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Poll

Does Anyone Take a Once-A-Month Med Break?

Yes, I have taken an occasional break
7 (18.9%)
I follow my prescription to the "T"
30 (81.1%)
I don't even know what is my acceptable "adherence" level
0 (0%)

Total Members Voted: 37

Author Topic: Your Med Regimen, Adherence and Acceptable Risk of Mutation  (Read 5804 times)

0 Members and 1 Guest are viewing this topic.

Offline marc11864

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Per clinical research, my doctor and a recent seminar that I attended on the current regimen that I take (Truvada/Kaletra) it has been suggested that 95% adherence per month is acceptable. What this translates to is that once every 14 days (meaning on the fifteenth day) it is an acceptable to take a day off from taking your meds without a great risk of mutation.

I have missed a dose every so often like this and seem to be doing okay. It also seems to have a beneficial GI affect for a day and I have a bit more energy, decreased side-effects, etc,...

Has anyone actually followed his/her course of treatment this way or do you simply not miss a single dose and follow to the letter of the prescription?

What are your thoughts on the subject?
Let us cavort like the Greeks of old! You know the ones I mean.

Offline RobT

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #1 on: May 25, 2007, 06:00:47 PM »
I follow mine exactly as perscribed. I go insane if even 15 minutes off my orignial time of when I began my regimen.

Rob


Current meds: Atripla
VL: undetectable
CD4: 630

Offline Just John

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #2 on: May 25, 2007, 06:28:32 PM »
I go for 100% adherence and have done since the start; that way if I do ever miss a dose (less than 10 X in four years) or I'm late taking them for whatever reason, I know that I don't have any need to worry or beat myself up over it.

I think that if you re-read the research you'll find that it doesn't really say that it's acceptable to miss 5% of the doses, just that there isn't usually any catastrophic result, however, we are all different and you might be one of the unlucky ones.

Also, if I remember my mathematics correctly, 95% of 365 days is less than 347 days which means that you could miss approximately 1 dose every 20 days not 15.

Take care, John.
Some cause happiness wherever they go; others, whenever they go.

Offline pozattitude

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #3 on: May 25, 2007, 07:02:44 PM »
I try to take my meds on time everyday but I confess I am not always on top of it. 
I used to travel a lot and it used to mess up my med schedule and sometimes I'd run out of meds in the middle of the trip.  I am very lucky that I've been on the same cocktail since 2000 and it still works very well.
I take Kaletra and I just read an article on this drug and how it is "forgiving" of missed doses.  Maybe this has saved my ass.
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline sdcabincrew74

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #4 on: May 25, 2007, 07:40:57 PM »
Sorry, 95% is not acceptable.  100% is the only acceptable number.  Do you not get how lucky we are to have these meds?  How many had to suffer through trials trying to figure out what meds were best and the what doses were best?  How many had to die before the government took notice and started actually doing something about this virus?  When you miss a dose because you "forgot", it is my opinion, that you are being disrespectful.  I know that may sound harsh but if you are going to take meds your goal should be 100%, ALL THE TIME.  Otherwise, do not bother at all, save the money spent on the pills for someone who will do everything they can to take those pills exactly right, every day. 

I am on once a day, norvir, truvada, and reyetaz.  Once a day dosing gives more leeway, so to speak.  In two years I have missed one dose.  That was about 20 months ago.  I missed it for the simple reason that anything I put in my stomach came back up immediately.  I travel all over the world for my job, different times zones almost every day, however this one thing is important enough for me to do right that I always have enough meds and always take them within a 3 hour window (24hrs +/- 3hrs). 

I realize there are other circumstances that make adhearance difficult, mainly side effects.  There are folks on here that suffer horribly because of the side effects of their meds and those adhearance issues I understand.  I also understand "mental" issues when it comes to meds (I am not worth the meds, etc) However, if you want to be able to feel OK, simply because you "forgot" your meds, well I am sorry that is not acceptable.   IMHO, swallowing those three little pills  is one of, if not the most, important thing I do every single day.  Those little pills increase my ability to grace the world with my being for at least another day.

