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.
December 20, 2014, 06:14:22 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 650030
  • Total Topics: 49617
  • Online Today: 168
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 5
Guests: 121
Total: 126

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: The Sustiva/Atripla Thread  (Read 24037 times)

0 Members and 1 Guest are viewing this topic.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: The Sustiva/Atripla Thread
« Reply #100 on: November 12, 2013, 09:12:38 AM »
Maybe I'll go back. I just don't like that the switch to Atripla was for nothing.

It's just my own opinion, but I wouldn't take anything with Sustiva in it if you paid me. Not today, when there are so many other combos out there.

Was it strictly having only one pill to take, or was it more the once-a-day dosing? (Isentress is supposed to be taken twice a day.) If it's once-a-day dosing you're after, Prezista, Truvada and Norvir is an easy to take, once-a-day combo, but it's three pills.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline walkingpoz

  • Member
  • Posts: 33
Re: The Sustiva/Atripla Thread
« Reply #101 on: November 12, 2013, 11:21:06 AM »
It was both the fact that it's just one pill and once-a-day dosing. I'll either change back to Isentress+Truvada after I have run out of Atripla, or stay on Atripla until Tivicay  becomes available or the one-pill Tivicay+Kivexa combo.
But the Efavirenz side effects have decreased a lot compared to the first doses, so I think I'd be able to stick with it a bit longer
10/11: CD4 554, VL 20,893
01/12: CD4 480, VL 104,000
02/12: started isentress+truvada
03/12: CD4 ?, VL 105
04/12: CD4 632, VL UD
06/12: CD4 495, VL UD
09/12: CD4 ?, VL 60
10/12: CD4 790, VL UD

Offline koksi

  • Member
  • Posts: 82
Re: The Sustiva/Atripla Thread
« Reply #102 on: December 23, 2013, 05:17:21 AM »
Hi there.  It's been a very long time since I checked out these forums.  I have been on Atripla since 2009 and have found it tolerable -- but I am beginning to suspect that the side effects are changing or have changed, and did so gradually enough, that I have come to accept a pretty bad situation.  First, prior to Atripla I was on Norvir-boosted Reyataz and Truvada.  I was one of those who had a jaundiced appearance.  This was really rather stigmatising.  I got married over this time (to my husband; I'm gay) and I could see some troubled looks at me during the wedding.  Then I started a new job in a new country, and I could see people examining the whites of my eyes (they were yellowish).  So I started a new job under a cloud of suspicion; due to my circumstances I'm not openly HIV positive (though I'm considering changing that -- I was recently awarded tenure and am less afraid of discrimination).

Anyway:  Atripla.  As I take Atripla at bed-time, I had lots of vivid dreams at first, which I *liked*.  Over the years however, the lucid and vivid dreams have begun to disappear.  However, what seems to be more prominent is disturbed sleep.  I have always been a bad sleeper, so for a long time I just figured this was my normal bad sleeping.  But nearly every night I wake up at about the same hour and have trouble falling asleep again, sometimes for a few hours, sometimes at all.  My job can be stressful, I am a professor at a university and have to perform in front of hundreds of students at a time sometimes.  Those days when I lecture in the morning, I rarely sleep through the night.  Sometimes I don't sleep at all.  But I always wake up regardless of whether or not I'm lecturing.  I get sweaty.  I toss and turn.  And my legs get restless, something very much like Restless Leg Syndrome.

Additionally, I might have been/probably am suffering depression over the last 4 years or so.  Sometimes this involves compulsive suicidal ideation (stabbing myself in the stomach), but I never intend to do anything really, I just think through such thoughts fairly quickly -- they appear momentarily, usually in relation to some aspect of my job I think I'm failing at -- and then they go away.  But more troubling is a low level depression.  I am anxious socially in new ways, feel insecure about almost all social interactions, and prefer to spend a lot of time at home alone watching TV or reading.  Again, the specifics of my situation make this social insecurity hard to interpret:  I moved to a new country and then started the Atripla.  So 'culture shock' and learning to live in a different culture is all part of it.  Not to mention the psychological toll of keeping HIV secret from friends and family.  But I wonder sometimes if the Atripla isn't also contributing to a low level anxiety and depression.  The depression is such that I now notice my happy moods:  they feel distinctly different from my 'normal' moods, which are depressed or else have to do with feeling low about myself.  Also, I think I mask depression with too much caffeine during the day.  When I don't drink lots of coffee I just feel flat and lifeless.

In any case, the doctors (because of the way medical care is delivered here where I am living, I rarely see the same consultant) mentioned something called 'BTripla' which is a different combo that promises fewer CNS side effects?  I don't know what it is though, and apparently has to be taken with food so perhaps is less convenient in terms of consistent or convenient dosing.  I am curious if people have used it and what it's like.

