Cheatin

[Chriskid]

OK I’m fessin up.  I missed a Peg shot.  Felt lousy all last week and didn’t get the script filled.  Missed the Sun night shot got up this AM and said to myself, the hell with this I’m gonna skip one.

Over the past 20 weeks I’ve also skipped maybe 6 morning doses of Riba cuz a little voice in my head said “it’s OK to miss a dose now and then when you’re feeling bad”.  (Sorry Jim)

And I’m curious how many others here cheat and to what extent.  I wonder what percentage of us are 100% compliant through out the course of a year’s tx?   Given the 80/80 rules I would think many would find it easy to slack every once in a while and still feel relatively confident.  All though I realize the closer to 100% compliant you are the better your chances of SVR.

BTW my VL was 780,000 base and 450 at 12 wks, or a > 3 log drop.  I’m having blood work done again middle of this week.

So let’s hear from the cheaters, so I won’t feel so guilty.  Non-cheaters please chime in as well.

[RobBetz]

I guess you like playing with your chances of living or dying....I am 100% compliant with meds and even up the riba every other day and double dose on a few shots.....full compliance gives you the best shot at SVR.....we all have choices to make in life.....

--robert

[Dale_Ray]

You don't need to feel guilty one way or the other sounds like your getting good results doing it the way you are. I'm 13 weeks into tx and have been 100% compliant, I think, but I don't remember so well anymore. PS my wife shoves them down my throat because she doesn't trust me to remember ha! Your results sound so great I hope all goes well for you. Dale

[bobbyullc]

SORRY ABOUT THE SIDES. MINE HAVE GOTTEN WORSE THE LAST 3 WEEKS AND I AM WONDERING IF I WILL TREAT TO 48 OR STOP AT 41-42? NOW AT 25 AND I WANT TO ENJOY THE SUMMER. 80% RULE. I HAVE NEVER MISSED A DOSE OF EITHER AND I FEEL IT IS A SLIPPERY SLOPE. IF I MISS ONE NOW WHY NOT TOMMORROW? I HOPE YOU BITE THE BULLET
(DO NOT LET IT EXPLODE IN YOUR MOUTH) AND BE AS COMPLIANT AS POSSIBLE. IF YOU TAKE HALF MEASURES AND IT DOES NOT WORK IT IS ALL FOR NAUGHT.
MEANWHILE THE BEST FIX FOR SIDES IS A SMILE AND A WALK.
BOBBY

[dyce]

Good morning all , what is the 80% rule? I've never heard of this before.
             Dyce

[Alady1620]

I have never missed a dose of my meds even if I was sick as a dog.  I'm in week 11 of treatment.

There is no way I want to go through treatment again so I am doing everything in my power to kill this virus first time around.

[NYgirl]

I am so paranoid about missing a shot that I accidentally did TWO of them the other night.

In order to achieve the goal they say you need to be 100% compliant with drug taking.

I worry that if I dont take them exactly on time and end up at week 24 with just a few left...that all this would have been for nothing.

I think if you intend to do treatment you have to do it right. Hopefully you haven't messed up your chances - a week without the Interferon killing the virus doesn't sound like a good thing to me.

I hate the sides too but hate the fact of all the things this virus can do to me even more.

[GoofyDad]

I'd be surprised to learn that I'd missd a dose. Maybe a riba dose, but not that I'm aware of.

I don't think that missing a few ribas here in there is a big thing, though I try to avoid it. Missing a whole weeks worth of Interferon is a bigger deal, I would imagine. I'd play catch-up now, Chris.

As I understand the 80/80/80 rule, it was a compilation of data that says patients hwo take at least 80 of their dose, at least 80% on-time, and complete 80% of the prescribed course fare quite a bit better than the treating population at large. But most of that can be attributed to the 80/80/80 group not  including early drops and non-responders. So it's not a ticket to skip your meds.

I don't worry about timing so much. Hope I'm right about that. I let Riba and INF doses swing an hour or two each way. But I do take the riba with a decent amount of food and fat.

Last few days, as I mentioned, riba along with everything else has been running through me like water through a hose. Definite problem short-term, hopefully less of an issue long term.

[beamishboy]

full compliance here; week and shot 16 today..i take 1 xtra riba day of shot..i can certainly understand your missing doses-this is self-inflicted poisoning,rather difficult chokin down the riba sum days,but hang in there& give it your best "shot"

[Moniker]

The doctor cut my Peg dose the first 15 weeks, and had me skip the shot on week 7. The miracle is I was undetectable at week 12, and also at week 24. Now, I'm coming up on week 33. I've taken 100% of Peg since week 16 - Neupogen raised my WBC so that I could take the full dose.

