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Author Topic: Tricks to start/maintain adherence  (Read 2244 times)

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Offline le_liseur

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Tricks to start/maintain adherence
« on: March 06, 2012, 08:54:24 PM »
I've been wondering if any of you, who are already on meds or thinking about starting soon, had or have (or whatever the verb tense should be in English?) a trick to help you be adherent with treatment. Sometimes, we might simply not have the time to think about starting or not with treatment if our health is in bad shape, and sometimes, we might be in so-far good condition, but for some reasons, feel like starting treatment before getting bellow 500CD4.

My doctor is starting to see how I'd feel about starting treatment in the coming months/next year, tho I do not "have" to do it right now. My CD4 is of around 1,000 and my VL is at around 8,000. I just started a relationship with a negative partner, we play safe, but I guess it would "feel" even more safer if I was UD. And, on a long term view, I see the benefits of starting meds now to help my body against inflammation and so on.

The only thing is I am keeping very busy with work, school, research, partying, and... life in general. I have never been on any daily treatment so far, so I wonder how I would be regarding adherence. I was thinking about testing myself and starting to do some placebo trick, to see if I could be able to adapt my "schedule" to a daily treatment. Since I am terrible with agendas, alarm clocks and such, I thought it would be wise to start a treatment routine without taking actual pills, and incorporate this routine to my everyday life... At what time is it usual to take treatment? Before sleep?

Do anyone of you already did that, or had other ways to adjust with adherence? Or am I just a weirdo wondering about things not so important? hehe

Offline emeraldize

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Re: Tricks to start/maintain adherence
« Reply #1 on: March 06, 2012, 09:06:00 PM »
Hi Le,

No tricks, but a couple of practical suggestions. Get a pill box and pre-load your meds once a week. I find this essential -- like you I'm not a pilltaker. There are times I'm so busy, I've actually questioned whether I took my meds or not. The pillbox gives you that answer.

I didn't practice with jelly beans in an effort to incorporate pill-taking in my life - some people do that. For me, it's best to just jump in. I picked a date I could remember easily so I could always recall when I started and because mine is a twice a day regimen, I try to space it evenly twelve hours apart.

And, yes, sometimes I screw up and travel can mess me up, but I make every effort to keep it a true routine. I don't know of anyone who hasn't f'd up on a pilltaking routine whether HIV or other meds, but not whipping yourself over a foul up is important, too. Get back on track as fast as you can. I figure less whippings greater likelihood of adherence.

I'm sure you'll get replies from others. I'm a rookie at 1.5 years on meds.

Offline mecch

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Re: Tricks to start/maintain adherence
« Reply #2 on: March 06, 2012, 09:25:07 PM »
Can you pay your rent on time?  Do you buy food every week? Do get to work on time? Do you schedule the partying your want?  Do you do whats necessary at school?

If you decide to start, being adherent to HAART might not be as challenging as you fear, after all. You seem to have a good head on your shoulders.

Pill box or just count out your pills for a week into a bottle or little bowl or something and you'll see if you are taking them, or not, pretty quickly.  As I said, if you decide you want the advantages of HAART, I don't see why you wouldn't take the pills, unless there is some sort of psychological block.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Assurbanipal

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Re: Tricks to start/maintain adherence
« Reply #3 on: March 06, 2012, 09:39:41 PM »
If you want to practice, perhaps you might start with a daily multivitamin.

The main issue is to figure out how you can best establish a drug habit  (as it were  ;)  ).  Is there something you do daily that you can associate with meds?

Me, I keep the meds in my sock drawer -- because I always wear new socks each day.  Other people keep them with breakfast supples. 

Best to you
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline denb45

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Re: Tricks to start/maintain adherence
« Reply #4 on: March 06, 2012, 09:48:58 PM »
I just take my Meds in the AM with something to eat, then again @ bedtime w/ a very light snack, been doing it that way for the last 25 yrs. seems to work well for me  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: Tricks to start/maintain adherence
« Reply #5 on: March 06, 2012, 10:16:01 PM »
pill box

also a pill fob for those occassions when I'm out and about and nowhere near my med supply.


just remember to use these every so often and replace them so that they aren't too old.
leatherman (aka mIkIE)


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

Offline forrest

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Re: Tricks to start/maintain adherence
« Reply #6 on: March 06, 2012, 11:49:33 PM »
Where do you get those at Leatherman?  Maybe they are easy to find.... I just haven't looked yet... but that is a great idea!!
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline leatherman