I have told the doctors about the sleep disturbance, but not about the anxiety/depression issues.  Increasingly I am hoping at least to solve the sleep problem.  I was wondering about medications that might work not by *putting* you to sleep, but by keeping you asleep, since it's waking in the night every night that troubles me.  I also think I need to ask for short prescriptions of xanax or something that can help me feel less stressed and more sleepful on the nights before big lectures that stress me out.  Do people have advice about sleeping medication/combinations that can work with Atripla.

Not-so-parenthetically:  I have been undetectable for years after starting treatment, after chronic viremia following infection in 2006; the seroconversion experience for me was awful.  I feel very healthy physically:  the gym, yoga, pilates, the whole bit.  I just wish my sleep were more satisfying and I'm beginning to worry about a creeping depression.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #103 on: December 27, 2013, 08:42:45 AM »
Hi Koksi . I think a med change should be discussed and considered for any one with depression and thoughts of suicide or a history of mental illness . There are other combos that will not contribute to the depression and I hope you follow through and talk to your doctor about this and come back here with an update .   

Sorry it took so long to get a reply to your concerns but the holidays has kind of  messed me up from following up in some threads .   
« Last Edit: December 27, 2013, 09:06:20 AM by Jeff G »

Offline jam77

  • Member
  • Posts: 14
Re: The Sustiva/Atripla Thread
« Reply #104 on: December 28, 2013, 04:31:42 PM »
Kotski, after few years with atripla I found myself in a very similar situation. The sleep troubles were starting to be unbearable, especially for work (similar job), as were other CNS side effects. Consider a med switch as there are many options that have less CNS symptoms. As of myself I switched to complera, and I feel way better than with Atripla - Now I sleep much better, and I don't have any depression issue anymore. I talked about my experience few posts above, hope it helps.
Best,
j

Offline koksi

  • Member
  • Posts: 82
Re: The Sustiva/Atripla Thread
« Reply #105 on: January 06, 2014, 01:57:22 PM »
Thanks to those who responded.  I need to think it through carefully.  This thread has taught me a lot actually, and I appreciate the collective wisdom/advice here.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline Reggie

  • Member
  • Posts: 58
Re: The Sustiva/Atripla Thread
« Reply #106 on: January 12, 2014, 12:15:37 AM »
Hello..

I am new to this all and recently diagnosed in mid November after entering hospital for phenomia. I was diagnosed with HIV and my viral load over a million and CD count of 79.I started Atripla at the end of November and adhering to it. At first effects were major but now alot less althoughs still dont sleep as well and somedays feel depressed.I'm wondering if in part this is due to the meds fighting my high viral load at the moment?...And if as the viral load decreases I will feel better mentally?

I will see the Doc again on 16 and see how all is doing. I have put on 6 kilos I lost when ill and feeling quite strong.Still wait to do my first cd4 count and viral load test since starting anti virals 5 weeks ago. My Doc seems to think I was probably infected 5-7 years ago. I work as a physical trainer so have always been in good shape and wish to continue to keep in shape although of late have felt quite Fatigued.Am working out again but not too hard as dont want to push too hard.

Any information  that can be given on the above will be muchly appreciated.


Still a mental block for me as have a wife who is very supportive and children in their teens that at this point won't tell.

Thanks

Reggie

Offline Azrael2012

  • Member
  • Posts: 43
  • Say Hello! :D
Re: The Sustiva/Atripla Thread
« Reply #107 on: February 13, 2014, 10:53:02 PM »
Hey Everyone

Yeah Ive been on Atripla for since 2009 and had no side effects other than Insomnia which did sort itself out.....but now....Im having night sweats, and the drunken room spinning side effects that I prob should have had years ago...as well as waking up with a foggy head and wanting to vomit all the time......wonder if its time to switch ???

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #108 on: February 13, 2014, 11:04:16 PM »
Hey Everyone

Yeah Ive been on Atripla for since 2009 and had no side effects other than Insomnia which did sort itself out.....but now....Im having night sweats, and the drunken room spinning side effects that I prob should have had years ago...as well as waking up with a foggy head and wanting to vomit all the time......wonder if its time to switch ???

If you and your doctors have ruled other factors out then I would not fear making a change .

More than a few of us has had late onset of symptoms with this drug and that's something some doctors do not think is possible but I know it was in my case and my doctor is a believer now too . Best of luck .

Online Dan0

  • Member
  • Posts: 510
Re: The Sustiva/Atripla Thread
« Reply #109 on: February 14, 2014, 03:28:29 AM »
Hey Everyone

Yeah Ive been on Atripla for since 2009 and had no side effects other than Insomnia which did sort itself out.....but now....Im having night sweats, and the drunken room spinning side effects that I prob should have had years ago...as well as waking up with a foggy head and wanting to vomit all the time......wonder if its time to switch ???

