which hiv drug combos do not cause insomnia?

[witch]

Statistical studies show that hiv positive people experience way more insomnia (inability to sleep) than the general population. Doctors usually downplay that and attribute it to 'depression, drug abuse' and other bunch of BS.

I have severe insomnia since I started hiv meds - both on Stribild and a little less on Complera. I had no problem sleeping before that, even knowing I had aids and still not on drugs, so I am pretty sure my insomnia is caused by the HIV drugs and can't be dismissed as 'due to depression' and even less to 'drug abuse' or other fantasies.

So my question is this: IN YOUR EXPERIENCE (not in theory), which drug combos cause insomnia and which do not?

[witch]

I am asking because I may switch to a combo that is less likely to cause insomnia. I haven't slept well for 6 months ....

[socalpoz]

Hi Witch,

Do you take your meds at night? I have been on Stribild for almost 3 months and take it in the AM with only bloating as a side effect. Also have you share this with your doctor? He may be willing to give you a sleep aid to get you over the hump of the insomina.

[ad2san]

hi there,

you could start a poll with this question ;-) ... I guess the answer will be : None !

I have insomnia and I always took meds in the morning ....

Cheers

[GoForIt]

Tivicay & Truvada is what I'm on for the past 2 weeks.  No insomnia at all.  I fall right asleep and stay asleep for 8+ hours with no sleep aid.

[Jeff G]

I had terrible insomnia while on Atripla and zero problems now that I'm on Intelence and Truvada . I tried to go to an AM dose of Atripla but because it stays in your system so long it made little difference and was actually worse for daytime CNS issues , some of which I used to sleep through . 

[witch]

Thanks for the input, now I have hope that some day I'll sleep OK. I just can't understand why people tolerate such insomnia for years. GoForIt, what was your previous hiv combo or that is your first?

[GoForIt]

Its my first.  Sometimes I get up in the middle of the night to use the bathroom or wake up for a second and check the time but its no insomnia.  I'm tired by 10pm and wake up around 8am.

[leatherman]

Statistical studies show that hiv positive people experience way more insomnia (inability to sleep) than the general population.

that is no so true

March 30, 2012

Insomnia Common, but not Necessarily More So, in HIV
by Tim Horn
Insomnia and daytime drowsiness are common among people living with HIV, but not necessarily more so than HIV-negative individuals, according to a U.S. military study published online ahead of print by Clinical Infectious Diseases.

Insomnia among people living with HIV is considered common, though much of what is known about its prevalence comes from studies conducted in the early years of the epidemic, before combination antiretroviral (ARV) therapy became the standard of care. And while one of the more recent studies found that 73 percent of people living with HIV suffer from insomnia, it was conducted 15 years ago and lacked a comparison group consisting of those not living with HIV.

http://www.aidsmeds.com/articles/hiv_insomnia_sleep_1667_22178.shtml

IN YOUR EXPERIENCE (not in theory), which drug combos cause insomnia and which do not?

actually whatever answer we give you will basically be just a theory because one thing you'll learn about HIV is that everyone has a different experience.

For example, in over two decades, I've been on over 18 medications and NEVER had insomnia. While Sustiva gave me wake-up-screaming nightmares, no med has ever made me lose sleep. I didn't start having any insomnia issues until I lost my home and had to move in at my Mom's house. LOL Just keep in mind that not everything that happens to you will be HIV- or med- related. Aging, stress, weather changes, etc will always be just some of the factors affecting your health.

your best bets? 1) Try taking something OTC for insomnia. That's what has been working for me. 2) Talk to your doctor about a) getting a med to deal with your insomnia or b) changing your regimen - although that seems like an extreme fix, as another regimen could bring about nausea or, even worse, negative side effects (I'm of the "if it ain't broke, don't fix it" mindset, so I got a script for sleeping pills inside of messing with my awesome 9 yr regimen of norvir/truvada/reyetaz)

[witch]

Anyone else with actually useful information, not generalities and dumb 'medical studies'?

[leatherman]

not generalities and dumb 'medical studies'?

no anecdotal evidence and no science??
Just what information are you looking for then?? LOL 

[jkinatl2]

Anyone else with actually useful information, not generalities and dumb 'medical studies'?

Yikes! Sounds like you need a nap!

