Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
October 22, 2014, 07:09:27 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 643116
  • Total Topics: 48933
  • Online Today: 228
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Stopping Meds? Advice, PLEASE!!  (Read 2383 times)

0 Members and 1 Guest are viewing this topic.

Offline WhereIsTheArk

  • Member
  • Posts: 19
Stopping Meds? Advice, PLEASE!!
« on: November 14, 2010, 07:32:19 PM »
Okay, I'm a 20 year old guy with a hectic life, and a horrid sense of memory. Here's my problem, I regularly forget to take my meds. I've done everything from setting the times on my alarm clock to putting sticky notes all over my wall so I don't forget. NOTHING HELPS!

It took me a long time before starting meds, I was very apprehensive against my doctors wishes, because I was in denial still about my HIV status and had alot of fears about meds, since I didn't know much about them... Now, that I'd vowed to start treatment about six months ago, I keep fucking up on taking them!

I'm on Truvada and Isentress, and as far as I know I'm still undetectable, and my cd4 count gradually improves every doctor visit. I'm not sure which medication it is, but one of them can't be screened for resistance since it's so new to the market, no kind of tests exist for it yet, and there are many unknowns about it still.

I fear I will become resistant to my meds since I have not been complaint, which is an understatement, since beginning this regimen. I fear that it won't be detected, if I do become resistant to them and by the time they find out that I am, the damage would have already been done.

My doctor said the cocktail that I'd have to start taking, if I become resistant to the ones I'm taking now, is extremely harsh on the body and the side effects are ruthless. Also, I'd be taking WAY more than just three pills a day (I hate pills with a passion, so I DON'T WANT TO GET TO THAT POINT!!!)

So, I wonder if it would be beneficiary for me to stop taking my meds now before I become resistant to them, and while I'm still undetectable, so that by the time my life is more maintained to face this battle correctly, I can resume my meds and be triumphant.
« Last Edit: November 15, 2010, 06:29:14 AM by WhereIsTheArk »

nychope1

  • Guest
Re: Stopping Meds? Advice, PLEASE!!
« Reply #1 on: November 14, 2010, 08:38:12 PM »
Firstly, I would let your doctor know that you have not been adhering to your regime and get his take on it.  Those are some heavy duty meds and not to be messed with.
Personally dude... all I can say if it was a matter of life and death, I mean impending life or death, would you still forget to take a few pills a day? I ask this because it very well can become just that. Life or death.
Hectic life? No life? Hmmm...
And I have to think of all those folks ten, fifteen, twenty years ago that only wished they had the miracle of the meds we have today.  Well, I hope you make the best decision for yourself. Good as time as any to get it together.
You might want to try a weekly pill box that have the day on the lid of each compartment. You can buy five of them a set the whole month up. This way you will know if you missed a day or more.
Good Luck...
« Last Edit: November 14, 2010, 08:42:48 PM by nychope1 »

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Stopping Meds? Advice, PLEASE!!
« Reply #2 on: November 14, 2010, 09:40:19 PM »
Do you miss random doses or usually the morning (or evening) dose?  If you can remember them once a day and it is only the second time that is not working your doctor may have some once a day options for you.

... and NYChope's suggestion of a pill box is a good one. 

Good luck
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%

Online emeraldize

  • Member
  • Posts: 3,353
Re: Stopping Meds? Advice, PLEASE!!
« Reply #3 on: November 14, 2010, 10:22:03 PM »
You are making this more complicated than it needs to be.
Yes, you need to speak with your doctor and tell the truth so that he or she knows exactly what's going on and hopefully you haven't possibly f'd yourself up on the Isentress.

This may be the first time in your life you've ever had a daily command performance other than brushing your teeth.For our parents, it was feeding and clothing us. For you, it's summoning the discipline to take meds.

Get a pill box and frankly, it's simple decision--you either want improved health or you want drama and trauma. Which is it?

This is going to read as unsympathetic, but if the folks involved in ACT UP in the early years knew what you have to take advantage of and are not availing yourself, I don't think they would be sympathetic for a second. A lot of folks who wish they had meds are just plain dead. And, there's a ton of folks in the US and Africa and China and, and, and, who would gladly take your meds, right on time, every day.

