POZ Community Forums
Main Forums => Living With HIV => Topic started by: Alan_B on February 07, 2013, 02:05:34 pm
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Righto folks,
I've been doing abit of reading into this but just wanted some opinions.
I'm currently on Truvada, Norvir and Prezista which I have to take with food (dinner sized portion), otherwise the contents of my stomach etc decide to make a quick bid for freedom. Fair enough.
Problem is I am regularly missing doses of my meds due to my slightly hectic lifestyle. I live in one house 4 days a week and spend the other days between 2 other houses. Don't ask. I do not have a fixed time for dinner etc from Fri - Sunday. Basically to cut a long story short I am missing at lease 1 dose per week, and on one occasion 4 doses in a row.
When I am at my own house it is easy to remember to take them, they sit on my coffee table so I cannot miss them. I have stashes all over the place yet I find it a complete struggle to remember to take them when I am not in my own house. I have remembered before at bed time, but then refuse to take them because they wreck me on anything other than a full stomach. Being in my own house for more time isn't practical at the moment.
Is this often enough to give the potential for resistance?
How does everyone else cope with it?
I was previously on Atripla which I never missed a dose of bar once on purpose. Going back to Arripla definitely would improve my conformance, but I'd be a shadow of my current self.
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OH Dear , it sounds like what your doing is a case study in what not do in order to avoid resistance issues . You simply must take your meds consistently with at least 95 % adherence or you are in danger of running into problems .
I once stopped my meds for about 6 months and once stopped a med to try another combo only to come back to Atripla without harm . The reason this didn't mess things up was I stopped and then restarted , not a weekly hit and miss . I'm not suggesting drug holidays are are a good thing either just in case you are wondering .
Its may be a tough pill to swallow but you need to face the facts and find a way to take your meds consistently no matter what combo you settle on . Best of luck .
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When I am at my own house it is easy to remember to take them, they sit on my coffee table so I cannot miss them. I have stashes all over the place yet I find it a complete struggle to remember to take them when I am not in my own house. I have remembered before at bed time, but then refuse to take them because they wreck me on anything other than a full stomach. Being in my own house for more time isn't practical at the moment.
Up to you to decide to include adherence in your hectic schedule, or pay the price.
If you have a smart phone, you can put it on alarm for approximately dinner time. Even if your dinner time changes, it will be a reminder to take them, when in fact you eat.
Think up other tricks that will push you to remember to take them when you are eating.
Call me skeptical. Missing 4 doses that one time, that seems more than forgetfulness. Seems rather on purpose, or purposefully careless at least.
What little reminders can you come up with for the second house, to take the pills at dinner time? What about something really simple. A little card that you keep in your pocket, a fresh one each week, and you tick off each dose each day. If its always in your pocket, I bet you won't forget why its there.
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Most of us LTS simply cope with it by taking our meds. Many of us were on meds that required that we take them every 4 hours and did so in order to live. I think there's a different dynamic at play here that needs addressed.
You've identified the problem, now personalize it and then resolve it.
Best of luck
Wolfie
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Ok,
On the 95% adherence, that is old. Good but old, and from a prison study. << which begs the question, why didn't people take all their meds in the study for they were supervised? It's probably 90% for this combination (for most people) which is 1 in 10 days missed.
Late, well this combo, thanks to the fabulous pharmokinetics of boosted Prezista, has a very wide margin or error, erm, or lateness as it is usually known. Maybe within +36 hours of the previous dose is good enough.
So, 1 x day sometime will work if you take the meds 9 in 10 days. If things are going to get hectic take it early. Is lunchtime ever so hectic and impossible that there isn't a 6 hour window for meds? Even if some days lunch becomes breakfast this works?
With a snack bar or sommat, or even a cappuccino.
Is that impossible?
Also, dour note, life is to be enjoyed, but it is enjoyed less with a demanding combination necessary to overcome resistance.
The proof of adequate adherence is a consistently suppressed viral load ("undetectable"), but beware of sharpening up your med taking prior to getting bloods done and therefore deceiving yourself.
- matt
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I know you don't want to be psycho-analyzed, and certainly not by people who aren't even on meds yet, but I was also curious whether something subconscious could be going on. Just curious. Please don't take offense. I know life is hectic, though.