SD (who imagines he will get slammed for his opinion, but frankly, does not give a damn)

« Last Edit: May 25, 2007, 07:47:14 PM by sdcabincrew74 »
The difference between an overnight and a layover is luck!

Offline BT65

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #5 on: May 25, 2007, 08:33:11 PM »
I take my meds 100% of the time, but that's just me.  It's up to everyone how and how often they will take their meds.  I don't consider it "disrespectful" to miss a dose or two.  It's everyone's own system and I don't hold judgement over anyone.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Robert

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #6 on: May 25, 2007, 08:55:19 PM »
Well I'm on the same regimen as SD.  Reyataz, Norvir and Truvada.  But I'm no where as "tight" on my schedule as he is on his.

I deliberately take every 8th day off  That's about 3 days/month.  I want to take more days off but as a compromise to my Doc, I settled on this schedule.  It's sort of like taking a personal day off from work.  I just need it for my own mental well-being.  Also, I like having a working surplus of at least one month in case I should ever need it.

This regimen has not adversely affected by results.  I just came back from my Dr last Tues.  I'm still undetectable and my T-cells are at 630 (up from 533  three months ago) and at 40%, (up from 35% 3 months ago).  i started at a CD4 count of 18 with a viral load of 500,000.  I started my meds in Dec, 2003

i certainly don't think of my own personal preferences on how often I take my pills as any sort of personal slight or lack of respect to those before me.  Oh lord, I have enough things on my mind do deal with.  I certainly give a tip o' the hat to those who sacrificed so I could take my meds with relative ease but the fact that they might be rolling around in their graves over my own personal inclinations as to how often and how much I take my own doses is just too much to think about.  T'ain't nobodys business but me and my doctor's.

robert
..........

Offline J.R.E.

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #7 on: May 25, 2007, 09:02:27 PM »
Hello,

I take mine right to the "t". But I have missed at least three doses in the past 3 1/2 years.

By the way Robert....Excellant numbers !!!



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline sdcabincrew74

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #8 on: May 25, 2007, 10:22:08 PM »
I figured my comments would get me flack.  I just get frustrated with the "OOPPS, I forgot" routine.  I just wonder how you can get through life with the "not my fault, I forgot" attitude.  Sorry, that is a sore spot with me.   >:(
The difference between an overnight and a layover is luck!

Offline bocker3

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #9 on: May 25, 2007, 10:41:46 PM »
I take mine to a "T".  I have yet to miss a dose in a year and a half.  In the morning with my cereal goes the Reyataz/norvir -- in the evening the Atripla goes down -- in front of the TV, at the movies, sitting on the patio, whereever -- I agree that it is the most important thing I do each day.

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
May2013 691/31% <20

Offline JPinLA

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #10 on: May 25, 2007, 11:05:08 PM »
I have not yet missed a dose and always take them (Truvada/Viramune) within 1 hour.  Granted it's barely been 3 months, but I plan on sticking to it given the risk of resistance I'd like to remain on this combo for as long as possible since I've had no sideeffects as of yet...
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline Matty the Damned

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #11 on: May 25, 2007, 11:11:33 PM »
Ah, prissy old Space Waitresses. SD is a fine example of his profession and we love him for it. If nothing else, they always know how to mix a smashing screwdriver at 30,000 feet and where the exits are. :)

Alas Matty the Damned is also an adherence sinner. He has always displayed a singular lack of gratitude and gross disrespect through failing to comply 100% with his medication regimens. As a result the pharma gods have, in the past, punished his straying from the paths of medicinal rectitude with treatment failure.

He knows this is the sole product of giving into blatantly human foibles such as forgetfulness, poor planning and wanton confusion due to brain fog. Totally outrageous and utterly without excuse.

MtD
(Who is in dire need of correction)

Offline aztecan

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #12 on: May 25, 2007, 11:25:48 PM »
The only problem with research like this is it misleads people.

The virus they used in the tests did not develop resistance with the adherence level of which you spoke. Therefore, statistically, you can take a break once every two weeks without fear, at least according to the research.

