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Author Topic: No Adherence Issues at all...  (Read 4215 times)

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nychope1

  • Guest
No Adherence Issues at all...
« on: December 12, 2010, 11:35:43 PM »
I'm back..

So after being bounced from Nurse Ratchet for my apparent CNS outburst from taking Atripla (don't believe the hype) I have to take this last opportunity to encourage the newly diagnosed to get on meds and not be swayed by outdated stigma's and fear. It's scary to pop the first pill but it is less scary than being hospitalized for some OI when there is nothing to fear from meds!

The misrepresentation by member jkinatl2 by stating: "One of the posters who has just started Atripla, arguably the easiest medication to acquire and tolerate from a dosing and funding standpoint, was ALREADY having issues with remembering whether he did or did not forget a dose. This after less than two months after starting meds".

My old BFF, jkinatl2, was directly referring to my post that was offering comfort to those who doubt you can live a normal life when I wrote:
 "I have to say Tuesday (well Wednesday morning) I got home at 4 in the morning after quite a few drinks, (that damn beer and bourbon). The latest I have taken the Atripla since starting the stuff.
Anyway, I got home and took one then forgot ten minutes later if I took it or not. I had to count how many were there and subtract it from the day I started to figure out if I took it or not. Oy vey.
Then I got a call at 8:00AM that my uncle locked himself out of the house. It was a damn hurricane out in NYC on Wednesday. I had to get up, still tippsy, and drive out to Queens in gale winds and pouring rain.
If there is a hell on earth I was in it. Good thing about Atripla is I actually don't drink as much! No problems here with it."

To date, I have not had the slightest bit of issues adhering to my new life's regime. I have not missed a dose from starting meds on November 7th and, as a matter of fact, have never felt better. My new numbers just came back: cd4 566 and vl 213. Having only been diagnosed in October with cd4 525 and vl 2500.

That's all I have to say other then sometimes in life you just have to read someone the riot act.

I wish all of you health in this coming New Year and many more after. I will reiterate my message of hope and encourage those worried about the future to always accentuate the positive.
 
Hugs e baci,
J


Offline woodshere

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Re: No Adherence Issues at all...
« Reply #1 on: December 13, 2010, 12:16:37 AM »
I am really not sure why you continue to antagonize individuals who participate here.  But what I really can't figure out is when will you realize that while you have had such a wonderful experience with your meds, it is not the case for everyone.  The physical side effects as well as mental and financial are not the same for all of us.  You can be hopeful but please stop discounting the problems of others and their experiences and feelings.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Matty the Damned

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Re: No Adherence Issues at all...
« Reply #2 on: December 13, 2010, 12:17:33 AM »
I'm back..

So after being bounced from Nurse Ratchet for my apparent CNS outburst from taking Atripla (don't believe the hype) I have to take this last opportunity to encourage the newly diagnosed to get on meds and not be swayed by outdated stigma's and fear. It's scary to pop the first pill but it is less scary than being hospitalized for some OI when there is nothing to fear from meds!

The misrepresentation by member jkinatl2 by stating: "One of the posters who has just started Atripla, arguably the easiest medication to acquire and tolerate from a dosing and funding standpoint, was ALREADY having issues with remembering whether he did or did not forget a dose. This after less than two months after starting meds".

My old BFF, jkinatl2, was directly referring to my post that was offering comfort to those who doubt you can live a normal life when I wrote:
 "I have to say Tuesday (well Wednesday morning) I got home at 4 in the morning after quite a few drinks, (that damn beer and bourbon). The latest I have taken the Atripla since starting the stuff.
Anyway, I got home and took one then forgot ten minutes later if I took it or not. I had to count how many were there and subtract it from the day I started to figure out if I took it or not. Oy vey.
Then I got a call at 8:00AM that my uncle locked himself out of the house. It was a damn hurricane out in NYC on Wednesday. I had to get up, still tippsy, and drive out to Queens in gale winds and pouring rain.
If there is a hell on earth I was in it. Good thing about Atripla is I actually don't drink as much! No problems here with it."

To date, I have not had the slightest bit of issues adhering to my new life's regime. I have not missed a dose from starting meds on November 7th and, as a matter of fact, have never felt better. My new numbers just came back: cd4 566 and vl 213. Having only been diagnosed in October with cd4 525 and vl 2500.

