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.
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.
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
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.
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
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
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!
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!!!
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!
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
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
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!
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! :)
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!
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!
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.
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
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!
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.
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
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
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!
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.
I'm new here on this forum. I just called from the pharmacy that they are turning my scrips over to billing to get with my insurance company. I see a lot about Patient Access, what exactly is this? I went through treatments in 2003 & 2004-5, was sick as a dog for the first treatment, a shot each night. Second was a shot a week and I did better that time...hoping this one is bearable ;-) Anyone out there with health insurance through their work that has any input on how well the treatment was covered? I have a high deductible, pay 2500.00 out of pocket and the rest is all paid for, have reached my deductible, but worrying the ins co will play the games of meds not being covered.
I have Health Insurance and after everything they covered I would still have been paying out of pocket $1609.30 a month for all 3 medications. I am not sure what my deductible is on my plan but I can tell you that each insurance company classifies drugs into categories and depending on the "tier" the drug is in depends on what they will cover. The Incivek costs a total of about $20,000 per month, the Ribivarin around $4000 and the Pegasys around $2500 according to my insurance company. Needless to say with Incivek being a brand new drug it is one that the insurance companies are going to be more particular about covering. You can only find out what they will pay by contacting them but without insurance the 3 meds would run you around $27,000 a month.
Now with that said, obviously even after my insurance $1600 a month was out of my reach. Vertex, the comapny that makes Incivek, has their own prescription card program set up to help people cover the cost/co-pay so you can contact them and request that on Incivek only. Genentech, who makes Ribivarin and Pegasys does not have this type of program so they use non profit organizations like Patient Access Network to help people. You can go onto their website and fill out the application. They will review your application and request copies of your insurance card, paystubs, W2's and any other income verification you have. They will review that, verify your benefits and if you qualify will approve you for up to $7,000 in coverage for your ribivarin and pegasys. Once you are approved they will give you a prescription card. Just give that information to your pharmacy as well as your insurance and it will cover your cost. I have listed their website below as well as the phone number for Patient Access Network and Vertex so you can speak to them. I hope this helps and answers the questions you have, if you need anything else I will do my best to answer your questions since I have dealt with this already. Also if Patient Access Network can not approve you there are other organizations that may and Genentech can give you a list but they will refer you first to Patient Access. I also put Genentech's number below for you. As I also mentioned before if it takes too long getting answers your insuraance company provides case workers that are here for exactly these reasons and they may be able to help speed up the process. Vertex approved me the first phone call and gave me my co-pay card account information right then but Patient Access Network took me 3 weeks until my insurance company got involved.
I wanted to add that Patient Access Network is a free service and they are a nonprofit organization. They are there to help people like us and others going through high costs treatments for many different illnesses.
Yaaaay I am not alone! I started aug 3rd and have had only 2 shots so far and so far my biggest complaints are the headaches and joint pain... Oh and the fact that I gained 10 lbs the first week.... Anybody else have this problem?
Thanks for all the information. I will start the process and see what I can get done ahead of time. I hate dealing with health insurance companies, you pay for it and then when you need it, there is always something that they won't pay for. Again thanks!
Wow you gained weight? My first round of treatments, I lost 80lbs, it was the shot a night round, totally did me in.
I've already started drinking water, I quit drinking anything else a couple of months ago, not for the treatment..didn't know about the new treatment yet, just decided to quit drinking sodas and such. So I'm a little ahead of myself then the last 2 times. I know it was hard to even look at water for a while after drinking so much during the treatments.
Don't know yet, but my last doc that put me on the treatments said it was an oz of water per lb that you weighed. At that time I weighed 230lbs, so it 230ozs of water a day.
I was actually looking forward to the weight loss... I'm thinking the gain is due to a combo of the 60g of fat a day along with water retention seeing how I went from never drinking water to drinking a gallon a day...
