel the inj. Wierd- you expect a little stinger. Hope this help's..

[MrRon]

12 week's of Incivek done....Whew..!  13th  week blood work  -  STILL NO HEP C -  Feeling better off Incivek. Liver enzyme's are up a bit which probably account's for the bit of itching and water retention.. Not bad at all.. Managing fluid with   Lasix aka. furosemide. Could also be from drinking coffee. Switched to tea and honey awhile ago which work's well. ( mostly green tea) Had a hankerin for some coffee. Bad move.For some reason the coffee change's everything up inside. Create's too much acid which in turn does this which does that . Domino effect.  It take's awhile to balance it back out again. So will stay on Ribasphere - 600 mg twice a day and 90 mcg of Pegasys once a week to finish out my 48 week's. Eczema on my hand's is gone. But got a case of  angular cheilitis ( cracking in corner of mouth ) not contagious, harmless. Treat it with Neosporin. I've only gotten it a handful of time's when I'm run down. Leg's were hurting,but that happen's to me when I'm holding on to , too much water. It doesn't take much either. Have too stay on the lean side , stay mobile and stay away from the snacking...lol Well so far I'd say I'm kickin some major booty here. Will try to start fattening up those muscle's. They've gotten a little on the lean side... This is gonna hurt...:-}

[dixiechicdana]

I just finished my incivek Monday. I feel better. The nausea has subsided, no more fat which is a huge plus and I put on like 4 pounds initially and lost 11 but I wasn't eating in between all the fat. Also, don't have the alarm going off every time I turn around. I take riba at 10am and 10 pm and get to sleep yay!!!! Im doing 48 weeks too but after incivek, it should be a breeze. Can't wait until you get past week 12 too!!!!

[jocko393]

starting week 8 main problem is rectal bleeding and pain...Dr.has tried 3 different creams and now is using lidocaine...Muscle spasms have been real bad too...hoping all this ends in a few weeks

[jocko393]

viral load is non existant according to dr. after 4 weeks ...6 month treatment plan

[halbev]

After finishing Incevik with no rectal problem!!
I developed one 9 days after finishing. From cutting fat to much after week 12 (I do not eat much fat normally but ate a lot during Incevik treatment) week 17 now and all is good.
Was told by Incevik to do this when I called the nurse (Incevik is fat soluble  and comes out through small intestines)  would suggest increasing your fat maybe you are not getting enough and it is causing problem.

[SDBSINY]

Thank you all for sharing your experiences.  My husband is in week 5 or 6 of Incivek and is starting to experience some of what you all been sharing -- irritiability, fatigue, rash, loss of hair.  It helps me understand what he is going through and reminds me to be patient, understanding and helpful (not react).  If there are any other spouses/partners out there living with someone in treatment that can shed some light on how to be more helpful, please let me know.  Good luck to everyone.  Thanks.

[jessie1518]

my husband finished his week 12 treatment about 2 weeks ago.  since then he has experienced a massive amount of back pain.  he complains of having ringing in the ears.  when he started the therapy it was hard on all of us.  it didnt take nothing for him to explode, he had a very short temper and took things the wrong way alot of times.  he has headaches that have gotten worse since he stopped the incivek.  i can tell that he is in alot of pain because he cries in his sleep.  some days he can sleep and some days he goes with no sleep.  hopefully this will go away.  i am hoping that it is nothing more serious.  at this point the amount of pain that he is in he cant work he hasnt been able to work since the begining of the year.  this all started and surfaced from the flu...thats how we figured out something more was going on.

[blane621]

My husband is in week 11 of Incivek treatment and hoping he can hold on for the next 6 days. His rash is incredibly bad and looks like severe burns. He hasn't been able to work due to the anemia and other side affects for the last 8 weeks. The good news is that his viral load is zero so it looks like this will be a success story for us. Our experience has been that it is very difficult to keep your eye on the prize when you feel so miserable and sick for so long. I try to be the cheer leader and keep reminding him that this is temporary. I have people who support me so that I can vent to them and not take my frustrations out on my husband. Good luck to you and your husband!

[cbr1120]

I am just starting my fourth week today and I have a severe case of hemorrhoids. Sometimes so painful that I can do nothing but take baths. The stool softners and medication don't seem to work. Does anyone have any experience with this?

[cbr1120]

Starting 4th week today. Developed painful hemorrhiods, so painful that all I can do to somewhat relieve the pain is take baths. Missed two weeks of work and am due back on Monday. Nothing works thus far, this is torture.
Does anyone have any experience?

[hrsepwrguy]

http://www.medhelp.org/posts/Hepatitis-C/Anal-Issues-Bowel-Movements/show/1629482#post_7412005

[cbr1120]

to hrsepwrguy
thank you

[cnik1959]

Help! My husband is in week three of treatment with Incivek and the dr called and wants an ultrasound of his liver- his liver enzymes have doubled since beginning treatment! I am scared to death that this will not work and that we are heading to a very scary place with this disease! Please some one let me know if this has happened to any of you and what the posssible cause was!
Thanks!
Chris

[hrsepwrguy]

Go to top of page and use the orange post a question button it will start a new thread and you should get more responses to your question

[cnik1959]

Thanks!

[mamada]

I was interested in your comment about your husband having ringing in ears while on the Incivek.  I've noticed quite a bit of hearing loss since I started it, but can't find any info about this being a side effect of this med.  However, there are apparently some other protease inhibitors, used for treating AIDS?, which
CAN cause ototoxicity, although it's not common. Just found out tonight about this;  fortunately am taking my last dose of the Incivek tonight of the 12-week regimen.
I think patients can get the tiredness even is hemoglobin and hematocrit have not dropped, although it's bound to be worse if the anemia is present.
I'm on two antidepressants, which has helped. The self-loathing can get pretty freaky.  I started thinking that I'd had a curse put on me !  mamada

[estero84]

hi. I am about to start the INCIVEK treatment. I was reading your posts and notice your last post was a few weeks ago. how are you feeling now? I am not looking forward to starting the treatment.

Thank you.

[pderoo1]

My husband just ended 12 weeks of Incivek this past Friday. He really did well on it, no rash, no anemia, although there was some nausea at first. He actually felt better as the weeks went by, in fact we were so used to him having the flu-like symptoms every weekend after the Interferon shot, but we wasn't having them. Now it's been 2 days since he stopped the Incivek and his flu-like symptoms are back. I'm a little baffled by this. This is the second time he's gone thru treatment, so we were very used to every weekend him being sick, then him feeling a little better every day til the next Interferon shot. It's almost like the Incivek eased the flu-like symptoms of the Interferon. I'm anxious to see how he feels next weekend. Take care!

[ZeroG]

I have found that instead of gorging with 20grs of fat foods, two tablespoons of olive oil (24 grams) mix with a quarter to half cup of vegetable juice is much easier to take than cream cheese or Ben & Jerry's!  I'm starting week ten- three more weeks on Incivek.

[estero84]

hi, I am about to start INCIVEK treatment and am happy to hear that your husband did well. I am hoping that I have the same mild symptoms.

[Dee1956]

Thank you all for posting your experience.  For me the Incivek put me to sleep I just finished 12 of 24 weeks a little over 7 days ago.  Ansiety started within days of stopping Incivek, now no sleep, no appetite, panic attacks,thank you so much for sharing.  We need to share
Doc keeps saying it is the medication, it will get better I pray he is right.
Happy Holidays to all

[estero84]

has anyone NOT had a bad experience during triple therapy ? I tried the double therapy of peg interferon and rabtavirain about 10 years ago but it did not clear the virus. I had some mild side effects that lasted for many months after stopping the treatment but nothing like what I am reading. remarks like "thought I had a spell put on me" also " taking two anti depressants".
but I relize that this is the only way to prolong my life and it must be done and I will start triple therapy January 4 2012.
please share any information or experiences with me .
thank you.

[Lindsaylin33]

congratulations!I'm in wk 10 so yes I'd like to know without incivek after the 12 wks do the side effects really get better?do you still have to eat 20 grams of fat with the ribavirin and pegasys? Hope fully someone has been through most of the treatment ,thanks.

[Lindsaylin33]

I wish you the best of Luck in Jan 2012.,I've been on incivek now for 10 wks with triple therapy and just like you had no response in 2001.Unfortunately,there are side effects Mostly with the incivek you stay around the same weight because of the 20 gms of fat.,with ea.dose.Plus I had a bad rash after wk 4 on my arms and thighs after that now I have mild itching but I received a svr of 0 so far.I'll be happy to help you thru this treatment when you start,I hope you don't have very bad side effects and you get thru it too. Sincerely Lindsaylin33

[estero84]

o thank you sooo much for your kind words. I will stay in touch with you when I start my treatment. I hope you are doing well with your treatment.

