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Author Topic: Adherence-why bother!  (Read 2242 times)

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Offline alisenjafi

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  • Posts: 811
  • They say HIV comes from monkeys!
Adherence-why bother!
« on: February 23, 2007, 10:48:03 PM »
So I am getting low on the Atripla and call Eckard. I go in a few days later, and am told they have to order it. No problem, two days later ( now a week) I have a message that my prescription has expired- how can this be when my last prescription says I have one refill later?
So I am told that I filled the prescription was 6 months old and need a new one medicaid won't fill. I say why then does the last one say I still have one left- plus the fact that if I started that 6 months ago i would have 6 refills now so I don't even get the math.

So I look for my docs #- even though I know he is out i figure I would be routed to another one. I call the nurse No answer.
I call Eckard and ask did they get through- "No" they say.
So I get home and call the hospital, they hang up on me 3 times!
I finally got some one asking me if i need a doctor- duh.
So my doc has been thinking of putting me on a drug holiday. I don't want to do it because of the horror stories, tonight is the third night without Atripla.
My  t cells have been pretty constant in 600-800 range and vl is <50 so i am not stressing too much but a holiday shouldn't be due to incompetence.
It will be interesting to see how this goes. I been taking bee pollen and fish oil. Anyone know how much vitamin e I should be taking/
On another note I still have the weird dreams, this mornings was in cartoon form ala anime.
J
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Adherence-why bother!
« Reply #1 on: February 23, 2007, 10:53:36 PM »
Sustiva is a pretty unforgiving drug insofar as resistance goes. Everything I have read tells me that stepping down (going from the one pill to three, with each being tapered off individually) is th eway to go off treatment without developing resistance.

You need to have a serious sit down with this doctor, and in an appropriate amount of time, a genotype test. Atripla is the BEST therapy for HIV out there. Stepping down to another regimen, especially due to resistance, is a nasty business.

This is a disturbing story to me. I hope you get to the bottom of it ASAP.

"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 sweetasmeli

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  • Love what you are...
Re: Adherence-why bother!
« Reply #2 on: February 23, 2007, 11:29:25 PM »
J, I know nada about meds - sorry - but vitamins I do know.
I take 400iu of vitamin E to synergise with 200mcg of selenium (amonst other stuff)...

Good luck with your meds dilemma!
Btw cartoon dreams sound quite fun!

Melia :)
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Adherence-why bother!
« Reply #3 on: February 23, 2007, 11:58:46 PM »
I'll repeat what I always say.  You can generally fill your prescriptions 5 days in advance for the refill.  Do this EVERY month to build up a buffer bottle in case shit like this happens.  You achieve a full bottle extra within six months time.
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: Adherence-why bother!
« Reply #4 on: February 24, 2007, 03:22:14 AM »
On another note I still have the weird dreams, this mornings was in cartoon form ala anime.

I was talking to my clinic nurse on Tuesday about Atripla and the dreams. She told me Sustiva is what causes them but says men mostly have erotic dreams and women tend to get nightmares...Is this true? Maybe I should start a thread on this,hmmm...

Anyhoo, I hope things work out for you on the refills. I would hate to see you build a resistance due to their incompetence....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Miss Philicia

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  • Posts: 23,882
  • celebrity poster, faker & poser
Re: Adherence-why bother!
« Reply #5 on: February 24, 2007, 03:37:01 AM »
The brief time I was on Sustiva, before getting a rash and being taken off of it and never given it again, frankly I don't recall any wild dreams.  But then again I often have vivid dreams so it probably wouldn't have been easy for me to tell a difference.  Plus I took so much acid in college I can handle anything oddly visual!
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: Adherence-why bother!
« Reply #6 on: February 24, 2007, 03:45:20 AM »
I would rather have a nice sexual dream than nightmares about every horror movie I've seen....Or an ex who is holding a grudge..... :o
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline skeebo1969

  • Member
  • Posts: 5,699
Re: Adherence-why bother!
« Reply #7 on: February 24, 2007, 05:05:32 AM »


  J..

  Damn dude that really bites..  I've read some literature that states what Jonathan has mentioned here about the resistance issue.  I hope this gets resolved ASAP.   I would be starting fires and shit ;) >:(.

  T
I despise the song Love is in the Air, you should too.

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Adherence-why bother!
« Reply #8 on: February 24, 2007, 05:09:21 AM »
If there is a gap in your coverage, PM Lisa online. She runs a valuable underground service that migiht help you get a weeks's worth of meds or so.

"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 alisenjafi

  • Member
  • Posts: 811
  • They say HIV comes from monkeys!
Re: Adherence-why bother!
« Reply #9 on: February 24, 2007, 06:26:42 AM »
I never had erotic dream on the stuff, I had a dream where I was shot, and yes the bullet hit. I had a dream a friend was making french toast with slices of italian bread and I was worried there wasn't enough, and yes when I awoke i was really hungry.
Now if i was out having unprotected sex while doing copious amounts of coke and meth with poppers, all fingers would b pointing at me for being irresponsible. Here both Eckard ( for letting me believe I had one refill left) and the hospital where I go for not providing back up  failed miserably.
I have no idea whom I am supposed to go to, as well as the fact I was hung up on and I haven't heard from anyone as I have a feeling the guy i eventually talked with was giving me lip service.
Since meds I have no problems and only when I had a sinus infection last winter did my t cells drop to 450, but rebounded fast.
The last thing I am going to do is stress, now how much vitamin e and does go in rectally?
J :-)
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline Miss Philicia

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  • Posts: 23,882
  • celebrity poster, faker & poser
Re: Adherence-why bother!
« Reply #10 on: February 24, 2007, 06:37:20 AM »
Do you have a case worker at an ASO?  If so, call them and see if your community has any place where other HIV patients turn in unused medications.  There's generally somewhere, I would think, if you live in a decent size city.

