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.

[nygirl7]

There are plenty of folks on this forum on Inc and plenty who were in clinical trials long before it was approved. If you want to see good news look up my recent post on Andiamo on TV he is a long standing member who treated many times with no luck and did Inc back when it was called either Vx-950 or Telapravir and he now has SVR and some liver regression to boot.

No one can tell you if you will suffer severe side effects or not, many of the folks who dont have a very hard time do not come and post in here because well they dont think about it because they are doing ok.

Only time will tell.  Good luck.

[coo19]

Thanks nygirl7, I am very glad I found this forum. Have been looking through it all and signing up as a member. My insurance, the manufacturing companies and my doctor all offer support services but you know my thinking is they have never taken the medication all they have are studies to refer to and I would rather hear it "from the horses mouth" so to speak. Thanks

[Andiamo1]

It's a difficult treatment, but tolerable, for me at least.  I was anemic, but didn't have the rash.  I was nauseous while I was taking Incivik, but after  I stopped taking Incivik and it was just interferon and riba, the nausea disappeared.

I was not allowed procrit, so my anemia was difficult, but you can take procrit if you need it.  I hope you don't though (need it).
Best of luck to you.
Eric

[coo19]

Thanks for sharing. I do not know if I'd be able to take procrit. I have to very careful with any medications because I have epilepsy, the treatment for HVC could cause seizures since I have this disorder already so adding more medication would be dangerous. Anemia worries me mainly because I am almost anemic without any help from medication. When I was pregnant with my daughter I had anemia and everything I took to help made me sick. I greatly appreciate you responding, you are the only one who has taken the medications that has posted here and it does help having some idea what to expect. I guess once Friday comes I'll take the medications and post an update. Thanks again

[joemc34606]

Ive been on triple threat for 3 weeks now, the first shot was the worst, cold sweat, chills rough night. The rest of the time mostly just tired. But havent missed a day of work yet and still make it to the gym at night. I own an auto repair business in Florida and its extremely hot right now. Make sure you drink lots of water it definitely helps. The hardest part is eating the 20 grams of fat with eack incevik dose. I would start trying to drink a gallon of water a day and eat the 20 grams about a week before you start the medication.
Good luck, if you have any question just ask some one here will be glad to help you
Joe

[coo19]

Thanks Joe. It has really helped hearing from everyone on here. I start taking everything tomorrow morning so I will post and let you guys know how it goes. I hate drinking water but I guess I'll have to suck it up for this. Don't know why but I have never liked water so that will probably be harder for me to deal with. Thanks again and best of luck to you!
Rachel

[summer7799]

Hi, please let us know how you do with treatment. I have not started yet, and am so curious about what it will be like. Your about my age, I've heard being young makes it easier. Good luck!

[bab10]

I started the 3 meds last Friday.  I really did not have a tough time at all.  I took an aleve and a sleeping pill prior to my shot and I slept through the worst part.  I only woke up once with chills and another sweating, but fell right back to sleep.  I was okay on Saturday too.   I did not do anything, just hung out at home and took it easy.  Sunday I felt so good, I did some housework, laundry and cooking.  Monday I went to work.  I feel sick to my stomach especially in the AM.  Nothing I can not handle though - crackers, ginger ale etc..  I did notice if I eat something every couple of hours it seems to help it.  Best of luck to you!!!  

[SunShineGirlie]

I am starting it Tuesday of next week.  This is my second round of treatment (relapser) but 1st with triple therapy.  I do not care too much for my gastro's Hep Staff so that will be an issue I am sure. Good luck to us all!