Drunken room spinning side effects? Those hit me at year five on Atripla. It was a 'curiosity' to my ID doc and I went for test after test. MRI, brain scans, and some contraption on my head for five days to measure brain waves. At one point, they thought it might be a tumor! The scan came back abnormal, which precipitated all these other tests. I flat out asked him if it was or could BE related to the meds. He said he 'did not think so'. I switched to Stribild and I have had ONE incident a few days after the switch and none since. A couple weeks ago I had my first follow-up with my doctor and I really laid it all out for him related to the late stage side effects.

His response to my litany of symptoms was, 'I've heard some similar things from my other patients.'  Apparently, I was not the only one. My response was, 'maybe you should LISTEN to them!'

You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Azrael2012

  • Member
  • Posts: 43
  • Say Hello! :D
Re: The Sustiva/Atripla Thread
« Reply #110 on: February 15, 2014, 07:09:05 AM »
Thanks you guys... xx....yeah Im back to see the ID Doc soon.
I have Epilepsy and both docs say its not their meds that cause any sustained interaction but I'm not convinced by what they say.

My numbers were VL UD and CD4 764 and that was 7 months ago, so Ive had em all done again about a week ago.

I would love to have a good a good nights sleep where I don't wake up feeling like Im on a boat and I go crashing into the wall..eek..and now to top it all off I have a staph infection that refuses to go away as its "colonised"  :-\
I never thought of asking about longterm side effects of the Atripla tho I did know that at some stage it may have to be that a switch would happen.....even my Epilepsy meds say say on the bottle "don't take in case of Epilepsy" lol





Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #111 on: February 15, 2014, 07:17:01 AM »
Thanks you guys... xx....yeah Im back to see the ID Doc soon.
I have Epilepsy and both docs say its not their meds that cause any sustained interaction but I'm not convinced by what they say.

My numbers were VL UD and CD4 764 and that was 7 months ago, so Ive had em all done again about a week ago.

I would love to have a good a good nights sleep where I don't wake up feeling like Im on a boat and I go crashing into the wall..eek..and now to top it all off I have a staph infection that refuses to go away as its "colonised"  :-\
I never thought of asking about longterm side effects of the Atripla tho I did know that at some stage it may have to be that a switch would happen.....even my Epilepsy meds say say on the bottle "don't take in case of Epilepsy" lol


Have you talked to your doctor about your suspicion that Atripla is effecting you adversely ?

I am by no means suggesting that you should change your meds but if there comes a time you have thoroughly thought it through and want to do so you may have to insist rather than ask your doctor for a change . I had to do that with my doc's they really did not want me to change but in the end it was my insistence and a new doctor that got me there .   

Offline Azrael2012

  • Member
  • Posts: 43
  • Say Hello! :D
Re: The Sustiva/Atripla Thread
« Reply #112 on: February 15, 2014, 07:45:49 AM »
Hi Jeff,

Um....yeah we did chat about it.....he wants to see the results of these bloods first.

 Im also awaiting surgery and he wants me to be as healthy as possible....he's a great doc and suggested a switch over to Isentress and Truvada to help stop the drunken monkey feeling.....Im on such high doses for the Epilepsy alone Id love to give my liver a rest but I can't.

Weight has also dropped and Im starting to look wrecked, I forgot to mention to him the joint pain Im having...mostly knees and feet.
Ive to see him again later in the week so hopefully il see whats goin on.



Offline auntyjeff

  • New Member
  • Posts: 1
Re: The Sustiva/Atripla Thread
« Reply #113 on: February 20, 2014, 12:55:05 PM »
hi, I'm new to this site i have a question i have been on atripla for a few years i went from CD-4 count of 250 to 946 in this time, i have changed doctors due to lack of care and my new doctor asked if i wanted to change to complera, I'm scared atripla has seemed to work well except for nightmares and anger issues. my next apt is in April where the doctor would like a decision can anyone give me pros and cons of changing

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #114 on: February 20, 2014, 02:41:30 PM »
I think the best way I can answer the question is to say that to my mind there are no cons to a med regimen that works and has few side effects .

If you stop Atripla cold turkey you could always go back to it if if want to without any resistant issues ... resistance mostly happens when you fail to consistently take your meds or do it over time hit or miss . I had to go back to Atripla ounce before I found the combo that is right for me and it was not a problem to do so . 

If you are having the nasty issues that can happen sometime with Atripla you have little to fear by changing your combo ... there is lots to choose from and many have far less side effects .     

Offline Azrael2012

  • Member
  • Posts: 43
  • Say Hello! :D
Re: The Sustiva/Atripla Thread
« Reply #115 on: March 02, 2014, 08:13:11 AM »
Hey Everyone....

Well the news so far is that VL is UD.....so happy about that ,but, Im still having drunken monkey issues....CD4 is now at 694 and after full screen for everything as part of an yearly MOT I'm good.

Insomnia is back with a vengeance again and I'm on Zolpidem again its early days so will see if it helps. It didn't last time.  :-\ Im back to see my HIV doc soon again and will have a long chat about a possible switch, I doubt he will resist that as he told me before, "you're the one taking the meds and we have to make sure you are responding  well and you are comfortable with the regime"

Next week I see my Neurologist and a med change regime is long overdue. Fingers crossed I get a switch and fast.