It is rather like saying you can run a particular stop sign once every 14 days without worrying about having a crash because research shows there is no danger.

Statistically, it may work fine, but in real life, your going to get creamed eventually.

On my old regimen, AZT, 3TC and Crixivan, I missed about three doses in 11 years. The last time I missed a dose was after being snowbound in another city and, stupidly, not taking enough medication with me "just in case." I wrote about it here, well in the old forums. I was not very kind or forgiving of myself for doing this because Crixivan is not particularly forgiving.

Now, a new regimen, sort of. Sustiva instead of Crixivan.

Sustiva is giving me problems. I tend to fall asleep too early, forcing me to hop up out of the recliner and take it at 1 or 2 a.m. Of course, that makes my morning just delightful.  :-\

I'll get used to it eventually. Heck, if I can do the Crix meal schedule for 11 years, I can do anything.

Human nature being what it is, some degree of missed doses is inevitable. It is for these instances that such research was probably done. To use it to allow yourself a "drug holiday" every few weeks is playing with fire, in my humble opinion.

HUGS,

Mark
« Last Edit: May 25, 2007, 11:35:03 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Life

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #13 on: May 27, 2007, 11:47:47 AM »
I am also part of the T team.   I was told when I first started my regimin that I have a 4 hour window.   I have pretty much kept that to a half an hour of taking my goodies.   I have missed one dose and that was because the study shorted me by one dose.   I called the doctor, the study nurse and told them to open the office on Sunday since they fucked up and give me one dose to get me through till monday.   They both were very understanding and spent a great deal of time explaining to me that I would not be in any danger by missing a dose till the following day.    I did not like that anxiety.   Now if I get held up at work, I keep a dose in the car.   I just dont need that anxiety and I do not have any side effects yet that cause me to consider a "day break".     

I think about how I could allow those "creepy fuckers" back out to play.   In my thinking they are GROUNDED FOR LIFE as my Mom always use to tell me when I was a naughty kid...

Eric
« Last Edit: May 27, 2007, 12:23:29 PM by Life »

Offline RapidRod

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #14 on: May 27, 2007, 12:00:10 PM »
Until they switched me to Kaletra, I was 100%. Then after Kaletra, I didn't take it but a week. Went back and was put back on Atripla and am 100% again.

Offline chemistry001

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #15 on: May 27, 2007, 12:46:02 PM »
Ive been for 9 months a 'T' girl team member, apart from 2 weeks ago when i screwed up for 2 days. I take my meds at 10pm and for a couple of nights the boy friend went to sleep before me and when i went into the bedroom i didn't turn the light on and as normal popped my two pills. Two days later when the light was on i noticed that i had been popping two Kivexa tabs and not taking my sustiva. I had about 30 min of having cold sweats, but i think it will be fine.

A friend told me to ask the doc to test the level of sustiva in my blood, if it is high he says that i could take the occasional break, I'm not sure if i would do that but i will ask the doc to test the level in my blood.

Love to you all
Paul xXx
Diagnosed 01/08/06
CD4-9, VL->500,000, CD4% 1
Started on Sustiva/combivir 22/08/06 changed to kivexa 18/09/06
02/10/06
CD4-50, VL-1496, CD4% 5
04/12/06
CD4-112, VL-125, CD4% 7.5
22/02/07
CD4-121, VL-<50, CD4% 9
29/05/07
CD4-125, VL-71,(re-done 149), CD4% 11
25/09/07
CD4 -231, VL-74, CD4% 15
Cant remember the next few dates
17/01/08  Kaletra and Truvada
CD4 - 281, VL-115
06/03/08
CD4 - 287, VL-178

Offline BT65

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #16 on: May 27, 2007, 02:03:59 PM »
I'm on Trizivir and Sustiva.  I have my pills poured into pill boxes that have four slots in them.  I pour them every Friday.  I am resistant to a lot of meds, so I adhere to mine 100% of the time.  I don't take a break from Sustiva, because I might like it too much and might not take it every night, like if I want to stay up late or have a night without bizarre dreams.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline blondbeauty

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #17 on: May 27, 2007, 02:06:04 PM »
I have never missed a dose, but I have only been on meds for 9 months.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline leatherman

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #18 on: May 27, 2007, 02:28:23 PM »
As my chart below my sig aptly shows, I've had serious problems sticking to my regimes until the last few years.