That's all I have to say other then sometimes in life you just have to read someone the riot act.

I wish all of you health in this coming New Year and many more after. I will reiterate my message of hope and encourage those worried about the future to always accentuate the positive.
 
Hugs e baci,
J



Le sigh.  ::)

MtD

nychope1

  • Guest
Re: No Adherence Issues at all...
« Reply #3 on: December 13, 2010, 12:30:21 AM »
I am really not sure why you continue to antagonize individuals who participate here.  But what I really can't figure out is when will you realize that while you have had such a wonderful experience with your meds, it is not the case for everyone.  The physical side effects as well as mental and financial are not the same for all of us.  You can be hopeful but please stop discounting the problems of others and their experiences and feelings.

Woody Booby... (that's a New York Jewish term though I am Italian)

Where I am true to this forums purpose by sharing my experience you on the other hand are persistent in sharing your psychosis. If you've had a bad experience with your meds then share your experience and let those that are here draw their own conclusions and decisions.

I  have said nothing that discounts the problems of others. It is your own skewed perception that is reading it as such.

I will continue to share my experience and defend the truth when others misrepresent until I am bounced for good. LOL....

Ciao bello...
« Last Edit: December 13, 2010, 12:35:50 AM by nychope1 »

Offline skeebo1969

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Re: No Adherence Issues at all...
« Reply #4 on: December 13, 2010, 12:37:52 AM »



   You know something?    I wouldn't be so certain I wasn't suffering some sustiva induced side effects if I was you.  It gets worse, trust me. :D 
I despise the song Love is in the Air, you should too.

Offline woodshere

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Re: No Adherence Issues at all...
« Reply #5 on: December 13, 2010, 12:44:24 AM »
If you've had a bad experience with your meds then share your experience ...

Actually I have had no problems in the least with my meds.  Will next year due to change in insurance but nothing up to this point.  I however, do take into account that others aren't so fortunate as well as things can change.

....until I am bounced for good. LOL....


If that is your goal I'd say you are well on your way. 
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Matty the Damned

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Re: No Adherence Issues at all...
« Reply #6 on: December 13, 2010, 12:45:06 AM »
Woody Booby... (that's a New York Jewish term though I am Italian)

Where I am true to this forums purpose by sharing my experience you on the other hand are persistent in sharing your psychosis. If you've had a bad experience with your meds then share your experience and let those that are here draw their own conclusions and decisions.

I  have said nothing that discounts the problems of others. It is your own skewed perception that is reading it as such.

I will continue to share my experience and defend the truth when others misrepresent until I am bounced for good. LOL....

Ciao bello...

It's bubbeh not "booby", you nudnik and you clearly don't understand Yiddish.

Oy, such a putz.

MtD

nychope1

  • Guest
Re: No Adherence Issues at all...
« Reply #7 on: December 13, 2010, 12:46:23 AM »
hahaha.. maybe Skeeboy..

This stuff is my Ritalin.. I have never been calmer! We tell it like it is here in NYC... has nothing to do with meds. :)

Don't suggest to the newly diagnosed that they have something to fear. It's not nice. Control yourself...

J

nychope1

  • Guest
Re: No Adherence Issues at all...
« Reply #8 on: December 13, 2010, 12:46:46 AM »

"It's bubbeh not "booby", you nudnik and you clearly don't understand Yiddish." 

Booby here in Brooklyn. Zay moykhl!
« Last Edit: December 13, 2010, 12:51:38 AM by nychope1 »

Online Miss Philicia

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Re: No Adherence Issues at all...
« Reply #9 on: December 13, 2010, 12:52:42 AM »
you on the other hand are persistent in sharing your psychosis

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

Offline Matty the Damned

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Re: No Adherence Issues at all...
« Reply #10 on: December 13, 2010, 01:03:23 AM »
"It's bubbeh not "booby", you nudnik and you clearly don't understand Yiddish." 

Booby here in Brooklyn. Zay moykhl!

Me ois vaxen svi a tsibele miten cup in vant.

