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Author Topic: Adherence  (Read 2893 times)

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Offline ZachR

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Adherence
« on: November 22, 2019, 06:57:50 am »
Before I was crazy strict, but then I started to take my meds withun a tineframe of 1.5-2 hours instead of waiting the exact minute. Do you think that bears any risk for resistance bearing in mind the long half life of Biktarvy?
Now I take my meds between 10:10 - 11:40am and have never missed a dose for 13 months since beginning. Do you all aim for the exact minute?
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline leatherman

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Re: Adherence
« Reply #1 on: November 22, 2019, 08:05:43 am »
Do you all aim for the exact minute?
good grief, no!  ::)

I try to stay within a 4 hr window, of 2 hrs before or 2 hrs after a "regular" time. That means makes my morning med dosage is taken anywhere between 6am and 10am. My evening dose is anywhere between 4pm and 8pm. I have never worried about taking meds at the exact minute, not even when I was having to set an alarm to ring every 4 hours every day all day and night long to wake up and take AZT 25 yrs ago.

ARVs have a huge half life these days so that 93-95% adherence still results in successful treatment, you could miss your target time by 8 hrs, or even skip a dose twice a month, and still remain UD. Of course 100% adherence ensures successful treatment and should be our goal. Worrying/Stressing about missing one dose or not taking meds at some exact minute probably does you more harm than missing the dose or missing your schedule by several hours.

btw resistance comes from taking meds in a haphazard manner. Missing a single dose or taking meds hours from your "regular" time does NOT cause resistance. However, if you take meds one day and miss 2 days, then take meds 3 days before missing 3 day, continuing to miss meds off-and-on like that will lead to resistance. Missing several days in a row can allow the the level of the meds to drop just low enough (again, there's that long half life) that HIV learns to bypass that med - and that's resistance.
leatherman (aka mIkIE)

Offline lightalltheway

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Re: Adherence
« Reply #2 on: November 22, 2019, 10:04:07 am »
Zachr,

Stressing about medication timing will lead you to nowhere. Modern ARV have a long middle life in which gives a spacious room for flexibility.

When I was first diagnosed, I was just like you. My whole day evolved around the pill and its timing. Sometimes I used to cancel an event just because i need to take my medication. But that wasn't a correct approach.

Now i take my medication around dinner time, i don't worry whether its 7 8 or even 9 pm. Adherence is achieved by 90% of successful treatment. Hope that helps.

Prince

Offline ZachR

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Re: Adherence
« Reply #3 on: November 22, 2019, 11:14:14 am »
Thank you leatherman and Prince!
Well, I have never stressed about it, as I know that the IC half lives especially of Biktarvy and Triumeq cover almost 2-3 days, but recently came across many posts where people are terrified about taking their pill 15minutes later.. and then started to question whether what I'm doing with 1.5hrs is craziness and wanted to sync my watch with you. Now with your responses, I have the freedom of a flexible drug time again with peace of mind. :)
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline lightalltheway

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Re: Adherence
« Reply #4 on: November 22, 2019, 04:26:46 pm »
ZachR, please do and lets look at the starts, again :)
Prince

Offline ZachR

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Re: Adherence
« Reply #5 on: November 22, 2019, 06:45:37 pm »
My eyes have sorely missed them, yet they are there, patiently longing for a glance and lighting all the way to glory. Let us bathe in their glamour again, as we have well deserved. :)
« Last Edit: November 22, 2019, 06:49:59 pm by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline bocker3

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Re: Adherence
« Reply #6 on: November 23, 2019, 09:25:20 am »
I take my morning pills (Reyataz, Norvir), after breakfast.  Whatever time that might be.  Could be 6a.m., could be 10:30am.m.
I take my evening pills (Efavirenz, Descoy) before bed, whether that is 9:00pm or 2:00am.
Additionally, I stick to this routine even when I travel -- I don't adjust due to time zones, which means I've added as much as 11 hours one way and lost 11 hours the other way.
I have been UD, WITHOU A SINGLE BLIP, since 2007.

There is no need to be a slave to the clock for pill taking.  It is far better to develop a habit - i.e. take pills when you do X.  "X" being something you do every day in the same, approximate, timing (like eating breakfast or going to bed).
Habits ensure you miss few doses - changing things based off of the clock, is a recipe for missing doses, as "life happens".

