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husband starting incivek, pegasys & ribavirin tonight

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Posted 3/23/2012 10:25 AM (GMT 0)
I'm usually on the chronic pain forum for myself but today I am asking for any suggestions, past experiences or just words of encouragement for my husband while he is going through treatment with these three drugs. We have been through a class & read the information but I thought I'd ask here for some first hand information from the hep crowd.

Any suggestions for high fat foods (20g fat needs to be taken 30min prior to taking incivek 3xday). How did you manage the side effects or what were your side effects of the drugs? Were you able to work ( my husband is a maintenance man so has a very physical job). Just any suggestions in general while we are going through this. We do have a very good support system with his doctor and the incivek manufacturer.

Thanks in advance for any ideas you can come up with!

Jag
Posted 3/23/2012 1:21 PM (GMT 0)
BSjaguar, welcome to the hepatitis forum. First of all, the new treatment has a 70-90% siccess rate. However, word is that this treatment is VERY rough and difficult to get through. Everyone is different, but I doubt your hubby will be able to work, especially during the first 12 wks. when the Incivek is taken. Is he genotype 1a? If so, he has a great chance of eradicating the virus.

High fat foods include avocados, ice cream, butter (not spread), peanut butter, macaroni and cheese.

Best of luck to your hubby. Please let us know how he does on treatment.

Hugs,
Connie
Posted 3/23/2012 3:06 PM (GMT 0)
Hi Jag,

We have some posters who have had success/lack of success with the new protocol. I am sure they will post in when they read you are new to the Hep HW forum.

My partner did the old 2 drug treatment and he was the "side effect" king.

Sleeplessness, low platelets, depression, irritability, uncontrolled rages, weight loss, lots of vomiting or dry heaves, nose bleeds. And following treatment he did not clear and has had chronic pancreatis and impotence...maybe from the still raging Hep C, not sure.

He had a transplant almost a year ago and is doing well. But still has Hep C. He is reluctant to consider the 3 drug program because of his experience with the Interferon. When they have a protocol without the Interferon, he'll go for that and deal with whatever sides that one has. Our center is not pushing treatement until or unless his liver functions get bad again.

It is a hard decision about treating, but if he has never been treated before, has 1a, and is generally a good sport about things, he could be in the high number of folks who clear the virus and that would stop the process that destroys the liver.

He is of course, drug and alcohol free, right?

My advise, get the BIG bottle of anti depressants and make sure he uses them before that side effect kicks in. My partner was too crazy by the time he needed the pills that he wouldn't ask for them. He took the small dose the prescribed, but never asked for the Elephant pills...which one of us needed to take, for sure!

Listen to your doc...if you are confident in his care, go for it.

Carol
Posted 3/23/2012 6:23 PM (GMT 0)
Connie & Carol, thanks for the replies. He did get FMLA paperwork started for work but if he is off long term he does have disability insurance. His doctor said that 20% of his patients were unable to work so we'll wait and see. Yes, he will be alcohol & drug free, we are taking this very seriously. It is a one time shot. Once you start & stop the incivek you can never try it again.

Not sure of his genotype but will ask him when he gets home from work. I know that he wasn't a candidate for the 2 drug treatment. So far he hasn't had any real symptoms from the hep c but his numbers were starting to rise at the last doctors visit.

I feel sorry for people without insurance. The incivek alone costs $46,000 for the treatment period. Crazy huh?

He was supposed to have started the treatment 3 wks ago but we had a trip to Florida planned and the doctor didn't want him gone, at least during the 1st four wks so it was postponed until today.
Posted 3/23/2012 7:53 PM (GMT 0)
hi jag, i am starting my 10th week of 3 drug combo. yes you are going to endure side effects. your going to feel the flu like syndrome similar to what you feel on 2 drug tx, plus hemmoroids from the incivek. after 3 weeks my virus was gone. you then feel somewhat better because your energy picks up(no hepc fatigue). please go into this with a open mind. everybody feels different side effects. the drugs are very effective and for me it is soooooooo worth it. might as well do it now, for their is nothing significantly better out there in trials. just more different types of in hibitors.   good luck and aim between the eyes,  barry
Posted 3/25/2012 8:16 PM (GMT 0)

I just finished the 12 weeks of Incivic.