If anyone has any recommendations about their own switch over Id be keen to hear about it.

Cheers  :)

Offline wolfter

  • Member
  • Posts: 4,741
Re: The Sustiva/Atripla Thread
« Reply #116 on: March 02, 2014, 08:27:48 AM »
I know many people are hung up on taking fewer pills for convenience sakes, but adding more pills to your regimen could be the solution.  I recently had to switch out one of my meds and added 2 more. 

Almost immediately, the feelings that I was going crazy left and my sleep patterns returned to normal.  Everyone has different reactions to the drugs so our experiences differ. 

With so many combos available, it might be worth a little experimenting.  My only complaint now is that I think I'm sleeping too much...lol  I'm not accustomed to a full 8 hours every day.

best of luck
Wolfie

OH, and Sustiva for me was a mind destroying drug also.  Instead of feeling drunk, I always felt high.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Azrael2012

  • Member
  • Posts: 43
  • Say Hello! :D
Re: The Sustiva/Atripla Thread
« Reply #117 on: March 02, 2014, 12:22:04 PM »
Thanks Wolfie

Thats good to know about the Sustiva.  ;)

Id be glad to get back to sleeping a normal sleep pattern again, but, its been so long for that Ive forgotten what that is like  ;D

I will keep ya all informed as to what happens next.

I feel like just stopping my Atripla all together....stupid I know but Im fed up to the back teeth of this. *sigh*

Offline eric48

  • Member
  • Posts: 1,207
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: The Sustiva/Atripla Thread
« Reply #118 on: March 02, 2014, 12:57:31 PM »
If you stop Atripla cold turkey you could always go back to it if if want to without any resistant issues ...

is not consistent with this

http://www.aidsmeds.com/archive/Sustiva_1615.shtml

If you plan to stop Atripla, you may want to ask your doc to script the Sustiva and Truvada separatly

Resistance do occur outside of the non-adherence issue: it was observed in the SMART trial where patients where ordered by the cilinical trial staff to stop meds but were not explained who to do it safely.

Resistance to Sustiva (and even more, from NVP) was observed in that context

If you ask you doc about HOW to stop meds, and ask in an educated fashion, then doc will know you are serious about it and may be more prone to script a switch

BTW, this is one of the things that I do not like so much about combo drugs: they mix drugs with different pharmacokinetic profiles (and wait until Injectables: they are like Hotel California: you can check-in anytime, but you can never leave): good for BigPharma, not so much for the patient

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #119 on: March 02, 2014, 05:03:34 PM »
is not consistent with this

http://www.aidsmeds.com/archive/Sustiva_1615.shtml

If you plan to stop Atripla, you may want to ask your doc to script the Sustiva and Truvada separatly

Resistance do occur outside of the non-adherence issue: it was observed in the SMART trial where patients where ordered by the cilinical trial staff to stop meds but were not explained who to do it safely.

Resistance to Sustiva (and even more, from NVP) was observed in that context

If you ask you doc about HOW to stop meds, and ask in an educated fashion, then doc will know you are serious about it and may be more prone to script a switch

BTW, this is one of the things that I do not like so much about combo drugs: they mix drugs with different pharmacokinetic profiles (and wait until Injectables: they are like Hotel California: you can check-in anytime, but you can never leave): good for BigPharma, not so much for the patient

Cheers

Eric

Not so much an issue when you go to another combo while undetectable on your current regimen but the truth is you are right to point this out that there is no room for emphatic statements on the issue of resistance . 

Offline Azrael2012

  • Member
  • Posts: 43
  • Say Hello! :D
Re: The Sustiva/Atripla Thread
« Reply #120 on: March 02, 2014, 10:08:01 PM »
Yeah Id rather have the meds broken up into something more manageable that will not interfere with my epilepsy meds as the dosages for those three already are at their highest peaks and seizures are uncontrolled by them again.

And my staph infection has started again....is it any wonder Im ready for running.

Thanks everyone for all yer help so far, its greatly appreciated x

Offline zach

  • Member
  • Posts: 1,905
Re: The Sustiva/Atripla Thread
« Reply #121 on: March 02, 2014, 10:45:13 PM »
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #122 on: March 02, 2014, 10:49:26 PM »
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

There are other meds so do not let them talk you into doing any regimen you are not comfortable with . I think ... no, I know I suffered severe issues with that drug too . 

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: The Sustiva/Atripla Thread
« Reply #123 on: March 05, 2014, 08:05:10 AM »
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

Zach, by all means, refuse Sustiva. It being a (potential) cause of suicidal ideation is well known, even though some doctors either never got the memo, or pretend they haven't.

Do you have any resistance problems or are you free to take whatever combo you feel will suit you best?

