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Author Topic: Is any one out there dealing with this? Please share.  (Read 2865 times)

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Offline royalone

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  • Posts: 5
Is any one out there dealing with this? Please share.
« on: September 10, 2008, 10:09:41 AM »
 I am positive and on treatment I work in the construction field but i am finding it so tough some days by mid- day i feel so tired and whipped and yes all nervous and a bit dizzy still in the mornings from my sustiva meds after almost two years now is any one out there like this and how do you deal with it. Is construction too much for my body or should i change my career for a longer life

Offline Robert

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Re: Is any one out there dealing with this? Please share.
« Reply #1 on: September 10, 2008, 10:59:20 AM »
Have you tried taking your drugs at night?  i'm not on sustiva but I also take my pills  (Truvada, Reyetaz, Norvir) in the morning.  By mid-day I'm beat and have to take a nap.  I'm on disability but I work hard around here putting up out-buildings, garden beds, etc so I have the luxury of an afternoon nap.  Can't imagine working construction 8 hours/day.

good luck.

robt
..........

Offline pozniceguy

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  • Niceguy Dallas
Re: Is any one out there dealing with this? Please share.
« Reply #2 on: September 10, 2008, 12:42:39 PM »
I am on Prezista, Norvir and Epzicom...although I have not had any adverse reactions  my DR recommended I take them with a snack before bedtime....seems to work pretty good

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline michaelman333

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  • Chaos and reason collide
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Re: Is any one out there dealing with this? Please share.
« Reply #3 on: September 10, 2008, 12:53:59 PM »
I am positive and on treatment I work in the construction field but i am finding it so tough some days by mid- day i feel so tired and whipped and yes all nervous and a bit dizzy still in the mornings from my sustiva meds after almost two years now is any one out there like this and how do you deal with it. Is construction too much for my body or should i change my career for a longer life

I just was just talking to a frind of mine on SUSTIVA MEDS and he was told by his dr. that it should be taken on an empty stomach before bed. If that is what youa re doing and still having these symptoms I would suggest talking to your dr. and seeing if there is anything else they can do for you. Maybe even new meds ... :) hope this helps a bit 
06/29/09 ---- CD4- 392 (20%)   VL-Und
02/19/09 ---- CD4- 513 (23%)   VL-Und
01/11/09 ---- Switched Atripla
11/05/08 ---- CD4- 462 (23%)   VL - Und
04/01/06 ---- CD4- 274 (19%)   VL - 1200
03/20/06 ---- Started Truvada/Azatanovir/Ritonavir
02/28/06 ---- CD4- 219 (17%)   VL - 217,000
Diagnosed HIV+ 11/30/2005

You said I was lost/Wrong again
Said I had crossed that/Line again
Made it to easy to/Scream again
Made me feel queazy/Let me in
~~MLH

Offline Oceanbeach

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Re: Is any one out there dealing with this? Please share.
« Reply #4 on: September 10, 2008, 01:12:24 PM »
I have been taking Sustiva since 1998.  On my bottles, it says to "take 1 tablet by mouth every night at bedtime.   ;D  Have the best day
Michael

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Is any one out there dealing with this? Please share.
« Reply #5 on: September 10, 2008, 09:21:35 PM »
I have been on Sustiva since 2002.  I have recently started a thread in "Treatment and Side Effects" questioning the effect of Sustiva on the CNS.  I am having TERRIBLE problems and I dose at bedtime.  Just yesterday, I have started taking my dose at 830pm instead of 1030pm, hoping to alleviate some of the probs I feel during the day.

I don't know if these probs are due to Sustiva, but if you click on the link below you'll see I have been checked for everything under the sun.  I am starting to get anxiety over driving.  I get so exhausted that I feel like I'll nod off while driving home.  Lately, I've been feeling like this on the drive INTO work, when I should have more energy than later in the day.

I'm just as confused as you are.  BTW, I am taking Sustiva with Truvada, have been since 2005, before that it was with Zerit and Videx EC.

Hang in there!  I can't even stand up without holding onto something on some days.  Is it exhaustion or something else?    ???

http://forums.poz.com/index.php?topic=22846.0

~ Cindy
« Last Edit: September 10, 2008, 09:24:11 PM by MOONLIGHT1114 »
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline lucas clay

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  • Posts: 518
Re: Is any one out there dealing with this? Please share.
« Reply #6 on: September 11, 2008, 04:20:31 AM »
On my pill bottle it says take on a empty stomach at bedtime.
I take mine at 7:30 p.m.  I get up at 3:00 a.m. to give me time to "get sick" and to get rid of the groggy , foggys. Before i leave for work at 5:30.

I work 10 hour days and I'm beat by the end of the day.
I am toast by the end of the week, sat. i just nap half the day away.
Living with h.i.v.    do what ya gotta do.

                                             Lucas

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Is any one out there dealing with this? Please share.
« Reply #7 on: September 11, 2008, 04:34:01 AM »
Lucas~

I'm curious, because I gave up on trying to take Sustiva on an empty stomach years ago.  If taking the meds at 730pm, is it on an empty stomach?  I get home from work at 7pm and eat dinner closer to 8pm.  Only recently have I started taking the meds at 830pm instead of 1030pm, in hopes of not feeling the effects the next morning.