My viral load went from 1.9 million to 'nondetectable' after 3 weeks!

It's been zero ever since, so I guess it's working....really well.

I wish you and your husband the best of luck and health.

For my fat:

Morning 7am - 2 cups of Greek God Strawberry & Honey yogurt. (23 grams fat)

Lunch 3pm - Basically 1 small  order of fries has @ 20 gr fat.

              I tried to eat lunch at 3pm, so I could have fried food, cheese, pizza, ect.

Late 11pm - 1/2 cup Hagen Daz Butter Pecan. (22 grams of fat!)

Those 12 weeks were hard. I was Extremly fatigued and tired. In a fog. I slept

about 15 hours a day. Had to. Almost narcaleptic. My hemoglobin went from

13.4 to 9!

My skin was super dry and itchy.

It's not really painful at all. Just super sleepy.

I am still on the Ribaviron and Pegintron.

I just did my 16th injection of Pegintron Friday night. Only 8 more to go!!!

:)    (I'll post how the side effects are going later this evening.)

Anyway, now that I've finished my Incivik, It's difficult to sleep and now I feel the body aches and mind confusion. I almost long for those sleepy foggy times! :)

I'll post later.

Best of luck!!!

Posted 3/25/2012 8:22 PM (GMT 0)
Oh yeah, you asked about working...
During the Incivik I found mornings to be best. I was most awake from 6am-2pm, then down for a mandatory nap.
I went to the office during this time, but no real physical work.
By sleepy, I mean lethargic. After 3 or 4 weeks I got tired walking from my room to the kitchen. Dog walks were out of the question.
Luckily, Incivik is done, and doggy gets to go to the park! It does get better.
Posted 3/25/2012 11:49 PM (GMT 0)
2DoIt, welcome to the forum. Thanks so much for posting about your experience with Incivek. Congrats on clearing the virus! Do you notice more energy now? Hep C has me very fatigued and sleeping a lot, for several years.

Please keep us posted on your progress!

Thanks!

Hugs,
Connie
Posted 3/26/2012 10:40 AM (GMT 0)
My husband is starting day three of the 3 drug regimen. Over the weekend he was very fatigued, running fever & was cold. Only slight nausea and not for long periods of time. He left for work this morning but we will see if he makes it all day. He works as a maintenance man in a warehouse environment so his job is physical. He is to call his docs office today to discuss how he is doing & get orders for blood work.

That's funny you ate Hagen Daz for night time fat. I got hubby ice cream drum sticks with 20 grams fat. For breakfast it is bagel with real butter loaded with cream cheese or toast with real butter loaded with peanut butter. The bread we use is whole grain but has 2.5g fat per slice so that helps too.

He said that he feels like when the hepc symptoms first started only he is not yellow. He said he got so tired he had to crawl to the bathroom from the bed and back.

He also finds mornings to be the best. By late afternoon he starts feeling poorly again.

Thanks for the info 2DoIt & PPM guy!
Posted 3/26/2012 2:20 PM (GMT 0)
I'm wondering if the side effects diminish over time or increase?

Hugs,
Connie
Posted 3/26/2012 8:32 PM (GMT 0)
The length and severity of side effects are different for everyone.
Posted 3/26/2012 9:01 PM (GMT 0)
Thanks, Hepmom.

Hugs,
Connie
Posted 3/27/2012 5:28 PM (GMT 0)
Jag,

I started having trouble remembering if I took my Ribaviron or not.

My hubby got me a weekly pill box, you know: M T W TH F etc.

My dose is 2 pills in AM & 2 in PM. Every week on the day I do my Pegintron

injection, BEFORE I do it, I refill my pill box-4pills per day.

That way if I forget, I just look in my day and count the pills left. This have saved me numerous times from double dosing.

Memorey gets tricky. Sometimes I'll be standing in the kitchen, making my coffee, look at my pills, and realize it's still 10 minutes before my time. "I'll take them when the water boils"...only to make my coffe and walk away...then it's 20 minutes later and I honestly can not remember if I took them or not!!! Sometimes I did forget, sometimes not. And evening is the same.