When I first started taking meds in 93, there was only AZT. That stuff was killing me faster than my partner was dying, and one of us had to stay alive to bury the other one, so I quit the meds. (Memorial day is the 13th anniversay of his burial by the way)

When I ended up in the hospital with PCP, I got a new regime - 32 pills, capsules, and tablets a day, all with weird time/eating restrictions. Oh yeah, anyone else remember Norvir in liquid form? It was liking drinking gas. So many rashes, so much barfing, I sure didn't stay on that for too long. What screwed me up psychologically was that I always felt deathly sick taking the meds and always felt so much better and healthier (at least for 9-12 months) off the meds.

Again a trip to the hospital with pneumonia (not PCP), and a new regime. This time with Sustiva that left me f-ed up in the head all day, every day. Norvir was in capsule form now; but I had to take 8 a day. (Heaven forbid if one of those gel caps burst too soon after taking) And, lordy, barfing every single solitary day!! It got so bad that some days just touching those capsules would send me rushing to the bathroom to puke. I decided at that point that if life was going to consist of barfing and feeling like crap every day, there wasn't much used to living, so I went off the meds again. (the meds might have been helping me physically; but they sure weren't helping with my depression and grief issues, they were only making it all seem worse.)

But then I got lucky because I was about to be evicted. I ended up talking with a social worker that put me in touch with a NEW doctor (along with helping me with my housing problem). Instead of some old drunk that really didn't care about having gays in his ID practice (my opinion along with all the social workers and the articles written about him in the local paper), this new doc actually gave a damn about me and my state of health. We went through a ton of blood work and several different regimes of meds until we finally found a selection (now only 8 pills a day) that not only knocked the VL down; but after a few rashes and some barfing at the first, a regime that I could actually tolerate. Oh sure, I still barf about a half a dozen times a month (and this is nearly 4 yrs on this regime) but, hey, it's a helluva lot better than being as sick as I was before on all that other stuff.

Now the current regime is:
Viramune, VidexEC, and Bactrim (Tcell hover around 300 all these yrs, so I stayed on this so hopefully I won't end up with pneumonia again) instead of breakfast to meet the not-eating requirments; viread, norvir (only 1 capsule now thank goodness), Reyataz, and another Viramune with dinner.

Oh, I'm still not 100% compliant to this day. That damned Norvir doesn't like it when I eat tomato sauces, and there's some AZT in the Reyataz. But I can proudly say that I'm up to 98% adherence and I have the numbers to prove it. Breaking through the depression, feeling better (while ON the meds) and not barfing every day has sure helped me get this far and hopefully will help me to improve to that goal of 100%.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #19 on: May 27, 2007, 05:21:54 PM »
Sorry, 95% is not acceptable.  100% is the only acceptable number. 

link please

Every doctor I've had in fifteen years says a 95% rate is as near perfect as one can obtain.  Not calling anyone a liar, but I always highly doubt people who make sanctimonious claims NEVER to have missed a single dose.  And one dose was only partly (fuzeon) because I fell asleep as it was mixing for 20 minutes.  Another was due to traveling for 18 hours.

I've missed 2 doses in the past 12 months -- do the math... that's like what?  99%?  I'd love to compare my numbers to anyone else on HAART if you'd like.