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suggestions:
1) take with dinner every night. this solves the memory issue and the food/stomach issue
2) buy a keychain fob and have a dose with you whether you are at home at dinnertime or away.
(http://i918.photobucket.com/albums/ad21/leathermanmikie/am_photos/pillfob.jpg)
like wolfter, I remember having to set alarm clock(s) to ensure that I took 4 AZT pills every 4 hrs, 24 hrs day. That schedule meant having to get up twice during a night and taking two breaks at work during the day to take meds - all in an effort not to die.
Taking 3 pills (reyetaz/truvada/norvir for me) at dinner every night just isn't that much a big deal. ;) I'm sure if you make some plans (carry a dose with you, remember it's with dinner every night) you can get back to 100% adherence. Believe me, you sure don't want to deal with resistance (because that means losing a regimen along with it going ineffective and you losing some health before the resistance is noticed) nor with the eventual outcome of not treating HIV.
best wishes on making a new plan and sticking with it to get back on track with taking your meds regularly ;)
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great advice from some of the best of the best here.
hope you find a way to TAKE YOUR PILLS! (sorry for yelling, it's the mother in me that comes to the surface every now and again)
there is a wonderful group of people here that care.
the solution is always up to you. :)
hang in and try to put some thought into what will work for you.
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1. Get an alarm watch. I have mine beep at the beginning of the window and at the end of the window. Cheap, effective, easy.
2. Set a daily alarm on your phone for the same window.
3. Get a little container -- I use a Tic-Tac candy container -- and stick several days worth of meds in there and keep it in the car.
These little tricks work for me. Good luck!
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I'm on the same 3 meds. I've been taking this combo for a few months. A while back I was having stomach problems with meds and found that if I took it at bedtime I was okay. I also don't have to have a full meal with it. Just a snack is fine. I haven't missed a dose I don't think in a year, I've just taken it a few hours later on occasion because I had gone out for the night. The only problem I have is occasional insomnia.
My advice to you is to grow up and stop acting like a baby, it's not that hard to take your meds and if you've eaten your regular meals you should be fine with just a snack when you do take them. There is no excuse for not taking them, you should be grateful that you have access to them.
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suggestions:
1) take with dinner every night. this solves the memory issue and the food/stomach issue
2) buy a keychain fob and have a dose with you whether you are at home at dinnertime or away.
(http://i918.photobucket.com/albums/ad21/leathermanmikie/am_photos/pillfob.jpg)
like wolfter, I remember having to set alarm clock(s) to ensure that I took 4 AZT pills every 4 hrs, 24 hrs day. That schedule meant having to get up twice during a night and taking two breaks at work during the day to take meds - all in an effort not to die.
Taking 3 pills (reyetaz/truvada/norvir for me) at dinner every night just isn't that much a big deal. ;) I'm sure if you make some plans (carry a dose with you, remember it's with dinner every night) you can get back to 100% adherence. Believe me, you sure don't want to deal with resistance (because that means losing a regimen along with it going ineffective and you losing some health before the resistance is noticed) nor with the eventual outcome of not treating HIV.
best wishes on making a new plan and sticking with it to get back on track with taking your meds regularly ;)
I have the same key chain and it makes life much easier... Well mine is red. I am on complera so I keep three in that keychain as in a pinch I will always have 72 hours with me and that should get me by if I am stuck somewhere.
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My advice to you is to grow up and stop acting like a baby, it's not that hard to take your meds and if you've eaten your regular meals you should be fine with just a snack when you do take them. There is no excuse for not taking them, you should be grateful that you have access to them.
brush away all our pretty words, and this is the best advice ;)
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I like that keychain fob, very nice. I'll keep my eyes open for one.
At this point, I keep all of my belongings but one in one bag, so I have my whole month's supply in there.
OP: I take the pill at the same general time whether I'm eating or not - usually not. My standard way now is empt stomach, and I don't have any issues, though two of my drugs are different than yours. You said you get stomach problems if you don't eat? Do the more knowledgable people here know if that goes away? Maybe if you just took it anyway you would eventually stop having the stomach issue? Or is that bad for some reason?