Even though I have my phone alarm set for each pill, time and injection I forget.

My alarm will go off and I'll think, "I'll just finish this article, or email, whatever...

then it's an hour later and I can't remember. Again, the calendar pill box saves me again.

Incivic is easier, as it comes in your daily foil of 6 pills. If you forget, you just look and your daily packet and count. Plus, the whole process of thinking what fat to eat, making it, then actually eating it makes you remember. Plus your full.

My Incivik times were 7am, 3pm and 11pm. 11pm was a killer. A few weeks into it I was so tired I almost could not get up to eat and take my dose. My alarm would go off and I'd hear it and think there is no way I can get up and eat. 7-12 weeks were almost impossible to wake up.

My husband started brining me Ice Cream and pills at 11pm, wake me up and wait till I started to eat. He know I'd just go back to sleep if I didn't.

Once I finished my 12 weeks of Incivik, my mind started to clear of the 'fog' almost the next day. 3 weeks after stopping, I hardly need a nap at all. Infact, I now have a hard time sleeping, even though I'm fatigued and sleepy. Go figure.

On a side note, my husband did the Interfuron and Riba treatment last winter. (No Incivik.) He's Hep C Free for 11 months now!

He was so crampy and achy he could not sleep after a month. He moved into the guest room about 5 weeks into it, but continued to work almost the whole time, with a few days off here and there.

I'm 15 1/2 weeks into it, and just started 'sleeping' in the guest room because I wake often and toss and turn. The mind starts to think and I just lay awake. If your hubby moves onto the couch or guest room, it's not personal.

I still have great days and bad days, but most are just kinda ok achy days, with some not-normal thinking. What's interesting is I know it's not normal and start thinking about that. Hmmm. At least I know it's temporary. tongue

Tonight I start my new injection Med called Epogen. It's supposed to increase my bone marrow funtion to make red blood cells and help my anemia. (?)

I'll let you know how that goes. Weeeee...

A few last thoughts before I go the the office for my obligitory hour or two:

I'm freezing all the time.

My eyes/vision get all buggy. Puffy. Blurred vision and color bursts. But it usually only lasts for an hour or so. Believe it or not, my doctor told me to have a double shot of espresso when this happens. And ya know what? IT WORKS!

She said it's probably migrain bursts from the medication, but I don't always have a headache when it happens.

Side note on weight loss or gain:

I am normally about 132 lbs.

I lost 10 lbs the 2 months before I started my treatment from the fear and stress.

Since I started, I've only lost 3 lbs in 15 1/2 weeks. Not bad considering all that fat intake!

Hang in there! In 10 minutes, things will be different. turn

Posted 3/27/2012 5:35 PM (GMT 0)
Connie-Thank you for the welcome.
You asked if the fatigue gets better.
Kinda. Comes & goes, but that Incivik fog goes away pretty quick once you get off it.

Then there's the 'other side effects'. Some days are worse some are actually great.
I know I won't feel 'normal' untill a few weeks after I stop all treatment, but that's just fine with me.
Posted 3/27/2012 5:51 PM (GMT 0)
2DoIt, thanks so much for your input.

Hugs,
Connie
Posted 3/27/2012 9:59 PM (GMT 0)
I am on my second week of treatment and have little to no side effects. This is the third time on a study; the first two times I cleared the Hep easily, but within 12 months it was back. Both other times I also had few to no side effects. My doctor even told me that he suspected that I was not taking the meds, but my bloodwork proved I was. I was told that I was part of about 5% of patients who were fortunate enough to not have had any side effects, but this treatment would be different. He was wrong. I was even running the day after my first injection. My mood has not changed at all - I'm as happy and whacky as usual. I do admit to feeling a tiny bit more tired than usual, a little bit less energy, but on a scale of 1 to 10, it might only be a 2. I cannot complain. I understand that some people get side effects as time goes on, maybe that will be my case. Who knows, but I am staying hyper positive.

