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Author Topic: Sustiva/Truvada  (Read 16381 times)

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Offline artjay

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  • Posts: 1
Re: Sustiva/Truvada
« Reply #50 on: July 02, 2006, 09:55:10 AM »
I also have just started sustiva/truvada 4 days ago and the problem I'm having is sleep. I tried taking during day and the sustiva made me feel bit drunk so I now take both in evening just before bed but still have problems with falling asleep. Is there any problem with taking benedryl or tylanol pm like an hour before and will it help?

Offline OakMax1

  • Member
  • Posts: 57
Re: Sustiva/Truvada
« Reply #51 on: July 06, 2006, 01:21:54 PM »
Hello Eveyone,

Lyfe, I just started about two weeks ago and had many questions and concerns and with the support and help from everyone here and with the help of my doctor I am doing okay.  At first, it was hard taking the meds and wondering would happen to me but after I thought about it I wanted to be healthy and feeling good and if it meant adjusting my life to taking meds everyday for the rest of my life so be.  Today, I feel great after 3 weeks and so will you. Be positive you can do it... I hope all the best for you, you will be okay  ......

Everyone I went on the beach trip and guess what, I got sick.....but not from my meds but a sore throat from the air conditioner in the hotel..... will that what I think..... came home early from trip and finally when to emergency last night had a fever, which was  assoicated with my swollan tonsils.  They gave me a shot and antiboitic and when I got home I had my first night sweat and crazy dream but nothing bad.    Feeling better and going back to work tomorrow.   

Everyone thanks for your posting they help out a lot....they keep me calm and aware.   Have a great day!!! max :-)
« Last Edit: July 06, 2006, 01:27:49 PM by OakMax1 »
Go with it and KEEP MOVIN!  Life is good today and I am glad to be here

Offline Smoothguy_pdx

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  • Posts: 1
Re: Sustiva/Truvada
« Reply #52 on: July 07, 2006, 06:52:33 AM »
Hi everyone,
well I have been on the Sustiva/Truvada Medications for about 3 months now and my partner and friends and I have noticed my moods change somewhat. I wake up in the middle of the morning when im worried (its 3am now and Im typing these thoughts)  I work in a high stress job that demands alot of concentration , especially in the morning, and I honestly felt  a little shaky/anxious regarding how I perform, it has been difficult to say the least.  Recently my shift had changed to 4 10s, starting in the afternoons and leaving in the evenings, this has helped because I feel less side effects, but still the concentration is slightly noticiable to me especially during times where there is high stress or when I have to really concentrate.  For example, I find that taking an extremely hard test, say akin to the bar exam, to be almost impossible to take, while on this medication.

I get a little shaky when Im under such timed tests that require you to perform, (I may have to take this timed test for my job)  some of it can be me, but before I was on this medication regimen, I didn't feel this way, and felt less nervous. Bottom line, performing at the level I used to seemed impaired.  Im trying to figure out some options, but am afraid of other combos that can have worse effects than what Im currently having. Or is it too early to decide to switch? 

Before, I was on crixivan :'( had plenty of kidney stones from that even after drinking plenty of water, then was switched to nelfinavir :-\, had atomic bombs go off in my stomach that could be heard a mile away and went to the bathroom almost every hour it seemed during the day. The time frame I felt best was when I was on a cocktail holiday through the "start" program, that monitored people who didnt take medications, I was fine for almost 3 years under the start program, then my lympnodes starting acting up (with a few other weird skin conditions), and recently it was recommended for me to go back on the present medication of sustiva/truvada.