One time, when I went to take my evening Riba, I saw that I had forgotten to take the morning dose; it was still there in the little pill tray. So I got up at 2 AM and took the missed dose, and then went back on normal schedule in the AM. I told my nurse what I'd done and she said I'd handled it in an appropriate way.

Bob

[lat36]

I read somewhere that those who adhere to the 80/80/80 rule can add another 15% on to their chances of SVR. I don't know if that's right, someone might clarify that, but I like the sound of any increase in odds.
If treatment doesn't work for me I'll have to accept it, but I'd  be happier if I knew I gave it my best shot. Don't skip any more, your next PCR could still be a good one.

[NYgirl]

I agree with Goof taking the Riba a few hours here or there off isn't that big a deal because it's so built up in our systems but the Int isn't - missing that causes me concern. Take it now Chris if you've gotten the script filled.

I always fill my scripts a week in advance just in case. Maybe if you had it there you probably WOULD have taken it you know?

Don't mess with your tx plan, please.


Beamer - I do the same thing I take an extra Riba on shot day. Don't ask me why but I do it too.  I try NOT to take the extra Interferon like I just did though.

PS a Good way to make sure you always take the Riba is get one of the little Daily cases that has an AM and PM slot. Then you can't forget really because it's right in your face.

[Chriskid]

Thanks for everyone’s input.

The biggest issue here for me may be the “starting down the la la road” to thinking slacking is ok from time to time.  Which, knowing myself, could end up being a bigger problem.

I’m actually only 12 or so hrs late on the shot and just picked up the script.  And since it appears I’m the only slacker here, well I’m gonna go jab myself.

Hang tough everyone.  Hope the plumbing get's fixed Goof.

[NYgirl]

YAY I am so glad that you are going to take your shot!

Believe me...you are preachin to the choir talking about getting lazy and slacking off.  I am the QUEEN of these type things let me tell you.

I am just SO GLAD you posted about it and then took the advice of all of the guys who posted. It's a great thing knowing that people REALLY have your best interest at heart...and the people here really do.

We are ALL in the same boat - and sometimes it's nice to let the others help row once in a while.  Especially for lazy AZZES like us :)

Great move Chris. So glad for you.  Whew!

[beamishboy]

boy to kid: i am soo glad yur takin the shot,now you r complyin!!!!! 2006 is the year to Clear...
nygirl:nice to know that great twisted,totally drug-addled minds think alike!!!! i am always impressed w/ your ability to "carry on" thru miserable sx,work situation& personal dramas(i got sum myself& it ain't so easy,esp. while trx& dealin w/ the reality of being hepc+).....what i'm trying to say is you are   source of inspiration,strength,support-Your courage is Contagious

[NYgirl]

Beamish thank you so much.  You know sometimes hearing something nice said to yourself means so much - today is one of those days where I just needed it.

Sometimes during this course of tx it gets so easy to say WHY am I doing this?

Then you see somebody else with the same brain drain doing the same thing you are and you go...OH must be some real logic behind this!

Stupid - oh yeah probably but on shot night I get a bit over geered and go ha die you mother suckers die!!!!!!!!  I think that you do to LOL.

Now in reality I KNOW it's not doing a darn thing most likely but...it just makes me feel like I'm doing all I can.

Thanks for helping to make me feel less like Super Geek - you have no idea how much your frienship has meant to me during this all.  I hope once we both SVR we can stay in here to help new people like the other "old timers".  I've found my new online friendships in some ways (understanding) has been much more important than my outside friends, something that I never knew could happen but man is such a great gift. And you are one of them.

Debby

[kespr]

I once saw a report found on Janis & Freinds stating that SVR rates are as follows

97% of peg & rib =66% svr
80 to <97%  = 62% svr
60 to <80%  = 57% svr
<60%  =33%

Also not missing any ribavirin during the first 12 weeks is most important

[friole]

It seems like you may need to get some help for those sides.  I think missing 6 riba doses is a lot and I would not do tht or miss a INF shot if possible.  Are you on any blood boosters?  That might help the tiredness.  Still you may need something for the nausea or whatever the other side effects are.

I only missed one riba dose and took an extra pill the next 3 days to catch it up.  My thinking is if 80% is okay, 100% is more better.  The 80% rule sounds like something my kids used to do in school --- settle for the "C"

[jmjm530]

I'm sure there's a lot of cheating (non-compliance) going on, but my guess is it's vastly under-represented in this obsessive lot :)

If I did forget to take a riba dose, I can't remember it, and that was more than made up the few times I wasn't sure and took extra to compensate.

