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Author Topic: Non-Adherence to Meds  (Read 5303 times)

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Offline gemini20

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Non-Adherence to Meds
« on: May 14, 2012, 12:56:41 PM »
THIS IS MY OWN PERSONAL EXPERIENCE AND IS NOT A SUGGESTED ROUTE FOR OTHERS TO FOLLOW

However I am just putting this out there so others can read of my experience of adherence or rather non-adherence to my HIV meds and its consequences (or lack of).

So in 21 years of living with HIV Iíve been on meds in total for just under 6 years, which has been spread out across 13 years due to me taking treatment breaks.

Since 2009 when I restarted meds again I have been taking Prezista/Ritonavir only and it has maintained my viral load at undetectable and CD4 averaging around 420 (26.8%).

In February when I got my latest supply of my meds I decided to record how many doses I missed over the course of 30 days as I had no real idea if it was the occasional one or two or more.

I was shocked to discover that in 30 days I missed 10 days; and in the subsequent 30 days I missed 13; so over the course of two months I forgot or chose not to take more than a third of my meds.

I expected therefore that my latest blood results would be affected somewhat by my non-compliance but the reality was it hardly changed anything.

Numbers before - CD4 = 484 (29%) and viral load undetectable
Numbers after Ė CD4 = 482 (33%) and viral load = 137

Has my health been affected in anyway? Absolutely not; Iíve been perfectly well and healthy with not even the slightest signs of any ill health which has allowed me to continue to work relentlessly speaking at 48 schools in 10 weeks across the UK as well as holding down two other weekly jobs that I undertake for other people.

My doctor is fully aware of my non-compliance and advises me of the potential risks in the long-term and encourages me to try harder with my adherence. Whether I can ever achieve 100% remains to be seen.

Why am I telling others this? Because I think it is important that alternative perspectives are available for others to read about rather than just the general consensus on HIV information that abounds out in cyberspace.

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Alan_B

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Re: Non-Adherence to Meds
« Reply #1 on: May 14, 2012, 01:49:39 PM »
That difference is only short term though, drug companies don't spend billions on research and clinical trials to have a guess, non-adherence will effect you eventually if you continue like that.

I don't mean to preach, but I can't help it. Not everyone is an angel, I know I have missed a dose here and there over the last few months. But still, if you are getting them, take them. If you aren't reacting well to them and are being bothered by side effects then ask to switch to something else.

Rgds,

Alan.
Diagnosed - 01 Dec 2011 cd4 500
                  17 Jan 2012 cd4 520 vl 250k
                  02 Feb 2012 cd4 490 16% vl 167k - atripla
                  28 Jun 2012 cd4 610 24% vl 75
                       Jul 2012 cd4 870     Changed meds
                      Aug 2012 cd4 660 UD
                      Nov 2012 cd4 640 UD

"There is nothing wrong with going to bed with someone of your own sex. People should be very free with sex; they should draw the line at goats."  ~ Sir Elton John

Offline weasel

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Re: Non-Adherence to Meds
« Reply #2 on: May 14, 2012, 02:27:55 PM »


    Dear  Emma ,

                        You are playing Russian Roulette  with your life .

         At this stage you seem to find it amusing ?  , Not sure .

       But at what point will you say  "  Gee all I had to do is take my pills "

       Posts like this GIVE OTHER PEOPLE REALLY BAD IDEAS  !

       Just because you feel that it is alright does not make it so !

       I always fear  the day my MEDS will stop working ,  I AM  one of those

       people that have NEVER missed a dose !  I was  6 hours late ONCE !

       I have had  HIV  half my life and been on  MEDS  since  2005 !

        I do NOT  like your post  >:(

                                                                Weasel
 
" Live and let Live "

Offline sshortguy1

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Re: Non-Adherence to Meds
« Reply #3 on: May 14, 2012, 02:43:34 PM »
im sure everyone has missed a dose or 2 they say you can become resistant to protect themselves , i missed a week's worth of doses and i was fine and my test results were good the dr told me by the next test i go back 4 the results  my test will be undetectable had a friend that been on meds in 97 quit for 2 monthes for a liver test after the 2 monthes he's back on the same meds he was taking prior but everyone's different

Offline mecch

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  • red pill? or blue pill?
Re: Non-Adherence to Meds
« Reply #4 on: May 14, 2012, 06:38:07 PM »
Why don't you try 5 days on, 2 days off.
You mention the odds of reaching 100%, but with your track record that doesn't seem very "you". 
Are the missed doses completely on your whim, no pattern, no rhyme or reason?
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline sshortguy1

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Re: Non-Adherence to Meds
« Reply #5 on: May 14, 2012, 07:46:09 PM »
i left town and forgotten them

Offline Hellraiser

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Re: Non-Adherence to Meds
« Reply #6 on: May 14, 2012, 07:59:49 PM »
I missed 4 doses in a row and almost had a come apart.