Overall the Sustiva/Truvada medication isn't as bad as the others, except for the anxiety under stress and weird dreams that seem to occur. I just hope no one at work finds out at work , because I hope I can keep my status secret.  any suggestions or pearls of wisdom that you all can share?

peace
R

Offline Joel90069

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  • Posts: 28
  • "Another turning point a fork stuck in the road."
Re: Sustiva/Truvada
« Reply #53 on: July 07, 2006, 04:11:58 PM »
I had very similiar experiences with the Truvada/ Sustiva regimen; bad insomnia, often waking up at 4 am, fogginess and an inability to concentrate. I also have a very high stress level job. Concentration, problem solving and having a level mood are absolute requirements. After 6 weeks my doctor switched me to Viramune. I've noticed an almost immediate increase in my concetration and task related abilities. The insomnia has also gone away, though I'm having the opposite problem. I seem to be more fatigued then normal. Still, on balance, I'm much happier with Viramune vs. Sustiva, particularly at work. You might want to discuss a switch with your doctor, Smoothguy.

Offline HipHoppus

  • member
  • Posts: 1
Re: Sustiva/Truvada
« Reply #54 on: July 08, 2006, 07:24:40 PM »
I have been on Sustiva and Truvada for about 10 weeks. I started medication after having been exposed  only 3-and-half months previously. The viral load was over a million and the cd4 was 266 and I was asymptomatic. Seven weeks later, the viral load was undetectable and the cd4 was 539.

I was actually hoping to get some dreams from Sustiva because I never have dreams while sleeping deeply but I didn't get any. The only side effect I've had from these (and I guess I should be greatful) is that if I take them on an empty stomach the Sustiva makes me a bit lightheaded and drowsy... but that's only sometimes. The first two days was pretty bad but after about a week it eased.

So, now I take them after dinner so I don't get the lightheadedness. It's really annoying when the lightheadedness sets in b/c it's hard to focus but I find now that I don't get that very much and it only lasts for about two hours when it does.

I can't wait until the sustiva and truvada are combined into one pill, so I'll feel more normal taking medication. I also hope the new pill is smaller than the current sustiva pill. That one is made for a small horse. Additionally, I hope it doesn't actually have the name of the new drug printed on it either like the current sustiva pill. I think that's stupid.

Offline OakMax1

  • Member
  • Posts: 57
Re: Sustiva/Truvada in the morning....
« Reply #55 on: July 12, 2006, 02:24:03 AM »
Hey All,

I have a quick question:  I take my meds around 11-12 at night.  I try to eat between 8-9pm and hope I have a empty stomach around 11 or 12am. When I wake up in the morning, I am okay for the first hour but into the second hour I feel bad.  Like somewhat still sleepy and tired.... any remdy for this ...

Also like to munch at night... what if my stomach not completely empty, could this have something to do with the way I feel in the morning???

Can I munch a little??? confused.......   max
Go with it and KEEP MOVIN!  Life is good today and I am glad to be here

Offline OakMax1

  • Member
  • Posts: 57
Re: Sustiva/Truvada (HIV/AIDS patients get 1st once-daily pill )
« Reply #56 on: July 12, 2006, 09:50:52 PM »
Have you all seen this?


HIV/AIDS patients get 1st once-daily pill

http://news.yahoo.com/s/ap/20060712/ap_on_he_me/hiv_one_pill
Go with it and KEEP MOVIN!  Life is good today and I am glad to be here

Offline Ur2shyshy

  • member
  • Posts: 1
Re: Sustiva/Truvada
« Reply #57 on: July 12, 2006, 11:02:16 PM »
I've been on Sustiva/Truvada for 2 years this October.  There is certainly no arguing the therapudic value of these medictaions and the side effects profile also seems potentially less damaging then many others.  I have always been pretty slim and my  face, arms, legs, waist & butt haven't changed at all. 

I have noticed that, with dosing at 11pm, ANY food eaten after about 8:30 will still cause me to get dizzy, have random vivid dreams, sometimes wake up around 4-5am. I have a bit of trouble concentrating & even vebalizing my thoughts at times.  I can't say that the concentration issue is caused by Sustiva, or just some garden-variety anxiety...  Regardless of the drawbacks, I try to keep in mind how fortunate those of us are to be able to begin treatment with so much more knowledge and safer alternatives then just  afew years ago.