Never missed a shot of Peg, which is more serious. I'd call your doctor -- or the Nurse on Charge Hotline -- and  there's a medical reason against, you should seriously consider taking your missed Peg shot later today or tomorrow.

Suck it up, if you can :) Good luck!

-- Jim

[cuteus]

any missed riba on my part was due to the fog, and I don't even know how many times that might have happened, but it feels like it did happen a lot at the begining of tx. Is that part of the reason I was still detected at wk 12? who knows? but it could not have helped. Missing a dose on purpose, is another thing.
Given that  the fog is aiding in forgetting your doses, you don't have to aid the fog by deliberately skipping them. I would consult with my GI and let him/her know how much I have missed and get their input and suggestions.  Once people decide to treat and have vested so much effort in the treatment, I can't see them deliberately jeopardizing it.
chris, ask your dr for intervention, if you are feeling so lousy, you want to skip doses, is better than sabotaging your svr, don't you think? ask your dr for help!

[Andy Capp]

Hey Kid,

That 80/80/80 rule seems to be commonly quoted in the US but in Europe it's scoffed at.  My feeling is take every shot and every pill.  I've recently finished the 48 week treatment and in the middle weeks had to write down when I took the pills because the brain fog got so bad.  I couldn't even entertain the thought of skipping the shots or pills; I'm an "all or nothing" kinda guy.

If you are intent on getting your liver healthy again, you've got to put your head down, clench your teeth, put one foot in front of the other, and take your shots and pills at the prescribed times.  I remember at times looking at the syringe or pills in my hand and saying "Do your job."

I don't want to give you the impression that it's easy but you can do it if you put your mind to it.

You can do it and we're all with you.

Robert

[mare52]

I have not ever really thought about not taking any of it. It is sooo expensive to my union insurance plan ($2,800.00 monthly for 6 months) "suggested retail" that I nearly choked when I saw the receipt!
So did you take the shot YET!?
(hope so too)
mare

[sunspot]

In the 48 wk of tx, I never missed a shot. Maybe 4 or 5 times I was a day late. Due to brain fox, I missed about a dozen Riba doses and then started using the AM PM pill cases.
I finished tx on 01-04-06 and tested ND on 01-06-06. My first PCR is April 1, no fooling.

Dana

[beamishboy]

great moniker-between the pool (billiard) hustling,pub crawlin&soccer mayhem i do hope yur finding time to layabout on the davenport berating the state of your wife's fimances & mother-n-laws lack of forbearance!!! or am i nostalgic for an England that is no more?presently reading travel book-Blue Latitudes,tony horowitz- about adventures of capt. cook & lord banks aboard HMS endeavor; i am now nostalgic for a Tahiti that was fantasy island of lanquid pleasures..

[Chriskid]

Yeah Mare I did the deed.  I think I was having a little psychological bump in the road coming off a bad week.  So I needed to confess my sins. Nice to have back up on these things.  

I’m  really amazed at how compliant everyone is, brainfog aside ;)

[can-do-man]

Doc wants me to have lab done today. Go to is office which is at the hospital, getting blood sucked out of me. Doc pokes his head in and hands me this paper and tells me he wants me to get a EKG before i leave. OK so i go to the place that does the EKG. Walk in office, look around nobody waiting, i think great. Walk up to the window sign in, just my name on pad. See gal setting in the back reading, she looks up sees me. So im standing there a good 5 minutes waiting.

Finally she gets up comes to window, see's i've signed in. I hand her the paper from my doc. She says "take a number" i again look around just me and her. I said your kidding? She barks "sir take a number" i look over and on the wall is the numbers, well i take a number which is number 1. She tells me to have a seat. Ok again look around me the only one there. So i set down. after watching 15 minutes pass by on the clock, i here her say "would number one come back here" I chuckle hang my number back up and walk inside.

She looks at me and said "wheres your number?" I said i hung it back up. She says "are you sure your number 1?" Well by then its not funny any more. I said look lady its just me and you here and i've been waiting 20 minutes. Give me a break. She gives mt the EKG. I get up tucking my shirt in and start to walk out, she says sir you need to get your number and bring it back to me. I looked at her and told her "you know where them numbers are, you want it you get it, Just don't ask me where you can stick it" On my way out i noticed a big stack of comment cards. Oh what fun i'll have as i did see her name on her tag.