[Dee1956]

Hello, I just did my shot 14 of 24 yesterday afternoon and was very happy that my anxiety did not increase.  Everyone will react differently some will have it rough others not so much it will all depend on your body, your level of damage your compliance etc.
I believe that in another week I should feel better.  While I was afraid of injection shot 14 gave me mild aches and pains. I just went for a small walk
I have tried to get rescu drug for my low HGB it has gone from 14.8 down to 9.8.  The doctor told me to stop searching the Web, he was watching out for me.  I hope you all have a great day
NYGirl I loved that WAAAAAA
Bless us all
Dee

[fontesse]

Every night i read these comments and it helps me get through another day. Thank you to all and the future users of this cocktail will need this info. Our trials and errors with our side effects will help others.  
I have one more week and Im counting the minutes.These are a few things Im happy to pass on, if it makes someone feel a little better. This worked for me and I know everyone is different.
1) I have learned not to take a shower or bath at night, the heat from the water really aggravates my rash and my skin would burn all night.
2) Drinking a gallon of water makes a huge difference in how you feel overall. You must hydrate. Coconut water really helps also.
3)Fat food(a few of my quick fixes) - A)3 Tablespoon of Pignolia nuts sauteed in butter. B) Shake made of Probiatic yogurt, peanut butter and juice. C)Heavy Cream mixed into oatmeal D) Heavy Cream poured on top of sliced bananas and honey.E) Carrots dipped into blue cheese dressing.
4)Stay away from sick people (cold etc). I have had a cold and strep throat for two weeks.

Has anyone had any burning in the spine?. It started last week and its a scary feeling.  

[Dee1956]

Thank you so much for posting, after my post the other day I feel so much better.  Not everyone will go through what I did.  I believe it was the combination of my normal medications with Incivek, I did the riba and peg and a protease inhibitor (ROCHE R1626) in 2008 and while it was certainly no picnic I did not suffer when I stopped the third (trial part) of the tx.
I have been reading where people are talking about brain zaps, it is possible you could try a search on "Spine zaps"  In fact you could google.  Not everything you want to know will be here, while there is a vast collective knowledge here it is still good to google
Good luck, I will look up sam
Dee
every day is better since Dec 7th

[wildmeds]

Hello, My husband just finished the incivek on Friday.It was very hard. He could not sleep from the itching.. we tried everything.. last week I tried Caladryl lotion the clear one.. he said that worked the best.. I would rub it on him and it would help relax him His hemaglobin and red blood cell counts droped very low so he had to add a shot of procit to his tx once a week we are waiting for results to see if it is bringing the counts back up..He is the type of person that never sits still and it kills me to see him not be able to get out of bed.. I asked him this morning if he feels any better since he stopped the incevk on Friday and he said he dose feel a little different not as tired and he is actually up out of bed and in his little workshop cleaning up!!! WOW am I getting my husband back? It dose get bad , I just kept telling him a few more weeks and you will be done...He was so happy that Friday was his last day he woke me and 1 of our sons up at 11 pm to tell us this was his last pill!! My thoughts and prayers go out to you this was surly one of the craziest rides I was ever on I will post again in a few days to let you know if he feels any better... Just keep telling your husband{and yourself} there is a light at the end of the tunnel!!! and that this crazy ride will all be worth it in the end!!

[Dee1956]

You are so right, this has been a crazy insane ride I am about to tak shot15
I wish you the best
Dee

[Ceedogg]

I had the anal and hemriod deal bad, on top of it i drive truck for a living. I found anal wipes or cold water on some tissue to make sure your as clean as possible is a must. A product called balneol works wonders for keeping you from being raw. It's not cheap, but really helps and don't be shy with applyi;ng it. Im in week nine and can't wait for 12.

[Ceedogg]

balneol and hemrriod cream.carry wipes all the time.and cold water on some tissue paper works great too. keeping that area clean of residue has been a must. seems like it flames area when any juice's linger.

[kallenC]

I did pretty well through week 8.  At week eight on triple therapy, I became anemic and red blood count and hemoglobin dropped.  I fainted and hit my head and spent the night in the hospital.  Itching/rash, which had been fairly light for first 8 weeks started to increase.  Dr. put me on procit to increase blood levels.  I started having low grade fevers with the rash increasing.  Stayed on all meds and at week 10, my fever started spiking to almost 105.  Ended up back in hospital with a severe drug reaction to the Incivek called DRESS syndrom (syndrome).  I litterly itched all over and developed a severe sunburn-like burn all over. All my skin pealed off. Dr. stopped the Incivek and Peg/Ribavirin and put me on steroid.  He then tried to reduce steriod and get me back on Peg/Riba, but the rash was still thriving so he had to take me off everything.  He will re-evaluate this week after my 12 wk blood test (was undectable at week 4, so still hopeful that the 10 wks of Incivek will hold).  Will try to go back on peg/riba after the rash is fully gone. Apparantly, I was in the 1% for severe drug reaction (found out there was a 10% mortality rate after - glad I didn't know during). It was not fun, still itching, but it is subsiding.

[nugglebuggle]

Hello
My husband is due to finish Incivek on Monday.  We are trying not to be too excited...what if the side effects don't subside?  He has done very well - WHAT A TROOPER!  Irritable at times but he he manages it well.  I can't tell you how much I want my husband back...I haven't heard him whistle in ages.  He used to just break out in a song (not that he can sing well) b/c he's such a happy guy...these days I just watch him sit on the couch half asleep.  He didn't quit work but his productivity has definitely been compromised.  He told me that his doctor noticed his irritability last week and offered him something for it.  He declined.  He has definitely suffered from "fire in the hole" and itching.  His doctor did prescribe vicodine for pain and that seems to manage the diarrhea.  Thanks for posting - your story gives me hope.  My husband may stop at 24 weeks even though he has cirrhosis - he was negative on the first bit of blood work (week 2) and the virus has not shown up in the blood again.  We understand that it lives on in the liver even though it doesn't show in the blood.  My husband's platelets are low - iron good - but nose bleeds are terrible.  I'm rambling.  I'm very grateful for this blog.  Please keep posting!!!  

[crazyandscared615]

My husband age 50 is on triple therapy week 9. I can relate. He is ill and cant work. I am working 2 jobs for now just to keep halfway going. I decided after a fw weeks that no matter what I was gonna love him through it. So I try to be supportive and when he is really irritable I find something to do & tell myself this is not the real him. He just feels like crap. The holidays were awful.  Our doctor told us to think of it as treating cancer.  You just gotta go through it. But it gets very scary when he gets out of the shower & cant breathe.  I feel helpless sometimes, but I know the best help I can give is support, love & compassion. 4 more weeks & incivek is over... I hate it...

[jab58]

finished week 12 of Incivek,one week later the rectal problems and the itching are 75% better,

[FoxyB]

So, I'm assuming that you didn't work your job.  I thought I was going to start the treatments Jan 25 but when I called the doctor's office they said my chart stated that I would call when I was ready.   My last visit before Christmas I told them I wanted to start after Christmas.  That's when they gave me an appointment for 1/25.  Not the first time this doctor and I have miscommunicated.  I took Interfuron treatments from 1/2008 - 10/2008; 6 months once a week and for the last 4 months daily.  I felt awful for almost 2 years.  My first gastro doctor referred me to this curent one because he's supposed to be the best in this area.  He sees 60 patients per day and never has much time to answer my questions or talk to me.  He originally told me he would sign my papers for short term disability but yesterday his nurse practictioner told me she had many patients who took the treatments who worked. I was apalled that she would minimize how I felt when she's never taken the treatments and everything I've read on line talks about the side effects being horrible.  I'm 63 years old; have insurance and feel that if my job is willing to comply, they should too.  I made an appointment to go back where I came from.  What do you think?

[FoxyB]

So, I'm assuming that you didn't work your job.  I thought I was going to start the treatments Jan 25 but when I called the doctor's office they said my chart stated that I would call when I was ready.   My last visit before Christmas I told them I wanted to start after Christmas.  That's when they gave me an appointment for 1/25.  Not the first time this doctor and I have miscommunicated.  I took Interfuron treatments from 1/2008 - 10/2008; 6 months once a week and for the last 4 months daily.  I felt awful for almost 2 years.  My first gastro doctor referred me to this curent one because he's supposed to be the best in this area.  He sees 60 patients per day and never has much time to answer my questions or talk to me.  He originally told me he would sign my papers for short term disability but yesterday his nurse practictioner told me she had many patients who took the treatments who worked. I was apalled that she would minimize how I felt when she's never taken the treatments and everything I've read on line talks about the side effects being horrible.  I'm 63 years old; have insurance and feel that if my job is willing to comply, they should too.  I made an appointment to go back where I came from.  What do you think?