Did you try contacting "Lisa" on this web site?  She collects unused medication from board members.
"Iíve slept with enough men to know that Iím not gay"

Offline alisenjafi

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  • Posts: 811
  • They say HIV comes from monkeys!
Re: Adherence-why bother!
« Reply #11 on: February 24, 2007, 07:03:26 AM »
4 years on I do skip here and there but only for a day. My doc had been talking about putting me on a holiday so again this isn't melt down. I read up alot and I think the week on week off would be the safest, This is day four and today I am going down to the hospital.
 I feel great and also think undo stress isn't going to help. I realize I want to change my doc- though he is okay going to a New York hospital clinic has put me off, I already see him 3 times a year, couldn't stand waiting for him while dealing with crying babies, other sick people, the one time I would agree with Jack about being isolated!
Funny before I was on state aid I wrote a response saying what I thought about mediare/aid, another poster (who has disapeared from here) got all combatent, gee I was right!
« Last Edit: February 24, 2007, 07:05:28 AM by alisenjafi »
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Online RapidRod

  • Member
  • Posts: 15,276
Re: Adherence-why bother!
« Reply #12 on: February 24, 2007, 07:18:25 AM »
alisenjafi, when did the date of your prescription expire? If you don't use the prescriptions up before the expiration date then you won't be able to get the prescription filled even if you have refills left.

Offline jack

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  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Adherence-why bother!
« Reply #13 on: February 24, 2007, 07:22:32 AM »
I never had sustiva dreams but did have debilitating vertigo,with colors as vivid as any lsd trip.  I was unable to stand or walk  during these periods, at least on lsd I was able to stagger around. I began to fear having one of these episodes while driving but they only occurred late at night.
phillys post on ordering drugs is a great idea, i think i will start doing that.

Offline ajm_ldn

  • Member
  • Posts: 69
Re: Adherence-why bother!
« Reply #14 on: February 24, 2007, 07:42:19 AM »
Wow, sorry to hear about this alisenjafi.  It just seems kinda inhumane to not, at the very least, give you a few days meds to buy you some time while you sort this out!

I'd do the following:

1.  Get the first and last name of everybody you're dealing with.  If they won't tell you, write down the dates, times, description (if face-to-face) and phone numbers of anyone you talk to.  Make sure they know you're doing this.  I predict this will make them think twice and be more accountable.

2.  Be very polite and reasonable (I'm sure you are, just sayin')  :-)  Obviously you want them to like and sympathise with you so that they will try harder to help.

3.  If no joy, remain polite, but insist on escalating the situation to their supervisor/manager/boss.  Keep going up the chain of command until you reach somebody who is evolved enough to help.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Adherence-why bother!
« Reply #15 on: February 24, 2007, 07:59:47 AM »
I never had sustiva dreams but did have debilitating vertigo,with colors as vivid as any lsd trip.  I was unable to stand or walk  during these periods, at least on lsd I was able to stagger around. I began to fear having one of these episodes while driving but they only occurred late at night.
phillys post on ordering drugs is a great idea, i think i will start doing that.
Ah, my best friend got that vertigo stuff with Sustiva too -- he had to stop doing it because his job has him on his feet the entire day, working with really wealthy Manhattanites.  Can't be wobbly in that atmosphere.

You know, I'm the LEAST resistant to that NNRTI class but they never seem to put me on any of it anymore.  Wonder why that is?  I've done Viramune but that was eons ago.  I've never done Rescriptor and never seem to read of anyone on it here.  Oh, the wikipedia entry on it says it's not as potent as the others and has a weird schedule.  Says it is rarely used... well, then that's right up my alley.  I should demand it just for the challenge.
"Iíve slept with enough men to know that Iím not gay"

Offline mjmel

  • Member
  • Posts: 2,069
Re: Adherence-why bother!
« Reply #16 on: February 24, 2007, 08:04:11 AM »
I would have considered purchasing a few doses from out-of-pocket. Of course, you may not be able to fork out that much. Just a possible solution till you can get some results. I'd be causing calamities till I got results. What kind of social services worker do you have anyway--to allow this to lapse?  Eckard, however, is the weak and feeble link here. They would not get my new scripts when time to refill, that's for sure.

The physicians out there who recommend drug holidays continues to perplex me.

Offline J.R.E.

  • Member
  • Posts: 7,095
  • Joined Dec-2003 Living positive, since 1985.
Re: Adherence-why bother!
« Reply #17 on: February 24, 2007, 08:09:20 AM »
Hello Johnny,

Sorry to hear about the problems your having, getting that prescription refilled. I wish there was there was something I could tell you.

As far as the STI. You probably read as much about this topic ,as I Try to find on it, About the pro's and cons. But I still believe with some of the STI's there is still a process of going about it, in order to prevent resistance issues.

Let us know how you make out .



Take care-----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 Lisa

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    • http://www.myspace.com/lisanowak58
Re: Adherence-why bother!
« Reply #18 on: February 24, 2007, 11:51:53 AM »
Doing an STI if you are in a stable condition is one thing, but being forced into one because you can't access your meds is another entirely.

Rmemeber the huge multi-nation study that was yanked a little less than a year ago, because the STI's were making people progress too quickly to AIDs?
I'm not so sure stopping your meds is such a good idea. It has taken me a year to regain the ground I lost in 60 days off meds. I know I will never be a candidate for STI again. I don't want to ever be that sick again.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

 


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