Offline anniebc

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Re: Non-Adherence to Meds
« Reply #7 on: May 14, 2012, 08:27:17 PM »
Quote
relentlessly speaking at 48 schools in 10 weeks across the UK


Hi Gemini

What do you talk about in the schools? and what age group do you talk to?..just curious.

Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Non-Adherence to Meds
« Reply #8 on: May 14, 2012, 08:42:19 PM »
THIS IS MY OWN PERSONAL EXPERIENCE AND IS NOT A SUGGESTED ROUTE FOR OTHERS TO FOLLOW



In February when I got my latest supply of my meds I decided to record how many doses I missed over the course of 30 days as I had no real idea if it was the occasional one or two or more.


Why am I telling others this? Because I think it is important that alternative perspectives are available for others to read about rather than just the general consensus on HIV information that abounds out in cyberspace.


Amazing that you are able to remember to write down when you forget to take your meds.....  but, can't "remember" to take your meds.

Also, you start your post by saying that by your post your are not suggesting this as a route for others, but then close your post saying that you think it is important that alternate perspectives are available for others to read about...

Penny wise and pound foolish comes to mind.
And, BTW, that beginning rise in VL might be something you want to consider, when "forgetting" to take your meds, but remembering to write down when such memory lapses occur.

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline skeebo1969

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  • Posts: 5,706
Re: Non-Adherence to Meds
« Reply #9 on: May 14, 2012, 08:51:17 PM »



  I wonder what would happen if I only took one dose on Sundays after church.
I despise the song Love is in the Air, you should too.

Offline randym431

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  • Posts: 1,125
Re: Non-Adherence to Meds
« Reply #10 on: May 15, 2012, 06:54:43 AM »
Well heres something for everyone on meds to consider...
I myself started meds in 2005 with VL 100,000 and cd4 of just 83. I had signs of KS, as well as several skin issues. Had lost 50 pounds. I then started meds one month later after that first DR appointment back in 2005. I have never missed a dose. Today I have been undetectable (and with he new standards) for years, and my last labs shows my cd4 is now 987. My doctor stated I was basically "cured", however he said that doesn't mean I can stop meds or skip doses.
He swears by adherence. Im his poster boy on that.
I now see the doctor and do labs only on a bi-yearly basis, the doctors suggestion.
Same meds since starting meds, still working a normal schedule, no health issues, KS never advanced beyond a few small spots that faded away, and have not had any side effects from the two pills I take daily.
It has been a fantastic journey to have gotten to this level after only five years.
Adherence absolutely does make the difference.

Offline J.R.E.

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  • Posts: 7,251
  • Joined Dec-2003 Living positive, since 1985.
Re: Non-Adherence to Meds
« Reply #11 on: May 15, 2012, 07:41:31 AM »

I was shocked to discover that in 30 days I missed 10 days; and in the subsequent 30 days I missed 13; so over the course of two months I forgot or chose not to take more than a third of my meds.


Emma


I don't know,.... I am having a difficult time with this thread.  How does one miss 10 days of meds one month and 13 days of meds the following month.

I understand that you have posted on this before,( years ago) but I just don't get it.

Your avatar says: "Be an activist".  How bout being pro active in your own health. I am saying. . this, because I am concerned.  We've been through this before, and I was concerned the last time.

Take care of yourself----Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline aztecan

  • Member
  • Posts: 5,404
  • 29 years positive, 57 years a pain in the butt
Re: Non-Adherence to Meds
« Reply #12 on: May 15, 2012, 09:31:05 AM »
Hey Emma,

Good to see you.

I know you know I am a "start early and be adherent" type of guy, so no need to rehash that topic.

But I do wonder about the long-term effect on you that could pop up with your on again, off again therapy. I keep seeing people who have been doing well showing up with a variety of things that are not always HIV related, but seem to have been "encouraged," if you will, by the virus and its effect on the body in the long term.

Take care of yourself.

HUGS,

Mark
« Last Edit: May 15, 2012, 02:16:18 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline newt

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  • Posts: 3,886
  • the one and original newt
Re: Non-Adherence to Meds
« Reply #13 on: May 15, 2012, 10:57:03 AM »
The proof of the therapy is not in the eating of the pills but in maintaining and sustaining a suppressed viral load.