[crossroadsec]

Congratulations! I'm on the same tx. Taking my 4th shot Friday night. I have good days and bad. Mostly good! Today I worked 9 hours. I'm parked in front of the computer waiting for that last med so I can sleep. Some symptoms are tolerable. Some can be really uncomfortable. I lay around at least one day a week. Do you have a support system at home? Thankfully, I live alone and can hole up when I need to. You'll find a system that works for you. And a TON of help on here. :) Karen

[HDCoop]

Good luck to all.  I just found out about the new treatment, saw my liver doctor today, did labs and waiting for them to come back.  I did the interferon and ribivirin twice and was in remission, but virus came back by 6mo checkup.   Found this forum looking for advice on the side effects.  I had a rough time the first go round, but the second round was better.  Hope to see some more posts and some good results from y'all.   Coop

[coo19]

Summer,

I will definately keep this updated as to how  I do with the treatment, I took my first dose of Incivek and Ribo this morning and will be taking the Pegasys this evening. From my understanding the younger you are the better you can handle the treatment but a lot depends on what damage is there and so on. Luckily I found out I had Hep C after only having it approximately 1 year. I know the time frame in which I got it because my brother has it and we started using drugs together, started with me doing only pills but eventually he convinced me to try shooting and although I had my own needle I believe at some point he used it or mixed his up with mine. The good news is that my liver is still healthy and I stopped all drug use in March 2010 and went back to school to get my BA in psychology fousing on substance and alcohol abuse. Found out about the hep c in Feb 2011. I have a daughter who will turn 4 October 20th and she is my first priority so I'm hoping I won't be too sick to handle taking care of her or to keep up with college but I am a stay at home mom and can relax when I can for the most part. My fiance' and my parents are very helpful and are very supportive so I am very lucky with that. I appreciate the support here, it's hard to make people who have never dealt with this understand so having others who know makes it's so much easier. Thank you and I will keep everyone updated on how it's going!
Rachel

[summer7799]

You are very lucky that u have been diagnosed within a year. I'm turning 34 next month and am pretty sure I contracted the virus when I was 17 or 18. So have probably had it about 16 years. But I was just diagnosed and stil waiting to see what genotype I have. Did u have a liver biopsy? I am a single mom with 2 boys. My oldest is 12 my youngest is 6. It's just us so I won't have much help during treatment. Plus I work full time as a hair stylist. So I'm praying I will do ok with treatment. It sounds like you will have a lot of help and support, that's great! How do you feel now? Please keep in touch! :)

[SunShineGirlie]

I am in absolute awe of those who can work while on treatment.  I did 48 weeks of interferon and ribavirin and suffered sever anemia early on, no way I could get out of bed let alone work.  I start the triple therapy on Tuesday.  I am scared ******** it won't work, again!!  I am a TT and genotype 1.  I cleared at week 16 last go round so I know I can achieve SVR, but can I keep it is the big question.  I picked up my meds on Friday and almost fell over when they told me the cost of these things, 19 grand for the Vertex drug and that is just for one month!!!  Thank God for insurance, and thank God for Vertex, they are picking up my co pay.  
God Bless us all and hope and pray we all beat this bug!

[Karenp1159]

Started 3x treatment on 7/22.  Was treated in 1999/2000 on dual therapy and, after initial response, at 6 mos. it failed.  Lots of concerns about how I'd feel as my memories of last time were intense.  To date, nothing terrible... I time the interferon shot for Friday night so I can spend Sat/Sun in bed sleeping if need be.  This week, I was feeling better by Sun mid day.  Haven't missed a day of work, although I feel exhausted and nauseous all the time.  My suggestion - don't read all the posts.  You WON'T likely have all the side effects.  And, as you may get them, deal with them one by one.  I just push through.  Not sure what may change if I get anemia, but not all do.  I do not (yet) have the rash.  Not only do I go to work, but I make sales calls, presentations, etc.  My assistant drives me, props me up and I do what I have to!  She calls it "Driving Miss Daisy."  I work full days (but it does take me a while to get going in the mornings so I go in late.)  Good Luck!

[coo19]

Well I started all the meds Friday, took the pegasys Friday night and Saturday felt like crapt! Migraine, fatigue, body aches, weakness, nausea but Sunday the aches went away. Overall the biggest issue I'm having is complete lack of energy and nausea. I haven't thrown up but could if I hung my head over the toilet. We will have to see how it goes, hate feeling like I want to sleep all the time but it could be worse.

