Starting Treatment with Incivek

[coo19]

This coming Friday I will start taking Pegasys, Copegus and Incivek to treat chronic HCV and I was wondering if anyone has already started treatment using all 3 drugs and what they have experienced as far as side effects? I'm trying to get some idea of just how sick I will be over the next 6 months from this treatment but can not find anyone who has taken all 3 drugs. Incivek was just approved and there isn't much information available except what the pharmacuetical companys list and I would just like to hear it from someone who has taken the medications together and lived through the side effects.

[pooh55811]

Welcome to the forum.

If you are getting depressed notify your doctor right away. If you are not already on anti-depressants, you may want to get on one. The medications make you depressed and many of is took anti-depressants while on treatment. If you have a psychiatrist, give him/her a call. If not, either your PCP can order something, or preferably, you can be see by a psychiatrist on an urgent basis and get started on anti-depressants.

For the chills and aching, you can take Tylenol if it is okay with your doctor, no more than 2000 mg in a 24 hour period. I usually took two 325 mg tabs of Tylenol when I took my shot and then another one in the morning after the shot. It help.

In the future, if you have a question, click on the orange "post a question" bar near the top of the page, add a subject title or heading, and ask your question. More people will see it and respond.

[uncledudeness]

welcome to the forum shawn. you will get plenty of good support here from people that are experienced and willing to share. as dontworry suggested, it's a good idea to start a new thread as you will get more direct responses to your question.

remember you are not alone on this journey. most of us are either in tx or have completed it. nothing like getting advice from someone that is living it.

take each day and side effect as it comes. you can do it. good luck.

[dontworry_behappy1]

Post a question like about treatment like " What do you all do for depression?" or maybe " Night chills and Incivek".  Let people know you
need support.  Triple treatment needs all the support you can get.  There
are many people here who have treated with triple treatment.  Let them know your here.
Best To You

[shawnwgavin]

Going on 2nd week of triple treatment. took my 2nd injection if it doesn'tget much worse im sure i can do this. depression is kicking in aching, chills at night. This is my first time posting on here. im guna need all the support i can get. my name is shawn.

[rain346]

Hello I not start yet my gastro appt is Dec 4th my bestfriend started dis Friday she telling me how she feels it getting me scared I have not much support

[Advocate1955]

My husband has treated twice before, and now he is on triple therapy with Incivek.  He finished the 12 weeks of Incivek on Dec. 22nd, and he is in week 16 now.  His VL dropped to 78 at week 4, UND at week 8, and UND at week 12, so Incivek is a strong but effective drug.  The side effects have been somewhat difficult, but manageable.  He missed one day of work due to extreme chills, and he missed one day of work due to symptoms of anemia, but his NP has managed all of side effects very well.  He had a dose reduction of ribavirin (from 1200 to 800) for two weeks because of the symptoms of anemia (last two weeks of December or so), but is back up to the full dose now and doing fine.  Talk to your doctor or your nurse practitioner about your worries.  There's no doubt that therapy is tough, but your chances of curing Hep C are better now with triple therapy, and that makes it worth it.
Advocate1955

[pooh55811]

I am on the triple med treatment with Incivek. I completed the Incivek 4 weeks ago and am on Inf. and Riba now for another 32 weeks.The first 12 weeks was no picnic and I had some side effects, but it was doable. Now that I am off Incivek, I feel better. I still have fatigue and malaise and aches and some nausea and no motivation. I am not doing much except being on the computer, watching educational DVDs, and doing a few errands. Plus I go to clasical music concerts about once a month. If I had it to do over again, I would stil take the meds. I want to be free of this virus before it harms me more.

If I were you, I would discuss your concerns with your MD and see how any problems will be handled if they come up. Your doc should be willing to treat any sides that come along (at least, the treatable sides). I know many sides really cannot be treated and I just put up with them, but sides like nausea, rash, rectal problems, and blood abnormalities can and should be treated, in my opinion.