[FoxyB]

So, I'm assuming that you didn't work your job.  I thought I was going to start the treatments Jan 25 but when I called the doctor's office they said my chart stated that I would call when I was ready.   My last visit before Christmas I told them I wanted to start after Christmas.  That's when they gave me an appointment for 1/25.  Not the first time this doctor and I have miscommunicated.  I took Interfuron treatments from 1/2008 - 10/2008; 6 months once a week and for the last 4 months daily.  I felt awful for almost 2 years.  My first gastro doctor referred me to this curent one because he's supposed to be the best in this area.  He sees 60 patients per day and never has much time to answer my questions or talk to me.  He originally told me he would sign my papers for short term disability but yesterday his nurse practictioner told me she had many patients who took the treatments who worked. I was apalled that she would minimize how I felt when she's never taken the treatments and everything I've read on line talks about the side effects being horrible.  I'm 63 years old; have insurance and feel that if my job is willing to comply, they should too.  I made an appointment to go back where I came from.  What do you think?

[FoxyB]

So, I'm assuming that your husband didn't work?  I thought I was going to start the treatments Jan 25 but when I called the doctor's office they said my chart stated that I would call when I was ready.   My last visit before Christmas I told them I wanted to start after Christmas.  That's when they gave me an appointment for 1/25.  Not the first time this doctor and I have miscommunicated.  I took Interfuron treatments from 1/2008 - 10/2008; 6 months once a week and for the last 4 months daily.  I felt awful for almost 2 years.  My first gastro doctor referred me to this curent one because he's supposed to be the best in this area.  He sees 60 patients per day and never has much time to answer my questions or talk to me.  He originally told me he would sign my papers for short term disability but yesterday his nurse practictioner told me she had many patients who took the treatments who worked. I was apalled that she would minimize how I felt when she's never taken the treatments and everything I've read on line talks about the side effects being horrible.  I'm 63 years old; have insurance and feel that if my job is willing to comply, they should too.  I made an appointment to go back where I came from.  What do you think?

[Mrmikie]

I start my rodeo tomorrow with the triple ... Looks like it's gonna be a bumpy ride from the comments I've read on here ... I just wanna be able to maintain my work schedule ...

[Mrmikie]

I start my rodeo tomorrow with the triple ... Looks like it's gonna be a bumpy ride from the comments I've read on here ... I just wanna be able to maintain my work schedule ...

[cbr1120]

Just finished my 12th week of Incivek and thought it would never end. Had hemmoroids (hemorrhoids), pneumonia, coughing constantly,which I think is a result of the ribapak. It was twelve weeks of tourture. Does anyone know if after the incivek is completed do you get your taste buds return, or do you have to wait until the whole treatment is completed, everything taste horrible. Has anyone else had this experience?

[pooh55811]

I finished Incivek on Dec. 19th. I do feel a lot better than I did on Incivek, but I still have side effects from the Pegasys and the Riba.

Not much tastes good to me. It is difficult to think of eating anything because nothing sounds good or tastes good, aty least not what I make, lol. Besides, I am too tired to cook. However, one thing I have been doing is to have some condiments with the other food, especially if it is meat. I use Greek olives or green olives, pickles,. pickled beets, anything with a little extra tasty flavor. If I eat them along with the other stuff, I am okay and can eat. Otherwise, blah.

I had a continual dry cough the entire time I was on Incivek after I finished Incivek, the cough went away. I thought it was the Riba too, but obviously it was the Incivek.

Also, the bowel issues get a lot better. Unfortunately I stil have the hemorrhoids which I am not happy about. I am hoping they will eventually go away, but I don't know.

[cbr1120]

Thanks for the info

[nugglebuggle]

My husband is on his 2nd week of being off incivek.  He says he has more energy.  He still gets bloody noses and is considering having his nose cauterized. We think the bloody noses are due to low platelets.  I did hear him humming this morning while he was getting ready for work...haven't heard that in a long time.  He is less irritable although we're told the irritability is due to the riba...riba rage.  So, even if it's due to the riba, he is happier.  He looks better, too.  For a while he was looking very haggard.  I'll keep you posted on his progress.  No setbacks so far and I think he's enjoying not eating so much fat.  Please post your experiences - I think it's important to share b/c this is so new to everyone.

[nugglebuggle]

Another thing - my husband constantly has a very dry throat.  He's learned that if he eats a pear or an apple, that it helps the dry throat better than if he drinks water.  He still drinks a LOT of water but the fruit trick has worked very well.

[Kindness789]

I just began week two of triple treatment and thought I would be able to work but I just went on leave. This new med hit fast and hard.  Work as long as you feel able to.  I was able to work thru the last treatment but this new stuff is hard.  Hope you have lots of support around you. Hold on cuz this ride is no joke.   Not to encouraging is it. Sorry. But you are not alone.

[cbr1120]

Thanks, after my 12th week bloodwork, the doctor told me the results for my viral lode should be in tommorrow and she will call. After 4 weeks my viral lode was 20 which was not considered undectable so I will have to go the full 48 weeks of treatment instead of the 24 which I was hoping for. My
hemoglobin is very low, between 7 and 8 so the decreased the riba from 1200 to 800. The also said I am enimic, has anyone had this experience.
I am always fatigued but continue to work and after coming home and climbing 15 steps to my unit, I'm exhausted and out of breath.

[pooh55811]

I have not experienced anemia like you have. Mine is in the 11's. However, others on the forum have. Some have had their Riba reduced; some have received rescue drugs like procrit; others have had transfusions. Perhaps if you post in a new thread with a title about treatment for anemia while on treatment, some of those anemic people will tell you more about their treatment.

Your Hemoglobin is pretty low. I hope it comes up.

[orphanedhawk]

Hi,
I happened to see you mentioned your husband constantly  has a dry throat. This may be what's called dry mouth. Besides drinking lots and lots of fluids, he should use some dental products to help reduce dry mouth. Dry mouth and tx, can accelerate tooth decay.
I use biotene mouthwash and gel as well as chew xylitol gum.
Try searching biotene and epic xylitol products.

Good luck,
OH

[mrpositive524]

Thanks for the info on dry mouth.   I am starting 8th week of Incivek and counting down 4 more weeks. It has been a tough ride so far but try keeping myself positive.

[nugglebuggle]

Thank you for dry mouth info.  We'll check into it and I'll tell you how it goes.  

[Patt626]

I have been done with the Incivek for almost 2 weeks. The dry mouth and throat get very bad, still. I has not improved. Big relief to get rid of all that fat. Wt down 7 pounds to about where I was when I started. Some of it was fluid retention, which is visible improved. I work, but not full-time. Getting dressed is still exhausting. Asthma has really acted up. Using rescue inhaler alot. Used to not need it for months. My viral load before treatment was over 1,300,000. Have been neg since 1st month check. Very relieved to be past the half-way mark. Taste buds are working better. On Procrit, as well as Pegasys and Co-Pegasys. Ribaviron dose was reduced to 800 mg when Procrit was started. Last week or 2 on the Incivek was rough.

[DeathToAVirus]

My experience was that my stool was extremely irritating, and my colon felt raw on one side. I started washing out my colon with an enema bulb, and that was all that I needed. I did that almost daily (sometimes twice daily) between weeks 4 and 6, and now the problem seems to have subsided, so I've quit doing it.

[DeathToAVirus]

I've just begun week 9 of treatment. I'm a 68 yr. old maie So far I think I've been doing really well, just to let those of you who are considering treatment that not everyone is totally trashed by it. I seem to be unaffected by the Pegasys; I take my weekly shot, and have never experienced the 'flu' symptoms. I had a rash between week 2 and week 4 that took some dedicated treatment - lotions, anti-histamines, triamcinolone acetonide when the itching was really bad, a few oatmeal baths. I got a cold with a bad cough that lasted almost a month between week 4 and 8, and wondered for awhile if it was a side-effect, but sadly I seem to have given it to other members of my family (sorry!), so I guess not everything is a side-effect of treatment. I've been feeling more and more tired and winded; my hemoglobin was 11.5 at week 6, and I couldn't tell if it was the cold or not, but now that the cold is mostly gone, I think this IS a side-effect. Other things I've noticed is I am much more emotional, and tend to tear-up over a sappy song or movie. I get stressed out easily by traffic and crowds. But mostly I feel blessed that treatment is going so well; I had read a lot of posts before beginning, and I was really freaked out by the prospects. My week 4 viral load was negative, so now I'm praying that it will be a week 12 as well, and I'll be done with this finally after 40 years and 24 weeks. I wish everyone the best; expect the worst and pray for the best.

[CatLil]

I am starting my treatment Thursday Feb.2. I have to admit I'm a bit scared. What can I eat to get the the fat I need.

[pooh55811]

Hello and welcome to the forum.

Everyone of us was scared before starting treatment so your feelings are normal.

For the fat here are some items:
8 ounces regular Greek Yogurt (not low fat)
peanut butter (check label)
butter (check label)
bratwurst
cream cheese (check label)
eggnog 1 cup
heavy whipping cream
1 medium avocado
2 ounces chedder cheese or havarti cheese
regular ice cream (not low fat) either 1/2 cup or a cup (look at the label)
I think hamburgers, potato chips, and some other stuff like that have a lot of fat in them too. Check labels.