That is my two-cents, anyway.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2015 969/28% <20

Offline Expat1

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Re: Adherence
« Reply #7 on: November 23, 2019, 03:22:09 pm »
Six years on meds.  I take my after first meal of day.  That can vary widely in my life between 7 am and 3pm.   I am on Complera/Odefsey which is a less potent combo and have had only VL undetectable for about 20 of 22 tests and detectable less than 20 twice.  So dont fret.  Cheers Zach.

Offline BlueMoon

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Re: Adherence
« Reply #8 on: November 26, 2019, 11:14:51 am »
Sure there may be a margin of error built into the medication formulas but that is no reason to be complacent.  Obtaining and taking HIV meds in a timely manner is the most important job I have.  I have the ability to take them at the same time every day, exactly as the manufacturer prescribes, so I do, within 15 to 20 minutes of my nominal dosing time.  100% adherence means exactly that; if you routinely vary your daily dosing time by a matter of hours then you are not 100% adherent. 

No one knows his own personal limit of effective adherence until he exceeds it.  Anecdotal evidence is suspect; what works for Person A on regimen X may not work for Person B on regimen Y, or even Person C on regimen X or Person A on regimen Y.  It is best to measure your level of adherence to the objective standards established by the manufacturers under controlled testing conditions, and not to the subjective experiences of random individuals.  Stray from the marked trail at your own risk.

I often see the figure of 95% adherence cited as "good enough" which is then accepted without question, but that is no doubt an average; most likely there are some for whom 90% adherence is adequate, and others who will fail at 99%.  I would like to see where this 95% figure originates, and exactly how it is defined.

All that said, I see no reason to panic over an occasional late or missed dose, but rather than shrug it off, think about why it happened and what you can do to prevent it from happening again.  I feel that the best chance of success is by adhering as closely as possible to the manufacturers' recommendations, and to say otherwise is indefensible.  A blase attitude toward HIV is how most of us were infected in the first place.  The meds give us a second chance at life; make the most of it.
It's a complex world

Online Jim Allen

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Re: Adherence
« Reply #9 on: November 26, 2019, 12:43:29 pm »
@Zachr

Adherence stress. Sure you should aim to have great adherence, have a routine when you take the meds, set a reminder on your phone or buy a pillbox to keep on track.

That said you are taking the VIP drug with a good half-life and a few hours either side should not pose an issue but if you need reassurance, by all means, put it on the questions list for next time you talk to your doctor.  My own doctor is happy with my Truimeg being within the same 4 hours everyday https://www.aidsmap.com/about-hiv/adherence-hiv-treatment https://pdf.hres.ca/dpd_pm/00046296.PDF

The other thing to keep in mind is at some stage you might even miss a dose. Nobody is perfect even the most experienced people who take medication for one or another condition will miss a pill sooner or later, aim not to but if it does happen the odd time no need to panic either.

Relax, less stress and move focus on living your life ;)

Best, Jim

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5943894/
Adherence and virologic outcomes among treatment-nave veteran patients with human immunodeficiency virus type 1 infection

A cohort study was conducted on HIV veterans initiating antiretroviral therapies in 1999 to 2015

In summary, this study showed how initial adherence differently influenced the viral suppression rate across different regimens. No evidence shows 95% adherence threshold is necessary. Patients with medium adherence (75%<95%) can achieve viral suppression with the rate not statistically significantly different from patients with high adherence.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4839839/
Adherence to Antiretroviral Therapy and Virologic Failure

Paterson et al suggested that at least 95% adherence to unboosted PIs was required for virologic suppression. This 95% adherence cut-off point, based on what is now obsolete therapy, has been widely used as the level of optimal adherence needed to be met by patients taking newer agents and their combinations.

This meta-analysis synthesized 43 studies (27,905 participants) performed across >26 countries, to determine the relationship between cut-off point for optimal adherence to ART and virologic outcomes.

Irrespective of the cut-off point for optimal adherence, our findings support the tenet that optimal adherence to ART is associated with positive clinical outcomes. The threshold for optimal adherence to achieve better virologic outcomes appears to be wider than the commonly used cut-off point (≥95% adherence). Though patients taking ART should be instructed to attain ≥95% adherence, apprehensions of slightly lower adherence should not deter prescribing ART regimens at an early stage of HIV infection.


https://journals.lww.com/jaids/Abstract/2019/11010/Antiretroviral_Adherence_Level_Necessary_for_HIV.3.aspx

Antiretroviral Adherence Level Necessary for HIV Viral Suppression Using Real-World Data

A benchmark of near-perfect adherence (≥95%) to antiretroviral therapy (ART) is often cited as necessary for HIV viral suppression. However, given newer, more effective ART medications, the threshold for viral suppression may be lower. We estimated the minimum ART adherence level necessary to achieve viral suppression.