I made it clear to my doc that NO WAY would I take Sustiva. I ended up choosing Prezista, Norvir and Truvada and I'm very happy with it. It's three pills once a day, and the only caveat is that it needs to be taken with at least a small amount of food for maximum absorption. He was happy with my choice as it also has a good track record of crossing the blood/brain barrier with little to no CNS side-effects. This combo has one of the lowest side-effect profiles available.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wolfter

  • Member
  • Posts: 4,741
Re: The Sustiva/Atripla Thread
« Reply #124 on: March 05, 2014, 08:40:00 AM »
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

That fear in itself is reason enough not to take this drug.  If you're battling your doctor over decisions like this, perhaps it's time to move on.  My previous idiot doctor totally dismissed my every concern when I took this drug.  In the midst of taking it, my life suddenly went to hell and it sent my already depressed mind into a deep abyss.  It was so bad that I decided to simply stop taking a drug that was whacking what little bit of sanity I had left.

Through some sort of divinity, I was introduced to the greatest doctor imaginable in the ER of a neighboring county.  I'm pretty sure they simply wanted him to sign off on the palliative care orders while I laid in that ward with a giant ďhaz matĒ sticker on my door.  (Yes, even in this day and age.    )

We have a unique relationship and I trust this doctor with all my being.  I think that is probably the most important thing Iíve learned on this journey.  I will never again have any health care professional that doesnít reasonably address my concerns.

A short while back, I had terrible issues with part of my combo, Isentress.  It was an awesome drug at first and got me to UD pretty quickly.  But severe insomnia reared its head and I had no choice but to drink a few glasses of wine every night if I wanted sleep.  I was very honest with my doctor and he made a switch that is currently beyond wonderful.  I think itís the first time in my almost 30 years where Iím on something that has no side affects.

The doctor/patient relationship is, in my opinion, the most important aspect of living with this virus. 

Take care and best wishes
greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline ShadesOfGrey80

  • Member
  • Posts: 27
Re: The Sustiva/Atripla Thread
« Reply #125 on: March 06, 2014, 04:40:57 AM »
Today is my day 2 on Sustiva/ Kivexa...

I think it is great that everyone is sharing their thoughts on the drug but at the same time it is also rather scary to hear something like this at the beginning of a treatment as most of the stories shared on Sustiva here are negative.

Guess will have to keep an eye on my cognitive function when I see the clinical psychologist for my cognitive function test in 6 months.


Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #126 on: March 06, 2014, 07:41:07 AM »
Today is my day 2 on Sustiva/ Kivexa...

I think it is great that everyone is sharing their thoughts on the drug but at the same time it is also rather scary to hear something like this at the beginning of a treatment as most of the stories shared on Sustiva here are negative.

Guess will have to keep an eye on my cognitive function when I see the clinical psychologist for my cognitive function test in 6 months.



Hi Shades ... this thread is intended for anyone who wishes to speak about their own experience with the drug but its people who are unhappy that are most vocal on most all issues in life . I have said several times along the way in this thread that Atripla / Sustiva is a great drug or combo for many people .

In n a nutshell ... because of the nature of the potential symptoms this drug can have on people it deserves a high level of scrutiny .

Offline ShadesOfGrey80

  • Member
  • Posts: 27
Re: The Sustiva/Atripla Thread
« Reply #127 on: March 06, 2014, 09:02:11 AM »
Hi Jeff,

Thank for the reminder and sorry for freaking out. Again, I think it's great to see different experiences on here so we can be aware of possible side effects.

 :)

Offline Almost2late

  • Member
  • Posts: 483
  • "The Nutcracker"
Re: The Sustiva/Atripla Thread
« Reply #128 on: March 22, 2014, 11:12:07 PM »
Hi everyone,

I just had a smoothie after my Atripla dose.. Will it still do its job and kill the VL?  I'm not too worried about side effects just worried if about it doing its job right now.

Frank
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

ďNothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.Ē - Nostradamus

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #129 on: March 22, 2014, 11:15:53 PM »
Hi everyone,

I just had a smoothie after my Atripla dose.. Will it still do its job and kill the VL?  I'm not too worried about side effects just worried if about it doing its job right now.

Frank

Eating or drinking does not impact the drugs effectiveness, it only can increase the potential side effects .