Doctors tell the n00bs 100% because if they do not then the new patients start down the slippery slope of doing their meds whenever they damn feel like it.  I have enough experience in the matter, and doctors who after 15 years, feel familiar enough with me to tell me the truth, that there's at least a 3-5% window in tolerance.  Of course, this varies from HIV medication to another one in how long they stay in your blood.
"Iíve slept with enough men to know that Iím not gay"

Offline bimazek

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #20 on: May 27, 2007, 07:34:55 PM »
I sat thru a 3 hour lecture by the clinical top UCLA aids dr. a wonderfully smart woman, and all the graphs and charts she put up showed 95% is fine Adherence and has practically the same Risk of Mutation as 100%. 
so i would not worry about missing a dose 2x per month, but to take one day off a week -- seems a bit much

Offline Nico

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #21 on: May 27, 2007, 08:36:05 PM »
I don't screw with meds.  I take them on the hour (sometimes a little late) , but even when traveling and changing time zones I get my butt out of bed at whatever time and take the little buggers. 

I like living and having a chance.  So I don't crap on an opportunity that some people do not have and some take for granted.

Rog

Edit: to spell butt correctly - like I don't know what one is...:P
« Last Edit: May 27, 2007, 08:37:57 PM by Nico »
Poz since 1990.

Offline sdcabincrew74

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #22 on: May 27, 2007, 11:09:14 PM »
95% is just not worth the risk.  If you aim for 95% and end up at 90% (which is human) then you got problems.  If you aim for 100% and end up at 95% (which is human) you are good to go.
The difference between an overnight and a layover is luck!

Offline Matty the Damned

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #23 on: May 27, 2007, 11:39:01 PM »
Which, SD, is what you should have said in the first place rather than subjecting the rest of us to your judgemental little spray about adherence.

The notion that 95% adherence is good enough is total bullshit. Despite the views of the Marc (the OP) and his doctor taking every 15th day off will utlimately result in viral resistance and treatment failure.

MtD

Offline Robert

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #24 on: May 28, 2007, 12:59:51 AM »
I wish our friend and blogger, SHAWN , would chime in on this.  I love his approach but he hasn't really said too much about the results.  I asked him once, responding to one of his blogs about his numbers but I never got an answer. I guess he's been busy with other stuff.  Anyway, as I recall the results were pretty good.  Shawn's been taking meds practically his entire life and last fall decided he would take them one week on....one week off.   In other words, every other week.  NOw that's an approach I like.  I am sooo tempted.

robert
..........

Offline sdcabincrew74

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #25 on: May 28, 2007, 10:19:41 PM »
Which, SD, is what you should have said in the first place rather than subjecting the rest of us to your judgemental little spray about adherence.

The notion that 95% adherence is good enough is total bullshit. Despite the views of the Marc (the OP) and his doctor taking every 15th day off will utlimately result in viral resistance and treatment failure.

MtD

Yes I did have a judgemental spray, and I still stick by it.  But, aiming for 95% is not good enough because the truth is, even the best, will miss at least once in their lifetime.  100% that is what everyone should aim for then if you miss you may still be OK.  Otherwise, why bother.  

If you read my original post I said I know that may sound harsh but if you are going to take meds your goal should be 100%  I am sorry, I do not buy the I forgot excuse when it is used on a regular basis.  You can hate me for that opinion but I am sorry, that is my opinion.  I was raised and live my life putting 100% into whatever I do.  If you are going to do something half-assed, why bother doing it all. 
« Last Edit: May 28, 2007, 10:27:32 PM by sdcabincrew74 »
The difference between an overnight and a layover is luck!

Offline Matty the Damned

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #26 on: May 28, 2007, 10:31:18 PM »
SD, Matty the Damned doesn't hate you for your opinion. You don't provoke such a strong response in him.

In fact I agree that aiming for 100% compliance is the only way to approach HAART. The 95% approach advocated by the OP is in my opinion dangerous and he's simply asking for resistance.

But you know, getting all prissy and adopting that "for-the-last-time-sir-please-return-your-tray-to-the-upright-position" tone isn't really going to have an impact with anyone on meds. All of us fuck up from time to time and forget to take a pill.

Which is why we should aim for 100% compliance. Not because it's "disrespectful" if we don't. I mean disrespectful to whom?

GSK?