The problem I do have however, is eating as much fat as I am supposed to three times a day, and eating in the morning. I think the easiest thing is 2 slices of bacon, for me anyway. 2 tablespoons of olive oil - 3 tablespoons of peanut butter - Greek yougurt - macadamia nuts (any nuts really, but macadamias are very high in fat content) - 1.5 ounces of the softest cheese you can find (brie, camembert, etc.) - 4 tablespoons of cream cheese - a cheeseburger... There are plenty of foods, it's all just stuff I am not used to eating and not enjoying at all.

I hope that your husband is one of the fortunate few!

Is there anyone else out there who has no or very slight side effects or knows of anyone else with so few?

Post Edited (Blueyz) : 3/27/2012 7:27:06 PM (GMT-6)

Posted 3/28/2012 10:23 AM (GMT 0)
We got a pill box with 4 compartment for times of day before he started but thanks for the info. That's strange you mentioned being cold, DoIt. My husband is usually warm blooded but when he said he was cold I new he didn't feel well. I use bags filled with rice that you can place in the microwave for back & neck pain so I heated them both up and put them right beside my husband with a blanket and this warmed him right up. He hasn't complained about being cold for a couple of days so I think it may have been from the injection. After his injection Friday night his fatigue & fever with chills has diminished. We think these side effects are more from the shot so his weekends will be bad for awhile. He's still in the first week of treatment so time will tell.

Now the nausea is starting but not so bad that he vomits but he feels like he could. Got some anti-nausea pills so we'll see if they help. Sent some to work with him today. So far he is still working a very physical job.

Blueyz, I have a feeling that you may be the only one without side effects. Very lucky! You sound alot like me. I had to go on methotrexate for polymyalgia rheumatica and this drug lists zillions of side effects also but I never got one. I felt very blessed.

Keep any info coming or if you have questions bring those too! My husband is reading this everyday also and I think it helps to know that he isn't alone in this. He's not much of a typist or he would probably jump in.
Posted 3/28/2012 3:38 PM (GMT 0)
Thank you Jag, indeed I feel VERY fortunate! I would love to know what it is that is keeping me well though, a few more questions for my gastroenterologist will be in order next week - he told me that there was no way I'd be bouncing off the walls (as I usally do) when he sees me next, so won't he be surprised? turn Can't wait for the results of my bloodwork. May I ask, was your husband A-symptomatic (with the HCV)? I wonder if that is one of the reasons that I am not feeling the effects? I know my enzymes were very high, however there was no problem with the liver at all, as per the ultra-sound. I have asked questions, but I don't seem to be getting very precise answers. The doctors don't seem to have them.

As for the nausea, I did have a slight amount in the very beginning and found that Gingerale worked very well (versus Gravol, that tends to make a person sleepy). Ginger (in any form) helps a lot, so your hubby might wanna give that a try, especially if the anti-nausea is causing drowsiness.

Chin up and try to stay as positive as possible. In the long run, it is a short period of nasty, for a life time HCV-free!! My thoughts are with you both!!

Karen
Posted 3/28/2012 5:37 PM (GMT 0)
Bluezy, welcome to the forum! You are all pioneers on the 3-drug treatment. If I can ever get past transplant related complications, I want to start the treatment. You guys will help show the way.

Hugs and best of luck!

Hugs,
Connie
Posted 3/28/2012 7:15 PM (GMT 0)
hi everyone, if i can throw my 2 cents in here about side effects getting better or worse as tx goes forward. i have been reading other forums and this one. and i would say it is a consensus  that gastrointestinal problems, diarrhea, nausea and the old butt burner get better after the 1st month. however, anemia, cog fog, and sleeping 10 hours a day(lethargy) get progressively worse. just my opinion, after the 1st month the tx is quite tolerable. i have advanced ms and i am still functioning rather well. ps.  sleeping 10 hrs a day plus naps can be a good way to endure 6 mos of tx.     be well,   barry

 

Posted 3/28/2012 7:45 PM (GMT 0)
Thank you for the warm Welcome Connie. It is quite interesting to read how other people are handeling what I am not experiencing. I am still quite perplexed as to why I am not experiencing the same sides - I'm not complaining mind you.

I certainly hope you will be taking the same journey as we all are one day soon, and that your system deals with the meds the same way mine is.

Cheers!

Karen
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