You will get lots of support on the forum and many here have experienced side effects and have remedies that work.

[stormy456]

Hi-I'm sorry you had such a hard time with tx in the past.  My husband is on week 7 of triple tx, and the sfx have really not been terrible, he hasn't missed any work and had an especially good week this week.  Sfx seem to come and go.  Hoping that is the case for you.

[DollarSnake]

I went through the alpha 2 series Intf.&Rib. treatments in 2004. It was terrible!! My red blood cell bottemed out and was put on shots of epogen then, the white blood cell and they put me on nupogen. I was also put on paxil, celebrex, and ended up having panic attacks, where they put me on adavan. I could remember anything short term and had to put sticky notes on my arm. Breathing got tough, and the flu symptoms kept me in the house most of the time. I didn't have many good days at all. I'm concidering this new treatment but am really leary. I have a place to stay inside if  need to. Last time I had a hard time doing anything and it sucked!! I do need to do something cause the over-all symptoms are driving me crazy. I'm in pain with the joint aches, the headaches, the stomach problems0--ect....... I need some feedback y'all. I really want to get better but this stuff scare'e the s*** out of me. Mike D.

[HDCoop]

Hi, the word was good, still clear.  The doc apologized for the new nurse not giving me my results over the phone, said it wouldn't happen.  He told me if it was bad news, he would call me himself.   Wow that week was worse than waiting for the first 4 week result ;-)   Yesterday was my last dosage of Incivek :)   Hope this takes away the irritating sides so I don't need to buy any more tucks and Immodium ;-)   We're still talking about whether it will be 24 or 48 wks yet.   If I'm not doing too bad, I think I'll go for the full 48.  I was the first patient, at my Dr, to ask about this treatment.  Since my 4 week result was so good, he has start about a dozen more patients he said.   Well curious to see how things go after a couple of weeks of no Incivek....hope it's all good for all of us.   Keep up the good work and the good updates!

Coop

[coo19]

Hi, I really hope all turns out okay. I know my doctor told me after week 4 that the only time they will call me is if somethings wrong so I hope that's not the case with your doctor. I haven't been on the last couple weeks been very busy with my daughters 4th birthday on the 20th then halloween which she had 3 different trick or treats over the weekend. My town and her school do a lot of activities during the holidays. I just got off incivek last week and will have blood test today so I hope I am still undetectable. They have said I'm the optimal patient because I had it a short time and my viral load wasn't large at all. I'll keep you in my prayers and please make sure you keep me updated. I really hope they give you good news!

Rachel

[HDCoop]

Had a bad couple of weeks, so haven't even be online.  Got a call from my Dr. Friday, I have to go in for the results on my 8 week lab, this can't be good.  They told me over the phone that I was clear at my 4 week lab????????   Wish they would have just told me, now I have to wait a week to find out.  I wouldn't freak out any more on the phone then I will when I leave the doc's office ;-)    

Well I hope all you out there are still seeing good results and good luck to you just starting your treatments.  

Coop

[Lindsaylise33]

Thanks for your comments yes you sound so positive that's what I like.
I'd like to be a friend if I may and keep in touch and go this journey of new treatment w the incivek talking to strong postive people.
I started this around Oct 4,2011 so I'm barely on my second wk of treatment and it's going ok.The most side effects are at nightime.I have to put up w these horrible red bumps and rashes in all different spots but the doctor says it's ok.
Good Luck to you anna and everyone here!If you or anyone would like to chat and go through this treatment together please email me at ***@****  my name is Lindsay Lisa Thankyou.