[witch]

Actually I need a real information from people here. I don't really care what some badly organized 'study' says. Every second medical study has flawed statistical analysis and correspondingly wrong conclusion. The study mentioned, that supposedly there isn't more insomnia amongst HIV poz, reeks of such problems just reading the abstract. So I don't need any of that BS.

Insomnia from HIV DRUGS not HIV itself is real to me and many people on this forum, so arguing it doesn't exist (while you are actually on sleeping pills, leatherman) is kind of ridiculous. No "depression" lasts that long honey, and I'm sure you get pills for that too ...

[Jeff G]

Hi Wich , you have been given useful information so I am struggling to understand what you are upset about . Can you elaborate on specifically what information you find helpful since you have ruled out anecdotal evidence or science ? .

This is not a confrontation , it may really help if you tell us more . If you want a list of HIV drugs and their side effects there is always this .  http://www.aidsmeds.com/list.shtml . 

[leatherman]

(while you are actually on sleeping pills, leatherman) is kind of ridiculous. No "depression" lasts that long honey, and I'm sure you get pills for that too ...

nope. even with 2 dead partners and 20+ yrs of HIV, which adds up to a lot of depression, I've always been enough of a realist/optimistic to never need any meds for depression. (you know, the it-is-what it-is-so-deal-with-it kind of attitude) The OTC stuff I take on some sleepless nights is called "dream water" (it's got some b-something vitamin and some other herbal crap in it - but it works for me!)

how bout this though, no one here is a doctor so you're only going to get crap advice from us (which you clearly think we're already giving you). Why don't you just go talk to how ever many doctors you need to see until you get the answer you want  and quit been so crabby to us when we were only trying to help.

[witch]

Jeff G, the information I asked for is the one you and GoForit gave me.

Leatherman, you clearly do not understand the magnitude of the problem this thread is about. I am not talking about "some sleepness nights" that you can treat with some OTC 'remedy'. Since starting Stribild and Complera, I cannot fall asleep EVERY SINGLE NIGHT.

I appreciate your desire to help but I didn't start this thread to hear generalities like 'talk to your doctor' or badly designed studies claiming that 'there is no problem'. Doctors don't have the answer apparently, since I'm asking here.

[witch]

I had terrible insomnia while on Atripla and zero problems now that I'm on Intelence and Truvada . I tried to go to an AM dose of Atripla but because it stays in your system so long it made little difference and was actually worse for daytime CNS issues , some of which I used to sleep through .

Did your doctor consider Complera (Edurant + Truvada) at the time of switching or Complera wasn't available then?

I am asking because Complera and Intelence+Truvada are both combos of NNRTI + NRTI + NtRTI.

[Jeff G]

Did your doctor consider Complera (Edurant + Truvada) at the time of switching or Complera wasn't available then?

I am asking because Complera and Intelence+Truvada are both combos of NNRTI + NRTI + NtRTI.

No , I tried a few other drugs , I was resistant to one and the other had norvir in it and that made me really sick so we settled on Intelence / Truvada . Im very happy with it .

[jam77]

I had bad insomnia slowly build up after year of Atripla. I never had any problem sleeping before I started treatment. It was gotten to the point that every night, not only I had troubles falling asleep, but I KNEW that I would wake up after few hours (usually 4-5) and be perfectly awake, and unable to sleep for 1-2 more hours. Pretty much every night. So yes, in my experience, insomnia was real and serious.

I switched to Complera 4 months ago. Long story short, the insomnia went suddenly away. For the first 2 months I finally slept fine. Over the last couple of month some insomnia came back, but not nearly as bad as with Atripla. I still wake up many times throughout the night, but every time i fall back asleep - I just have a lighter sleep. The important thing, I feel rested in the morning and during the day. Hopefully it will not worsen though I am still afraid of a slow buildup like Atripla. But  so far my experience has been a very noticeable improvement.

Hope this helps.

[witch]

That's what I observe with Complera too. I was on Stribuild which was causing severe insomnia. Now I am 1.5 months since I stopped Stribuild and started Complera and I fall asleep easier and sleep better, still waking up too early.

The problem is Complera threw me in the opposite direction - now I am too depressive, not interested in anything, everything bores me etc. Classical symptoms of depression. I always have mild depression but since Complera it seems drastically amplified so I'm considering switching to another combo.