Offline Almost2late

  • Member
  • Posts: 483
  • "The Nutcracker"
Re: The Sustiva/Atripla Thread
« Reply #130 on: May 17, 2014, 08:38:24 PM »
Hi everyone,

Still on Atripla and I never miss a dose. My cd4 is up to I think 184:D, but my VL still not undetectable yet, at about 600:P, I think thats what he said.. Wont know for sure till I get a hard copy for my records.. also the doc said geno & pheno test show no resistance (again).. Now I am happy to have my cd4 climb up, but I'm a little concerned that my VL didn't go to UD.. Why does it take so long to go down? Is Atripla weaker than other meds? The test was from May 6, I was expecting something in the low 100s to UD.. Is this normal? I'm sorry for being such a fucking whiner, but you guys are like my HIV guru's ... "Help me Obi Wan Kanobi you're my only hope."  :) Thanks




"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

ďNothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.Ē - Nostradamus

Offline Matts

  • Member
  • Posts: 231
Re: The Sustiva/Atripla Thread
« Reply #131 on: July 21, 2014, 02:38:06 PM »
I am sure that all members always read the AM News :). But I want to post this link again:

"Sustiva (Efavirenz) Linked to Doubled Risk of Suicidality"

http://www.poz.com/articles/Sustiva_suicide_761_25901.shtml

 All Sustiva/Atripla users, please watch carefully Your mood.
triumeq

Offline medic01

  • New Member
  • Posts: 1
Re: The Sustiva/Atripla Thread
« Reply #132 on: September 01, 2014, 07:46:47 PM »
Hi all, newbie here, I have a quick question, I was recently diagnosed July 31,2014. My VL was not bad, so my doctor put me on Atripla, I have to say Ive never experienced side effects from a drug before like this. I thought I would give it the recommended two weeks to see if they would go away but they haven't. I work at night, so I take my meds before going to bed in the morning, but when I awake I feel like im cracked out, and high for at least half the day. Is there another med out there that you could recommend that my doctor put me on that is not as bad as Atripla?

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #133 on: September 01, 2014, 07:51:44 PM »
Welcome to the forum . If you are not resistant to any meds then you have many choices to go to . Im sure others will be by to advise on what meds they are on . I went from Atripla to truvada and intelence and have not had a single bad thing to report, very happy with the change . 

Offline sidd34

  • Member
  • Posts: 6
Re: The Sustiva/Atripla Thread
« Reply #134 on: October 25, 2014, 07:25:22 AM »
HI everyone..
New to this forum and HIV! Enjoying the read...
I started my meds a month ago and did my first test this week. To my surprise my CD4 has sky rocketed from 660 to 1540 and VL dropped from 148000 to 1202 within a month. I am on Viraday and seem to be doing OK... but reading these posts looks like the side effects of Atripla (Viraday) dont reduce over time? I do get a fuzzy head and that "hangover" feeling...Also occasional restless/sleepless nights.. Saying that its only been a month since I have been on medication. Is it worth giving Viraday few more months to see if there are any changes in the side effects before asking my doc to change the meds?
Apologies if this sounds like a basic question but new to all this!

Thank you, S

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #135 on: October 25, 2014, 08:43:08 AM »
HI everyone..
New to this forum and HIV! Enjoying the read...
I started my meds a month ago and did my first test this week. To my surprise my CD4 has sky rocketed from 660 to 1540 and VL dropped from 148000 to 1202 within a month. I am on Viraday and seem to be doing OK... but reading these posts looks like the side effects of Atripla (Viraday) dont reduce over time? I do get a fuzzy head and that "hangover" feeling...Also occasional restless/sleepless nights.. Saying that its only been a month since I have been on medication. Is it worth giving Viraday few more months to see if there are any changes in the side effects before asking my doc to change the meds?
Apologies if this sounds like a basic question but new to all this!

Thank you, S

Atripla or Viraday is a great drug for many and yes, sometimes it takes awhile for the side effects to settle down. If you can bare giving it a little more time to see if things get better, although a month is a considerable time already to know if you can tolerate it . There are other combos that may be a fit for you so don't be shy about asking questions on the forum or insisting that you doctor make a change if need be .

The worst part of HIV treatment should have to be having to remember to taker your meds or figuring out how to pay for it and not how it makes you feel . I switched from Atripla to Intelence / Truvada and have zero side effects ... absolutely none .     

Offline sidd34

  • Member
  • Posts: 6
Re: The Sustiva/Atripla Thread
« Reply #136 on: October 27, 2014, 02:46:17 AM »
Thanks Jeff, I am going to keep taking Viraday for another month and see how I go!
Will keep you guys posted on how I do!

Cheers, S

Offline guitargal

  • Member
  • Posts: 62
Re: The Sustiva/Atripla Thread
« Reply #137 on: December 01, 2014, 01:51:00 AM »
i just wanted to chime in about my experience with atripla.

 the summer 2010 i was screaming at my stepdaughter for no real reason..always annoyed at everyone, couldn't work my stupid part time job.
late winter 2011 it got worse..

with me I had anxiety that progressively got worse. anger, mad at people for the tiny things i never got upset about..i was forgetful, had a hopeless feeling (even though things were going so well in my life, best ever) and the nightmares. waking up screaming and crying.

I had a lot of leg pain and cramps at that time.  i also had a few episodes where my legs just gave out..one minute they were there and the next i was holding my self up on the counter..

I did have a few thoughts about driving my car off the road or jumping from a bridge.. never thought like that in my life. i wanted to crawl in a ball on the floor and sleep next to my bed..WTF!!??

