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Author Topic: Working through Sustiva "drunk" feeling?  (Read 4633 times)

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Offline havisham

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Working through Sustiva "drunk" feeling?
« on: March 25, 2008, 11:06:57 AM »
Hi Folks - I started meds two months ago - I'm on Sustiva and Truvada - seems to be working OK - was just wondering if anyone had any tips for coping with the weird vertigo-like effects it has?
My problem is that I work irregular shifts - I take my meds at 10pm - sometimes that's almost bed-time, but if I'm on an early shift the next day, I'll have stayed up to take them, and if I'm on a late shift, I'm at work at 10pm with maybe another 4 or 5 hours to go before I can go to bed. It's not impossible to work while I feel weird, but it's not ideal
 - I have no science to back this up, but it seems to me that the more water I drink during the day, the less drunk I feel after taking my pills.
Also have fantastically dry skin and bad circulation in my erm.... extremities
On the other hand, my CD4 has more than doubled in the first two months, so I'm reluctant to mess about with things just yet.
Any ideas?

Ta
"Bigger teeth than those of mice have gnawed at me."

Offline BT65

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Re: Working through Sustiva "drunk" feeling?
« Reply #1 on: March 25, 2008, 01:35:08 PM »
Well, Ta, I can tell you that I tried Sustiva and couldn't tolerate the side effects.  I'm not saying that you should jump off the Sustiva bandwagon, please don't take it as that.  Especially since your Ts are doing so well.  If you have dry skin (as I do) then drinking water will only improve that. 

There is someone on these forums, DavidNC, who takes his Sustiva (or maybe it's Atripla, which contains Sustiva) in the morning and that seems to work well for him.  I really have no solid advice to give on that matter. 

It's just a juggling thing.  Good luck with it, though. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline sprockett9

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Re: Working through Sustiva "drunk" feeling?
« Reply #2 on: March 25, 2008, 03:02:41 PM »
hav,

I have quite a few friends that have had weird side effects.  I can tell you that is why I stayed away from that and chose differently (just because I was concerned).

For what it is worth, my Dr. and I agreed on Truvada and Viramune -- I have been on for two years now.  If there are minor side effects (possibly bowel at times), that is all I have -- if any really.  While I agree that if it is working, you shouldn't necessarily "fix it", Sustiva is one of the ones I have heard the most about side effects in mental/body feelings.  And I have heard a 50/50 on people that some it goes away after a couple weeks and some it doesn't and they change.

My philosophy is that it is better to ask than not -- including your Dr.  For me, my job that pays my health care follows right after my overall health.  If it is impacting your job performance, talk to your Dr sooner than later.

Dean
Dean

Offline neojeepguy

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Re: Working through Sustiva "drunk" feeling?
« Reply #3 on: March 26, 2008, 11:05:33 AM »
Hey Guy,

Good luck with the Sustiva, I have been on it in a 3 drug combonation then on it with Truvada & now on Attripla. One of the things I would definitely say is that you should definitely follow the eating recommendations which is I believe don't eat two hours before & one hour after.

I have personal anecdotal evidence that if I eat my side effects are much worse. One of the things I would definitely say is that you should definitely follow the eating recommendations which is I believe don't eat two hours before & one hour after.   ::)

The info I got from my Doctor is that Sustiva has about the best record in the business for keeping the virus in check & boosting t-cells.

Stay Mighty,

Chris ;D

Offline ianbar

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Re: Working through Sustiva "drunk" feeling?
« Reply #4 on: March 26, 2008, 01:03:34 PM »
Hi, I would agree with Chris, keep to the eating guidelines when possible, as I've noticed the dizziness  seems more pronounced if I eat late,  Of course the recommendation is to have a snack when taking Truvada,  but I just have  a glass of milk to wash the tablets down with.

Otherwise, other than vivid dreams, I've had no other side effects in the two years I've been on the combo. Viral load is undetectable and CD4 count is a great deal better than it was ...

so good luck!

Ian  :)

Offline havisham

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Re: Working through Sustiva "drunk" feeling?
« Reply #5 on: March 26, 2008, 01:29:52 PM »
Hey - thanks for the advice

I don't usually eat for 3 or 4 hours before I take my pills - I might try not having a snack before the Truvada and see if that helps.

I'm seeing my doc tomorrow, so I'll ask whether I can be a little more flexible about the time I take them - an extra hour or so later would help quite a bit, I think.

I think I need to give it more time to settle down too. I'm kind of thinking that if my results keep heading in the right direction, then maybe in the scheme of things a little dizziness is a small price to pay!

 :)
"Bigger teeth than those of mice have gnawed at me."