Here are a few more examples:
Granola – 33 grms / cup
Cream Cheese – 10 grms/ounce
Milk Chocolate – 10 grms/ounce
Cheeseburger 4 oz – 30 grms
Potato salad – 10 grms/ ½ cup (eggs Mayo type)
Hot Dog – 18 grms  
Nature Valley Roasted nut Crunch – 1 bar – 13grms

It is imperative that you get the 20 grams of fat with every dose of Incivek so you may have to get creative. I got pretty sick of Greek yogurt, but that was my mainstay. If I felt I was short fat I would add whipping cream to items to get more fat.

Another thing, if you start getting any side effects, get on top of them right away. They snowball. If you get side effects, post and we can tell you what remedies we uded for them.

Good luck!

[ve24]

must i consume the 20 grams of fat? and why. I start my three way cocktail on Feb. 11, 2012 after the first round of treatment 2 yrs ago.  Thanks for the support

[Sicklysandy]

I'm on week 6 of incevik. I have cleared the hep c virus. But I feel worse.  I still have 6 more weeks of incevik to go. Its so hard. I feel like I have the flu all the time.

[pjhep80]

i finished my 12 weeks with incivek about 10 weeks ago, took about a month for the sides to ease up mainly the itching and tired feeling my levels dropped right after but then came back up.... it is easier without the incivek but it still *****... lol...

[pjhep80]

it will get better... hang in !!!!!!

[mrpositive524]

Thank you for the feed back.  I am on the week 10 of Incivek combo Tx and I am having rough time with short of breath and other side effects. I am on Procrit now too.   I am hoping it will be a bit easier on the 12 weeks of Incivek treatment is over.  My doc told me that rabashere is also casusing the red cell count to drop.  So,  it will be still tough road ahead for another 12 week without Incivek.
I will keep counting down till it is over.

[Jester18]

Finished with the Incivek a week ago. Hemorrhoids cleared up in a couple of days. Still waiting for the itching to subside but it stopped getting worse...

[mrpositive524]

Congrats to finishing the Incivek tx.  Is your short of break getting better ?
My Red cell count has been down and I going through tought time.  I have 3 weeks to finish the Incivek.  

[TRI2011]

Finished Incivek on Feb 10, wonder how long it will take for the rash and facial swelling to go away.

[suzique1971777]

I started /treatment on 1/17/12.  I am working full time.  I am having some shortness of breath and extreme fatigue.  My hemoglobin has dropped to 10.5. I have noticed a slight raised pin point red rash to my legs and lately it seems I have some flushed warmth noted to my back, neck, and face.  Anyone else experiencing the flushed almost sunburn feeling?  I have been trying to drink plenty of water daily.  If you look on the internet there are charts of food listings with grams of fat.  I have a bowl of cereal with milk, almonds, pecans, or such for breakfast daily. It all adds up.  I try to eat only the 3 meals daily, but I still gained 5 lbs.  Avocadoes are high in fat grams and are great in salads or on a sandwich.  

[Liverboyzzz]

I have one week of Incivek left. started DEC. 9th. the first few weeks were a pain in the *** literally ha.the thing that really saved me was olive oil.it is 14 grams of fat in a tablespoon. before that it was bacon ,etc. some foods are too acidic or something for me,plenty of fat but still the burning .i found for me citrus was a no go,avocado was not really convincing as far as the "end results" were concerned.so typically its three eggs over easy in the morning then i pour olive oil on them and chop them up in a bowl yummy. some times i just take a swig from the bottle of olive oil if I am not exactly sure if the fat content was sufficient in the meal proceeding my dose. i always take some fish oil (omega 3's),vitamin E*800mg,B complex,CoQ10,whole milk,jasmine green tea ,yogurt(whole milk yogurt) and for the other meals steaks egg salad, tuna salads extra mayo ...lots of pastas with extra butter,olive oil, bacon grease added to the mix.the rash was never really a serious issue for me,but still colloidal oatmeal baths and lots of moisturizing with Eucerin calming creme. yeah my hematocrit was 29.2 hemoglobin 9.2 as of yesterday so feeling the fatigue of anemia ,so far I have gotten three shots of epogen(one yesterday)it leveled off the hematocrit hemoglobin,and actually it came up a few weeks ago,so the hematologists office didn't give me epogen last week. so far its been a total success story no detectable virus etc. the anemia is actually a good sign regarding sustained viral response. so if it can be kept for dropping through the floor you should be glad it's happening ,no? as far as the weird taste in the mouth is concerned, if you are a good cook then you"ll be fine God help the coke swilling junk food junkies. these drugs can kill you so take care of your body.It  ***** that I can't snowboard but  there is always next season.

[pooh55811]

Yes, you must consume 20 grams of fat with every dose of Incivek.

The reason is absorption and efficacy of the drug.

Effects of Food on Oral Absorption

"The systemic exposure (AUC) to telaprevir was increased by 237% when telaprevir was administered with a standard fat meal (containing 533 kcal and 21 g fat) compared to when telaprevir was administered under fasting conditions. In addition, the type of meal significantly affects exposure to telaprevir. Relative to fasting, when telaprevir was administered with a low-fat meal (249 kcal, 3.6 g fat) and a high-fat meal (928 kcal, 56 g fat), the systemic exposure (AUC) to telaprevir was increased by approximately 117% and 330%, respectively. Doses of Incivek were administered within 30 minutes of completing a meal or snack containing approximately 20 grams of fat in the Phase 3 trials. Therefore, Incivek should always be taken with food (not low fat)."

http://www.drugs.com/pro/incivek.html

[Phipnio]

Called Incivik phone number in their booklet and asked about using oil for the fat portions. The response was an adamant NO. MUST BE FOOD, NOT LIQUID OR IT WON'T WORK. NO LIQUIDS.  Maybe you can call their 800 number and they will explain it to you. Good luck!

[Phipnio]

Did you get my comment about not using oils for your fat grams?  I'm new on this site and can't tell if my message went through or not. Incivik nurse says NO OILS for fat grams. Won't work.

[pooh55811]

Hi and welcome to the forum.

Your point about the oil (and liquids) is an excellent point and I don't think most people know it. I have seen many people taking mainly fatty liquids with their Inc and I have always thought they needed solid food too along with the fatty liquid.

You may want to post this information in a new thread entitled, Incivek: fatty liquid not adequat, need fatty foods

Go towards the top of the page, orange box, post a question


This information is important and should be passed along.

[mrpositive524]

I am finishing up the 12 weeks of INCIVEK tx this week.  My virus has not been detected since week 4.   Past 2 weeks have been rough time.  My red blood cell went down lower than the doctor wanted and ended up getting blood transfusion.   My short of breath is under control and I should be able to finish the next 12 week of Pyga + Riva tx.  I am sick of eating 20g of fat with the Med and I am so glad that is over.

[Papolove]

wow, am hoping that the nurse at 800 # is wrong. I've taken incivik about 3 times with just olive oil, two tablespoons as per my doctor. Am on week 7 and unde. at 4th week. I have gone to incivik site and read that 30 grams of fat be taken. My doctor showed me 20 grams. in her info. Good luck all.

[Papolove]

wow, am hoping that the nurse at 800 # is wrong. I've taken incivik about 3 times with just olive oil, two tablespoons as per my doctor. Am on week 7 and unde. at 4th week. I have gone to incivik site and read that 30 grams of fat be taken. My doctor showed me 20 grams. in her info. Good luck all.

[Roman_13]

I want to thank you for all of your insight and you are very knowledgeable!!
You have done you home work and some of your remedies have helped me and have given me hope at the end of my 12 wk!! Starting week 11 tonight and taking it day by my rash is more to the moderate side hopefully coming to an end of the INC!!

thanks  again!!

sincerely

Roman_13

[Liverboyzzz]

hello fellow lucky people, just started first day after incivek(week 13) super happy really. no virus detected since week two,anemia was controlled by epogen shots at the oncology clinic,rash never really an issue. i was eating fatty foods(20 to 30 grams of fat) AND liberally adding olive oil before taking incivek .never took the meds with only olive oil. anywho anorectal problems were mostly aleviated in the second week when i decided 20grams wasn't enough,so I began to eat more fatty foods than recomended and ,voila,still   occasionally I had flare ups ,no big deal,took more showers ,oatmeal baths,moisturizer ... Energy was fleeting mosly but ,hell, reading isn't aerobic haha . already I feel much better one the first morning after incivek. being classified as a non-responder ,geno type 1a I feel like I dodged a bullet after having hep c for 21 years. no cirrhosis,fibrosis, tumors  and now no detectable virus . well I can't help but wonder if after the snow melts, if my motorcycling style will be less nuts.time will tell.hang in there, be proactive,good research and intuition can help with the side effects. oh and lastly,sleep as much as possible(it make the 12 weeks pass faster)

[liverlover48]

Thank to all of you. I got a lot infirmation from your messages.
I started my INCIVEK,but felt sooo bab,so I must droped. After I read all your comments, I'm going for it. Wish me luck. Please, support me

[liverlover48]

how did it take to feel OK after start to take INCIVEK

[Greta2012]

Is it true that the fat has to come from food??  I have been drinking full fat milk or putting it in a shake without any problems.  I see my doc on Wednesday so I will be sure to ask...