I spoke to my dr. about the dreams and anxiety.
he did not offer any anti anxiety meds. he said some people have a "squirrely mind" what ever that means. Said we could switch in the future it it was that bad convinced me to stay on..numbers were good don't rock the boat.. never told me that the med was known to have these issues.

a friend told me
 by mid May 2011
so things got worse , I called and told them i was going out of my mind and needed to go off..they said i had to wait for my next appointment, 2 months out..mid July..
i called again a few weeks later..same deal..this is the doc i had been seeing for 12 years!

about 2 weeks  before my appointment i was out of the RX and just stopped. the thoughts anger and dreams were just too much..i was going to ruin my relationship with the constant bitching and being pissed off..

i had been through every hiv drug since 1992 and i had enough.

after a week or so my mind was clearer, i was happy! myself again.dreams subsided..like i was awakened from torment, released form from prison..

legs still hurt. slept better..

thinking he would give me a new cocktail..
at the appointment he told me to stay off meds and see if my leg pain and cramps would get better..

in hind sight he was wrong. he was not prepared to figure out a new cocktail for me.i found out it is against CDC  and WHO guidelines to take  a patient off meds.. IRIS or other OI could happen..also my VL shot up and i was more "contagious" we always use condom;s but still, i didn't think or know my VL would jump so high so fast..

legs got worse..then my arms and wrists and ankles..my whole body stabbing pains. like someone had a voo do doll of me!

i called, this was 2 weeks after said appointment.. he did NOT give me a new cocktail still.he ordered gabapentin..i took one dose and that was not fun at all..(too high a dose like he prescribed is not recommended for patients w/ kidney loss..also one is supposed to start at a low dose, 100mg  3x a day ? and work up , not 900 mg a day from day one!

i called another ID doc and got an appointment for a second opinion..

by the time i got in to see her and put on complera over 2 months went by and my pain was worse.

fast forward..the tenofovir most likely caused kidney damage that went un noticed since 2008 

(diagnoses with CKD in Spring 2014) (truvada,atripla,complera then also stribild!)
how they could not see that i had poor kidney  blood tests is beyond me..i went back and got my records and sure enough the kidney loss was there. i took the records to the nephrologist and he said i had stage 3 kidney disease since 2008..

i later learned what the tests mean , eGFR and creatinine and can follow them now. i followed my labs before but only some of them..it is the dr.'s job, unfortunately they miss things and kept giving me meds i should not have been on..

so..my advice is to learn what the labs mean, if you have a gut feeling the meds are making things worse, please do not let the doc push you around..

(they had me stay on meds even with yellow eyes and skin, telling me my numbers are good and i could wear sunglasses,,yes he said that!)

you can switch meds..there are a lot of options for many out there..






Offline zach

  • Member
  • Posts: 1,905
Re: The Sustiva/Atripla Thread
« Reply #138 on: December 01, 2014, 04:12:16 AM »
i'm not one for conspiracy theories, think people that buy into them are mostly nut jobs.

but i see something going on with atripla, and have to wonder. it sure does feel like a lot of doctors simply hand out atripla scripts with little thought, and no second guessing that decision.

is gilead pushing that?

i was dx'd very sick, teh aids from day one. tossed a bottle of atripla, with little guidance or counsel. one standing order, TAKE THE PILL. never, at any point, did that doctor say anything about known cns side effects or contraindications in people with known bipolar type disorders.

even after a suicide attempt, doctor simply said "well, we don't want that to happen again" no shit man. he tossed me another bottle, keep taking your pill. even as i complained i was coming apart at seams. TAKE THE PILL.

getting onto a different med (and doctor) was the BEST thing i've done in this fight. wish i had known from day one, i would have told them hell no, that i was a nut job long before aids. i don't ever need to make that worse

there is no doubt atripla beats hiv down. it does the job. at what cost? there are many other combos that are effective, without the risks.

if you find yourself in this hole, speak up, loudly

Offline Ptrk3

  • Member
  • Posts: 190
Re: The Sustiva/Atripla Thread
« Reply #139 on: December 01, 2014, 09:30:25 AM »
Don't know if there's a conspiracy, but maybe ID's tend to put newly diagnosed HIV positive patients on Atripla because that was the first combo?  So maybe some ID's are lazy and go with the flow, if they insist on continuing with Atripla when patients complain about side effects. 

I was diagnosed in hospital with PCP in August 2013, cd's of 9 and VL of 111,000, and was immediately put on Atripla and have not missed a dose since.  Other than some vivid dreams (which have been cool!), I've not noticed negative side effects. I reached UD in about a month, and CD's are rising slowly (149 in September--still low, but much better than 9!).  I've not had a physical illness since starting ART.