MtD

Offline PozJeepGuy

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Re: No Adherence Issues at all...
« Reply #11 on: December 13, 2010, 01:19:09 AM »
I have now been taking meds for two monthes and in my experience its getting worse.  The nausea caused by these things is one step away from being intolerable.  My doc and I have tried taking pills at a different time, with different foods, eating before, during, and after taking the pills.   I have lost 10lbs in the last month due to being sick to my stomach.  The horror stories I heard feel like they are coming true. I know they are working due to in 2 weeks undetectable.  I am terrified now at changing meds because everything you read says witching around you grow more of a tolerance to the pills. So whats some of your guys opion.  Such it up and hope it lessens in time or change meds.  Oh the pills I take now are apart of a drug study making everything free including doctor visits.  I think it was this thread that someone is paying a hundred dollars a bottle.  I so don't want to make the wrong decision here. I'm not asking what to do just what would some of you do.  But I am at my whits end with the nausea 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Online Miss Philicia

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Re: No Adherence Issues at all...
« Reply #12 on: December 13, 2010, 01:23:37 AM »
I am terrified now at changing meds because everything you read says witching around you grow more of a tolerance to the pills. So whats some of your guys opion.  Such it up and hope it lessens in time or change meds.  Oh the pills I take now are apart of a drug study making everything free including doctor visits.  I think it was this thread that someone is paying a hundred dollars a bottle.  I so don't want to make the wrong decision here. I'm not asking what to do just what would some of you do.  But I am at my whits end with the nausea  

1) If the switch is done right by your doctor you won't develop resistance issues

2) If your life is miserable due to nausea I'd definitely switch, but only you can tell if it's that bad not me -- these things do often die down after the first month as your body adjusts

3) bottom line is that there are enough other med combos out there that are easy to take, so don't let one bad experience color your thinking with other combos going forward

4) two other one-pill-a-day options are right over the horizon in 2011
"Iíve slept with enough men to know that Iím not gay"

Offline Matty the Damned

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Re: No Adherence Issues at all...
« Reply #13 on: December 13, 2010, 01:37:47 AM »
Quote
.  I am terrified now at changing meds because everything you read says witching around you grow more of a tolerance to the pills. So whats some of your guys opion.  Such it up and hope it lessens in time or change meds.  Oh the pills I take now are apart of a drug study making everything free including doctor visits.  I think it was this thread that someone is paying a hundred dollars a bottle.  I so don't want to make the wrong decision here. I'm not asking what to do just what would some of you do.  But I am at my whits end with the nausea 

Pretty much what Miss P says.

Intolerable nausea is not something to put up with in this day and age. If changing your combo is not an option, you should ask your doctor for a prescription anti-emetic. These are very effective.

MtD

Offline PozJeepGuy

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Re: No Adherence Issues at all...
« Reply #14 on: December 13, 2010, 01:39:31 AM »
the study I'm on is for one of the new quad pills.  I hope it works better for others.  Its a double blinded study so not 100 percent sure but doc and study lady and I all agree just from the side effects I have reported that we believe i am on the new quad pill.  All is well besides the nausea.  First month I felt light headed and somewhat lost at times but those have worn off.  Its just horrible nausea. If they can see how  your blood test will react with the meds, isn't there a way they can do that with side effects. What are anti-emetic. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline Matty the Damned

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Re: No Adherence Issues at all...
« Reply #15 on: December 13, 2010, 01:45:43 AM »
the study I'm on is for one of the new quad pills.  I hope it works better for others.  Its a double blinded study so not 100 percent sure but doc and study lady and I all agree just from the side effects I have reported that we believe i am on the new quad pill.  All is well besides the nausea.  First month I felt light headed and somewhat lost at times but those have worn off.  Its just horrible nausea. If they can see how  your blood test will react with the meds, isn't there a way they can do that with side effects. What are anti-emetic. 

An anti-emetic is a medicine which alleviates nausea and vomiting. An example of an anti-emetic is metaclopramide.

MtD

Offline jkinatl2

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Re: No Adherence Issues at all...
« Reply #16 on: December 13, 2010, 01:45:53 AM »
Intolerable nausea (and you are the only expert in what is and is not tolerable in YOU) is indeed a reason to switch, especially given the wealth of alternatives. With a good doc, and decent strategy, you CAN swap meds without resistance.



to the OP, I can only say that I thought I was being awfully generous when I attributed your rage and other issues to CNS issues related to Atripla. They can and do inspire some awful behavior. I sincerely hope that you are able to work past/through these things, or that a decent doctor can swap some meds that do not interact with your ADD in such a way as to cause hostility, paranoia and rage. The Sustiva portion of Atripla can do that, especially in folks with specific mental disorders. Bipolar personality (often misdiagnosed as ADD) being one.