[CatLil]

I just started week six of my tx. I am having some trouble with thrush mouth doc got me some swish and swallow I would rather not swallow. I also have some blistering on my legs or anywhere my clothing rubs. I stopped shaving my legs that helped. I have had itching since the second week but it is controllable with caladryl and moisturizure. I am bummed out about the weight gain 10lbs in 4 weeks I have just spent the last three years trying to lose 53 lbs. I have a Lapland and have had a very hard time eating all that fat. I just hope I can get back on track as soon as this is over. Thanks everyone for being there for me we must stick together and we will all get through this too.

[pooh55811]

I did not see your post from the 4th.

You might want to to call the Incivek nurse and ask to be sure. My understanding is that the fat can come from anywhere but you should not just take liquid fat by itself (such as several tablespoos of oil or whipping cream) and eat no food with it.I always ate some food, even when I drank the eggnog for the fat. I always ate other food even with my Greek yogurt (toast and butter or some other solid food). I used the liquids and the butter and the mayo to add to the solid food so I would be sure to get enough fat. I probably added more than I needed but I wanted to err on the side of caution.

[pooh55811]

You should probably tell your doctor about the itching and blistering on your legs (and elsewhere). Keep an eye on it because the rashes can change and they can get worse fast.

I gained 25 pounds while on Incivek but I have been off Inc since Dec. 18th and I have lost 19 of those pounds already.

I am assuming you mean Lapband (not Lapland). I can see the problem with eating the fat. That must be really difficult. I really have no suggestions. Perhaps your treating doc or the doc who did the Lapband has some suggestions. One way or another, you have to get the fat in if you are on Incivek.

Best of luck.

[CooterT]

I have heard Zinc will help with the taste factor.  I am going to buy some liquid zinc as it says that when you put it in your mouth you should taste the zinc and if you dont then you have a deficeincy. Then keep taking it till you can taste it.  So I will let you know if it works.  

[micheall]

One member suggested yogurt every other day to control mouth taste.It my be bacteria developing and yogurt neutralizes it.I used Caladryl clear so much my heart rate increased.I started cooling my body down with ice packs or walking outside till it cools.Stops the itch.My after effects on incevek was headaches.I forgot to continue to drink lots of water and other fluids after end of tx.

[julesy611]

I notice few complaints about rectal burning and diarrhea. I'm in combo tx 2 mos. and Incivik 4 weeks. The GI issues are overwhelming and hope I can hang in there! Is there anyone who has suggestions to alleviate the diarrhea?

[stormy456]

Hi, there are PLENTY of posts on this fun topic!  When my husband was hit with this, he took 1 (not 2!) anti-diarrheal (Lomitil) for a few days, and added in 15g of water soluble fiber.  Did the trick within 2 days.  Hope it works for you.

[lilnance]

How long did your itching last after you came off Incivek?  I am going crazy and it is sporatic.

[OJay63]

I just finished week 12 of Incivek yesterday.
My EXTREMELY painful hemmarhoid and bowel movement experience started on day 3 and continued relentlessly until about day 14. I tried using every over the counter and prescription medication I could get my hands on, NOTHING worked. The key is in eating the 20 grams of "healthy" fat and waiting twenty minutes before taking the Incivek. The types of fats are extremely important here too. If you eat healthy fats and the Incivek will have a better chance of absobing into your body instead of coming out your back side radioactive. The pain in your rectum comes from the radioactive Incivek that did not get absorbed by your body so it gets expelled undigested. Ever notice light colored specks in your bowell movement? Sometimes it will appear very light colored. That's undigested Incivek and your rectum reacts with extreme pain and swelling (Hemarhoids).
When I switched my fats to Avacados, Black Olives, and Raw Almonds/Walnuts, the Incivek absorbed better and this stopped the anal pain for the remainder of the 12 week treatment. These types of fats are tried and true and your body readily accepts them, unlike many other processed fats found in prepackaged grocery items. Eat only foods that Cave Men ate and your body will appreciate it and reward you by absorbing the Incivek. Hope this helps! Good luck and just keep your eye on the finish line. The drug does work and you will be Hep free in the end.

[OJay63]

iI completed week 12 of Incivek yesterday.
I had 3 Physicians, 2 Allergists and 2 Dermatologists working  on this problem. I wanted as many brilliant minds as I could possibly find to help fix this problem.
The combination that finally stopped the rash in its tracks were Omnaris Nasal Steroids and Hydroxyzine. I also used Benadryl (Diphenhydramine) on occassion. I also religiously rinsed my nasal passages with a netty pot filled with saline and distilled water.
BLOCKING HISTAMINES PREVENTS THE RASH!
Creams only partially and temporaily sooth the rash after the damage is already done.

[CatLil]

I am in week 9 of my incivek and am having the rash problem. Is this a prescription or over the counter. Need relief soon!!! Thanks for sharing your experience with us it is nice to know someone can help.

[Roman_13]

CatLil,

I am now in week fifteen, so I am three weeks out of the Incivek and I experienced all the symptoms and here is what I did. First thing in the morning I took a Zertac10MG, Hydroxayzine 25MG twice a day, then I
would take a .025 Benadryl as needed. At night with all my meds I would
also take Atarax 25MG. I cannot express enough how important to stay  
hydrated I was drinking at least 6 plus 16 oz bottles daily. Now that I am off the Incivek I am still experiencing some side affects but much more bearable again stay hydrated daily no hot showers! luke warm at best, cold was the best for me as much as I don't like taking cold showers!!! Here is
something that should help you thanks to pooh55811 shared with me This link in great and very helpful!!

http://www.incivek.com/hcp/assess-and-manage-rash.

Some days are better than others but I just take it one day at a time!! With thirty five weeks left I know at some point there is a light at the end of the tunnel..
Hang in there:-)
  

[butchcain51]

For me the rash stayed about the same for a week and was mostley gone after 2-3 weeks. Try ice packs on the worst areas.

[butchcain51]

For me the rash stayed about the same for a week and was mostley gone after 2-3 weeks. Try ice packs on the worst areas.

[Idyllic]

Thank you everyone who has kept this thread alive! I have not been feeling very encouraged. I am so glad I stumbled upon this thread. I took my last Incivek on Friday and was hoping that I would feel at least a little better!. Mostly in my case I am hoping to be less Anemic.

Already today I am not having as difficult time trying to catch my breath and I can walk (rather than crawl) up the stairs. As I look back I simply cannot believe my driving. It was dangerous and irresponsible to drive with slow reflexes, no oxygen and no focus. About a week ago I almost got in an accident. It would have been my fault. I still cannot get the petrified expression of the other driver's face out of my mind. I have not had that close a call in over 20 years!

My Hgb was 10.2 on week 8 and I figure it may have dropped a little lower in the past four weeks. I had my 12 weeks labs on Friday so I will find out then.

I have been through the Peg/Riba treatment before so I know I am not out of the woods.

[Pappy1955]

Try nupercainal it's a miracle.   My surgeon gave me a script 6 years ago for treating acute, inoperable hemerroids), I have purchased  with script and otc. Read the warnings use as recommended. This works great when you are forcing razor blades through the grape pods on your but.

I think my worst potty sessions occur when less fat is taken with the Poison Pink Pills. Absorbing more Incivek leaves less material to cause the fire down below.

After about a week with the metal taste I was cleaning an old silver coin by rubbing between my thumb and fore finger. After a few minutes my taste had become a lot more normal. Then saw where zinc is used for this problem.

[we4640]

I got hemorrhidal medicated wipes at Wal Mart.  Using these is about as painful as anything else, but at least when you're finished, you can pretty sure that you're clean.  The pain should subside in a little while because all the fecal material has been removed.  To prevent firerrhea, I have taken Immodium.  The down side to that is that you get somewhat constipated, but at least you can get through your work day without fearing a really painful discharge.  For me, firerrhea was the most difficult part of Incivek treatment.  I finished Incivek four days ago.  I feel better, but the firerrhea is slow to leave.  I wish you the best of luck with your Incivek treatment.

[we4640]

Just be sure to take your peg shot and rib on an evening when you'll have two days off work.  By the third day, you'll be doing better.

[we4640]

Hydrocortisone cream is helpful.  Apply it directly to the rash.  