I'm looking forward to the One-pill combo....

Offline MitchMiller

  • Member
  • Posts: 465
Re: Sustiva/Truvada
« Reply #58 on: July 14, 2006, 10:38:50 PM »
Over 3 years on Sustiva and still have side-effects... always have vivid dreams unless I'm really exhausted... otherwise, difficulty getting and staying asleep.  NRTI's also contribute to my sleep problems.  It's worse when there is a problem at work that I might be thinking about... which before these meds, would just roll off of me... now will monopolize my thoughts when I try to sleep.  In fact, I've often spent hours of what I call "active sleep."  I am sometimes in a very light sleep, actively thinking and trying to solve problems from work!  I've actually woken up when I've reached a real solution.  However, in the morning, it feels like I've been intensely working half the night.  I'm exhausted and am forced to use caffeine to get through the work day... which makes it really hard to sleep.  It can become a vicious and demoralizing cycle.
Eliminating all caffeine does seem to really make a help me sleep better.

Offline OakMax1

  • Member
  • Posts: 57
Re: Sustiva/Truvada
« Reply #59 on: July 18, 2006, 09:28:31 AM »
Having problem sleeping, not sure I went to sleep last night or the next before.  I close my eyes and feel like I am aware of everything around me. I toss and turn all night.... feel like I was in sometype of twilight sleep.  I very nervous about going to work and a doctor appointment this morning...may fall asleep.....and not wake up...

Strangest damn thing, I AM NOT SURE I WENT TO SLEEP.... just hoping it wont catch up with me while at work.  When taking med sometime I find it hard to take my meds on an empty stomach.  Especially if I eat late.... Someone tell me I am not tripping out here and that it all in the mind... maybe this is my first side effect..... up and out of here.... and SCARED that sleep will catch up with me.... somewhere today... max
Go with it and KEEP MOVIN!  Life is good today and I am glad to be here

Offline bella

  • Member
  • Posts: 3
Re: Sustiva/Truvada
« Reply #60 on: July 29, 2006, 12:54:34 PM »
I have been on Sustiva/Truvada for 10 days.  I am in day 3 of a nasty rash.  I am going mental from the itchiness today and am unbelievably uncomfortable.  I saw the dr yesterday so she gave me a script for prednisone.  There's no difference yet, but she says i just have to work thru the rash till it goes away, then I should be ok.

In the meantime, what can I do to relieve the itchiness??  I hope some of you found some home remedies that help, cuz I'm about to chuck the damn Sustiva out the window!!  lol   Hope there's some ideas.


Offline newt

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  • Posts: 3,877
  • the one and original newt
Re: Sustiva/Truvada
« Reply #61 on: July 30, 2006, 04:59:46 AM »
For everyone on the orange bomb

It is a bomb and the virus hates it, clinically it's a very effective drug, one of the most effective.  BUT it's not for everyone, there are perfectly viable and equally effective alternatives.  Docs who say Sustiva is the best drug are talking up the science to match their prescribing preference - it's first among equals, but it is among equals.  Docs who talk about "sparing" PIs cos of worse side effects are also talking up the science.  Long-term sleep disturbance is a very serious thing.  There are several ways to manage Sustiva side-effects and no way is better except the one that works for you.  Switching is one option, and (all things being equal, like resistance) it has to be be on the cards if you want to discuss it. Docs are often not keen on this it seems, but they's not the ones awake at night.  How you deal with your HIV, the drugs and the side-effects is your choice. The doc's job is to help you explore the viable options and support your decision-making. - matt
"The object is to be a well patient, not a good patient"

Offline bella

  • Member
  • Posts: 3
Re: Sustiva/Truvada
« Reply #62 on: July 30, 2006, 03:03:58 PM »
After a sleepless, itchy night last night and lying in my bed today whimpering and scratching because I can't do much else, I finally gave in and paged my doctor.  She told me to stop the Sustiva/truvada and see her in the morning.  Thank God!