MtD


Offline sdcabincrew74

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #27 on: May 28, 2007, 11:23:34 PM »
The prissy tone you speak of is not one I had.  I was being matter of the fact.  As for the tray table, when an adult has been asked politely three times to do something because the over bearing government made a law that requires them to do it, then damnit be a fucking adult and put up the damn table. 

I do not get prissy with my passengers and certainly not on this board.  I was stating my opinion.  Nothing gets under my skin faster than those that bitch and moan about their situation and never do anything to improve the situation.  Meds will be forgotten because NO ONE is perfect.  However, I know more than a few who are always forgetting, these are intelligent people and it frustrates me to no end to know they are screwing their futures by "forgetting".  It is time to grow up. 

Saying 95% is good enough just seems to rationalize the lack of personal responsibility that is so prevalent in the US society.  When you go on meds, you need to be responsible and do everything possible to take those meds as prescribed.  Just like when you get on the plane, take some personal responsibility for your own actions and follow the damn rules, they are there for a reason.
« Last Edit: May 29, 2007, 04:05:51 AM by sdcabincrew74 »
The difference between an overnight and a layover is luck!

Offline Miss Philicia

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #28 on: May 28, 2007, 11:47:16 PM »
O RLY
"Iíve slept with enough men to know that Iím not gay"

Offline Matty the Damned

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #29 on: May 29, 2007, 12:12:15 AM »
YA RLY!

MtD :)

Offline fearless

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #30 on: May 29, 2007, 02:26:06 AM »
Actually, the latest research, an article about which was posted on this site, shows that Kaletra based regimens are forgiving of missed doses, even below this often discussed 95% threshold.

For me, the interesting thing from the study was the overall adherence rate of only 73% - we may think we're adherent but the only way to actually measure it is through clinical studies where they give you the pills and count your returns. In the study I'm in, I have to report my missed doses (very very few, I may say) but then they double check by actually counting the pills I've taken between visits. There have been a couple of times when I've missed an extra dose than what I thought ie I've believed that I have taken my pills, but in reality, I have just thought that I'd taken them, which is different to forgetting.

http://www.aidsmeds.com/articles/1667_11875.shtml

(Reuters Health) - Adherence rates to lopinavir/ritonavir regimens that fall below 95% can still bring about high rates of virologic suppression in HIV infection, according to a new study.

Dr. Shuter calls the lopinavir/ritonavir regimen "forgiving" and says the forgiveness is likely attributable to two factors. "One is the improved pharmacokinetic properties of lopinavir/ritonavir as compared to unboosted protease inhibitors," he said. "The second is the low frequency of resistance mutations in recipients of lopinavir/ritonavir therapy."

"Factor 1 makes it more likely that a patient missing a dose will maintain therapeutic levels of drug, and Factor 2 makes it less likely for non-adherent patients to evolve resistance against the agent," he continued.

Dr. Shuter said that recent research data demonstrate "high rates of virologic suppression in the face of moderate adherence rates in recipients of non-nucleoside reverse transcriptase based (primarily nevirapine) therapy. The forgiveness of other boosted protease inhibitor-based regimens or of unboosted atazanavir is not known."
« Last Edit: May 29, 2007, 02:43:29 AM by fearless »
Be forgiving, be grateful, be optimistic

Offline Cliff

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #31 on: May 29, 2007, 02:31:00 AM »
Sorry, 95% is not acceptable.  100% is the only acceptable number.
I don't believe this is a true statement.  In the studies I've seen, 95% or greater adherence is optimal, not 100%.  And achieving at least a 95% adherence rate is what my doctor told me to reach for, when I was first diagnosed (and started meds).  But that even reaching levels less than 95% (especially on boosted protease inhibitors) was good.  I managed to take all but 2 dosages over the 2 years I was on treatment (not exactly 100%, but close enough dammit).  100% is a worthy goal, but it is not a reasonable one.  Just about everyone will skip a dosage at some point, and they shouldn't be made to feel guilty for it.  It happens.  You move on.  