Results: The adjusted odds of viral suppression did not differ between persons with an adherence level of 80% to <85% or 85% to <90% and those with an adherence level of ≥90%. In addition, the overall estimated adherence level necessary to achieve viral suppression in 90% of viral load tests was 82% and varied by regimen type; integrase inhibitor- and nonnucleoside reverse transcriptase inhibitor-based regimens achieved 90% viral suppression with adherence levels of 75% and 78%, respectively.

Conclusions: The ART adherence level necessary to reach HIV viral suppression may be lower than previously thought and may be regimen-dependent.

« Last Edit: November 26, 2019, 12:57:25 pm by Jim Allen »
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Offline leatherman

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Re: Adherence
« Reply #10 on: November 26, 2019, 07:28:43 pm »
I often see the figure of 95% adherence cited as "good enough" which is then accepted without question
actually there's data, and this kind of data has been available since the late 90s. Here's a good article discussing the pros and cons of the "95% adherence mantra".
https://www.verywellhealth.com/how-much-adherence-is-enough-adherence-49307

also i think you missed the point. Personally, I've never met anyone that suggests that less than 100% adherence is the goal; but when some newbie is freaking out about being 15 minutes late or missing a day of meds, knowing that 95% adherence (which would require even more missed meds!) is still successful treatment is a great way to combat the stress of believing that you failed and could possibly die.
leatherman (aka mIkIE)

Offline BlueMoon

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Re: Adherence
« Reply #11 on: December 01, 2019, 11:56:08 am »
Thanks to Jim Allen and Leatherman for the links to that information.  It looks like for most people on most regimens these days there is a wide margin for error.  All well and good, but it cannot be that hard to commit to taking a pill at the same time every day.  Surely that is the best way to ensure successful treatment.  Habitually using your margin of safety means that it might not be there when you need it most.

P. S. Happy World AIDS Day everyone!
It's a complex world

Online Jim Allen

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Re: Adherence
« Reply #12 on: December 01, 2019, 12:20:58 pm »
Thanks to Jim Allen and Leatherman for the links to that information.  it looks like for most people on most regimens these days there is a wide margin for error.ll well and good, but it cannot be that hard to commit to taking a pill at the same time every day. Surely that is the best way to ensure successful treatment.  Habitually using your margin of safety means that it might not be there when you need it most.

P. S. Happy World AIDS Day everyone!

I'll be honest I normally ignore you but since you mentioned me and it seems your fishing for one on this topic I'll bite, nobody has surgested habitually not adhering to their medication. They have given their experience and both myself & Leatherman have given links into this, glad to hear from your post your fucking perfect 💯% without any errors, it must be a grand life for you, well done! 

The rest of us mere mortals including the OP who happens to be new to this will from time to time miss a dose despite best efforts, or have complexity meaning keeping to exactly the same time whilst aiming for perfection is not possible. Don't stress or overthink this because you don't have to worry about it apparently.

There is no point in people freaking or loosing their minds over a bit of "spilt milk and all" particularly giving it's 2019 meds not 1999 ... Guidelines have changed allowing generally for a few hours window and the OP can talk to their doctor to confirm this for their treatment, anyhow reassurance and enforcement on how to be adhering with regards to meds instead of the scaremongering or shaming tactics from the past is what people need if you ask me.



« Last Edit: December 01, 2019, 01:00:21 pm by Jim Allen »
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Offline BlueMoon

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Re: Adherence
« Reply #13 on: December 01, 2019, 05:18:16 pm »
Take a chill pill, Jim Allen.  A recap is in order.  The original poster boasted of his adherence (and rightly so), and asked for opinions and the adherence practices of others.  I opined that better adherence gives a better chance of success, and stated that I personally strive for maximum adherence.  I am disappointed that you feel that warrants a personal attack.
It's a complex world

Online Jim Allen

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Re: Adherence
« Reply #14 on: December 01, 2019, 05:33:31 pm »
You are disappointed, that's okay as I'm disgusted.