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You're supposed to take Stribild with food, but i'm sure you know that? I got a keychain thing on buy.com for three cents! id look on there. they also sell them at most pharmacies i think, in the past month alone mine has been a life saver!
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I know I'm *supposed* to take it with food. :) I actually didn't think about it until you told me in another thread a while back, so thanks! I figure it's better to take it with no food than not take it at all. I hope. Gulp.
I keep mine in one of those weekly pill boxes, but it takes a lot of space. I think I'm going to put 7 plastic pill bags (someone gave me a bunch, so I might as well use them) in my bag instead, but it would be great to have the fob with an emergency dose. You know, if I'm kidnapped by aliens or whatever. ;) Mail is tricky, but I'll check out the pharmacy impulse buy section when I'm there next. They usually have that kind of stuff.
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to find out the manufacturer's complete information (% of side effects, dosage instructions, etc) all one has to do is google the name of the med plus the words "package insert". Many meds require food so that the proper amount of med is absorbed into your system.
I take the pill at the same general time whether I'm eating or not - usually not. My standard way now is empt stomach, and I don't have any issues,
According to the PI for Stribild this med needs to be taken with food. If you don't eat with Stribild you are not getting the right amount of med into your system.
Effect of Food on Oral Absorption
Relative to fasting conditions, the administration of single dose STRIBILD with a light
meal (~373 kcal, 20% fat) increased the mean systemic exposure of elvitegravir and
tenofovir by 34% and 24%, respectively. The alterations in mean systemic exposures of
cobicistat and emtricitabine were not clinically significant.
Relative to fasting conditions, the administration of single dose STRIBILD with a high fat
meal (~ 800 kcal, 50% fat) increased the mean systemic exposure of elvitegravir and
tenofovir by 87% and 23%, respectively. The alterations in mean systemic exposures of
cobicistat and emtricitabine were not clinically significant.
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/203100s000lbl.pdf
as to the OP's meds, "Prezista, combined with Norvir, should be taken with food. The type and amount of food is not important. In other words, Prezista/Norvir can be taken with a full meal or a light snack."
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but I'll check out the pharmacy impulse buy section when I'm there next.
many walmarts carry them for <$3
http://www.walmart.com/ip/Ezy-Dose-Pill-Fob-Keychain-1-ct/10318661
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many walmarts carry them for <$3
http://www.walmart.com/ip/Ezy-Dose-Pill-Fob-Keychain-1-ct/10318661
Thanks! You probably mean this as general advice for everyone, not just me. No Wal-Marts here, though, if you can believe it. I have a feeling theses little things are in every Duane Reade and CVS. I've just never looked (or had a reason to need an emergency dose) before now.
Wal-Mart is still outside the gates, though we're currently fighting a (probably hopeless) battle to stop 7/11's rampage through the East Village. ;) It's a real shame how they're flattening the neighborhood, but I'll leave that to the next generation to worry about. ;)
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Hey Alan,
I lead an uncomplicated and simple life so I take all my pills at midnight and have a snack with them. Who was it waiting for the midnight hour? Wilson Picket? Well, I wait for the midnight hour because when the clock strikes 12. I take (3) Gabapentin 300mg, (2) Presista 400mg, (1) Truvada, (1) Lisinopril 10 mg, (1) Norvir, (1) Aspirin 81mg, Vitamins D-3, E-400, C 1000 and B.
I am thinking about adding Zinc because it was a listed ingredient in an infomertial product for prostate health and I don't want the actual infomertial product.
So, I take all these pills every night and 1 of them requires to be taken with food. With a stomach full of pills, how would the medication requiring food know those pills are not just bad tasting food? No matter where I go there is always a back pack and in one of the pockets, there is a full day supply of pills. I have tried to keep my regimen simple and have avoided taking pill at different times and some with, some without food. 8) Have the best day
Michael
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to find out the manufacturer's complete information (% of side effects, dosage instructions, etc) all one has to do is google the name of the med plus the words "package insert".