The prednisone did nothing at all to lessen the rash - I took my third dose this morning - the rash has still spread ~ it's even on the palms of my hands!  I bought some Aveeno bath products and anti-itching lotion... nothing helped.  I'm absolutely going crazy from the itching, but at least I know I don't have to take another dose of that tonight!

Offline Hamster

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  • Posts: 11
Re: Sustiva/Truvada
« Reply #63 on: August 05, 2006, 05:54:29 AM »
Hi Guys I know this thread is about the combo of Sustiva and Truvada but there just seems so much infomation on this thread so i thought i would make a post. I have just woke up after my first morning on HIV+ meds Sustiva and Kivexa and dont feel too bad I took my meds at 11pm and went to bed about 11.30pm  although i did have a fatty meal about 6 PM naughty naughty i know.....I just feel a Little light headed as if i been out the night before on the beer.  I didn't sleep very well must of woke about 4/5 times in the night but maybe that was that fish n chips interacting with my sustiva or maybe just because i was panicing about the side effect of the meds. Hopefully I should be OK. I a little worried about Immune Restoration Illness though my last counts were cd4 229 and VL 114K.  IF these meds work for me I will treat them like my new best mates.  ;D
I hope to be on this forum a fair bit as many people dont know of my status or my family.....

Offline Nadine

  • Member
  • Posts: 1,253
  • Member since: August 2005
Re: Sustiva/Truvada
« Reply #64 on: August 05, 2006, 06:16:03 AM »
Hi there Hamster,

I'm glad to hear your first night on meds was fairly uneventful.

Maybe you should start a thread and introduce yourself. This is a great place that you've found, hope to get to know you better. Welcome to the family  :)

Take care

Offline Dexter

  • Member
  • Posts: 6
Re: Sustiva/Truvada-Bad Reaction
« Reply #65 on: August 05, 2006, 07:07:10 PM »
I was on Sustiva for nine days when a rash appeared all over my body and my temperature shot up to almost 103.  My doctor told me to go to the hospital immediately.  The doctors there were great but were not sure what they were dealing with.  A chest x-ray also revealed what appeared to be TB and my liver wasn't doing well.  I was quarantined for 8 days eventhough all of my tests were showing nothing was wrong with my lungs.  I was pumped full of antibiotics and steroids.  My primary doctor was on the phone with me everyday and found an HIV specialist who I met with after i was released.  He says he had a few other patients with the same reaction and they didn't have TB either.  He immediately took me off the TB meds after leaving the hospital even though the county wasn't happy about that.  I have had no symptoms of TB at all since then, my tests are still negative for TB and I am feeling great.  The reason I am writing this is because I quickly learned a lot of doctors(I had some of the best in their fields) are still very uninformed about a severe reaction to Sustiva even after all this time.  I even had one doctor tell me he had no idea what they were dealing with.  My strong suggestion is if this happens to you and you end up in the hospital make sure you get the staff to bring in an HIV specialist.  Sustiva does wonders for a lot of people but unfortunately some people like me cannot handle it.  I also want to point out that I have never had any allergies to any drugs I have ever taken so anyone could experience what I did.  I am happy to say I have been on Reyataz,Norvir and Truvada for two weeks now and I have had no adverse reactions from them at all.

Offline Hamster

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  • Posts: 11
Re: Sustiva/Truvada
« Reply #66 on: August 06, 2006, 03:30:35 PM »
That sounds like a rough time u had there fella. Im on my 3rd night of Sustiva and Kivexa(epzicom) tonight. I Hope i dont have this reaction to Sustiva that some people get. I've already had a nasty rash on Septrin and Dapsone which are drugs to prevent pcp...  the side effects don't seem to be too bad either apart from the lack to sleep. After how long will i know im not gonna get this reaction to Sustiva anyone know?