I would like to thank Emma for being so candid. Not everyone is going to score 100% (or even 95%) on the pill taking, and it's good to know even then good results can be achieved (provided you have the right kind of combination).

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

Offline sshortguy1

  • Member
  • Posts: 118
Re: Non-Adherence to Meds
« Reply #14 on: May 15, 2012, 12:14:40 PM »
i got a question to the result of doses doses etc , there was a guy i was reading about on the poz magazine site that contracted hiv in 1984 he moved away isolated himself away from his family and friends when his doctor told him get your finances funeral etc in order but fought it and he was like he's still here 27 yrs later what was that about ? to me it's what you think ,
they live b/c they want to live etc

Online Jeff G

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  • How am I doing Beren ?
Re: Non-Adherence to Meds
« Reply #15 on: May 15, 2012, 12:18:56 PM »
i got a question to the result of doses doses etc , there was a guy i was reading about on the poz magazine site that contracted hiv in 1984 he moved away isolated himself away from his family and friends when his doctor told him get your finances funeral etc in order but fought it and he was like he's still here 27 yrs later what was that about ? to me it's what you think ,
they live b/c they want to live etc

Whaaat ? . People live because they are on meds or long term non progressors not because they think happy thoughts .

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Non-Adherence to Meds
« Reply #16 on: May 15, 2012, 01:20:07 PM »
The proof of the therapy is not in the eating of the pills but in maintaining and sustaining a suppressed viral load.

I would like to thank Emma for being so candid. Not everyone is going to score 100% (or even 95%) on the pill taking, and it's good to know even then good results can be achieved (provided you have the right kind of combination).

- matt


Unless this can be replicated in 1000 other patients is completely irrelevant, and you fully well know this. Stating otherwise is the heigh of being daft. I could provide an anecdotal lovely story about how snorting dust off of the top of my Eames desk causes my cd4 counts to go up by 1,000 but what's the point of stating it?

srsly
"Iíve slept with enough men to know that Iím not gay"

Offline sshortguy1

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Re: Non-Adherence to Meds
« Reply #17 on: May 15, 2012, 03:25:01 PM »
jg then u tell us how did he survive ? they didn't have much medication that could help it was trial and error back then , i think u need to go back and read about it back in 1984 there wasn't much of any medication out there from the sources on sites they didn't start till 1987

Offline Miss Philicia

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Re: Non-Adherence to Meds
« Reply #18 on: May 15, 2012, 03:34:55 PM »
jg then u tell us how did he survive ?

Not every patient progresses to AIDS in the same time frame. That's not rocket science, you know. There are people here who were diagnosed with HIV in 1985 and still have never had to take any medications for it. Their body controls the virus more or less effectively on its own.
"Iíve slept with enough men to know that Iím not gay"

Offline sshortguy1

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Re: Non-Adherence to Meds
« Reply #19 on: May 15, 2012, 03:35:35 PM »
jg i learned by doing alot of reading maybe this will help u on this subject

 The history of HIV

The HIV time line began early in 1981. In July of that year, the New York Times reported an outbreak of a rare form of cancer among gay men in New York and California. This "gay cancer" as it was called at the time was later identified as Kaposi's Sarcoma, a disease that later became the face of HIV/AIDS. About the same time, emergency rooms in New York City

Offline sshortguy1

  • Member
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Re: Non-Adherence to Meds
« Reply #20 on: May 15, 2012, 03:39:20 PM »
miss p that is correct , to some they don't ever need to b/c their immune system  can keep it at bay without killing , they are known as carriers so few and far between

Online Jeff G

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  • How am I doing Beren ?
Re: Non-Adherence to Meds
« Reply #21 on: May 15, 2012, 03:40:27 PM »
jg then u tell us how did he survive ? they didn't have much medication that could help it was trial and error back then , i think u need to go back and read about it back in 1984 there wasn't much of any medication out there from the sources on sites they didn't start till 1987

I was positive back then myself so no need for me to go back and look . I'm not trying to argue with you but I know first hand you need more than a good attitude to survive HIV . If a strong will to live was enough I would be having dinner tonight with many friends who didn't survive .   