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Re: Tricks to start/maintain adherence
« Reply #7 on: March 07, 2012, 12:20:21 AM »
Where do you get those at Leatherman?  Maybe they are easy to find.... I just haven't looked yet... but that is a great idea!!
walmart. LOL
usually in the aisles right near the pharmacy, reading glasses, etc

mine is on my keychain. I also have a 4-slot-a-day pill case (morning, lunch, dinner, evening). With only 3 pills a day, I can put a month's worth in one container. If I haven't used the ones in the fob while out during the month, then I take those on the day that I refill the pill case, and I refill the fob also. In this way I only have to spend a few minutes each month dividing out a month's worth of pills and then rest of the time I just take my pills instead of having to worry or think much about them. ;)

as far as pill containers, check with your doctor, as sometimes they get samples. Also if there's a festival in your area during the Spring or Summer (like CoolFest, SummerFest etc) check out the vendor exhibition tables for the local health care agencies (like the hospitals etc). Sometimes they give away pill cases and fobs, along with other fun stuff like antibacterical hand sprays and pedometers, etc. Or if you attend any HIV/STD etc educational conferences, you'll probably find some pharma rep there passing out pill containers of all sorts of sizes and shapes.
leatherman (aka mIkIE)


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

Offline J.R.E.

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Re: Tricks to start/maintain adherence
« Reply #8 on: March 07, 2012, 01:08:03 AM »
I've been wondering if any of you, who are already on meds or thinking about starting soon, had or have (or whatever the verb tense should be in English?) a trick to help you be adherent with treatment.

Hi,..


For me, I wouldn't call it a trick to be adherent to the meds.  It's more of a mind-set.  You need to realize, that most likely once you start meds, you will stay on them. If your adherant to your meds, and take them as you should, there will be much less chance of becoming resistant to the meds, and causing possible problems down the road.

 This is the way, you should be thinking about it, and if you think this way about it, you will most likely be very adherant to your medication, and take them when you supposed to, with very few missed or late doses.

Adherance is critical to the meds working properly.  I knew this before starting on meds,( that starting meds is for my survival), so this is the mind-set that I developed.  There will be times, when you may miss a dose, or be late... this is going to happen.

As others mentioned, a weekly pill box helps a lot.  As you mentioned, alarm clocks come in handy too. If you have an alarm on your cell phone, you can also set that.


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 tednlou2

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Re: Tricks to start/maintain adherence
« Reply #9 on: March 07, 2012, 01:29:00 AM »
Your CD4 is 1,000 and vl 8,000.  Those are very good numbers.  What's your CD4%, if ya don't mind? 

I've been curious whether there have been studies about whether people with very good labs are less likely to be adherent, due to thinking things aren't so serious.  One would think someone with a CD4 of 250, barring financial or drug issues, would be more likely to make sure they were adherent.  Obviously, this is speculation and may not hold any basis in fact.  It's just something I've been curious about---whether folks with really good numbers, when starting meds, may be more lax. 

Anyway, wishing you the best on making the decision.  It is admirable that you're thinking about your partner and being proactive about wanting to make sure you're adherent.  That is something I often think about. 

Offline spacebarsux

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Re: Tricks to start/maintain adherence
« Reply #10 on: March 07, 2012, 01:36:08 AM »
Le_Liseur, you could also do what I do- try not to think about adherence until you physically start popping these pills.

I'm sure once you do, everything will fall into place automatically.  :)
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 leatherman

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Re: Tricks to start/maintain adherence
« Reply #11 on: March 07, 2012, 02:11:32 AM »
I've been curious whether there have been studies about whether people with very good labs are less likely to be adherent, due to thinking things aren't so serious.  One would think someone with a CD4 of 250, barring financial or drug issues, would be more likely to make sure they were adherent.  Obviously, this is speculation and may not hold any basis in fact.  It's just something I've been curious about---whether folks with really good numbers, when starting meds, may be more lax. 
check out the thread about "one in four US hiv Patients" (http://forums.poz.com/index.php?topic=42293) It seems that people that have been sicker are more adherent to remaining in care and on treatment ;)
leatherman (aka mIkIE)


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

Offline Raf

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Re: Tricks to start/maintain adherence
« Reply #12 on: March 07, 2012, 12:46:19 PM »
I'm lucky so far, in my almost 4 years of treatment, I didn't skipped a single pill. My motivation is simple, I don't wanna see again in the mirror that hideous being that I transformed By the time I received my Dx (I was at a 92 CD4 count, with a nice wasting syndrome and molluscus contagious all over the face and head. Diagnosed aids right off the bat)...the image still haunts in my mind.