I certainly agree with you, Zach, that there are several other single pill combos out there that are effective alternates to Atripla, if patients have negative side effects and bring those side effects to the attention of the ID.  If the ID does nothing, it's time to change ID's, absolutely, as you did Zach.  One must own this disease and stomp it into the dust in the way of his or her choosing (with ART, of course, not with herbs and spices  ;) )

Offline zach

  • Member
  • Posts: 1,905
Re: The Sustiva/Atripla Thread
« Reply #140 on: December 01, 2014, 10:01:09 AM »
not with herbs and spices  ;) )

i see what you did there...  ::)

i'm going to put the rest of my thoughts on this in my treatment thread, i realized writing it i stray off on a tangent

Offline Miss Philicia

  • Member
  • Posts: 24,516
  • celebrity poster, faker & poser
Re: The Sustiva/Atripla Thread
« Reply #141 on: December 01, 2014, 10:57:08 AM »
Don't know if there's a conspiracy, but maybe ID's tend to put newly diagnosed HIV positive patients on Atripla because that was the first combo? 

I think you mean that Atripla was the first all-in-one dose medication for HIV, it was not the first "combo", which could just mean anything other than mono-therapy. "Combination therapy" became available once we could combine different classes of HIV meds, or in 1996.

There's no "conspiracy" by Gilead (btw, Atripla is a Gilead/Brisol-Meyers joint venture, and anyway Gilead also markets one other all-in-one fixed dose HIV med, Complera). Atripla is doled out the most because it has the longest history, and doctors figure most new patients prefer simplicity and not multiple pills. The other fixed dose possibilities are newer, so unless the doctor treats a lot of HIV patients he/she will be less familiar with them.

At any rate it is still negligent of any doctor not to inform a patient of possible side effects, and additionally at least in the two states where I live a pharmacist dispensing something to a new patient will additionally ask if the patient is aware of possible side effects. And, of course, any new prescription routinely comes with a package insert that the patient should read, so one could argue that the new patient is also complicit in this circle of negligence, though obviously the doctor is most responsible.
"Iíve slept with enough men to know that Iím not gay"

Offline zach

  • Member
  • Posts: 1,905
Re: The Sustiva/Atripla Thread
« Reply #142 on: December 01, 2014, 11:17:41 AM »
i'll admit to being complicit

i filled out a questionnaire, one of the questions "do you have a history of mental illness" i checked no... that is on me alone

when asked if i was aware of the side effects, i read the print out given with the meds, and answered yes

that was the extent of my initial involvement in the decision (i didn't know it was a decision that could be made either)

somewhere in all those warnings, yeah it mentions a history of mental illness. it also pretty much says (exaggerating here) may cause sudden death

they overwhelm you with the possibilities

just look at this thread, the commonality is cns and mood side effects due to sustiva

i've since read the warnings on all my meds, they all read very similar. maybe not neon flashing, but that particular risk, and the importance of that question about history... i think should stressed more than it was for me

at a time i was laying in a hospital bed, yeah, i felt overwhelmed

Offline Miss Philicia

  • Member
  • Posts: 24,516
  • celebrity poster, faker & poser
Re: The Sustiva/Atripla Thread
« Reply #143 on: December 01, 2014, 11:27:57 AM »
Because the CNS issue effects a higher percentage of patients than side effects from other HIV meds it's imperative that the doctor fully inform the patient. I was merely wanting to point out that there are/should be checks and balances if that fails -- the pharmacist and the medication insert.

I will never excuse a doctor that prescribes this medication without fully going over the suicidal ideation and CNS/depression issues. Then again I don't even think this medication should be on the NIH first line recommendation list any longer.
"Iíve slept with enough men to know that Iím not gay"

Offline Ptrk3

  • Member
  • Posts: 190
Re: The Sustiva/Atripla Thread
« Reply #144 on: December 01, 2014, 06:21:25 PM »
Thanks for the clarification, Miss Philicia, on the "combo" business.  I appreciate it, as "exactitude in small matters is the essence of discipline."  I want to write things correctly, so thanks much.

On the Atripla matter, as written, I do take it.  So far I've not noticed any side effects but I do know that a lot of folks on the forum think Atripla should be ditched and I have read the reasons.  If I talk to my ID about something else, does it matter if it's any one of the other single-pill combos?   What would you recommend, if not Atripla?

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,238
  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #145 on: December 01, 2014, 07:02:28 PM »
Thanks for the clarification, Miss Philicia, on the "combo" business.  I appreciate it, as "exactitude in small matters is the essence of discipline."  I want to write things correctly, so thanks much.

On the Atripla matter, as written, I do take it.  So far I've not noticed any side effects but I do know that a lot of folks on the forum think Atripla should be ditched and I have read the reasons.  If I talk to my ID about something else, does it matter if it's any one of the other single-pill combos?   What would you recommend, if not Atripla?

I think you may have got the wrong message . We are trying to say that doctors and patients need to discuss the possible CNS side effects and warn people with mental illness they should avoid Atripla . If you are on Atripla and its working side effect free then stay on it Ö. if it aint broke donít fix it .

 


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.