   

Offline sshortguy1

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Re: Non-Adherence to Meds
« Reply #22 on: May 15, 2012, 04:06:02 PM »
i didn't say poz thinking was the only thing

Offline Miss Philicia

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Re: Non-Adherence to Meds
« Reply #23 on: May 15, 2012, 05:23:05 PM »
wat
"Iíve slept with enough men to know that Iím not gay"

Offline emeraldize

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Re: Non-Adherence to Meds
« Reply #24 on: May 15, 2012, 05:28:04 PM »
ditto, or duhto, I'm having a hard time following this thread, too.

Offline Rev. Moon

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Re: Non-Adherence to Meds
« Reply #25 on: May 15, 2012, 05:39:16 PM »
jg i learned by doing alot of reading maybe this will help u on this subject

 The history of HIV

The HIV time line began early in 1981. In July of that year, the New York Times reported an outbreak of a rare form of cancer among gay men in New York and California. This "gay cancer" as it was called at the time was later identified as Kaposi's Sarcoma, a disease that later became the face of HIV/AIDS. About the same time, emergency rooms in New York City


ROLLIN' ON TEH FLO' LAUGHIN' MY FACKEN' ASS OFF

You... You... You... Are trying to educate Jeff (or any of us for that matter) on the history of AIDS????!!!!

Chile please, some people here were living with this virus back in the day when the condition was medically/popularly known as GRID (go look it up).

YOU need to check yosseff.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Non-Adherence to Meds
« Reply #26 on: May 15, 2012, 05:47:36 PM »
facepalm.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Solo_LTSurvivor

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Re: Non-Adherence to Meds
« Reply #27 on: May 15, 2012, 05:48:45 PM »

ROLLIN' ON TEH FLO' LAUGHIN' MY FACKEN' ASS OFF

You... You... You... Are trying to educate Jeff (or any of us for that matter) on the history of AIDS????!!!!

Chile please, some people here were living with this virus back in the day when the condition was medically/popularly known as GRID (go look it up).

YOU need to check yosseff.

Thank you, Rev.  Someone needed to do it and I'm glad it was you.

I came quite close to sharing my experience about the good ol' days of being fearful of hearing those dreaded words (you have  ___) because I can remember having a phone conversation with my doctor in 1981 about needing to come in and the word blood in the same sentence that scared me shitless. 

Needless to say, I didn't get tested until quite some time later. (But) I proudly wear my badge of being one of many who tried to take AZT back in the day unlike certain historians touting the power of positive thinking as a cure on this thread.

facepalm.

Back to your regularly scheduled discussion  ;)
« Last Edit: May 15, 2012, 05:52:57 PM by Solo_LTSurvivor »
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline newt

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Re: Non-Adherence to Meds
« Reply #28 on: May 15, 2012, 06:21:41 PM »
Quote
Unless this can be replicated in 1000 other patients is completely irrelevant, and you fully well know this. Stating otherwise is the height of being daft.

I disagree.

For one, it has been replicated in loads of studies, some more depressing/encouraging about 95% adherence being enough/possible.

For two, the target is sustained viral suppression not adherence.

Clearly I agree the best shot of achieving suppressed viral load, especially when starting meds,  is to take a full combination of meds on time every day (or however often you have to do to comply with your prescription), and that the risk of resistance (and therefore more complicated pill taking) increases as your adherence decreases.

But if your adherence is less than perfect and you still maintain a fully suppressed viral load, you are getting enough drugs. Bingo, QED etc.

I do not recommend experimenting with adherence, but some people for various reasons, do have problems with this and it is wrong in my book to present taking your meds less than perfectly as a disaster. It has risks. Serious risks. But sometimes it is enough. By all means take steps to improve less than 95% adherence, but if you are missing doses and consistently getting  good results perhaps don't beat yourself up too much.

If admitting being non-adherent is a taboo here, this needs to be broken. Less than 95% adherence is common. People need a space to discuss it freely.

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

Offline Buckmark

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Re: Non-Adherence to Meds
« Reply #29 on: May 15, 2012, 08:05:21 PM »
THIS IS MY OWN PERSONAL EXPERIENCE AND IS NOT A SUGGESTED ROUTE FOR OTHERS TO FOLLOW

I couldn't agree more.

Quote
Why am I telling others this? Because I think it is important that alternative perspectives are available for others to read about rather than just the general consensus on HIV information that abounds out in cyberspace.

I'm not clear on that alternative perspective that you are presenting / espousing?  That it's OK to not take meds as recommended, and yet you'll still be OK?  Just how far off the recommending dosing / schedule can you go, and still be OK?  If you don't know the answer to that question, then your alternative perspective is at best hot air, and at worse dangerous to others.