Em
« Last Edit: November 15, 2010, 12:00:32 AM by emeraldize »

Offline surf18

  • Member
  • Posts: 525
Re: Stopping Meds? Advice, PLEASE!!
« Reply #4 on: November 14, 2010, 10:38:23 PM »
Keep them in your wallet, set alarm on cell phone, set calendar alarm on cell phone.
Take the meds, your on a great combo don't screw it up

Offline ElZorro

  • Member
  • Posts: 535
Re: Stopping Meds? Advice, PLEASE!!
« Reply #5 on: November 14, 2010, 10:44:08 PM »
You are making this more complicated than it needs to be.
Yes, you need to speak with you doctor and tell the truth so that he or she knows exactly what's going on and hopefully you haven't possibly f'd yourself up on the Isentress.

This may be the first time in your life you've ever had a daily command performance other than brushing your teeth.For our parents, it was feeding and clothing us. For you, it's summoning the discipline to take meds.

Get a pill box and frankly, it's simple decision--you either want improved health or you want drama and trauma. Which is it?

This is going to read as unsympathetic, but if the folks involved in ACT UP in the early years knew what you have to take advantage of and are not availing yourself, I don't think they would be sympathetic for a second. A lot of folks who wish they had meds are just plain dead. And, there's a ton of folks in the US and Africa and China and, an, and, who would gladly take your meds, right on time, every day.

Em

Have to agree with Em. You have an unprecedented opportunity to survive that others didn't and still don't have. You're creating an amazingly difficult situation for yourself that you will live to regret. If you want to be adherant, you can find a way to be adherant. It really only takes about 4 seconds a day for you to take those 3 pills. If you're planning to live to be 85, that means you need to invest about 26 hours of your life in trying to get there.  I can't imagine any hectic life that doesn't have that much spare time in it; hell, you're gonna spend more time that than just peeing!  :-\

Best of luck
« Last Edit: November 14, 2010, 10:46:01 PM by ElZorro »

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Stopping Meds? Advice, PLEASE!!
« Reply #6 on: November 15, 2010, 01:27:29 AM »
You said you're setting an alarm but still missing doses...So what are you doing when the alarm goes off?  The best way to never forget them is to put them LITERALLY in the way of something you do on a daily basis.  For me my meds sit in front of my bathroom sink.  This means I cannot groom myself, brush/floss my teeth, shave, apply cologne, or anything else without seeing/moving my meds.  I do a once daily regimen and take them at night, but when I'm in that room of my house they are ever present.  As I brush my teeth right before bed every night I never forget to take them.  This may sound harsh, but would you be forgetful if you knew for sure that missing even one dose would be instant death?  Now take that example and stretch it out to 3 days...a week...a month...a year....a couple of years.  If you don't want to quantify it, then take the meds and you won't have to, because most likely it won't be the HIV that kills you.

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: Stopping Meds? Advice, PLEASE!!
« Reply #7 on: November 15, 2010, 05:41:13 AM »
Hello, some points

Most importantly, if your viral load is consistently less than 50 copies with your current rate of adherence, then it's good enough. A viral load of 50 or less is the target, not taking every pill on time.

It may be worth looking at a 1 x day combo if you are remembering once set of tabs a day but forgetting the second, this is deffo worth a look.

Stopping will eliminate the risk of resistance in the short-term. What was your CD4 count before starting treatment?

But, basically: pill tin, spare tab in your wallet or somewhere, take the meds whenever your remember twice a day. I wouldn't worry about the time being "right", more important that it is consistent every day. If you remember you forgot, then you can take it then :-)

Good luck

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

Offline WhereIsTheArk

  • Member
  • Posts: 19
Re: Stopping Meds? Advice, PLEASE!!
« Reply #8 on: November 15, 2010, 05:52:10 AM »
Thank you for all of your advice, people. It's really insightful stuff!

I forgot to mention that I was diagnosed with HIV related dementia earlier this year, and it's really hard for me. I lose track of the days, months etc. and become severely disoriented at times.

I'm in no way ungrateful either, so please don't impose that on me. I know medications are a gift, and people are dying left and right because they don't have that privilege, I KNOW!

I was just considering it as a safe alternative for the time being since it's not working out for me right now.

Hellraiser, thanks for the advice about placing my meds literally in the way of something I do on a daily basis. I'm going to try that!
« Last Edit: November 15, 2010, 06:39:39 AM by WhereIsTheArk »

Online emeraldize

  • Member
  • Posts: 3,353
Re: Stopping Meds? Advice, PLEASE!!
« Reply #9 on: November 15, 2010, 07:23:03 AM »
I'm in no way ungrateful either, so please don't impose that on me. I know medications are a gift, and people are dying left and right because they don't have that privilege, I KNOW!