[coo19]

Sorry I haven't replied sooner, as I told HDCoop my computer went caput took 2 weeks to get it fixed. I am taking shot 9 today and usually don't feel too bad anymore, Sundays tend to be my lowest energy day but Saturdays have never gotten to me except the first 3 weeks. I take my shots on Friday mornings and am fine now so that's really nice. As far as the discomfort in unmentionable places I TOTALLY understand! It's probably the most annoying and embarassing side effect of them all. What I have found works good is Aveeno body wash every day, it has oatmeal and is very gentle. Walmart has their brand generic and its about 4 bucks cheaper and works just as good. Although I still get the occassional issue that can't be helped with anything most the time this works. Another thing that I have noticed helps is diet, avoid any greasy foods and of all things don't eat a lot of processed foods, try to buy fresh meats, veges and fruit. Every time I have eaten processed stuff I end up on the potty a lot. Of course the more natural foods are better for you anyway and keep meats limited and try to stick to white meat it digest easier, of course having a steak or burger sometimes is not bad as long as it's not greasy or seasoned heavy. Corn and Peanut Butter are hard to digest and can give you probelms to. I have been very lucky and not had the issue of anemia, in fact my level only dropped from 12 before starting treatment to 11 on my 4 week blood work. I do know the shorntness of breath can be a pain, I have that and it doesn't help that I'm a smoker and don't exercise enough and have allergy problems, which living in Kentucky doesn't help that at all. It's one of the worst states for allergy sufferers. I do hope you get feeling better, it does help having things to keep you busy and just get a lot of sleep at night. I have a 4 yr old so I'm busy with her and my home mostly. I don't work. I hope you get the undetecable news soon, it feels awesome to hear and makes you think at least I'm not going through all this for nothing. Best of luck to you, please keep me posted!

Rachel

[coo19]

Well with her being 4 its hard for her to get the details obviously. She has seen me taking medication and giving the shots and what I have told her is Mommy is sick but this medicine will make me all better. She's kind of used to me taking medicine because I have epilepsy and she's seen a seizure before and is familiar with that cause we had to explain that to her a year ago when she saw it. I do not tell her I have a virus or anything cause she will just ask what is that and why and why and why like most 4 year olds do. Of course I keep the Incivek and Ribo in the top of my closet even though they are sealed good and the pegasys she knows to not touch under any circumstance. I do involve her in doctor visits mainly because I have no one to watch her so she is used to me going there and getting the blood work and stuff. She's a curious child but seems to understand when I say Mommy is sick I guess because like all children she's been sick and knows meds help her get better. I have found too much detail just turns into me trying to explain way too much and it confuses her so I keep it simple so she can understand it. What's really cute is she says a prayer at dinner and at the end she says "and baby jesus help mommy" It's absolutely adorable! Best advice I can give on that is keep it simple so they can understand and so you won't end up in a long series of What and Why's from them.

Rachel

[shanro]

what have you told your daughter, if anything, about your treatment?

[coo19]

Sorry I haven't replied in a couple weeks, stupid computer crashed and didn't have the means to fix it right away but it is working again now thank god. You don't realize how dependant you become on these until you don't have one!

Anyway I've gotten some great news since my last login. My viral load is undetectable as well! I wasn't told my original viral load until I found that out but apparently it was only 158,000 because I caught the virus so early (only had it about 1 year). They said I am doing optimal and could possibly finish early. Tomorrow is my 8 week check up so hopefully I will find out more then. I also, like you, started feeling better around the 4th week. It seemed the 3rd week was my worst and the last couple weeks I have been doing very well. Only had a couple days my energy was low but wasn't feeling bad overall just tired.In fact this morning I purchased tickets to see Bob Segar in November! YAY love that man! Also my daughter turns 4 Oct 20th so I have arranged to have her a big birthday party at a place called Puzzles Fun Dome. I know she's young and probably won't remember it but as long as she has fun that's what matters. It will also be the first time since her father and I divorced in a year and a half that we will be at the same place. Decided to invite him and his family because I know that would be so important to her. I know it's hard and she can't understand why we are never in the same place but it was a nasty divorce and were court ordered to not have contact until July this year and we divorced June 2010 so it's been a mess needless to say. But life goes on and I want her birthday to be very special and now that I've felt better for a few weeks I can start getting back to things I enjoy doing. It's nice to be able to planning things again. I'm even volunteering at her school now. Hope tomorrow they may tell me I can get off treatment earlier but even if not I won't be to upset it would just be nice. I will now be able to keep this updated and will let you know what they say. I am so glad to hear you have gotten that news as well and glad you are starting to feel better. If you do like I did after week 4 each week gets better and better. Always praying for you! Keep in touch and I will talk to you soon!