Cheers.....Im still smilling  ;D

Offline Dexter

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  • Posts: 6
Re: Sustiva/Truvada
« Reply #67 on: August 06, 2006, 04:01:00 PM »
Hey hamster~~

      I want to let you know that while my doctor says a rash may be more common, the severe reaction I had is not.  I have talked with others on Sustiva and their bodies are handling it just fine.  Your body is going to tell you if anything is majorly going wrong.  I had been taking my temperature days before the rash had taken over my body and it was slightly elevated so I knew when too much was too much.  I wish you all the luck in the world and if you need to ask anything I will be checking the site.  Certainly not a medical expert but gotten a big education in the last few weeks.   Cheers~~Dex

Offline bradmeistr

  • Member
  • Posts: 36
Re: Sustiva/Truvada
« Reply #68 on: August 07, 2006, 12:29:38 AM »
Thank you all for posting your thoughts about Sustiva and Truvada - I started these meds in March of 2006 and so far so good, that is nothing so bad that I have wanted to switch.  The only side effects I had were/are dizziness, waking up at about 4 or 5 in the morning, and increasing lack of motivation.  I also have a job that requires me to be alert all the time and the Sustiva was really causing me to be dizzy and have a hard time focusing.  All of the side effects seem to be tolerable except for the lack of concentration in the morning, dizziness (if I eat late), and off moods (on the weekends).  I did find if don't eat after 7:00pm (I tkae my meds at 11:00pm) the side effects are minimized.   I just went to my doctor and told him about the side effects and based on my desire to not switch, we decided to see if Wellbutrin might help.  Guess what, the Wellbutrin does seem to be helping, the inability to concentrate in the morning is all but gone, and I feel much happier or at least I am more motivated.  Being able to focus more in the morning has been god sent. 

I'll keep you posted on the Wellbutrin.    :)
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline Rightbrain

  • Member
  • Posts: 54
Re: Sustiva/Truvada
« Reply #69 on: August 08, 2006, 10:04:47 PM »
Hello All,

I'm taking the combination pill as part of a trial.  To me it's just the same except that maybe the Sustiva is a little more Sustiva-like.  It's been over 3 years on Sustiva and the side effects, while not near what they were the first week, are still there.  If you've read any of my other posts you know that I love my Sustiva high, though.  If there's a cure I hope I can have all the left-over Sustiva.

brother joe
If there's a cure I hope I can have all the leftover Sustiva.

Offline Hamster

  • Member
  • Posts: 11
Re: Sustiva/Truvada
« Reply #70 on: August 12, 2006, 08:05:27 AM »
Guy i just wanted to put people mind at ease who are about to start taking Sustiva. The first 2 morning after taking sustiva I felt like i had a rough night out on the town from the night before. But touch wood i have had no more side effect since my 3rd day. I have been on the Kivexa(epzicom) and sustiva now for 8 days I have no side effects, I know its early days but i feel great i was just as worried as the next guy about taking this powerful drug. Even the sleeping is great now but i maybe wake up once in the night. I also do take a vitamin called Immunace with my evening meal which is great for people with hiv+. Best thing to do guys is start them on a Friday night like i did. To get a feel for the effects in the morning by Monday i was fine.  Good Luck....

Offline Batboy

  • Member
  • Posts: 7
Re: Sustiva/Truvada
« Reply #71 on: August 24, 2006, 03:36:31 PM »
I started having the side effects the first night.....severe dizziness, anxiety, irrational fears and some minor arm and leg tremors during the day. It took me about two weeks before the side effects started to feel less intense and four weeks before they seemed to pretty much disappear all together...except teh dizziness which is not an issue since I take the meds before bed and only notice it if i wake up during the night.

Even during the first few days, the side effects weren't severe enough to keep me from most of my normal routines including going to work every day.

If you haven't experienced them yet, maybe you won't. If you do, just try to hang in there and continue the meds. The side effects will subside and the benefits will be worth it. It took only two months on these meds for my viral load to be undetcetable and my t cells to be within normal range. So, it was worth the few weeks of minor weird feelings.   

 


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