The google-shy folks amongst us don't even need to google - they can just read the package insert that is inserted into every box that contains their bottle of meds. That's why they're called "package inserts". ;D
When I received my first three months supply of meds, I kept one package insert for each med. Actually, I have one for every med I take and still have some for meds I've only had to take occasionally. They're all kept in a file with some other medical papers. Hey, you never know when you just might need the information when your power or internet is cut off for whatever reason.
People who use keychain pill fobs or other emergency stashes of meds should always remember to rotate them occasionally. I have two emergency stashes and every month when I fill my pill tray, I take the emergency meds and put them in the first few days of my pill tray, and put fresh pills in the stashes. I got into the habit of doing it because I sometimes don't use my stash pills during the month. I want to ensure they're always fresh.
AlanB, I sincerely hope you get your situation sorted out and start taking your meds regularly. You say that you need to eat a full meal with them "otherwise the contents of my stomach etc decide to make a quick bid for freedom". Am I correct in thinking you mean that unless you eat a substantial meal with your meds, you throw up? Ick.
It could be the Norvir causing this reaction, as Norvir can cause GI upsets. Maybe you need to speak to your doctor about trying a combo that doesn't contain Norvir. If you keep missing your meds at the rate you currently seem to be, you'll be switching to a new combo at some point anyway due to resistance issues.
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I really don't mean any offense, but I'll swear some of you folks make this stuff out to be way harder than it needs to be. I am on this same exact combo. Granted, I don't bounce from house to house every week as a matter of course, but I have bounced from house to house in the pursuit of good parties or good penis plenty of times and still managed to pull this combo off without a hitch for years.
I just take it with breakfast every day. You're always gonna be hungry soon after getting up, right? Get it out of the way first thing. And I just use a poor man's fob...I slap all that mess into one decently big bottle and go.
This biggest issue is YOU. You have to decide to make it a priority. If it's really important to you (and it darn well ought to be), you'll make it happen. Figure it out. I swear it won't take but a couple of weeks til you can do it habitually with barely any thought.
Good luck.
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Hi all,
Just to address a few things - I was on Atripla for 6 months and coped fine. Taking tablets doesn't bother me in the slightest. One gulp of water and all four go down the hatch at once.
Food wise - I take a small breakfast and when I take the tablets in the morning you can gaurentee at some point during the day I will have diorheoa. This would interfere with my work considerably, I have a customer / auditor facing role in a pharmaceutical company (ironic isn't it) and the last thing I need during a grilling over how my work meets FDA requirements is the that. The only meal that agrees with me is dinner which as I mentioned varies hugely in time and location on a day to day basis, between numerous houses and eateries.
You know I am not trying to blame anyone or anything other than myself, it's purely my responsibility to take them and I'm not making enough of an effort to do so, however I do think that my lifestyle has a fair enough part to play.
I like the pill box keyring thing. I will also be asking my consultant about a different regime that does not require food as well.
But anyway onwards and upwards.
Al
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That reg requires little more than a Snickers bar. Seriously. And Immodium - just a tab a day - will take care of the squits, most likely.
I mean...more power to you, in whatever you choose. I just remain baffled by all you folks who hopscotch from reg to reg to reg like it's nothing.
I still say: Sort it out. I'm sorry, but AIDS is more than an inconvenience.
But hey...it's your life. Ya gotta do what works for you. If that's what it takes, go for it. My best to you.
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That reg requires little more than a Snickers bar. Seriously. And Immodium - just a tab a day - will take care of the squits, most likely.
I mean...more power to you, in whatever you choose. I just remain baffled by all you folks who hopscotch from reg to reg to reg like it's nothing.
I still say: Sort it out. I'm sorry, but AIDS is more than an inconvenience.
But hey...it's your life. Ya gotta do what works for you. If that's what it takes, go for it. My best to you.
Testify.
I routinely take my morning Isentress, Norvir and Prezista with maybe a handful of People Kibble and a glass of juice or something. Did the math, and a protein bar plus a glass of juice is almost three hundred and fifty calories. Some bread and butter can take it past 400. It's seriously not that hard to cram a pack of crackers and a glass of milk down or something.