Hey guys just catching up the conversations here. Took second shot Friday and felt like crapt all weekend but did manage to get up yesterday and do some cleaning. I have the rash but it's not horrible and using Aveeno body wash helps, I have sensitive skin anyway and even get rashes from certain detergents and perfumes so I figured I'd have this happen. Body aches and fatigue are the worst. I am eating the fat grams as instructed with the incivek and have still lost 4 lbs in 2 weeks. Drinking as much water as I can to. Saturday night threw up my dinner, first time I've had that happen so far. I have been queezy but was able to keep myself from puking until Saturday. I did drink a couple sodas that day and I think that had something to do with it. This is my first time doing treatment and I know I just got hep c some time between Feb 2010 and March 2010. Donated blood in feb 2011 and that's when I found out I was positive for HCV. Hoping the treatments will work first time around. Doc says I'll have to do the 48 weeks and I go in This coming Friday for my first follow up. I'm just trying to suck it up and get through this and the weight loss is a plus. Ever since I had my daughter in 2007 I've had trouble losing weight and before I was never a big person now I'm 60 pounds overweight and it drives me nuts. I know it's not how you should lose weight but if that's the one benefit I can get from these treatments then AWESOME! I just try to take it easy as much as I can, the fatigue makes it's hard to get anything done and to make my brain work. I have other health issues and suffer with pain every day so the added joint pain is horrible. It's hard to sleep with this rash but I'm using everything you can think of, Aveeno, benadryl, hydrocortisone. Will just have to cowgirl up and take it! I'd rather suffer now than wait until my liver is about done in and I'm about dead.
Just got the call from the nurse and she will be here at my house 7:30PM tomorrow night with my first month's supply, first shot tomorrow night :( :) Since I went through it twice back in early 2000's, I know what to look forward to and this first shot is going to be the hardest...bitter sweet ;-)
coo19 - stick in there, just keep thinking about the weight loss on the positive side ;-) That's what I did, first round I went from 240lbs down to 155lbs in about 3 months, but that was the shot every night round. It seems, from what I can remember, that the first 2 weeks or so was the worse. After a little bit, you get used to that poison in your body. On my second round, 1 shot/week, after a couple weeks or so, I was riding my motorcycle, nothing far and overnight, but some good day trips and around town. So it will get better and keep us posted. What is this fat grams that I've seen people refer to? Ah, guess I'll know about that this time tomorrow :)
I got really lucky, insurance denied it last week, but then came back this week and approved it and will pay 100% on my treatment :-)
Ok, last week at the lab I was 205lbs.....we'll see where I am in a month or two?
Did my first shot last night at 9PM, woke up feeling pretty good. Started my ribavirin and incivek this morning a 8AM. So far..so good ;-) I was worried about the fat grams until I found out what I had to eat, PB&J, ice cream, bagels and cream cheese, cheese, nuts...etc...I can handle those ;-)
Ate like a horse all day yesterday, had a big steak for lunch, a butt load of Jack in the Box tacos and some leftover birthday cake just because I know my eating habits are going to change a bit over the duration of the treatments.
CaughtOffGuard - That's great. I have to be honest, I still have not gotten rid of my tinnitis from my treatments in 2003 & 2004, not as bad, but it's still there.
Ok, some flu like symptoms, fatigue and aches all over, otherwise not too bad compared to my first 2 rounds ;-) Now, I'm afraid I won't loose any weight, not having much problems eating, especially the fat portions ;-)
Maybe the fact that I decided to give up everything except water a couple months ago, so I have been good hydrated.
Now that the first shot is over, it's all down hill ;-) I found that it's easier to say 23 or 47 left, seemed to work out better then "oh crap this is only the 2nd shot ;-0
on week 3 - feel like crapola all the time. chills, sweats, headache, tired, nausea, vomiting, raced heart beat, dizzy - and the list goes on. I am ok hemoglobin wise, it actually increased LOL go figure, but the additional drug is making me sicker than the 1st time I treated. It won't be an easy ride
Can I ask what dosages you are taking? I'd been through it twice and was expecting the worse after my first shot, kind of afraid they are not giving me right dosage on meds....really expected to get a lot sicker.
This sounds like a very high chance of kicking it. It'd be nice to kick it and not have to worry about the ones around you all the time.
Cool, same dosage I'm doing. Well tonight, in about 20 minutes, I do my 2nd shot, so I have my first week down. Today, I actually felt pretty good, we'll see how tomorrow is after my shot. After going through it twice and having severe side effects, it just doesn't seem right that I'm not feeling worse.....just hope it's a good sign ;-)
Hey! Sorry havent been on here in the last week I haven't been feeling so great. Week 3 and 4 were rough but since yesterday I've actually had some energy and the throwing up stopped thank god! Have managed to like tear in cleaning my house and stuff. OF course had to take my 5th shot this morning so we will see how I feel this weekend. Had my 2 week check up and go back today for my 4 week blood work. Doc gave me phengren and lortab to help with my symptoms but the phengren is giving me some sinus problems so I only take it when I need it. They gave me zofran to but I couldnt afford to fill it with the other stuff at the time, hoping to get it filled today. Feel like a walking pharmacy right now! I don't have to much time right now gotta get ready for my appointment but I'll make sure to update this. Thanks for checking on me and I hope you are doing okay!