I also agree with Robert, if he and his doctor have decided on a treatment regimen, (even if unconventional), then that's their business.  Plenty of people are on variations/alternative treatment to conventional wisdom, (some even on dual therapy), for a number of reasons.  If they understand and accept the risk and have a good reason for it, then so be it.  There is no one-size-fits-all approach to HIV treatment.

Link to UCSF site on adherence:

http://hivinsite.ucsf.edu/InSite?page=kb-03-02-09

Offline newt

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #32 on: May 29, 2007, 02:40:47 AM »
To address the original poster's proposition...

Taking meds 14 out of 15 days is 93% adherence, not 95%.

In all studies on adherence and outcomes, people in the 95%+ band are most likely to achieve undetectable viral load, people in the 85-94% significantly less likely than the 95% bunch. 

The proof of the meds is in the eating. The benchmark is consistently undetectable viral load, not taking meds on time.

- matt
"The object is to be a well patient, not a good patient"

Offline StrongGuy

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #33 on: May 29, 2007, 03:26:19 AM »
When I was on the PI I never missed - but now that I'm on Sustiva/Truvada I'm less "panicked" when I have because of the longer half-life of the drugs (though only missed once so far - time zone jet lag screwed me up).   

Mike
(who relies on his crackberry, I mean Blackberry, to keep on schedule)

« Last Edit: May 29, 2007, 03:30:30 AM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

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Offline sdcabincrew74

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #34 on: May 29, 2007, 04:08:44 AM »
Fine, ya'all can take your meds and aim for your 95% adherence rates.  I will take mine and aim for my 100%.  We all have different standards that we hold ourselves to.  And, in my mind, I will continue to believe that "almost" is not still not good enough.
The difference between an overnight and a layover is luck!

Offline aztecan

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #35 on: May 29, 2007, 10:32:28 AM »
Not having the luxury of experience others have on non-PI based regimens, I will only say Newt made a very valid point.

It doesn't matter a whit whether you do or don't adhere or what percentage if the viral load isn't suppressed.

The goal here isn't to one-up each other on adherence, nor browbeat someone who does things differently.

I have been undetectable for a while now, save that one breakthrough earlier this year when my viral load rose to 61. (That still bothers me to no end and I still believe that damn sloppy phlebotomist did it!)

What we all should be aiming for is beating the living shit out of the bug.

HUGS,

Mark

(Who probably shouldn't post this while still groggy from Sustiva.)
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline ACinKC

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #36 on: May 29, 2007, 11:59:56 AM »
Well I am definitely not part of the pill gestapo.  I do try and take mine everyday and would say im in the 98% range.  Ive missed maybe 4 times in 3 years (Christ has it really been that long).  All for different reasons.

Funny thing is, just last week I missed taking it in the morning (forgot, god love ADD) and the only reason I knew I missed was I didnt feel foggy when I got to work.  I was sharp and alert.  And I was all like, something is fucking OFF, what is it.  And THAT is when I recalled NOT popping my pills for the morning.  I let it go for the day, gave myself a break and felt pretty good.  But it did get me thinking about those who take their meds the exact minute they took their first pill, as I recall there is a member who has his watch set and pops those suckers no matter what.  Its just an entirely different personality than mine.  I am very laid back and carefree for the most part.   Not one who Goose Steps his ass to the bathroom to swallow the Atripla at 7:32pm every night.  I've never been much for those kinds, or any kinds of rules really.  But I do shoot for 100%, 98% is about what I've attained I guess maybe higher. 

Ok, I took THE FOG this morning and actually it kind of looks as tho this website is "breathing" right now, so, im done typing.... .  Those of you into OTHER/GODS pharmaceuticals know that of which I speak.....

LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline RobT

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #37 on: May 29, 2007, 07:01:07 PM »
I take my meds w/ me everywhere I go as a reminder. Just so I can remember to take them as perscribed if I EVER stay out l8r than expected. I rarely go out, as I am safe there; but I cannot stand not taking my meds w/ me. I just h8 the thought of taking my meds l8. I guess I am a bit uptight about it, but it is my way of caring for who is really important in my life, ME

Rob


Current meds: Atripla
VL: undetectable
CD4: 630

Offline Iggy

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #38 on: May 29, 2007, 07:10:24 PM »
Quote
I take my meds w/ me everywhere I go as a reminder. Just so I can remember to take them as perscribed if I EVER stay out l8r than expected. I rarely go out, as I am safe there; but I cannot stand not taking my meds w/ me. I just h8 the thought of taking my meds l8. I guess I am a bit uptight about it, but it is my way of caring for who is really important in my life, ME

My last ex was like this - except he was on a multi pill regime (and embarrassingly I don't remember) but he would carry this tote bag with him everywhere.  After 9/11 he became so paranoid that something was going to happen and prevent him from accessing his meds that he started to make stockpiles of them in several locations (work, home, family home, friends home, vacation home, etc) that it scared me to think this is what my future was going to be.

I'm gonna be on atripla when I start (if nothing better comes along before hand though I don't think I have that much time before I start meds) and frankly I should have no excuses to not have 100% adherence on a one pill a day regimen....and then I realized that I haven't bothered to take a multivitamin in about two weeks now.

I hope to be a strict follower to my regime, but I also hope never to become paranoid or lose focus of the medicines helping me live my life vs. living my life for the meds.  (Rob  - please note that  even though I used your quote as the springboard for my post I'm not trying to imply you are akin to my boyfriend's paranoia)

Offline allopathicholistic

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #39 on: May 29, 2007, 09:38:35 PM »
speaking only for myself, if i said i take my meds with 100% perfection i would be lying. it's the darn norvir that needs refrigeration that makes it tough otherwise i would just take my meds out with me if i know i'll be out past 9:30 (i take meds at night)

Offline Miss Philicia

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #40 on: May 30, 2007, 01:59:21 AM »
speaking only for myself, if i said i take my meds with 100% perfection i would be lying. it's the darn norvir that needs refrigeration that makes it tough otherwise i would just take my meds out with me if i know i'll be out past 9:30 (i take meds at night)

*sigh*

Please remember:  The new soft gelatin ritonavir capsules should be stored in a refrigerator if possible. However, refrigeration is not required if the capsules are used within 30 days and kept below 77 degrees Fahrenheit.

source

Basically if you're getting monthly refills of Norvir you do NOT need to keep them in the fridge.  Folks really need to learn this.  Are doctors telling you this WRONG information?  This is not the first time I've had to correct such a statement.  Yes, the keep it in the fridge at a pharmacy, but you do not need to at home UNLESS maybe in the summer months if your kitchen is wildly hot.  I really don't think putting norvir in a pill box even on a hot day for a night out on the town is going to effect it much unless it's sitting in a non-air conditioned car for hours and hours. 
"Iíve slept with enough men to know that Iím not gay"

Offline David_CA

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #41 on: May 30, 2007, 09:12:59 AM »
I've not missed a dose of Atripla.  Well, I kinda almost did, but I took it when I woke up and just changed that to the dosing time.  So, since Dec 1, 2006, I've not missed any doses of Atripla.  I know I've missed a dose or two of Bactrim, but I'm still at least 95% adherent to that.  Of course, taking one pill that really doesn't have a precise time or food requirement (just suggestions) makes it easy.  I'm sure that's one of the reasons Atripla is the 'preferred' regimen for those starting on HAART.

One thing that makes it easy is that I take my Atripla when I take my Adderall, which I really enjoy.  I'm very much a laid-back person, so I have to put myself on a schedule and follow it.  Like SD, I aim for 100%.  If, for some reason, I end up at 95%+, I'm sure I'll be o.k.  It's too bad I wasn't as 'anal' about condom usage, though! 

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline allopathicholistic

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Re: Your Med Regimen, Adherence and Acceptable Risk of Mutation
« Reply #42 on: June 02, 2007, 10:40:18 AM »
Please remember:  The new soft gelatin ritonavir capsules should be stored in a refrigerator if possible. However, refrigeration is not required if the capsules are used within 30 days and kept below 77 degrees Fahrenheit.

source

Thanks

 


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