I know because I am right there with you. My own chemical imbalance, depression, took MONTHS to surface during Atripla. Yet it did just that, with ZERO outside influence and no regard for other therapies.

But that is between you and your doctor. And, of course, this forum, if you choose to continue your snipe hunt. Trust me, we are not the enemy, none of us.

None of us.

*modified to add: I mentioned swapping in lieu of taking medicines, perhaps temporarily, to relieve your nausea. Of course am not even thinking about such organic measures like marijuana. Methinks that Matty and the like might be more right, in the short run at the very least.

« Last Edit: December 13, 2010, 03:59:17 AM by jkinatl2 »
"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 Andy Velez

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Re: No Adherence Issues at all...
« Reply #17 on: December 13, 2010, 09:23:25 AM »
NYCHope and all,

If you feel you are being mistreated in the Forums, please report it instead of getting into snappish exchanges.

Thanks for your cooperation.

NYC, I'm glad to read that your numbers are going in such a good direction. Onward.  
« Last Edit: December 13, 2010, 09:33:22 AM by Andy Velez »
Andy Velez

Offline buginme2

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Re: No Adherence Issues at all...
« Reply #18 on: December 13, 2010, 11:20:32 AM »
Just took my third Atripla last night.  First night was hell, hallucinations, couldnt sleep, was like I dropped some bad acid.   Nights 2 and 3 not so bad but last night I woke up in the middle of the night and it felt like my skin was on fire.  I'm still a little dizzy today.

So, I'm glad you dont have any side effects. 


Offline Hoover

  • Member
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Re: No Adherence Issues at all...
« Reply #19 on: December 13, 2010, 12:08:09 PM »
We are staying off the meds for as long as our numbers hold.
(Above 500 in the US and above 350 in our country)
I think starting meds upon ceroconversion was created by big pharma to sell more meds.
Then again what do I know....

Hoover and Dr. T
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline David Evans

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Re: No Adherence Issues at all...
« Reply #20 on: December 13, 2010, 12:17:52 PM »
NYC,

I'm not sure why you returned if you felt these forums were such a negative place for you? It certainly doesn't bode well at all that you chose to begin your first post back with an attack on one of our moderators and a reference to another member in a flame-baiting manner.

In a couple of PM exchanges I tried to explain in a non-confrontational manner the way in which I felt your posts could have been misconstrued and gave you some tips on how you could potentially get your point across in such a way that you could still share a message of hope without crossing the line into prescriptive or inaccurate statements.

Instead, you played the victim card and got into three more heated exchanges within the space of two days. Our forums are here to help you work out your problems WITH the help other people, not ON other people. There's a distinct difference and you don't seem to get it.

I can sympathize with the fact that your first posts on the site got you off on the wrong foot. Some of our members can be snippy or come off as dismissive. That's why I took the time to try and help you move on and remain a productive member. Though I don't always agree with everything that people post here, I do try and protect everyone's right to hold their own opinion and have a space to share it - RESPECTFULLY.

You seem to have an agenda and a certain appetite for stirring the pot and seeing yourself as a crusader for a group that you see as down-trodden. You've got a clear choice in front of you - cut the victim behavior, move on, and ignore the chuff while you get settled back in.

Frankly, I've got $5 riding on the fact that you'll take this email as a personal attack, rather than a patient attempt to give you another chance, and that you'll throw a bomb in one of the threads while screaming "These people are trying to silence the truth!" on your way out the door. I honestly hope you'll prove me wrong.

David

Offline Andy Velez

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Re: No Adherence Issues at all...
« Reply #21 on: December 13, 2010, 01:12:26 PM »
PS

NYCHope, I missed earlier the reference to "Nurse Rachet" and what is sideswipe at Moderator Ann. That kind of stuff is totally unacceptable here. As I said before if you have a problem with someone, report it instead of that kind of snarky stuff.

David has given you a very understanding warning. If you want to remain in this Forum you need to step back from behavior that if it continues is absolutely going to get you tossed from here.

There is real value to be had for members here as many continue to find. So you have to decide if that value is important enough to you to get off of your self-righteous kick and just settle in to be a member among members.