[we4640]

I have just finished Incivek, and I had the same problem as you.  Other posts have said to really be sure to get the 20grams of fat with the Incivek.  Because I hated eating all that fat three times a day, I would slide a little on that point, but I may have been better off if I had been better about eating the fat.  My viral load is zero, so this has worked for me.

[we4640]

One day at a time...literally; it's just that.  Get through today and move on.  I just finished incivek, and it was a ******, but it can be done.

[aagalozano]

Its been week 8, and itching like hell, does anyone no when the rash goes away taking benadryl but does not work any advice to help qith this disconfort

[Roman_13]

I am now in week seventeen, so I am five weeks out of the Incivek and I experienced all the symptoms and here is what I did. First thing in the morning I took a Zyrtac10MG, Hydroxayzine 25MG twice a day, then I
would take a .025 Benadryl as needed. At night with all my meds I would
also take Atarax 25MG. I cannot express enough how important to stay  
hydrated I was drinking at least 6 plus 16 oz bottles daily. Now that I am off the Incivek I am still experiencing some side affects but much more bearable again stay hydrated daily no hot showers! luke warm at best, cold was the best for me as much as I don't like taking cold showers!!! Here is
something that should help you this link in great and very helpful!!

http://www.incivek.com/hcp/assess-and-manage-rash.

Some days are better than others but I just take it one day at a time!! With thirty five weeks left I know at some point there is a light at the end of the tunnel..
Hang in there:-)

[squeez5474]

I have 3 weeks of incevek left and I cant wait till its over.  My side effects have been  the same as everyone else about the same since week four.  Is anyone having problems sleeping?  I cant stay asleep at night seems like i am up every 20 min or so..

[rambleon40]

It amazes me what I am reading here.  

[Dee1956]

While the tx was horrible, I am now 2 months post tx and I have to say I feel better than I have in many many years
After I treated the first time I felt horrible, never felt like myself again, until now.  Now I know it was the virus continuing to cause damage that was making me so sick.  I could not have worked during the first 12 weeks of Invicek

[legion50]

My husband did the treatment with the three cocktails for 4 weeks. His platlet count fell down around 28000 and he was admited into the hospital for treatment and given platlets and patasiom, that was on a Monday and he was released on Tuesday. He went and had blood work done on Friday and he platlets were droping again. We went to his doctor the following Thursday and he told him that he could not go through the treatment and stopped everything. My husband is still so sick that he can not hold his head up. How long, are does anyone know, does the side effects last after stopping the treatments?

[Drgnfly4211]

I am going into my 4th week of tx, what happens if you don't get all the fat grams you need with med?  I have found that the wet wipes and then using aquaphor or vaseline keeps the burning and itching of the rectum at bay.

[Roman_13]

after I have stopped incevik it was about five weeks until I felt better by better I mean about 70% of myself. I am still taking Pega interferon and Riba for another thirty one weeks. I still have brain mush but I know that is from the interferon ... You two hang in there !!!!

[hrsepwrguy]

Effects of Food on Oral Absorption
The systemic exposure (AUC) to telaprevir was increased by 237% when telaprevir was administered with a standard fat meal (containing 533 kcal and 21 g fat) compared to when telaprevir was administered under fasting conditions. In addition, the type of meal significantly affects exposure to telaprevir. Relative to fasting, when telaprevir was administered with a low-fat meal (249 kcal, 3.6 g fat) and a high-fat meal (928 kcal, 56 g fat), the systemic exposure (AUC) to telaprevir was increased by approximately 117% and 330%, respectively. Doses of INCIVEK were administered within 30 minutes of completing a meal or snack containing approximately 20 grams of fat in the Phase 3 trials. Therefore, INCIVEK should always be taken with food (not low fat).

It is important to eat the required fat grams for proper absorbtion

[Thestruggle]

8 weeks on Incivek and after 4 undectable viral load.  although side effects can set you back, pray and keep the faith.  all things are possiible in Christ and He will see us through. I pray for us all to be healed and strengthened by the Lord.  It's always darkest before the dawn...

[stonecold4]

you need the 20grams of fat per dose it increases the drugs effectiveness its like 200% more effective (you will lose the weight after the cure and drink the water a gal a dayother wise you will be dryer than sand, as far as the itchuse baby wipes or shower --shower is the best i wqs clear after 1st week it works once the insivick is over the rest is cake.the pegasis will be still a few days of flu symtoms (symptoms) but tyenol is the trick,anti depressants are helpful ativan,paxil, the drugs deplets you of serotonin,sleep i use abien,and acid reflux i use omeprazole 40mg started at 20 (i was 230)now i`m 217 and @ my last week of peg,and ribo already finishied insivick

[stonecold4]

stay the course if you want the cure ,i`m cured i was were you are now you will do it  

[stonecold4]

you will do it ,i did now i`m cured my last week of ribo,and peg any help i can offer i`m here for anyone  

[stonecold4]

joe the stuff gets into your bone marrow thats why ,a little coffee if you can will help stay away from sugar

[stonecold4]

use the suppositorys and drink alot of waterand fruit water is a big help

[unprepared]

I have sever anxiety and agitation. is this from the incevik

[unprepared]

I have sever anxiety and agitation. is this from the incevik

[rafacy]

yes  i have a lot its start first burning next 4 days bleeding and it just stopt a little after 3 weeks i still have a pain in anus area but compare to earlier time its ok i lost like one third of small glass of blood every time when i went to bathroom

[Roman_13]

Take Ambien / Tylenol  PM for sleep your Dr can give you a script.
I would try that to start I too had a very tough time sleeping on a good night three to four hours.

Hang in there !!

[jimf1085]

starting  the incivek next week. i am a liver recipient. has anyone had a transplant and is on the treatment?

[jimf1085]

starting  the incivek next week. i am a liver recipient. has anyone had a transplant and is on the treatment?

[jimf1085]

starting  the incivek next week. i am a liver recipient. has anyone had a transplant and is on the treatment?

.

[hrsepwrguy]

Go to the top of this page and use the orange post a question button, it will start a new thread and you will get more responses.

[mrhopeful]

I just read a book called "battling hepatitis-C with Interferon" that helped me to be mentally prepared for treatment, and it helped a lot to hear about this man's treatment.

[mike_tried_this]

Three days into treatment I experienced a severe burning from my blow hole, it felt like a flamethrower. The nurses said it was from the unused or undigested portion of the INCIVEK that was causing this discomfort. I drank 16 to 20 ounces of water when taking this medicine and that helped. I also used Tucks and that relieved the pain instantly. Later it became painful and began to itch and I went to a local drug store called Walgreens and bought Walgreens Maximum Strength Pain Relief Hemorrhoidal Cream and started using it and that worked. It’s important to keep this area clean. First I’d wipe with dry toilet paper, and next with a wet wipe that’s used for a baby’s butt and again with dry toilet paper. Remember to wipe, not polish; this isn’t a beauty contest. Since it no longer burns there, I began using a Bacitracin Antibiotic put out by Water-Jel that contained 500 units of Bacitracin Zinc and that’s helping it heal.  

[mike_tried_this]

Three days into treatment I experienced a severe burning from my blow hole, it felt like a flamethrower. The nurses said it was from the unused or undigested portion of the INCIVEK that was causing this discomfort. I drank 16 to 20 ounces of water when taking this medicine and that helped. I also used Tucks and that relieved the pain instantly. Later it became painful and began to itch and I went to a local drug store called Walgreens and bought Walgreens Maximum Strength Pain Relief Hemorrhoidal Cream and started using it and that worked. It’s important to keep this area clean. First I’d wipe with dry toilet paper, and next with a wet wipe that’s used for a baby’s butt and again with dry toilet paper. Remember to wipe, not polish; this isn’t a beauty contest. Since it no longer burns there, I began using a Bacitracin Antibiotic put out by Water-Jel that contained 500 units of Bacitracin Zinc and that’s helping it heal.  

[dhwilkins]

I have been told if you do not eat the 20 grms of fat as needed with each dose of Incivek then you will get 'fire ***', 'cactus ***', etc.  I understand that the fat 'moves' to the liver faster and thus more of the meds will be absorbed and not sent out the rear end.  My husband (the patient) keeps baby oil on hand or butt paste whenever the least discomfort starts.

[mike_tried_this]

Oops, I didn't mention that, thanks. My fat intake is done through one of or a small combination of these foods, 1 cup of ice cream after it's been softened in the microwave, a quarter cup of sunflower seeds, a tablespoon of olive oil, a large tablespoon of peanut butter, a handful of Pringles potato chips or a couple pieces of cheddar cheese. You are correct, 20 grams of fat is needed with each dose of INCIVEK.