Yes, everyone has slip-ups and moments of forgetfulness.  But you need to maintain an awareness of your adherence, and try to improve it when necessary.  "Taking it when I remember it" is hardly an effective medication dosing regimen.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Buckmark

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Re: Non-Adherence to Meds
« Reply #30 on: May 15, 2012, 08:29:07 PM »
But if your adherence is less than perfect and you still maintain a fully suppressed viral load, you are getting enough drugs. Bingo, QED etc.

The goal is to maintain a therapeutic levels of drugs in the body the consistently suppress viral replication.  How do you recommend people do that?  Popping a pill whenever one remembers won't cut it.  There's got to be some regular dosing. 

The problem is that post like Emma's encourage a "if it feels good, do it" approach to taking meds.  I'm surprised to see you supporting that.   

Quote
I do not recommend experimenting with adherence, but some people for various reasons, do have problems with this and it is wrong in my book to present taking your meds less than perfectly as a disaster. It has risks. Serious risks. But sometimes it is enough. By all means take steps to improve less than 95% adherence, but if you are missing doses and consistently getting  good results perhaps don't beat yourself up too much.


That's what is missing here -- a discussion of how to improve adherence, and consistency.   As I said above, it's a given that no one is going to be perfect.

Quote
If admitting being non-adherent is a taboo here, this needs to be broken. Less than 95% adherence is common. People need a space to discuss it freely.

Barbara, please.  There are countless threads on the forums where people have discussed adherence issues.  There's no taboo.  Let's not create the specter of one.




"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
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Offline mecch

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Re: Non-Adherence to Meds
« Reply #31 on: May 15, 2012, 08:33:00 PM »
Gee everyone is piling on the OP, and each other, but couldn't we be patient now and let the OP have a chance to reply to any of these thoughts, as she wishes.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline mstevens

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Re: Non-Adherence to Meds
« Reply #32 on: May 15, 2012, 08:42:10 PM »
Good for you OP. Your life, live it the way you want to. I wouldn't attack you in any way for your choices. It's the reason behind your choice that I'm not sure I actually understand.
Some of us however would never, ever risk it. Why you would do that is beyond me. And I'm not 100% adherent. In 120 days of HAART I've forgotten to take my pills twice and double-dosed by mistake once. So I accept that there's room for a bit of flexibility but just so that you don't panic when you make the occasional mistake.


Online Jeff G

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Re: Non-Adherence to Meds
« Reply #33 on: May 15, 2012, 08:53:28 PM »
Gee everyone is piling on the OP, and each other, but couldn't we be patient now and let the OP have a chance to reply to any of these thoughts, as she wishes.

I'm surprised you and others feel like there is " piling on " going on in this thread . This thread seems like the typical exchange of ideas and discussion of diffrent opinions we do everyday here .

As far as I can see everyone is free to reply and its not like we need to halt the discussion until the OP or anyone else chooses to participate .   

Offline anniebc

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Re: Non-Adherence to Meds
« Reply #34 on: May 15, 2012, 11:01:33 PM »
Good for you OP. Your life, live it the way you want to.

I have no problems with the OP not taking her meds or living her life the ways she wants to, I couldn't give a toss...what I do have a problem with is her posting about it and then people coming in to tell her how wonderful she is for doing so.

Even more disturbing is that she is posting in a forum filled with HIV+ members who are on disability and who are living week to week, or day to day in some case, because they can't afford their Medication or treatment, and have no idea when their next dose will arrive, and in some case these people are out begging for surplus meds because they have no money to pay for insurance.

It all very well for her to be sitting in the UK and accepting her prescriptions and then throwing the meds in a cupboard because she can't be bother taking them or conveniently forgets to take them...because she is not paying for the bloody Meds, and as for her "48 relentless talks" I hate to think what she is telling the kids of today, and if her talks are about HIV what the hell sort of message is she giving them.

Jan >:(
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Offline Rev. Moon

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Re: Non-Adherence to Meds
« Reply #35 on: May 15, 2012, 11:06:03 PM »
I'm surprised you and others feel like there is " piling on " going on in this thread . This thread seems like the typical exchange of ideas and discussion of diffrent opinions we do everyday here .

As far as I can see everyone is free to reply and its not like we need to halt the discussion until the OP or anyone else chooses to participate .   


I totally agree. 

Emma chose to share this info about her less than optimal level of adherence.  She knew that there would be responses from people who would not approve or agree, myself included.  But that's her life, and she can do as she wishes. 