Vertex also picked up the remainder of my co-pay for Incivek and I had to contact Patient Access Network for help with the Ribivarin and Pegasys which I was apprved for. It took 3 weeks of waiting and sending them more stuff every day but they got it in. I about fell over when they told me my co-pay after insurance was $1609 a month for everything and then when they told me the prices before my insurance I couldn't believe it, total of $28,000 a month! There should be laws against that I mean even with my insurance one month of these meds would have cost me 2 months rent! People dealing with any chronice illness shouldn't have to worry about how they are supposed to afford to treat it and survive!

Anyway, that's the latest update. Sorry I didn't update sooner I spent most of the weekend being VERY lazy and I'm fighting to get myself moving today.

[SunShineGirlie]

I am waiting for the Patient Access Network to approve me, how much do they pick up, the entire copay?  I totally agree with you about the cost of these meds, it is outrageous and some people cannot treat due to the cost involved.  I hope you are feeling better today, tomorrow at 1:00 I take my 1st shot of old friend interferon OYE!!!! lol

[SunShineGirlie]

It is awesome you are able to work, kudos to you!!!

[Karenp1159]

I know reactions vary for everyone - but I think if I didn't go to work and distract my mind, I'd be much more sick.  Today, nauseous and tired with symptoms of anemia setting in (breathlessness, heart pounding, extra nausea), I'm off to make an important presentation... I run my own business so I can't let go.  I have 5 employees whose livelihoods depend on me "making rain," and a landlord and other obligations that don't CARE if I feel "off."  But, by pushing, there are many times during the day when I totally forget the treatment!

[coo19]

If Patient Access approves you they give up to $7000 per year so it should cover your co-pays or at least most of them if they approve you for the full amount. I went round and round for 3 weeks having to keep calling them and never getting anywhere until a case worker at my insurance company finally got involved and within 20 minutes she had it approved and my meds were sent out via UPS the next day. If you are having trouble get hold of your insurance company, they all have case workers that are there only to help you in situations like this and can usually get it done a lot faster.

Last night out of no where the body aches, chills and flu symptoms all came back. Felt horrible but so far this morning I'm feeling okay, still very tired but I have a feeling I will be that way all the time until this is over with.

[SunShineGirlie]

well I was SUPPOSED to start triple treatment today, my gastro called and are delaying it until tomorrow - This place is nuts.  They are making me go to the office to take my first shot (I gave myself 48 last time but I guess that does not count) and they need 2 nurses to do this LOL One of the nurses called in sick today so I loose out.  Now I have to change my shot day to Wednesday after planning my entire treatment down day as Tuesday.  If that isn't enough to fry me they are actually charging me a office visit for this crapola.  They have made me jump through hoops to get this treatment started and have caused multiple delays.  I have zero confidence in this place and am looking to find a new treatment center.  Any suggestions about NC will be much appreciated.  I am so mad right now I could spit LOL

[pjhep80]

i start sept 9 just got the call from speciality drug co $10 copay for riba $40 copay for peg and $0 for incivek they waived the $60 copay...so only going to cost me 50 a month never thought i would say this but yea for us healthcare haha....good luck to everyone hope we can all clear....my dr and his staff are superb the whole process was incredibly simple for me hope tx is just as easy...and i hope it works

[ann61]

Good luck as you begin your journey.  We are all here for you.

As you can see everyone reacts differently.  I will take my 4th shot this Friday and I have been putting in 9 to 10 hours days at the offce.  I have good days and bad days but mostly good ones.  I strongly suggest you take your first shot with 2 advil.  Drink water like you've never done before.  You got to keep yourself hydrated and keep this stuff moving through your body.  I take my shot on Friday night and so far I have found that I Sundays are my couch days.  I really just feel the need to rest.  The first weekend was the toughest but each week has been better than the one before.

I guess other than the water and advil the best advice I can give you is take things one day at a time.  You can do this!

[coo19]

I live in KY so I can't tell you about any other treatment centers near you but I will say taht if my doctor pulled stunts like that I would hav e fit to. Sounds to me like they may be training someone and want to use you as the lab rat to show her/him how to do their job. This is my first time ever doing treatment and my doctor had a nurse spend 30 minutes with me so I could do my own injections. I would be so furious if I were you! Best of luck let me know what happens.