Hi, I've been on TX for 8 weeks now and I am actually feeling a little better -I started out over 8 million PCR and went undetectable in 2 weeks! Sides made me feel really crappy and I've been drinking Kaopectate 3 times a day. I went for my 8 week tests yesterday so I am hoping I am still undetec when the results come back. Stay strong - we can all do this - it will be worth it... Be well - Fred
coo19, sorry that the past couple of weeks for bad for, just think though, it will only start to get better. Yeah, was starting to wonder, haven't seen any posts lately. Hope the other meds make you feel better. Good luck on your 4 week labs.
fredpacc, 2 weeks, that's great. Good luck on the 8 week labs, it'll be clear!
I haven't felt too bad, couple of bad days. Took my 3rd shot last night, got up this morning and have cleaned my house and feeling pretty good, really surprised. Really have to watch what I eat, something a little too spicy and I regret it for the next couple of days, thank goodness for Imodium and tucks ;-). Haven't weighed in yet, but my pants/belt are getting looser. Appetite is not too good, but having to do the 4 meals/snacks a day to take the meds, is getting easier.
I only missed one dosage of the incivek the first couple of days, but am on track now and have been on track every since. When I did my shot last night, I forgot to push the air out, called the on call nurse and she said it was not problem, just got a little more dosage.
This will be great to be virus free and not have to worry about the loved ones around me...my grandsons. That's been my biggest fear is infecting someone else. Know it's hard to do, but I've been trying to get my grandsons into fishing and with fishing is hooks and it's really easy to poke yourself with a hook, so I take extra precautions.
Well just got the call from my doc and my viral load is undetectable! YAY! That is the best news I've gotten in a long time and thank god I'm not going through all this for nothing. Took my 5th shot Friday and haven't been feeling too horrible so far. It seems to come and go as it wants to in general. Hope you are doing okay and feeling okay. Keep my posted!
That's awesome, I'm glad for you. Wow this is great seeing/hearing about the results they're having with this new treatment. I'm glad it's getting better for you, especially with the good news, that should make it even better knowing it's working.
I'll get my first viral test next Friday (fingers crossed). I'm doing ok, like you said, it comes and goes. I've only missed one day of work.
To everyone out there, keep posting your good news for everyone, it'll help to make it through the treatments.
Well I hope your test come back with some great news! It definately helps dealing with the side effects when you know the meds are working! This week hasn't been too bad, a little fatigued and having to force myself to get stuff done but other than that not horrible. Just took shot 6 this morning so we will see how this coming week goes. I've learned to take it one day at a time and try not to over plan things or have too many things scheduled in case I don't feel good. Sometimes that is hard since we only have one car and my fiance' works Monday through Friday. A lot of times I have to schedule 2 or 3 doc appts all in one day which can be very hectic for me especially when I have to pick him up at 4pm on those days. Please let me know how you visit to the doc went and if the meds are working for you to! I'll pray they are!
I haven't been on here in a while, haven't been feeling good... but it was great to read and catch up with you all!!!! I'm also on my 6th week and have a feeling that what I'm feeling is from a low blood count... I'll find out Tuesday... I had to stop working and had to call in help from my family/friends with my 4 year old daughter... but....
IT'S BEEN WORTH IT SO FAR!!!!!!!!!!!! Just got my 4 week results and went from viral load of over 69,000,000 to under 1,000 (822 to be exact!) Yaaaaay!!!!!!!
Thanks, I am keeping positive about it, hearing all the good news on here helps. I took my 4th short last night (Friday) and not feeling too bad this morning. I actually felt pretty good yesterday, took off work and got a lot of errands done. It's like you said, don't make any real plans..just in case. I told my boss if I woke up Fri feeling good I was going to take off so I could have one good day off to get some stuff done. I bet it can get hectic with your schedule and one car. Luckily (unluckily ;-) ) I'm divorced and don't have any conflicts. My daughters live close so they are around to help me if needed. Thanks for the prayers and I'll return the favor as to keeping your count negative.
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.
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.
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.
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.
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
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!!!
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!
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!
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.
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!
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.
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.
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!
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!
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.
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.
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.
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.
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.
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
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.
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.
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