[mikesimon]

Good for you. These people make my blood boil. You had to be thinking to yourself - this has got to be a joke. I have been in similar situations myself but nowadays I have that look that tells people I am a very serious consumer of health care and I know my way around this stuff so do not mess with me and generally they don't. I love your response can-do - yea I absolutely love it! Mike

[jmjm530]

That should be on 'Saturday Night Live'. Surrreal. Thank your lucky stars she didn't call number "2" instead. LOL.

[sunspot]

Have you ever been in a nearly empty Bank with lots of tellers and no-one in line? I've seen lots of folks walk through the maze of ropes to get to the front. I think some people run life on a script. I always look for the prettiest girl and head straight away to her.

[can-do-man]

Well if it wasn't that i felt like s*it and was wanting out of there, i would have "hid" number 1 and grabbed number 10 and just set there waiting.

[can-do-man]

LOL, yep been there done that. If this gal that was working in the EKG room, she would probally told me i would have to go through that maze and wait in line.

[can-do-man]

you said...If I don't post again you'll know they've just put me in the psych ward - but don't worry I'll be happy.
________________________________________________________________

Now you know why i want out of them hospitals ASAP. Cause i know their just waiting, trying to catch me.

[fishdoc]

Its too bad your male.  My rule: I am always nice until its time to not be nice anymore.  Then depending on the situation I either shift into b*tch minor, or go directly to b*tch major.  The latter is not a pretty site.  It is so unfortunate that nice so often doesn't cut it...I sincerely hope that the riba doesn't do anything to my gear ratio....

[wMich]

I haven't missed a dose here in 30 weeks and have not been tempted to "self-adjust" my Rx up or down. I take my Peg on Friday and 6 ribas a day. I'm told that consistency is one of the keys to success in this deal. The 80/80 notion baffles and scares the ka-rap out of me at the same time. I do know that people who are lucky enough to have doctors that treat sides aggressively are less likely to "cheat".    - Lee

[susan400]

I am 100% compliant with my daily 15mg Infergen, 8 Riba's a day and pretty much the Procrit.  I have discussed modification on the Procrit with the doctor before I do anything so I am Procrit compliant I would say.  We just had to adjust the Procrit dose a little bit.  I've been a non-responder on only partial responder, too many times to count so I am very rigid in sticking with the protocol.  I know that it's very difficult.  Some days I'm so depressed and so sick of being sick that I just want to quit.  But, then, somehow God helps me get through another day.

Susan

[GoofyDad]

I think in fact I'll make a sign with #1 on it and carry it around - just to make me happy. Who cares if they think I'm nuts.


I went in wearing just Saran Wrap last week. Lady says, "Clearly, I can see your nuts!"

[NYgirl]

Next time I go for my PCR (two weeks till next blood work) I will think of you.  I think in fact I'll make a sign with #1 on it and carry it around - just to make me happy. Who cares if they think I'm nuts.

Maybe I'll even do the CanCan for ya CanDo ;-)

If I don't post again you'll know they've just put me in the psych ward - but don't worry I'll be happy.

[painintheside]

Hi!
I have been compliant 110%. I thought I missed a riba dose the other day and took extra just incase. I only take 800 to begin with so I figured, better to be safe than sorry. I am in week 22 and am doing 48. I am terrified to miss a dose.

I personally feel that missing doses of anything is a big mistake. And trust me, I have had days that I wanted to chop off my head (1 of them being a shot day) but still did all my meds.

Best of luck to you!

Sincerely,
Dana

[NYgirl]

Holy cow that was the BEST one you've popped out in a while Goof.  I have to go outside and smoke now - the laugh was that good ;-)  

FishDoc wow you haven't started the Riba yet and are wondering? hahahaha kiss goodbye to Minor and say hello to Super - Major will just be some sort of common day around the house :)

Seriously though while at first the outburts were REALLY bad lately I've found them going away for some reason (23/48 or 60 LOL).  I don't know if I've gotten used to them or what but they don't seem as bad.  It's just like constant PMS and waiting to just SNAP but at least the snaps haven't been out of control lately. Maybe I've gotten used to the Riba at this point. Just let your family know IN ADVANCE it is a cause of the medication - make sure they really get that (although when they see you freaking out because someone said tomahto - like you want to kill them for it) they will see...and the episodes are REALLY that stupid. It's quite obvious.

But on another good note: it seems my sense of humor is getting sicker and sicker and that can't be a bad thing.  I think I'll still carry my number ONE sign because in order for the Saran Wrap to work I'd have to buy a bucket of Planets, extra salty.

hahahahhhhhhhhhaaaa