[dhwilkins]

I have read many ups and downs of the meds but there are some people that don't have all the problems.  My husband had a 10.5 Million viral count - he  was down to 7 at 4 wks..so he must go the full 48 weeks.  His biggest problem is upset stomach and tired.  He has not had the powerful fire*** but he has enough problems to keep baby oil close by.  He has had very mild itching but I noticed today he has 3 spots on his face that appear to be like an acne....(he is at week 8 now with Incivek).  He is immensely tired and out of breath but has not missed one hour of work since he started.  He is not a manual worker but has over 1000 people working for him so the stress level is high.  This is his second time with treatment...the first treatment (5 yrs ago) was the Riva and Peg - it stopped the hepC for a while but it came back big time.  He says this time it is obvious that the Incivek multiplies the strength of the original meds....I just look forward to him smiling again once he gets off the Incivek.  He is very quiet - never argumentive...but I miss the laughter and I hate to see him out of breath...he is 60 and got this disease from a blood transfusion in 1974.

[rickdware38]

I'm about to complete the incivek.  It's been a long hard way to go but, you will learn to manage to pain and side effects.  My viro load whet to zero in the first week and has been the same since I started.  I can't wait to complete the next week and one half. Incivek has been a real pain in the ***.  I'm ready to go back to a normal life style

[mike_tried_this]

I finished the first treatment in March 2010 and it came back, I went from 0 to 620,000. Twenty-two months later now, in 2012 my viral load is at 4.3 million. For upset stomach I use 2-Pepto Bismol caplets and that works well. For my itching I use Eucerin Skin Calming Itch Relief Treatment Lotion and it works good. My energy levels are also low so I'll take two Panax Ginseng Capsules (600mg) from GNC and break them open in a spoon and swallow that along with a Ultra Energy Now Caplet (in the yellow package 1-800-649-2248) with water and that will give me boost of energy almost instantly. This forum has been so helpful to me, I'm want to do all I can to give back. I've been on treatment for a month and will get my results on Thursday, June 14. I'm anticipating positive results.

[mike_tried_this]

What I forgot to mention is when I take the Ginseng, I'll slice up an apple, eat a couple of slices, take the Ginseng and then eat the rest of my apple. Not long after I'm finished, I'm ready to go to work. I never lay back down after taking INCIVEK, I sit in a recliner. The inclined position helps avoid stomach upset. I always eat my fat sources 15 to 20 minutes prior to taking INCIVEK.

[Hecuba]

Also be sure your fat is taken with a solid. Like the olive oil needs to be taken with bread not just choked down.

[Budd007]

Hang in there Incivek users ,  I did a total treatment of 51 weeks for the cure,started the double cocktail on Jan.5 2011 and in May of 2011 Incivek was aproved to be used and on July 7 2011 I started my 12 weeks of Incivek what a GROOLING ride that was , But I made it through the ride , the itching ,lack of apetite , wore down feeling , and worst of all the lack of sleep, For the itching I used a cream called Triamcinolone Acetonide Cream, ask your doctor for this it works, for your apetite thats up to you, I kind of forced myself to eat, a lot of icecream bars, slimfast, oatmeal the junk food is not good for you but it helps, a lot of fat, I went from 235lbs.to 169lbs. mostly losing the weight during the run with Incivek now I am back to 190lbs. and holding. It took me until Jan.2012 to start feeling myself again, I still have bad days of feeling worthless ,just keep that positive thought and positive health and you do feel better.Not to toot my horn to loud yet, I have my 6 month check up in Aug. but so far I have come back Negative from using Incivek, A great big THANKS to the people that devaloped this fantastic grooling drug.

[Adventurer58]

Hi All.  I have 2 days left on Incivek - I have been counting down the days since day 1!  I contracted Hep C 37 years ago when I was 17 and have been very lucky in that I have very little liver damage.  I did the interferon and ribavaron 48 week treatment twice in the last 10 years - virus was gone by the time I finished the treatment but was back in 6 months.  I was so excited when the new treatment was approved last year and couldn't wait to start.  The first 8 weeks I had it pretty easy - every day was a different symptom but it only lasted a few hours.  I had the itching skin, not alot and not every day, skin felt like it was sunburned, dumbness on one side of the face, anal itching and hemorrhoids, light-headed, "fogginess", metal taste in my mouth,, dry mouth, burning lips.  I had shortness of breath during my daily treadmill workout but once I slowed the pace I  was OK.  Week 4 viral was undectable - music to my ears!  At week 8 I started feeling the fatigue and started napping in the evenings after work and alot on the weekends.  At week 8 I also got unrelated health issues that only made me more fatigued and (a blocked salivary gland that was so painful and then an eye allergy that made my eyelids red and so itchy.)  I finished all that early this week and now the body itchiness is back more intense but the cortisone cream is helping.  I hate the evening fat the most - mornings have been eggs, sausage and toast or oatmeal with pecans or walnut  After lunch snack has been mainly cheese, yogurt with nuts and fruits or a peanut butter smoothie.  10 pm fat has been the most difficult and what worked in week 2 made me gag in week 4, so it has been a challenge to get the pm fat to work.  I have had sad days, angry days, poor-pitifull-me days, happy days but in general just plain "I want this to be OVER" days!   Week 12 blood test will be this Thursday so I will know then if I will do 24 or 48 weeks.  Thank you all for your posts - I have found postive thoughts in most of them :)  This has not been an easy journey but one that I had to take.  The treatment is a beast but we have to fight!   Best of luck to all!

[Jillko59]

I found it much easier to take two tablespoons of macadamia nut oil before taking the Incevik.

[ocgirl421]

I started the treatment march1st. I have dry mouth, itchy skin, lost weight,lost hair,depressed,short temper,no energy,and had a bad rash from my chest to ankles. I'm going to beat this treatment. Thank God

[mike_tried_this]

Three days into treatment I experienced a severe rectal burning. The nurses said it was from the unused or undigested portion of the INCIVEK that was causing this discomfort.   I drink 16 to 20 ounces of water when taking this medicine and that helped. I also used Tucks and that relieved the pain instantly. Later it became painful and began to itch so I went to a local drug store called Walgreens and bought Walgreens Maximum Strength Pain Relief Hemorrhoidal Cream and started using it and that worked. It’s important to keep that area clean. First I’d wipe with dry toilet paper, and next with a wet wipe that’s used for a baby’s butt and again with dry toilet paper. Since it no longer burns there, I began using a Bacitracin Antibiotic put out by Water-Jel that contained 500 units of Bacitracin Zinc and that’s helping it heal. My fat intake is done through one of or a small combination of these foods, 1 cup of ice cream after it's been softened in the microwave, a quarter cup of sunflower seeds, a tablespoon of olive oil, a large tablespoon of peanut butter, a handful of Pringles potato chips or a couple pieces of cheddar cheese. At least 20 grams of fat is needed with each dose of INCIVEK. I always eat my fat sources 15 to 20 minutes prior to taking INCIVEK. I never lay back down after taking INCIVEK, I sit in a recliner. The inclined position helps avoid stomach upset. For upset stomach I’ll take two Pepto Bismol caplets and that works well. For the itchy rash I use Eucerin Skin Calming Itch Relief Treatment Lotion and it works well. The soap I began using is Oil of Olay soothing cucumber infused with avocado oil. My energy levels are also low so I'll take two Panax Ginseng Capsules (600mg) from GNC and break them open in a spoon and swallow that along with a Ultra Energy Now Caplet (in the yellow package 1-800-649-2248) with water and that will give me boost of energy almost instantly. When I take the Ginseng, I'll slice up an apple, eat a couple of slices, take the Ginseng and then eat the rest of my apple. I don’t peel the apple because the skin has important antioxidants for the skin and hair. Not long after I'm finished, I'm ready to go to work. For the dry mouth, I chew the Biotene dry mouth gum with Xylitol from Walmart and it works well. So far all these side effects have been tolerable because I was able to find remedies that work.

[Brxman]

Just started week 8 on triple therapy.  Only bad side, NO energy and short of breath. Dr stopped incivek and ribaviv for a week or so hopefully hemoglobin will get more to normal. It's at 7.8.   Being tired and out of breath is a bit.h. I cleared at 4 wks so I don't want to take a chance of relapse. Dr will start on lower dose of ribaviv and work back up.
Anyone been in this situation before?

[Budd007]

My hemo had dropped around the 8th week of incevik my doc dropped me from 9 riba's a day to 6 a day this helped abit. After reaching the 8th week is when all hell broke loose on my mind and body , before that I was doing OK for the situation I was going through. What ever you do hang in there the best you can and life will start getting better. Just slow down ,I finished on the last day of last year after doing 51 wonderful weeks of treatment and so far its been 6 months and still negative knock on wood , Hang in there.

[TeeTom]

brxman, I too am starting week 8 today, I took medical leave from work cause I just don't have the energy to do much. I haven't had to modify my meds so far.

budd007, dang man you were taking 1800mgs of ribba a day? You must be a pretty big fella. The recommended dosage for Ribavirin is 1200mgs per day.