Offline RWR

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  • Nothing changes unless you change something
Re: Working through Sustiva "drunk" feeling?
« Reply #6 on: March 26, 2008, 03:59:49 PM »
I have been taking atripla at bedtime but am reved up so have to take xanex and temazapam sometimes more.  Doctor has changed to taking in the morning as of this morning and have a reved up feeling today so maybe i will sleep tonight
Hiv+ 1986
Isentress
Truvada

Bobby

Offline jonc1959

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Re: Working through Sustiva "drunk" feeling?
« Reply #7 on: March 27, 2008, 12:36:36 PM »
Just to add another experience... I had "drunk" feelings, too when I was on Sustiva. I was told they would go away after awhile, but in my  case, I felt they only got worse ("drunk" feeling almost exactly 1 hour after taking, plus fuzzy & depressed mental state), so after 6 months or so I switched to Viramune with the Truvada. I agree with the other poster that the only possible side-effect I have is loose stools occasionally & even then not what I would call diarrhea. My T-cells are in the 700's and have been undetectable on both regimens - well over 6 years now. On a related note: I used to be on Combivir with the Sustiva, but switched that out because it was making my white blood cell count low, which in turn made the T-cells "read" low, even though the doctor said they most probably weren't. Anyway... I can honestly say I feel 100% normal & healthy in an average sort of way & most days totally forget I have this stupid virus hiding somewhere inside. Good luck & don't be afraid to consider change if you're not feeling better soon!

Offline sprockett9

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Re: Working through Sustiva "drunk" feeling?
« Reply #8 on: March 27, 2008, 02:38:48 PM »
JonC,

It is good to hear from someone on the same regimen as me!  And glad to hear your experience has been similar.  Have you been on Viramune for 6 years?  I have only been on two and so far so good -- but always worry about resistance.  My Dr tells me that with my case, if I stick to my schedule, I could be on the same drug regimen for years and years.  But I always have that worry in the back of my mind that I could become resistant tomorrow.

while that could still be the case, still good to have positive news!!!

Dean

Offline Brian360

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  • Just livin' it up until the sun goes down.
Re: Working through Sustiva "drunk" feeling?
« Reply #9 on: March 27, 2008, 03:53:28 PM »
When I was diagnosed back in 2004, my doctor had prescribed the same regimen.  Although he didn't mention the side effects, because of them I stopped taking all the medications.  My latest regimen was starting to fail and so when the doctor (a new doctor) remarked about taking Sustiva and I was kinda hesitant.

In the beginning, I would take them before bedtime and the dreams were spectacular to say the least.  Way too vivid and at times it was hard to tell them from dream or reality.

On this current regimen, I still had the trippy dreams but have either gotten used to them or just enjoy the ride while sleeping.  Unfortunately, I can't comment on taking Sustiva and trying to work through a day.  I've been told by both doctors it was best to take them before going to bed.

But by all means either alter your medication schedule but DON'T give up!
July06: Tcells 0, VL >+750,000
Aug06: TCells 22, VL 214,000
Sep06: TCells 32, VL 34,500
Oct06: TCells 92, VL 9,560
Dec06: Tcells 27, VL 25,000
Jan07: Tcells 43, VL - un-detect
Jan10: TCells 111 - popped to 160 fall 09, VL  undectable since Oct. 07

Offline havisham

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Re: Working through Sustiva "drunk" feeling?
« Reply #10 on: March 27, 2008, 07:07:05 PM »
Bit of an update then - saw my doc this morning, and my results are really good - he's concerned about my quality of life and doesn't want me to have to put up with drugs that make my life difficult. He's suggesting I could switch to Reyataz - more pills a day, but no drunken-ness.

I really want to be sure that I can't live with it before I do anything, so I'm going to give it another six weeks before making up my mind. Saw the pharmacist too, and she says that I can take the Sustiva anything up to 2 or 3 hours later than usual when I'm on a late shift without worrying, so I'll give that a shot as well.

It's all a learning process isn't it?
"Bigger teeth than those of mice have gnawed at me."

Offline havisham

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Re: Working through Sustiva "drunk" feeling?
« Reply #11 on: March 27, 2008, 07:08:33 PM »
Forgot to say thanks for your suggestions - makes a difference to be reminded that I'm not dealing with this by myself!

 :)

Steve
"Bigger teeth than those of mice have gnawed at me."

Offline jonc1959

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Re: Working through Sustiva "drunk" feeling?
« Reply #12 on: March 27, 2008, 08:13:48 PM »
Sprokett
No, the Viramune has only been about 4 or 5 years. I know they were a little worried to switch me to it with a healthy immune system, because there is a higher chance of a serious reaction in people with strong immune systems. I started at a half-dose for a week or so & then went to full dose with no problems; the reaction always happens soon after starting, if it's going to happen at all. Right now I wouldn't change a thing with my treatment, except to wish I didn't have to have check-ups & bloodwork quite so often (4 times a year), but that's not such a big deal in the grand scheme of things. BTW, I'm 49 now & was diagnosed in May of 2001. I waited til April of 2002 to start treatment, which is something I wouldn't do again, in hindsight. I think I was worried that the sooner I started, the sooner I would become resistant, but now they're finding that the sooner you get treatment & become non-detectible, the better. I let my T-cells get down to the high 200's & my viral load was crazy-high and now I can only wonder what potential long-term damage that year without treatment did. But I want to repeat - I feel GREAT and honestly don't give this virus much of a thought 99.9% of the time.