Sometimes, I hate the pills because they constantly remind me of this bug (and with a 6 pills at day regime I cannot think of them like vitamins), but again, they just save my sorry ass from coming back to that state. The only days I weren't able to take my pills (mostly because the pills last 30 days and sometimes I have to wait until monday of the next month to pick them up on the public pharmacy) I constantly think of them.... my day is not complete without seeing my pill case daily.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

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

Offline le_liseur

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Re: Tricks to start/maintain adherence
« Reply #13 on: March 07, 2012, 02:36:59 PM »
Thanks for all these interesting answers. :)

One reason why I asked for tricks, instead of talking of a mindset like JRE said, is because I have this tendency of being overwhelming by too many things to do, sorta like an attention disorder. I'll know I have to do something, but I can very weirdly forget about it because I've been thinking about the other projects I'm doing. I guess it changes when it's about a routine habit, such as taking a pill everyday at around the same time.

I'll keep in mind the little keychain, this would probably help! Also, I was asking this to start the discussion : maybe other people come and do not participate, or are not members of the forum but still read it, so it could help them to know adherence can be an issue to some, but there are easy way to overcome it.

Tednlou2 : I don't know my %, I've never asked or got it from my doctor in the last 2.5 years! I always assumed it was fine, or else he would have told me about it. My VL has always been between what it is now and 12,000. And my CD4 has always been higher than 700-750. It seems stable for now.

It's interesting what you say about adherence how someone with strong numbers might perceive them, compared to someone who needs them now to stay healthy immediately. Right now, the main reason I would start is to make sure I'm UD in case of an accident/condom break with my boyfriend. But then again, I'm not sure if it's really necessary right now, since condoms don't break for no reason, and at the moment, my CD4 level is high and seems stable. I'm pretty sure I'll consider starting it within a year, but I'd rather wait for my master to be over, since the coming months will be very stressful and busy (other reason to think about tricks to adjust my lifestyle hehe)

Thanks again! And if more people have insights, pitch them in. :)

Offline mecch

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Re: Tricks to start/maintain adherence
« Reply #14 on: March 07, 2012, 02:42:39 PM »
Yeah if you don't need the HAART yet, by the numbers, and you aren't convinced you are ready, it does sound like a good idea to make sure you get your Masters.  After all, that will add a lot of benefit to your future life, just like being on HAART will.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline leatherman

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Re: Tricks to start/maintain adherence
« Reply #15 on: March 07, 2012, 07:01:42 PM »
Right now, the main reason I would start is to make sure I'm UD in case of an accident/condom break with my boyfriend. But then again, I'm not sure if it's really necessary right now, since condoms don't break for no reason, and at the moment, my CD4 level is high and seems stable.
Condoms don't break for no reason; but they have been known to break for certain reasons, so do be cautious and use them correctly. ;)

And only because what you wrote seems a bit incongrous, it's your VL, not cd4 level, that would infect your BF. Only your health is dependent on that >700 number, while the ability for you to transmit HIV is based on that 12k number.
leatherman (aka mIkIE)


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

Offline tealeaf

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Re: Tricks to start/maintain adherence
« Reply #16 on: March 07, 2012, 10:25:19 PM »
I've followed the tips from this series http://williamlarsonpharmd.wordpress.com/category/adherence/ and they have been spotted on.

If you have a smart phone, try the Med Helper (on Android Market). This is my life saver app since it keeps track of your refills, current pill count, remind you time to refill, and most importantly, it'll alert you it's time to take the pill. You can set it to keep remind you every 5 minutes until you take the pill and mark it as "taken". It keeps log of all the activities so you could look back and see how you've been doing.
12/05/2011 - tested positive
12/14/2011 - CD4 376 (18%) - VL 45734
12/28/2011 - CD4 367 (17%) - VL 27000
01/05/2012 - started Complera
02/08/2012 - CD4 521 (31%) - VL 226
04/05/2012 - CD4 453 (22%) - VL 44

Online Miss Philicia

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Re: Tricks to start/maintain adherence
« Reply #17 on: March 07, 2012, 11:16:19 PM »
that sounds like a lot of effort
"Iíve slept with enough men to know that Iím not gay"

Online Buckmark

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Re: Tricks to start/maintain adherence
« Reply #18 on: March 07, 2012, 11:23:36 PM »
A few things:  (1) an alarm (watch or cell phone) to remind you to take your meds, and (2) a pill box so that your meds are always with you, and you can go back later and see if you remembered to take the meds.  The latter helps because, with a busy, repetitive schedule, 30 minutes after my alarm goes off I sometimes can't remember if I took my meds.

"Life in Lubbock, Texas, taught me two things:
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Offline wolfter

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Re: Tricks to start/maintain adherence
« Reply #19 on: March 08, 2012, 10:42:03 AM »
A few things:  (1) an alarm (watch or cell phone) to remind you to take your meds, and (2) a pill box so that your meds are always with you, and you can go back later and see if you remembered to take the meds.  The latter helps because, with a busy, repetitive schedule, 30 minutes after my alarm goes off I sometimes can't remember if I took my meds.