[TeeTom]

http://www.drugs.com/dosage/ribavirin.html

[mike_tried_this]

After I did this treatment and relapsed I wasn't interested in doing it again. I heard about the new drug but wasn't going to do it. Then I fell in love and couldn't be in a relationship knowing there was a cure but I was too lazy to give it a chance. I went to my doctor to get checked; my viral load had risen and was 7 times worse. When I told the love of my life, her support and promise to stand by me was the encouragement I needed. On the 27th day of this Triple Therapy treatment I did my CBC/Viral Load test and 8 days later found out it dropped from 4.3 million to being undetected, 0, it was gone. Until yesterday I never thought it'd be LOVE that would save my life but she proved it to me. Truly my success comes from her, my nurse/coach, my inspiration; the patients in this forum and developing a routine that strictly follows the requirements of this treatment which includes not missing any doses, and everything I wrote about in previous messages. May the Lord be with you all, don't give up, you can do it!

[beatingthis2012]

Hey ocgirl.  I had similar side effect as you.  Yesterday was my last day on the Incivek and thus far my body has responded as planned.  Will be glad when this whole thing is over.  Good luck to you and everyone that has to fight this illness..

[Brxman]

Week 8 of triple therapy. Developed anemia. Incevic info says to stop this drug. Dr will probably restart Ribivan at lower dose.  Does anyone know how this effects outcome of treatment?  I cleared at 4 wks.  But am wondering ?

[hhh64]

one of the best ways to shrink the haemorrhoids is to invert your legs.  lie on the floor or the bed and swing your legs up the wall.  stay like this for about 10 minutes daily and you should see an improvement.  i an on week three of the incevik treatment and have developed haemorrhoids.  my background as a yoga teacher gives me lots of tools to deal with the side effects and i'm hoping that as i move forward in treatment i can maintain this focus.

[dhwilkins]

Thought I would give an update on my husband.  He is over the Incivek and feels much better.  However, when he stopped the Incivek on July 6 - along with dehydration, he experienced A-fib on July 9 and had to be taken by ambulance to the hospital.  He NEVER has had any problem with his heart and we contribute it to the treatment with HepC.  However - the cardio dr didn't consult with the HepC doctor until the HepC doctor actually had to initiate the call.  Not pleased with the cardio  dr not considering the hepC treatment problems and prescribed 3 medicines to 'take care of the A-fib" problem.  We are waiting until the 4 wk cardio appt to encourage the cardio dr to wean my husband off the cardio meds.  So be prepared.....doctors don't necessarily like consulting with the doctor that knows what is going on!  The HepC dr even wondered why they put my husband on Amiodadrone.  But for those getting off the killer Incivek...there is light at the end of the tunnel........my husband started feeling better in one-two weeks after the last Incivek.  The peg intron still causes some discomfort the day after his injection...but each day is going up.  He will complete the meds on Sept 28...woohoo!

[mike1038]

I am doing the triple treatment I am now in week 14. I must say week 8 thru 12 was pretty bad but week 13 was the worst week of my life. Lots of itching upset stomach brain fog.  I think it was a week of withdrawal. Week 14 has been almost like I am not on treatment.

[k1nstang]

I required 9 blood transfusions during my incevek treatments... scary but im 3 weeks away from my 1 year Hep C treatments...and i feel so much better...hopefully the end results means Hep C is history''
GOOD LUCK TO EVERYONE GOING THRU THIS...GOD IS GOOD.. IRENE

[sansgene]

Better, but not great!!!

[Michaelrightnow]

I am wanting to get on this program...but how do I go about it? Do I just go to my doctor and say hey I need this stuff get me going? Have no ins so I need to find a way to get help somehow....any good advice on how to get started?

[dhwilkins]

I WENT TO WALGREENS AND THEY HAD SOME DISCOUNT PROGRAMS ALONG WITH THE PHARMACEUTICAL COMPANIES.  TRY THEM.

[Walkingshadow]

I am about to finish my 12th week of Incivek. I am genotype 1A, initial titer 1.5 million copies. I was undetectable at 4 weeks and again at about 8 or 10 weeks, so I have an "RVR" (rapid viral response), thank God. First few weeks, rectal symptoms were horrible (very sharp pains, bleeding, etc), but thankfully they really subsided a lot after that. Then all the other side effects began to dominate. Hemoglobin dropped to about 8, low WBC and platelet counts, tired all the time, wacko thoughts/depression/anger/mood swings, couldn't exercise at the gym anymore, couldn't sleep at night, etc. My doctor gave me something to help me sleep, and that helped a LOT. But, fatigue got progressively worse, and just about every day I have to lapse into a very deep sleep for a few hours. I guess I probably sleep a total of about 10 hours a day now (normal for me is about 8). I am SO sick of the high-fat diet. Looking forward to feeling a whole lot better in a week or two (hopefully); my last day on Incivek is 4 days from now. One bright note: I adjusted to the interferon pretty quickly. First few injections knocked me silly and pretty much shot the weekend, but after that it was barely noticeable. Maybe that's partly because the other symptoms/side effects were just gathering momentum, I dunno!! But, anyhow, I didn't have those "flu-like" symptoms after the first few IFN injections. I did get fairly regular fevers and retinal problems (bleeding) that really worried my doctor, also ended up in the ER with a urinary tract infection that was really bad. But after thinking about the alternatives, I was just determined to make it through the therapy. Another plus: time seems to go by pretty fast, so it didn't seem too long by the time I got to week 12. I think I just prepared myself for the worst mentally, so I ended up being a bit pleasantly surprised and thinking, "I can do this. I can make it through for 12 weeks [plus 12 more weeks of interferon and ribavirin]."

[dsk954]

I am off Incivek tmorrow 12/20/12.  Can't wait to feel a little back to normal.  I hope it leaves my system quickly.

[snowy052]

I will be starting week #8 of incivek, I have mouth sores my toung hurts I was wondering if you or any one else has had this problem

[hope1315]

good evening eb!this thread is sooo long and i cant read eth.i would like to ask if anybody knows what are the treatments for genotype 1 available in the market so far.does anybody know when was the first treatment ever avalaible for hep c?my sister was treated with interferon back in 04 and had terrible side effects but from what ive been reading the triple treatment with incivek (is this the latest treatment avalaible for geno 1?) must have worse side effects .is this true?and what percentage of cure does it have?thanx in advance for any info

[Duane1963]

Hello all this is my second stab at treatment but first with triple therapy, I am on week 8 of incivek and the rash is insane itchy red and blistery on my arms and legs I can say that this time around is no cake walk but easier then the first time , I believe its my mind set , this time I want to beat this, viral count was negative at 4 weeks now I just got to get past these last 4 weeks, Thanks all for sharing.

[pooh55811]

Welcome to the forum.

If you are not already seeing a dermatologist, please get an urgent/emergent appointment with one. Perhaps your doctor can refer you to one so you can be seen ASAP, like tomorrow. Incivek can cause severe rashes in people and they can cause treatment to be terminated and/or can be life threatening. You said you are blistering. You need to be treated ASAP, right away, by a dermatologist who will prescribe oral antihistamines for you and topical steroid ointments and creams for you. Over the counter medications are not going to be enough to clear up a red blistery rash.

I used Hydroxyzine 50 mg oral every 6 hours
Fluocinonide Ointment on my body
Hydrocortisone Valerate on my face
Clobetesol Solution on my scalp

These are all prescriptions. Over the counter meds were useless and did nothing for me.

Please see a dermatologist ASAP so that your treatment is not jeopardized and so that your health is not jeopardized.

Here is a link to some photos and some information about the Incivek rash.
It also gives you the clear warnings.

http://gitract.mngastro.com/mngi.nsf/patient_education/324B138CFD286259862578B000766281/$File/Incivek_Rash.pdf

Best of luck.

[Dee1956]

Hi there, do you have medication for the rash?  Many of us were given prescriptions, tried benedryl, cold cloths, oatmeal baths, etc
Because this is an older thread you may want to go to the top of this and click on post a question.  It doesn't have to be a question however you will get a lot more responses.
Please ask any questions you may have, there are many many wonderful people on here who will share their experience and tips for side effects with you
Best of luck

[Duane1963]

Thanks for all your help after looking at that link you posted, I can tell that my rash is in between a mild and moderate rash, and see my Dr. Monday it itches but with the eczema that I have I guess this can be expected, I have used a oatmeal paste and it helps dry it up, thanks and god bless you all

[Dee1956]

I am very glad to hear your rash is between mild and moderate.  Still a miserable feeling.  I hope your doctor was able to help you

[bjoles]

Does any body know the downside if you must stop treatment after you have finished incivek.I was "undetectable" after 12 weeks follow up but the effect on my blood seems to be taking a long time to rebound. After 4th transfusion (12 units) in 6 weeks, white count, hemoglobin, red cells, and platelets all low. I'm 17 weeks into the treatment. What if I have to stop now?