Offline talljaxman

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Re: Working through Sustiva "drunk" feeling?
« Reply #13 on: March 28, 2008, 07:46:39 AM »
I started taking Truvada and Sustiva in May 2006, In August 2006 switched to Atripla which is the same only one pill instead of two.  I was told to take them before bedtime to keep from having any of those side effects.  I have noticed over the 1 1/2 that I have been on them that if I follow the recommended times for eating.  2 hours before that I usually don't have any problems.  Also have noticed that when I am really tired I notice the vertigo feeling after and hour of taking the meds.  So I would say don't eat for 2 hours before and take them right before bed. And get plenty of rest.   Also have noted that if I have to get up in the middle of the night prior to 4 hours of sleep that I have the real dizzy feelling.

Offline sprockett9

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Re: Working through Sustiva "drunk" feeling?
« Reply #14 on: March 28, 2008, 09:24:48 AM »
Jon --  thanks for the note -- I agree with you.  And would also say to Havi and others that are on Sustiva with alot of issues.  I was the same in starting Viramune on half doses to insure no allergic reactions and had little/no side effects.  I have been positive for 2.5 years and on since the first day i was diagnosed.  My viral load was down to undetectable within 2 weeks of being diagnosed -- from the hundreds of thousands to where I am today.   My doc has been in the same came of starting early to contain...who knows, hopefully someday we will have been pioneers on that one...

Havi, I don't know about the other drug but for Jon and I, Viramune ahs been a fantastic alternative.  I am the same -- I go days even weeks without thinking about this desease...and only take twice a day...there are no other restrictions (I don't have to time food, sleep, not sleeping -- anything).  Jon, I feel the same way on the having to go to the doc 4 times a year (I actually have him down to 3 at every 4 months...)

good luck with whatever happens (hope the side effects are easing) and I applaud your commitment to trying to stay the course...
Dean

Offline dahnild

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    • the adventures of me
Re: Working through Sustiva "drunk" feeling?
« Reply #15 on: March 30, 2008, 02:41:04 PM »
hey,

a friend of mine suggested when i started sustiva that i take it three times a day instead of once, to mitigate against side effects.  that would mean 200 mg three times a day instead of 600 mg once a day.  my doctor was cool with it, and that's what i did.  then for reasons i won't bore you describing, i had to switch to the 600 mg dose.  i immediately began to have untolerable side effects.  i was later able to switch back to 200 mg three times a day, with the support of my new doctor and the pharmacologist in his office who specializes in hiv/aids drugs, and the side effects went away immediately.  sustiva stays in your system so long that you don't have to worry when you take the doses, basically, so if you forget the middle dose at lunch you can take it whenever you remember.  my viral load has remained undetectable the entire time.  i make the point of telling you about my doctor's support (and my viral load) because some doctor's who are not able to think outside of the box probably wouldn't support this approach - but it works.  and thank goodness, because when i take the full dose in the morning i have symptoms like you described - or worse - and when i take it all at night it feels like my brain forgot how to sleep.  even when i take the second dose later in the day i don't have anything like the insomnia i had when i was taking the full dose at night.  hope this helps!  good luck to you ... don

Offline OneTampa

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Re: Working through Sustiva "drunk" feeling?
« Reply #16 on: March 31, 2008, 08:48:53 PM »
This a revised post from March 20, 2008 and related thread:

I too have taken Sustiva for 7 years. Originally, I took 600 mg and felt wiped out.  I switched to 400 mg about a month later  7 years ago and have been on the same dosage since that time. At the time, my doctor said that studies showed that 400 mg was just as effective as 600mg.  He turned out to be correct.  I've remained non-detectable for 10 years.  I have always had wonderful vivid dreams since I was a child and this did not change when I went on Sustiva.  Also, I have always slept well and continue to do so.  I never had a problem with concentration.   

I have to admit though that I take Sustiva around 11:30pm each night (about two hours after I've eaten) and am usually sound asleep by 12 midnight.  So by the time I wake up at 8:00am, the side effects have worn off.  I have, on occassion, taken Sustiva and stayed up for an hour or so afterward and felt a slight dizziness.  I'm happy to report, however,  that I didn't bump into furniture or anything.

So, many of you are correct.  Sustiva does affect some people differently than others.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

 


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