It does bother me a little however that this anecdote comes from someone who is an HIV activist and educator.

Hopefully anyone who reads about her particular experiences, and who is not very knowledgeable about these matters, thinks very thoroughly about the possible consequences before they even consider a level of adherence that is lower than what is medically recommended.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Miss Philicia

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Re: Non-Adherence to Meds
« Reply #36 on: May 16, 2012, 12:58:17 AM »
I disagree.

For one, it has been replicated in loads of studies, some more depressing/encouraging about 95% adherence being enough/possible.

For two, the target is sustained viral suppression not adherence.

Clearly I agree the best shot of achieving suppressed viral load, especially when starting meds,  is to take a full combination of meds on time every day (or however often you have to do to comply with your prescription), and that the risk of resistance (and therefore more complicated pill taking) increases as your adherence decreases.

But if your adherence is less than perfect and you still maintain a fully suppressed viral load, you are getting enough drugs. Bingo, QED etc.

I do not recommend experimenting with adherence, but some people for various reasons, do have problems with this and it is wrong in my book to present taking your meds less than perfectly as a disaster. It has risks. Serious risks. But sometimes it is enough. By all means take steps to improve less than 95% adherence, but if you are missing doses and consistently getting  good results perhaps don't beat yourself up too much.

If admitting being non-adherent is a taboo here, this needs to be broken. Less than 95% adherence is common. People need a space to discuss it freely.

- matt


Well, that's fine I guess -- but I still find this post a bit of bullshit. To each their own I suppose.
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Offline Miss Philicia

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Re: Non-Adherence to Meds
« Reply #37 on: May 16, 2012, 01:00:09 AM »
I have no problems with the OP not taking her meds or living her life the ways she wants to, I couldn't give a toss...what I do have a problem with is her posting about it and then people coming in to tell her how wonderful she is for doing so.

Even more disturbing is that she is posting in a forum filled with HIV+ members who are on disability and who are living week to week, or day to day in some case, because they can't afford their Medication or treatment, and have no idea when their next dose will arrive, and in some case these people are out begging for surplus meds because they have no money to pay for insurance.

It all very well for her to be sitting in the UK and accepting her prescriptions and then throwing the meds in a cupboard because she can't be bother taking them or conveniently forgets to take them...because she is not paying for the bloody Meds, and as for her "48 relentless talks" I hate to think what she is telling the kids of today, and if her talks are about HIV what the hell sort of message is she giving them.

Jan >:(

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Offline leatherman

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Re: Non-Adherence to Meds
« Reply #38 on: May 16, 2012, 01:29:12 AM »
In 120 days of HAART I've forgotten to take my pills twice and double-dosed by mistake once. So I accept that there's room for a bit of flexibility but just so that you don't panic when you make the occasional mistake.
actual studies, not anecdotal evidence, have shown that having 95% or greater maintains proper levels of meds in a person's system. since you've barely had a 2% error rate, you still easily squeak into the 95% or greater range  ;)  :D
leatherman (aka mIkIE)


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Offline leatherman

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Re: Non-Adherence to Meds
« Reply #39 on: May 16, 2012, 01:51:23 AM »
The proof of the therapy is not in the eating of the pills but in maintaining and sustaining a suppressed viral load.
try re-arranging what you said, and you'll see that your useage of the negative ("not") seems to be in conflict.

"The proof of the therapy is maintaining and sustaining a suppressed viral load BY the eating of the pills."
the proof actually IS in taking the pills because without the pills the viral load is never suppressed. "Eating pills" haphazardly, as the OP suggests, is not necessarily conducive to suppressing viral load at all.

What Emma's story proves is what has always been known. Medical science prescribes generic doses of medications to patients based on extensive study of how effective a generalized dosage is for the majority of patients. Is that dosage optimal for everyone? Of course not. (hello. can I also remind people about AZT? god knows I and many others were overdosed on that!) From aspirin to HAART it has always been the case that the suggested dosages are not personalized optimized doses. However unless one pays for their own drug level monitoring, the only true (scientific) guidelines we have to follow - and should speak of to other HIV positive people - are the generic ones produced through rigorous scientific medical studies.

I agree with the sentiment of others, that although it may be true that "some" are able to get by with no meds or by ill-adhering to their medicines, to suggest that might be a situation that would be worth the vast majority of us even considering is very disruptive and of no instructional use.