Same here.  If I didn't have my pill box to verify if I took my pills or not, I'd probably be doubling up some days.  30 minutes after taking them, I have to check to see if I really did.  Then again, having AIDS brain for so long justifies this.  Better excuse than getting older.

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

Offline Raf

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Re: Tricks to start/maintain adherence
« Reply #20 on: March 08, 2012, 11:03:03 AM »
the pill box is an awesome idea, like wolfie, I would forget my pills or take double doses if it weren't for my pill box, it tells me how many I've taken in the day, and how many left.

And this comes from someone with a really bad memory lol.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

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

Online Miss Philicia

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Re: Tricks to start/maintain adherence
« Reply #21 on: March 08, 2012, 11:11:11 AM »
I use one dedicated ceramic cup to take my pills. If it's wet inside that means I just took them. If it's dry that means I forgot. I open ten bottles of pills each time I take them.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: Tricks to start/maintain adherence
« Reply #22 on: March 08, 2012, 06:12:48 PM »
I open ten bottles of pills each time I take them.
that sounds like a lot of effort
:D sounds like a pill container, of some sort, could sure save you some time by letting you open those bottles fewer times a month. Of course, if you have too many pills, or they are too big, to fit in any practical pill caddy/container, then you're just stuck with things the way they are, I guess.
leatherman (aka mIkIE)


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

Online Miss Philicia

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Re: Tricks to start/maintain adherence
« Reply #23 on: March 08, 2012, 06:30:18 PM »
:D sounds like a pill container, of some sort, could sure save you some time by letting you open those bottles fewer times a month. Of course, if you have too many pills, or they are too big, to fit in any practical pill caddy/container, then you're just stuck with things the way they are, I guess.

Are you trying to troll me, Bivens?
"Iíve slept with enough men to know that Iím not gay"

Offline jkinatl2

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Re: Tricks to start/maintain adherence
« Reply #24 on: March 08, 2012, 06:59:05 PM »
I can tell you what worked for me.

A) Don't take pills on time, or at all.

B) Wait till my CD4 count goes single digit and VL soars into the millions.

C) Slowly, over the course of a year or two, watch my energy erode until I can barely move from bedroom to bathroom to sofa.

D) Develop PCP and get hospitalized.

E) See the trauma and pain I cause to everyone who loves me because I am too fucked up to care about my health

F) Get better, start taking medication regularly

G) Get my life back.

It might seem unnecessarily hard/complicated a system, but it worked for me and I only had to do it a couple of times!

Also, weekly pill container.


*modified for typo
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Offline wolfter

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Re: Tricks to start/maintain adherence
« Reply #25 on: March 08, 2012, 10:14:22 PM »
I can tell you what worked for me.

A) Don't take pills on time, or at all.

B) Wait till my CD4 count goes single digit and VL soars into the millions.

C) Slowly, over the course of a year or two, watch my energy erode until I can barely move from bedroom to bathroom to sofa.

D) Develop PCP and get hospitalized.

E) See the trauma and pain I cause to everyone who loves me because I am too fucked up to care about my health

F) Get better, start taking medication regularly

G) Get my life back.

It might seem unnecessarily hard/complicated a system, but it worked for me and I only had to do it a couple of times!

Also, weekly pill container.


*modified for typo

Yeah, that system worked for me too. 

That entire list matched my history to a T except   D) Develop PCP and get hospitalized.
So mine would be D) Develop cryptococcal meningitis and get hospitalized for a month.

I so much prefer the simpler method of just using a weekly pill box.

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

Offline blue1

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Re: Tricks to start/maintain adherence
« Reply #26 on: March 12, 2012, 12:06:08 AM »
Agree with the pillbox idea.  I bought a big one that can fit a lot of pills and I have been slowly adding on things I take every morning and even now some at night... This was more an attempt to be health conscious, but it has helped prepare me for the day when I will start treatment...

Every day I have been taking:
2 Cold Combat (andrographis)
1 Multi Vitamin
4 Fish-oil (2 morning and 2 at night)
2 Chewable vitamin-C
1 finasteride

The pill box is sitting there in front of me in the morning every day and I always remember in the morning as it is part of my routine now for over a year.  The hard part for me is remembering to take the 2 fish oils at night...  I have woken up a few times and it is still sitting there..OOPS!  This is bad news if any meds I will eventually be on needs to be taken at night.  So, I have put a remember in my iPhone to take meds at night...but it doesn't work as well because I'm not always at home the same time of day.  Perhaps I will use the idea of the keychain pill-box for night pills.  When the alarm goes off then I take it regardless of what I'm doing or where I am.  I'm still not sure how I will get into the habit of taking pills at night.  When I take out my contact lenses maybe I will just remind myself that it has to be done.  Also once I start taking meds then I think I will realize that it is a bit more important than just fish oil..so I will be more likely to remember :)


 


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