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I just take it with breakfast every day. You're always gonna be hungry soon after getting up, right?
never! food in the morning makes me barf. A few crackers around 10 or 11, and lunch by 1 is the best I can manage.
however, I do agree very much with the rest of your post/advice/admonishment. ;) I remember when we had no regimens or very few. I've run out of regimens that were effective and had to wait on new meds to be developed. It's one thing to change a regimen because you've had an allergic reaction or your liver functions have gone off the scale. But to change regimens rather than to try to treat the side effects or to effect a behavior change for better adherence, seems short-sighted when one considers HIV treatment is a lifetime commitment and you might need those other regimens in the future.
The only meal that agrees with me is dinner which as I mentioned varies hugely in time and location on a day to day basis, between numerous houses and eateries.
that handful of food others are talking about has never been enough for me. I've always had to "cover up" my meds so they don't upset my stomach -- so it's always been a full meal for me and my meds. While many have suffered from diarrhea, vomiting has always been my achilles heel. Many regimens made me literally throw up daily, and getting to a regimen that had me only throwing up 4-6 times a month was a godsend! Even now 8 yrs on this regimen, I'm still barfing 1-2 times a month - but that so beats 30X a month!
So I've always gone with dinner for my meds - and it sounds like you could too. I mean as long as you're eating dinner in the same half of the day every day, and taking your meds then, you should be just fine. A few hours either direction isn't going to mean much in a daily dosing regimen.
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I'm on the same meds and take them in the morning. I find that I don't need to eat a full meal but just something at least to prevent nausea. Most mornings I'll just have some fruit or maybe a yogurt and I never have problems.
I find the morning is the best for me because I know that 99% of the time I will be at home then. I never know in the evening because I might go out straight from work and not get home till late.
Here's my secret to never forgetting. The last dose I missed was 1.5 years ago. I link the act of taking the tablets to something physical that you won't forget. For me I charge my phone on my bedside table and turn on my bedside table lamp every morning when I wake. I have a very strict rule of never moving my phone from my bedroom or turning off my lamp unless I have taken my tables. My routine is to take my tablets and then turn off the lamp and pick up my phone.
Many times I can't actually remember taking the tablets because it is so routine now. But if I check that the lamp is off and my phone is in another room I know I've taken them. The phone is a good thing to link to because I can't leave the house without it. Even if I forget to take my tablets I have to go and get my phone on the way out which reminds me. The lamp is a good back up because I always turn all the lights off before leaving the house. Even if I forget my phone I'll see the light on and remember to take my tablets.
You'll have to find something that works for you but linking it to actions or tasks that you have to do makes it easy to remember.
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Good thing you're not seeing my doctor(s). They would bitch-slap you quite repeatedly. The only difference with horror stories from others my doctor treats, and my non eventful story is simple adherence, according to my doc.
They call me the adherence poster boy. And results say it all.
Adherence is the whole ballgame.
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I am really anal about my meds - every day between 18.00 and 18.30. I always have a dose in my briefcase, my coat and my backpack "just in case". The Norvir, Truvada, Prezista regiment is pretty easy and all it requires is a light snack to activate the digestive acids in the stomach - eat a candy bar or some crackers.
I've been doing it this way since July 2010 with no issues.
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To the folks saying 'just have them with a light snack' it's not an option.
I've been making a huge effort to make sure I do not miss them and I'm getting back on track. Timing isn't great but sure that's just the way it has to be.
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To the folks saying 'just have them with a light snack' it's not an option.
do you mean because you need more food to deal with them or because you don't always have time for the food?
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do you mean because you need more food to deal with them or because you don't always have time for the food?
He mentioned he had to take his meds with a full meal or else he gets the...sh*ts
A light snack probably doesn't work.
Regardless, I am sure you eat one full meal each day, just take your meds with that meal...like we said you don't have to take your meds at the same exact time each day. Being a few hours off each day is surely better than missing days completely. Sounds like your making this harder than it needs to.
That is, unless there is something else going on that you haven't mentioned. Reading your post (I could be way off), but is there something else? Substance use, or housing difficulty maybe? The "hectic lifestyle" you told us not to ask you about.........I'm asking.
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The "hectic lifestyle" you told us not to ask you about.........I'm asking.
There really is only so much help we as a forum can offer without asking that question.