Its really hard to get that empty stomach thing into one's lifestyle, at least for me it is!   ;D

~ Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline LatinAlexander

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  • Bogota, Colombia
Re: Is any one out there dealing with this? Please share.
« Reply #8 on: September 11, 2008, 06:52:19 AM »
Well, what I have noticed (after 2 years on Sustiva), is that

1) I get my pills on empty stomach, then 2 hours later i feel a light drunken-like feeling, stomach upset, light depression , but that is it

2) I get my pills NOT on empty stomach, then 2 hours later I feel very drunken-like feeling, no stomach upset, strong depression

Anyway i take my pill, I just need a nap 3 days out of 4.

So, I take them before bed. But I get up tired. So I have to sleep at least 10 hours.

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: Is any one out there dealing with this? Please share.
« Reply #9 on: September 11, 2008, 08:59:13 AM »
I'll be the contrary one here and say that Sustiva (Atripla, actually) in the morning.  For whatever reason, it works better for me this way.  I think it's because I sleep better and therefore have more energy during the day.  When I took it at night, as instructed, I didn't sleep as well and felt funky all day.  Now, I just feel weird for a couple of hours after I first get up.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline franfrog

  • Member
  • Posts: 238
Re: Is any one out there dealing with this? Please share.
« Reply #10 on: September 11, 2008, 09:09:23 AM »
I am on Sustiva and combivir since my diagnosis 4 years ago.  I have where I can not sleep at night and have been on ambien every night for about 2 years and I have taken the sustiva on both an empty stomach and full stomach.  I am usually very tired through the day and have no energy to do anything.  I do not want to look into switching the meds because they have gotten my cd4 from 52 4 years ago to 829 last month. 
I can defenitly relate to how you feel.  Maybe taking them in the morning will help.
7/05 diagnosis cd4- 52 vl -?
08/05 cd4-299 vl-1900
10/05 cd4-249 vl-349
12/05 cd4-349 vl-52
03/06 cd4-454 vl-<50
06/06 cd4-508 vl-<50

Offline Finnboy

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  • Posts: 73
Re: Is any one out there dealing with this? Please share.
« Reply #11 on: September 11, 2008, 09:51:32 AM »
The empty stomach at bedtime advice with efavirenz is primarily to do with minimising symptoms that would interfere with your functioning as a normal human during the day when you first start on the treatment.

After a few months - when you hopefully no longer get that mad Sustiva rush - there is no reason whatsoever why you shouldn't start playing around with the medication times, to fit in with your lifestyle (although still best to stick to the empty stomach thing and try not to eat for between about 30-60 minutes after taking it).

I take my Atripla at 7AM. This not only means that I get a normal night's deep sleep every single night and therefore don't get fatigue issues during the day; but I quite bizarrely have less daytime side-effects (in fact none at all) than I did when taking it at bedtime.

Just because the the doctor and package insert advise starting with the bedtime schedule doesn't mean you have to stick with it if it is causing unnecessary quality of life issues. In studies, approximately 50% of patients get on far better with efavirenz taken in the morning, so please don't be afraid to speak to your doctor about how best to experiment with other schedules but please  speak to your doctor about it BEFORE you start experimenting.

Offline royalone

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  • Posts: 5
Re: Is any one out there dealing with this? Please share.
« Reply #12 on: September 11, 2008, 01:30:38 PM »
 Thank you all this is very helpful for me at least i know i am not alone in dealing with this so it is one less stress. I will move my dosage time up a few hours and take it from there.

Offline Ithaca_Nights

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  • Posts: 47
Re: Is any one out there dealing with this? Please share.
« Reply #13 on: September 11, 2008, 01:50:26 PM »
I have been on Sustiva for a little over 2 years now.  I eat a non fat snack 2 hours before I take it at night and that seems to help me.  I do have days where I am exhausted, but others I am pretty good.  I think it is one of the things we have to deal with with this combo.  I have talked with my Dr. a few times about this and is hesitant to change my meds because of the good labs.
Yours, Dan

Offline lucas clay

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  • Posts: 518
Re: Is any one out there dealing with this? Please share.
« Reply #14 on: September 13, 2008, 07:21:40 AM »
Lucas~

I'm curious, because I gave up on trying to take Sustiva on an empty stomach years ago.  If taking the meds at 730pm, is it on an empty stomach?  I get home from work at 7pm and eat dinner closer to 8pm.  Only recently have I started taking the meds at 830pm instead of 1030pm, in hopes of not feeling the effects the next morning.

Its really hard to get that empty stomach thing into one's lifestyle, at least for me it is!   ;D

~ Cindy

Its almost impossible to do.
Last nights left overs make a great lunch then something light for dinner perhaps will do the trick.
For me salad or cereal is best, on the days i can't. Well it will be a rough morning.

                                                         Lucas

Offline minismom

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  • Quocumque jeceris stabit
Re: Is any one out there dealing with this? Please share.
« Reply #15 on: September 13, 2008, 08:42:38 AM »
Mini was on Susteva from Jan 2002 - Jan 2008 and she always took her dose at 3pm with her afternoon snack and 1000mg of fishoil.  By 7 - 7:30pm she was out for the night (and usually 12hrs of sleep).  The sticker on her bottles always said that it should be taken with bread or milk, but never said on an empty stomach.  She's been off for nearly 8mths and still requires an enormous amount of sleep.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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