[coo19]

I to have a 4 year old daughter and had to get help, I haven't worked since 2009 due to some other health issues but I was in college and had to put that on hold until I finish treatment so I understand completely how your feeling. Best of luck to you!

Rachel

[HDCoop]

Just go the call from the doc today about my 4 week labs.......undetectable.  Wow, what a feeling, I can relax a little now.  This makes the side effects more bearable ;-)   Then I get home and take my incivek 3 hours too early ;-(~

I hope the same news to the rest of you out there!!!

[cursed180]

i didint type that post under my profilre,that was my friend who typed that,he has hep c and he was logged on under me,he forgot he was on my profile lol.
great to see all the good news,all the best to everyone

[Karenp1159]

In my 8th week of triple therapy.  Saturdays are a bust because I inject the interferon on Friday night.  Spend the day blacked-out sleeping or otherwise very low energy.  Each day, the energy picks up.  Mornings are tough.  Lots of side effects but none of the worst.  My personal worst has been severe anemia that wipes me out and makes me breathless.  By adjusting my dose of ribaviron and adding Procrit, that's now under control.  Lots of nausea, itchy rashes, dry cough and headaches.  Another discomfort they really don't mention is the  irritation in unmentionable areas - these are strong drugs and they go through the body and out!  Have tried sitz baths, prep h, Vaseline, medicated pads, cortisone creme - all help in intervals.  

Haven't missed a day of work.  I run my own business and we're at a critical juncture in its development and seasonality.  I'm not always there until 10 or 11, but I don't miss a day.  Frequently, I work late... I think the distraction of the work is a real benefit.

My enzyme levels are down from a one time high of 650 and average of 300-500 to about 65.  My latest viral load is at 140!  I'm a little worried about why it's not "undetectable," but I'm still encouraged.  They say that if it's not at zero by week 12, they might not continue the balance of the treatment..... one step at a time.  I'm mentally prepared for the 48 weeks.

Bring it on!

[Kitaman]

Thanks all for the encouragement.  The cocktail is tough but the results are fantastic: 4 mill down to 4000 in 2 weeks of treatment.

I just started 3 weeks ago and the doc prescribed lexapro to combat my sense of aloofness and detachment.  Doc thinks I will be a 6 month candidate, we will see.  Had the disease well before they knew what to call it, bloodwork back to 1994 detected high enzyeme levels.  Stopped drinking in 86 and stopped smoking in 1991, which I'm sure helped.

Anyway this is a one day, one treatment at a time thing for me as my days are filled with sleep an dmore sleep.

[cursed180]

It is so good to hear that so many people are wipeing this pesky viris out on there 2-3-and4th goes ,I have had 1 try and i will be trying again when telipravir is appruved in Australia next year 2012 and then hopefully i will have some good news to spread on hear as well thanks for your time and all of your great feedback.

[HDCoop]

Sorry to hear you have been feelling good, but good news on the viral drop.  Hope you get to feeling better.  I had to do long term disability my first 2 times, but this one hasn't hit me too bad yet.  

Hum, from the sound of you and coo19, I assume y'all are young.  I thought that it was mostly people my age with this disease.  Good news is for y'all though, is you couldn't have had it long, I pretty much tracked mine back to the stupid days in the 80's, so I'm in my 20+ yrs of it.

Anyway as they say, heads up, grin and bear it and we'll all get through this.