[joemutt]

I take a generic form of Truvada and a generic form of Viramune, I fall asleep quickly, sometimes I wake up with a panic attack, but I manage to fall asleep again within 5 minutes. I had insomnia for the first 12 years of my infection but now I do not. I stopped antidepressants (tofranil, remergon) 2 years ago. I learned mindfulness and meditation techniques, I use body scan and mantra recitation to return to sleep. That is my personal experience in dealing with insomnia.

[witch]

hi there,

you could start a poll with this question ;-) ... I guess the answer will be : None !

I have insomnia and I always took meds in the morning ....

Cheers

Your signature shows you are currently on Isentress - it is known for causing insomnia.
Did you have insomnia before that, say on Kivexa/Norvir/Reyataz?

I am starting to suspect that my insomnia is due to Truvada since I had it both on Stribild and Complera and their common part is Truvada.

[bbdoggie]

To Goforit;    I begin my combo of Truvada and Tivicay tomorrow night and wonder if
I should take with food; also am thinking of taking it around 8:00 p.m., I have been taking an aspirin and a melatonin at bedtime for 20 years and read on the paper with my meds that you should not take an aspirin within 2 hrs of the meds. I go to bed around 10:30 p.m.  I am dealing with a cold and thought I would start tomorrow, just got the meds tonight. Any thoughts or encouragement. bbdoggie

[Ann]

I begin my combo of Truvada and Tivicay tomorrow night and wonder if
I should take with food

Tivicay and Truvada can both be taken with or without food. You may want to take them with a meal anyway, as it's an easy way to remember to take them.

[GoForIt]

To Goforit;    I begin my combo of Truvada and Tivicay tomorrow night and wonder if
I should take with food; also am thinking of taking it around 8:00 p.m., I have been taking an aspirin and a melatonin at bedtime for 20 years and read on the paper with my meds that you should not take an aspirin within 2 hrs of the meds. I go to bed around 10:30 p.m.  I am dealing with a cold and thought I would start tomorrow, just got the meds tonight. Any thoughts or encouragement. bbdoggie

Ann is right about everything she said.  I personally take it about an hour after eating dinner just because of timing.  I started taking it at 11pm and then after day light savings 11pm became 10pm so I started taking it at 10....then 10 felt too late so i slowly pushed it up to around 9-9:30 and usually fall asleep 30minutes to an hour later.

Tivicay is a new drug so there is not much on it yet about drug interactions yet.  That is why I take my meds around 9 at night and all my vitamins and other daily pills/gummys in the morning so that nothing has a chance to interact.  My doctor did tell me melatonin and .5 of xanax shouldn't interact with the meds in his opinion but again Tivicay is very new. 

I wish you all the luck in the world with your new meds and hope they are as easy on you as they are for me.

[witch]

GoForit are you taking Melatonin and Zanax before bed ?

[GoForIt]

not anymore.  I was when I first got diagnosed.  I had a lot of anxiety and found it hard to go to sleep with so much anxiety.  After finding the right doctor, getting the right medication, and going down to Undetectable I lost a lot of the anxiety and stopped taking the xanax/melatonin totally. 

[Miss Philicia]

Oh yeah, untreated anxiety and depression will majorly screw up your sleep. But you know half of the people like to insist they don't have this issue and want to blame everything on HIV meds. If they're forced to go see a shrink it can open up that Pandora's Box of nasties.

[witch]

Before starting the HIV meds, I did not have sleep problems, doesn't matter my CD4 was 60 simply because I knew the meds will work.

I do not feel any  'anxiety' or 'depression' now that I am undetectable and CD4 is above 200. So that theory that you see the meds are all good and "it's all in my head" goes down the drain.

The Big Pharma studies, that you live by M P, have well documented "treatment emergent" insomnia appearing when the drugs start.

[Miss Philicia]

I was responding to GoForIt, not you witch. It's not all about you. Or your execration for clinical studies.

[GoForIt]

When I first got diagnosed I saw a Doctor who wanted to immediately start me on Atripla which I was going to do.  Then I saw a second doctor who was much better and explained the side-effects Atripla causes.  He explained Tivicay has no side-effects at all and he's been leading the studies for it and told me that he sees many more side-effects with Atripla and almost no one complaining of tivicay side-effects.....