To the OP:
Have you noticed certain food groups seem necessary to avoid the shits? Protein? Fiber? Do certain foods cause them or make them worse, like dairy?
400 calories, without dietary restrictions, is more than doable with a protein bar or two and a nutrition shake, if necessary. But if dairy is an issue you have to work around that, and it's been my experience that fast/fried food, calorie count notwithstanding, can make the diarrhea worse.
HIV can be such a personalized issue. In a way dealing with the meds is like dealing with Crohn's disease in that what triggers side effects in one person might not in others.
It might take trial and error, and maybe a few frantic trips to the bathroom, but you obviously value your health and your life enough to try.
For some folks, fiber supplements help with the shits. For others, Tums. But it all comes down to your own physiology and your lifestyle. Sadly, even in these waning years of AIDS, the virus does demand come changes - sometimes uncomfortable and fundamental ones.
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The living arrangements are due to work and social life and well I did have a love life, but not anymore. No substance abuse at all, particularly as mental health issues such as paranoid scitzophrenia run in the family.
Taking them with lunch is fine though the week, it's more the weekends I struggle with as I'm out of the house from 10am to . . . . Well I never really know where I will end up. Weekends are very much impulsive and I can end up in random places at random times. Say if I'm at my mates and we go out for a drive and end up eating out for dinner, I've no tablets with me cause we aren't in my car and by the time we get back I've forgotten all about it. That's just an example which happens on occasion. Eating is my reminder, cause when I sit down at my own house my meds are straight in front of me on the table so it's impossible to forget.
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There really is only so much help we as a forum can offer without asking that question.
To the OP:
Have you noticed certain food groups seem necessary to avoid the shits? Protein? Fiber? Do certain foods cause them or make them worse, like dairy?
400 calories, without dietary restrictions, is more than doable with a protein bar or two and a nutrition shake, if necessary. But if dairy is an issue you have to work around that, and it's been my experience that fast/fried food, calorie count notwithstanding, can make the diarrhea worse.
HIV can be such a personalized issue. In a way dealing with the meds is like dealing with Crohn's disease in that what triggers side effects in one person might not in others.
It might take trial and error, and maybe a few frantic trips to the bathroom, but you obviously value your health and your life enough to try.
For some folks, fiber supplements help with the shits. For others, Tums. But it all comes down to your own physiology and your lifestyle. Sadly, even in these waning years of AIDS, the virus does demand come changes - sometimes uncomfortable and fundamental ones.
Your right, I need to figure out what types of food makes me more prone to it. I have a varied diet, from super healthy for a few days to pigging out on take aways for a few days.
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Your right, I need to figure out what types of food makes me more prone to it.
keeping some sort of a journal always helps in these kinds of situations.
many people dealing with HIV side-effects have to track when, where, how much to eventually overcome these issues. It wasn't until I provided my doctor with a journal explicitly showing how I was throwing up 6-8 times a month before he really believed me and changed my regimen. Charting how mustard and big clumps of bread effected my esophagus finally tracked down how scar tissue damage from thrush required me to have my throat dilated so that I could eat and swallow properly. Tracking my days of sun-exposure helped to verify that Bactrim was the cause of the redness and itching.
It wasn't always easy and it took some time; but I was able to overcome constant extreme redness and itching, vomiting 8 times a month and not being able to eat out with having to rush to the bathroom unable to breath or swallow.
I'm sure if you work at trying to remember to take your meds, work out ways to have meds with you, and work on finding out what, why and how you have other digestive issues that you can resolve these issues and be able to take your meds appropriately without all the nastier side effects. It'll just take some time and some extra effort on your part for a while ;)
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Get a pill box !!! they're really helpful and if you get one for a week you can just put all your meds in there. Have it with you in a bag. It becomes really easy.
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This his been mentioned a lot on these forums, but keychain pill holders are really handy. i use one and love it. how often are you out without your keys? hopefully, not often! this will eliminate the issue of not having meds on hand and is much cheaper than a new med regimin!
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I never had any side affets from the Norvir, Prezista and Truvada but in the beginning, when I had to take Bactrim three times a week, I was, to quote Harold Walowitz's mother, an upside down volcano.
As others have said, notes in a journal help.