What do I care for the 1 in a billion case who can take their medications haphazardly and seem to have no ill effects? I would venture to say that to 99% of us, a single case like this is as irrelevant as the supposed "Berlin cure" is - a medical oddity of little practical use to any of us. It sure doesn't encourage adherence - which we know is a problem that needs to be addressed.

IS NOT A SUGGESTED ROUTE FOR OTHERS TO FOLLOW

Why am I telling others this? Because I think it is important that alternative perspectives are available for others to read about rather than just the general consensus on HIV information that abounds out in cyberspace.
your words seem to be in conflict too. You first say this is not a suggestion, yet end with suggesting that your "alternative perspective" is worthy of consideration. So are you NOT suggesting we follow your haphazard dosing scheme or are you suggesting we put some merit to your case and perhaps follow your lead?

My own ASO has lost nearly half a dozen patients in the last 2 years because of poor adherence. (Sadly we lost one about a month ago and another just last week.) Those patients believed that they could just take their meds when and where they felt like it and everything would be ok. Luckily you are still with us; however I can counter that your "alternative perspective" about adherence, more often that not, ends in death.

by the way, this 95% and greater adherence marker to reach effective treatment is not just some "general consensus on HIV information that abounds out in cyberspace" but actual science proven in various studies with various medications. To treat yourself as an unscientific experiment with neither rigid controls (missing x doses every x days) nor monitoring (therapeutic drug level monitoring or measuring for other side effects), and then suggest that this might also be a way for others to deal with their HIV infection strikes me as not good science nor good advice.
leatherman (aka mIkIE)


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

Offline newt

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Re: Non-Adherence to Meds
« Reply #40 on: May 16, 2012, 05:42:35 PM »
If the amount of meds you take consistently suppresses your viral load then you are taking enough meds. Period. For you. Period. The goal is not taking the meds, its a suppressed viral load, and perhaps more widely the clinical outcome of maintaned health (which is different).

Taking the meds as directed consistently offers the highest chance, but not the only chance, and not a guaranteed chance, of achieving this.

I am in favour of offering hope rather than total doom for people who take meds less than perfectly. And it is hope not confidence. Life with HIV is difficult enough without feeling a total failure cos you ain't 100% signed up to the HIV meds project.

After all, FOTO,  taking efavirenz based combos 5 days on/2 off is basically no more than regular non-adherence sanctioned by a small-scale study.

As for the 95% adherence rate = success as chapter and verse in 2012, there are many studies in favour and many against

Modern HIV treatment can work well with adherence below 95%
http://www.aidsmap.com/Modern-HIV-treatment-can-work-well-with-adherence-below-95/page/1432374/

is a useful report in that is shows the rather steep, but not total, drop in success that comes with adherence below 95% of doses. And that, with modern meds, 90% might be as good as 95% (a figure principally based on a seminal but now old study done with old drugs).

 -matt
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Online Jeff G

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Re: Non-Adherence to Meds
« Reply #41 on: May 16, 2012, 07:23:57 PM »
Well Newt ... you have presented your case brilliantly and have convinced me that taking your meds any other way than what the doctor ordered is a horrible idea , congratulations , I think .  ;) .

Offline Joe K

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Re: Non-Adherence to Meds
« Reply #42 on: May 16, 2012, 10:07:04 PM »
I have no problems with the OP not taking her meds or living her life the ways she wants to, I couldn't give a toss...what I do have a problem with is her posting about it and then people coming in to tell her how wonderful she is for doing so.

Even more disturbing is that she is posting in a forum filled with HIV+ members who are on disability and who are living week to week, or day to day in some case, because they can't afford their Medication or treatment, and have no idea when their next dose will arrive, and in some case these people are out begging for surplus meds because they have no money to pay for insurance.

It all very well for her to be sitting in the UK and accepting her prescriptions and then throwing the meds in a cupboard because she can't be bother taking them or conveniently forgets to take them...because she is not paying for the bloody Meds, and as for her "48 relentless talks" I hate to think what she is telling the kids of today, and if her talks are about HIV what the hell sort of message is she giving them.

Jan >:(

I have a real concern with a post such as this, because it implies that you can toss your adherence aside, but somehow you will just be fine.  I'm not sure what message the OP is trying to send, but it's not a message that I could support.  The science tells us that adherence provides the greatest chance for people to live long and healthy lives with HIV.  While Newt offers a great explanation regarding drug levels, etc., the underlying message remains: you don't have to be that adherent and maybe you will still be fine.