So I do believe that some of the older medications may not come side-effect free...My Tivicay regimen has been working without side-effects so far.

[Miss Philicia]

Atripla definitely has a higher propensity for side effects than the clinical studies for Tivicay. However, Tivicay is brand new and as more patients take any new drug the data on side effects grows. There is no HIV medication that has "zero" record of side effects, regardless of whether or not your doctor used those words. He may have seen zero in his small set of patients in his study, but that should not be confused with the total data of studies done for FDA approval.

http://www.aidsmeds.com/archive/Tivicay_2422.shtml

The most common side effects associated with treatment containing Tivicay in clinical trials were difficulty sleeping/insomnia and headache.

My bet is that like raltegravir, the dolutegravir (both integrase inhibitors) are the cause of sleep disturbances, even if they are half the rate of a drug like the sustiva in Atripla. Furthermore, anecdotally it seems the type of sleep disturbances differ slightly in intensity.

Stribild has an integrase component elvitegravir (not yet FDA approved for use with other drugs) but I have not seen reports of sleep disturbance/insomnia reports in trial data, and none is listed in the treatment section of this web site. However obviously there are anecdotal reports of it doing so as that's how this thread began.

The bottom line with patient reporting is that you will ALWAYS find someone complaining that each and every medication causes this that or the other -- the real issue is if it's 0.5% of patients, 4%, 10% and so on. It's not like any of these drugs are vitamin pills, they are strong medications.

[Jeff G]

Before starting the HIV meds, I did not have sleep problems, doesn't matter my CD4 was 60 simply because I knew the meds will work.

I do not feel any  'anxiety' or 'depression' now that I am undetectable and CD4 is above 200. So that theory that you see the meds are all good and "it's all in my head" goes down the drain.

The Big Pharma studies, that you live by M P, have well documented "treatment emergent" insomnia appearing when the drugs start.

Your bad attitude is getting tiresome . You would do well to listen and learn from most ALL of the members you make a habit of arguing with about things you clearly do not yet fully understand .

I'm not writing this to attack or upset you, my advise here is something I'm asking you to consider for your and others own good . 

[darryaz]

Witch, yours is a tough question as the same drug can affect people VERY differently.   Especially on something as personal as sleep. 

I've been on Atripla for years and never have trouble sleeping.

Do docs still prescribe Ambien?  That's the only thing that ever worked for me when I was having insomnia caused by amphotericin treatments.  I've heard lots of horror stories about it, although I never experienced any of those problems either.

[Miss Philicia]

Do docs still prescribe Ambien?  That's the only thing that ever worked for me when I was having insomnia caused by amphotericin treatments.  I've heard lots of horror stories about it, although I never experienced any of those problems either.

My doctor prefers the new drug Rozerem for insomnia as it's supposedly non-addictive, but my insurance refused to authorize it saying the generic for Ambien is on the formulary as preferred drug for this -- even though the chemical make up is totally different and if your read the info on Rozerem it acts on natural sleep circadian rhythms whereas Ambien does not.

http://www.rozerem.com/

[witch]

Actually official studies do report 8% insomnia with Stribuild:

http://www.catie.ca/en/treatmentupdate/treatmentupdate-191/anti-hiv-agents/quad-safety-and-effectiveness-issues-depth

Studies sponsored by manufacturers tend to underreport side effects, so the Stribuild insomnia in real life is most probably larger than 8%.

[oksikoko]

My doctor prefers the new drug Rozerem for insomnia as it's supposedly non-addictive, but my insurance refused to authorize it saying the generic for Ambien is on the formulary as preferred drug for this -- even though the chemical make up is totally different and if your read the info on Rozerem it acts on natural sleep circadian rhythms whereas Ambien does not.

http://www.rozerem.com/

Ambien makes me manic and keeps me awake for days. Go figure. Just claim it does the same for you, and maybe you can get this new-fangled Rozerem.

As for me, I rather like insomnia because that's when I get things done.

Actually official studies do report 8% insomnia with Stribuild:

Well, that explains it, then. See you all later. I'm off to not-sleep and possibly finish chapter 4 of this novel.