 
Andy Velez

Offline skeebo1969

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Re: No Adherence Issues at all...
« Reply #22 on: December 13, 2010, 01:24:37 PM »
Just took my third Atripla last night.  First night was hell, hallucinations, couldnt sleep, was like I dropped some bad acid.   Nights 2 and 3 not so bad but last night I woke up in the middle of the night and it felt like my skin was on fire.  I'm still a little dizzy today.

So, I'm glad you dont have any side effects. 

These are generally normal side effects that decrease as time goes on and normally go away within a few weeks.   I made a post earlier in this thread, please ignore it.  Atripla does wonders for many here without nay complaint.  I already suffered from depression so it was obviously a poor choice on my part to use it knowing the possible CNS side effects of the sustiva component.   I hope it gets better for you.
I despise the song Love is in the Air, you should too.

Offline buginme2

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Re: No Adherence Issues at all...
« Reply #23 on: December 13, 2010, 01:56:36 PM »
Anyone know when the new (1 pill, once a day) medicines are coming out?  A couple people have said sometime in 2011.  Anything specific yet?  Are these new pills supposed to have less side effects than atripla or just different side effects?

Also, Just a general meds question.  I know most people start on Atripla.  Is there one medicine that is more efficent (or better ) than another?  I know they work differently and all but you dont ever read that one medicine is better than another.  You only read about how the side effects are different. 


Offline buginme2

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Re: No Adherence Issues at all...
« Reply #24 on: December 13, 2010, 01:58:54 PM »
 :)
« Last Edit: December 13, 2010, 02:03:09 PM by buginme2 »

Online Miss Philicia

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Re: No Adherence Issues at all...
« Reply #25 on: December 13, 2010, 02:32:54 PM »
Anyone know when the new (1 pill, once a day) medicines are coming out?  A couple people have said sometime in 2011.  Anything specific yet?  Are these new pills supposed to have less side effects than atripla or just different side effects?

Also, Just a general meds question.  I know most people start on Atripla.  Is there one medicine that is more efficent (or better ) than another?  I know they work differently and all but you dont ever read that one medicine is better than another.  You only read about how the side effects are different.  



Gilead just filed for FDA approval for the first of it's two "all-in-one" combo pills three weeks ago.  It's the one that combines truvada with rilpivirine.  It usually doesn't take longer than 12 months to get approved from that point.

You can read about rilpivirine here: http://www.aidsmeds.com/archive/TMC-278_1619.shtml

The second Gilead "all-in-one" combo pills will be combining truvada with both cobicistat (a booster like how Norvir is used) and elvitegravir (a new integrase inhibitor like Isentress).  I don't think they've filed it for FDA approval yet, but I was at a Gilead presentation a couple of months ago and it's imminent.

So yes, by the end of next year we should see these both be approved, or at least the beginning of 2012 for the last one I described depending on when they actually file.
« Last Edit: December 13, 2010, 02:39:28 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: No Adherence Issues at all...
« Reply #26 on: December 13, 2010, 09:12:24 PM »
It's scary to pop the first pill but it is less scary than being hospitalized for some OI when there is nothing to fear from meds!


Amen, brother

Start the pills before you are at serious risk of illness.  Because the OI's are not fun and some people don't survive them.  And those who do survive are often harmed in ways that only slowly become perceptible. Whereas you started the pills and, like most who start today, had next to no problems.  The worst fear was fear itself.



So NYCHOPE,1 why not drop the personalities and stick around for a while so you can spread the core part of your message?  It's more credible for the newly diagnosed coming from one of their own.  Just don't imply that it works that way for everyone and we are all good...

Best wishes
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 PozJeepGuy

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Re: No Adherence Issues at all...
« Reply #27 on: December 17, 2010, 01:47:28 AM »
the Gilead study is what I'm on.  From what I have heard its should be on the market in the next 6 month es.  In two weeks of starting I went from a viral load of 120,000.00 to undecthable.  It is one pill a day.  The only side effect I have is the nausea but most people have had little to no side effects.  From time to time if I don't eat before I take it I can get light headed and it makes me very sensitive.  However my doctor and I feel my nausea is from another problem and the study drug just amplii es what ever this other issue is.  I have to say it is amazing to take one pill once aday and know how well it works.  I would like to say thankyou to all those who went threw those horrible drugs to get us to the ones we have now. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

 


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