Not intending to impose it upon you, trying to use various angles to urge you to change your med-taking. In our house, we even have a couple of note card size signs up which read-- Have I:  taken my medicine and vitamins? followed by other naggy items, like Got your keys? Got your cell phone? etc. One is posted right on the door most frequently exited.

You can do this.

Online Dachshund

  • Member
  • Posts: 5,969
Re: Stopping Meds? Advice, PLEASE!!
« Reply #10 on: November 15, 2010, 07:55:36 AM »
I've read the other threads you started and you just might have a bit too much on your plate right now. A forty day water fast and wanting a baby should be put on the back burner. Concentrating on adherence should be your top priority.

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: Stopping Meds? Advice, PLEASE!!
« Reply #11 on: November 15, 2010, 10:41:41 AM »
signs up which read-- Have I:  taken my medicine and vitamins? followed by other naggy items, like Got your keys? Got your cell phone? etc. One is posted right on the door most frequently exited.
here in my house, my Mom has one of those taped onto her bedroom door and another one on the back of the front door. ;)

Frequently I make out a daily list of things to do - or try to do - so that I don't forget things (it must be genetic and not hiv brain-fog specific LOL). I make sure I put easy daily chores and events on there too so that I get positive reinforcement by always crossing things off my "to do" list daily. "feed the dogs" and "take my meds" are two accomplishments I cross off every day which results in happier dogs, a happier me, and unhappy HIV.  :D
leatherman (aka mIkIE)


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

Offline eric48

  • Member
  • Posts: 1,190
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Stopping Meds? Advice, PLEASE!!
« Reply #12 on: November 16, 2010, 06:12:12 PM »
Hi,

I am doing a bit of experimenting about taking my meds at a different time as food (my regimen can be taken with or with out)

When I take them outside of food time, I really need my pill box and cell phone alarm.

When I take them with food, it is a bit easier... Breakfat/Lunch/dinner are non -medication intake that people rarely forget...

I found another one that is pretty easy and convenient (though quite unusual): I set up that alarm at a very early early hour (say 5 AM). it wakes me up, I take the pills half awake, and easily get back to sleep. I found this extremely convenient and efficient to cut the emotional effect of having to take these pills.

Would be quite effective with a once a day regimen, since the 'person' taking this pill half asleep is a Non-ME (as opposed to self conscious ME), and then the pills are part of my Non-life (as opposed to being part of my life...)

I admit it is odd, but works for me...

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline debsd222

  • Member
  • Posts: 69
Re: Stopping Meds? Advice, PLEASE!!
« Reply #13 on: November 16, 2010, 09:28:23 PM »
Eric,  I cant say I know how dementia would figure in to remembering your meds, but as everyone says, a weekly pillbox is a must....and I leave it out on the counter so I am always aware of it. I set the alarm on my phone for my pm meds. Getting an aids diagnosis scared the shit out of me, so in the 2 yrs since I started I havnt missed a dose. I take 13 prescriptions. You can do this!!!
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline LordBerners

  • Member
  • Posts: 415
Re: Stopping Meds? Advice, PLEASE!!
« Reply #14 on: November 17, 2010, 12:41:22 PM »
...The best way to never forget them is to put them LITERALLY in the way of something you do on a daily basis.  For me my meds sit in front of my bathroom sink.  This means I cannot groom myself, brush/floss my teeth, shave, apply cologne, or anything else without seeing/moving my meds.

... I set up that alarm at a very early early hour (say 5 AM). it wakes me up, I take the pills half awake, and easily get back to sleep. I found this extremely convenient and efficient to cut the emotional effect of having to take these pills...the 'person' taking this pill half asleep is a Non-ME (as opposed to self conscious ME), and then the pills are part of my Non-life (as opposed to being part of my life...)

I admit it is odd, but works for me...

I'd just like to say that the above tidbits of advice were excellent and very innovative/interesting.  They inspired me to make a thread about where we keep our medicine (to avoid hijacking this one).

To the original poster, please keep trying, and try some of these strategies.  Its just as important as everyone said above.
« Last Edit: November 17, 2010, 12:55:07 PM by LordBerners »
Please, just call me Berners.. or Baron.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.