Sorry, that is not a message that this forum should support or possibly even condone.  If the OP had serious issues that prevented her from taking her medication as indicated, then the message is totally different.  Instead, the message is the OP simply cannot remember to take her meds, but it's working fine for her.  Sheer dumb luck is what I call it. However, what truly grates at me, is the idea that others will read this post, thinking that adherence just isn't that big of a deal, because if the OP can do it, anyone can.

This is not a message that any pozzie, let alone an HIV educator should ever be preaching.

Joe

Offline denb45

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Re: Non-Adherence to Meds
« Reply #43 on: May 16, 2012, 10:26:25 PM »
Well we all know what happens when you don't take your meds, , you get sick, and you get a bunch of OIs then you DIE, I've seen this before, it's not a very good looking site for anybodies eyes, life or death ,but PLEASE don't play  w/ fire you will always get Burned......
« Last Edit: May 16, 2012, 10:28:36 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Raf

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Re: Non-Adherence to Meds
« Reply #44 on: May 16, 2012, 10:39:53 PM »
There's no need for someone reminding me to take my meds. I only need to remember my hideous look when I had wasting syndrome+molluscus contagious when I was Dx (with a CD4 count of 92. Diagnosed with teh aids right off the bat).

I feel so lucky to have access to free meds in my country, whenever I see threads about people not having access to HIV meds (USA or any country). How someone would skip a dose of the meds that saves their life (I know, sometimes one have slips, I had to wait 3 days on january just to get my meds, but come on, 2 weeks and you have your meds right there??)...is just beyond me, I don't understand it. Of course, it's their life, and they can put a shotgun on their mouths if they like...but I'll never support it.
« Last Edit: May 17, 2012, 12:14:35 AM by Raf »
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - today)

Offline Solo_LTSurvivor

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Re: Non-Adherence to Meds
« Reply #45 on: May 16, 2012, 11:56:24 PM »
I dunno.  Maybe the OP had a valid reason in sharing her experience as it seems to be working for others  ::)

sorry to hear about those with negative side effects the only thing i have was tend to been alittle sluggish, other than that been doing good from i seen from the the very beginng is pank attacks worrying too much of the side effects even though i don't take mine daily which i should but my dr said my test results are ridiculous good cd4 going up v/l going down test results in 2 weeks should be undetectable
don't equate intelligence with lack of masculinity
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____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
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Still UD after all these years

Offline spacebarsux

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Re: Non-Adherence to Meds
« Reply #46 on: May 17, 2012, 03:25:02 AM »
....the underlying message remains: you don't have to be that adherent and maybe you will still be fine.


I refrained from commenting on this thread since I'm not yet on meds, but I couldn't help thinking that the logic (or the danger) of the OP can be likened to someone saying: "I smoked a pack a day for most of my life and lived till a hundred. Make of it what you will."
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline wolfter

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Re: Non-Adherence to Meds
« Reply #47 on: May 17, 2012, 04:29:38 AM »
I've been vocal in the past about my views on breaks and adherence so I won't rehash that.  What I'm concerned about are the "newbies" whom might arrive in these forums and read this alternative approach to taking meds.  ALL of us LTS know the correct route to take and aren't vulnerable to unscientific approaches.

I know an older gentleman at our post who starts drinking every morning and smokes like a chimney, but scientific data shows that for the majority of us, we will suffer consequences from those actions.  Just because he had "lucked out", doesn't mean we should conclude that's an appropriate course of action.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline anniebc

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Re: Non-Adherence to Meds
« Reply #48 on: May 20, 2012, 02:41:33 AM »
it would seem Gemini has abandoned her thread...don't you just hate that!!

Jan
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Offline Joe K

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Re: Non-Adherence to Meds
« Reply #49 on: May 20, 2012, 02:18:31 PM »
it would seem Gemini has abandoned her thread...don't you just hate that!!

Jan

In a way, I can't blame her.  I think the messages got confused in that we promote adherence to HAART, however some people can still flourish, even with less than optimal adherence, whether intentional or not.  To confuse matters more, the OP is an HIV educator and it caused some folks to question what she may be presenting regarding meds adherence.

My hope is that people who read this post, will understand that adherence is the only thing we know that works.  However, that is not to say that folks who are less than adherent, say because of side effects, cannot also thrive, it's just you don't want to take that risk, unless it's absolutely unavoidable.

Joe 

Offline anniebc

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Re: Non-Adherence to Meds
« Reply #50 on: May 20, 2012, 08:39:07 PM »
People start thread because they are up for a good old debate, they don't normally write about a touchy topic like adherence and then leave..but then again that could just be me.

Aroha
Jan :-*
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