Let's just ignore each other and leave it at that.
« Last Edit: December 01, 2019, 07:52:17 pm by Jim Allen »
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Offline ZachR

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Re: Adherence
« Reply #15 on: December 01, 2019, 05:43:23 pm »
I want to thank you all for sharing your experiences, my own conclusion is that having a frame of at least an hour before and past dosing is well within the margin of error and should be of no concern with the new, longer half-lived pharmaceuticals. For the body is very dynamic, and everything you eat differently, the intensity of physical activity and other factors can by themselves cause changes in one's homeostatic dynamic and I bet even with perfect adherence, people would still have small day to day differences in their blood drug level. Bearing that in mind along with the long intracellular half lives and bioaccumulation, an hour pre and post dosing wouldn't pose any theoretical threat.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline leatherman

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Re: Adherence
« Reply #16 on: December 01, 2019, 07:09:52 pm »
Do you all aim for the exact minute?
so I do, within 15 to 20 minutes of my nominal dosing time
the OP was discussing med adherence to the exact minute. That's just a stressful waste of time to be that O.C.D. I notice that you do not take your meds at the exact minute

hour pre and post dosing wouldn't pose any theoretical threat.
missing a whole dose wouldn't be a theoretical threat as long as your adherence was >95% a month. Missing two doses a month would still keep you within the "margin of safety" ;D but striving for 100% adherence is still the best plan of action

but it cannot be that hard to commit to taking a pill at the same time every day.
I'm lucky as I have no addiction issues, or housing issues, or food issues that might affect taking meds at the same time every day if I did want to take them daily at the same time. Volunteering with the Ryan White program, I have learned that a lot of people have issues that affect them even getting meds much less staying adherent or adhering to a strict time table. I also learned that newbies are often worried about things that just aren't worrying about - like "blips" of 20 and exact minute adherence. ;)

I used to have to use an alarm clock (no cellphone alarms back then) to take meds. Every 4 hours, every day, 24 hours a day, night and day, I stopped what I was doing (usually trying to get 8hrs of sleep in there somehow, trying not to die of aids, and puking quite a bit if memory serves me right) to take 4 pills of AZT.

these days whenever I wake up (5am to 8am) I take morning meds. every day between 4p to 8p (depending on how hungry I am or if I'm meeting people out) I take my night meds. (I have a pill fob for those nights I'm not at home). To be honest if someone was taking their meds every day at the exact same time (give or take 30 mins), I would suggest to loosen up, change up your schedule, and get some spontaneity into your life. But that's just a suggestion from someone who has lived with HIV for 35 yrs (just passed my Aidsaversary, wooHoo!) and taken meds for 27 years. Stressing about the exact minute or hour will kill you faster than not having exact-to-the-minute adherence.
leatherman (aka mIkIE)

Offline harleymc

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Re: Adherence
« Reply #17 on: January 06, 2020, 03:49:30 am »
Been on medications 28 years .
I went for years on AZT and DDI. Both were multiple times per day dosing. The AZT with fatty food the DDI on a fasting stomach.  My day was planned out to the half hour in terms of not only the pills but the narrow windows of opportunity to eat and drink.

So now that I'm on a once a day pill I'm very relaxed about pill time. 'sometime in the morning'  does for me.

Offline Toink2

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Re: Adherence
« Reply #18 on: June 04, 2020, 04:28:08 pm »
An HIV specialist doctor in my country actually told me I should not miss my med time even by 5 min everyday. "If you go past 5 min the virus will build up resistance"

Not good for patient's mental health

Online Jim Allen

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Re: Adherence
« Reply #19 on: June 04, 2020, 04:55:51 pm »
A  total utter useless wanker   in my country actually told me I should not miss my med time even by 5 min everyday. "If you go past 5 min the virus will build up resistance"

Not good for patient's mental health

Stupid and scaremongering can be found everywhere... I also fixed your post when quoting you  ;)

Just make sure this person is not your HIV doc.
« Last Edit: June 04, 2020, 05:01:14 pm by Jim Allen »
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Offline zach

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Re: Adherence
« Reply #20 on: June 04, 2020, 05:04:29 pm »
Looks old, looks like the right answer has been given

Only commented to say what's up zach! And somebody else revived it first.

The right answer is 2 hours is fine. Probably more in a pinch. Dude, you're fine, I hope you feel confident I'm that by now. Just take your meds everyday. I call it morning, afternoon, or night meds. If I'm still on the zone, I care less if I didnt make exact time.

Realize this is an old thread, dunno if you're active still. But wanted to tell you to keep shining.

While I was typing jim responded... I wish I had that irish way with words... that doctor can fuck right off, the stress caused is worse than the missed timeframe.

 


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