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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Rob P on June 09, 2006, 05:17:48 am

Title: Sustiva/Truvada
Post by: Rob P on June 09, 2006, 05:17:48 am
Just started treatment (2 days ago) using sustiva/truvada.  I've been reading lots about issues with sustiva side effects, but so far so good.  How long does it take to settle in before effects?   Maybe I'll get lucky and have no issues
Title: Re: Sustiva/Truvada
Post by: Tim Horn on June 09, 2006, 06:42:40 am
Rob:

I don't want to jinx things for you, but in most people who do experience the central nervous system side effects of Sustiva (e.g., dizziness, vivid dreams, altered moods), they usually arise the first night Sustiva is taken and can last three to four weeks.  If you haven't experienced these symptoms yet, it's possible that you won't ever experience them... and if you do, they may only be very mild in intensity. 

There is still a risk of rash with the Sustiva, which tends to arise in the first few weeks of therapy.  And as for Truvada, the tenofovir and emtricitabine in this fixed-dose combination tablet have pretty good track records, although it might be a good idea for your doctor to keep an eye on your kidney function (using a simple blood test) while you're on this product. 

Keep us posted!

Tim Horn
Title: Re: Sustiva/Truvada
Post by: Teresa on June 09, 2006, 11:19:23 am
My hubby has been on Sustiva/Truvada since may 24. So far the only symptoms he has had is a rash and was a little dizzy the first couple of days when he got up. He went to the dr  yesterday and they gave him a steroid shot and a prescription for zyrtec for his rash. He said that today the rash has already started to fade.

Hope you have the same luck(without the rash) that hubby has had on these meds.

Hugs
Teresa
Title: Re: Sustiva/Truvada
Post by: Rob P on June 09, 2006, 02:52:11 pm
I'm keeping my fingers crossed that all stays well.  I've read other posts regarding the side effects and appreciate everyone being honest and upfront regarding what to expect.  That had me concerned.  I'll keep an eye out for new rash, but glad Teresa's hubby is starting to clear.

Thanks for the info
Title: Re: Sustiva/Truvada
Post by: newone on June 09, 2006, 05:39:55 pm
I ve been on Sustiva and Truvada for nearly 6 months and the dizziness and depressed moods have never left me but in general I did not encounter any other major problems (I guess dizzy & depressed should be enough..)
Title: Re: Sustiva/Truvada
Post by: jordan on June 11, 2006, 06:21:22 pm
I've been taking Sustiva and Truvada since February 2006 when I was diagnosed.  I do have dreams everynight, but not any nightmares.

Initially I felt off-balance, but now I've seem to have acclimated to it.   TG (thank God) I've not experienced any rash or other side-effects.  I've not missed a day of my medication.

I do seem to feel more fatigued then I used to feel - not as much energy as before taking the medicine.

It's hard because I really don't know anyone else in my area that has been diagnosed with HIV.  I know of some people via other friends, but have no other avenue to get feedback from other individuals.

I don't know when I was infected and thought my ex was monogamous - I later found out he was sleeping with a lot of people - I shouldn't have trusted him and blame myself for not being educated on the subject.  I assumed he was clean and that I was clean.

The good news is that my viral burden is decreasing and my CD4 is increasing.  I often think about the day when I won't be able to take care of myself.  I don't know what to do or where to turn, especially since I've not told my family.
Title: Re: Sustiva/Truvada
Post by: Shawn Decker on June 12, 2006, 02:50:58 pm
Hey Jordan,

Hang in there, everyone feels the sense of panic when thinking about the longterm future.  With access to good health, and being diagnosed these days, you're in a much better position to have a full life ahead of you.

As for the sustiva, I was on it for about 4 years.  The side effects made me feel spaced out, and I really have a hard time remembering the first year I was on it.  Emotionally, it was hard to pretend that I was excited about anything at all, but when you're numbers are good it's hard to complain.  That's how I felt.

Last year I switched from Sustiva/combivir to Truvada/reyetaz/ritonivir.  It's going good, but I take the pills before I go to bed and wake up feeling a little drugged out.  Mental fatigue, it seems, is the biggest obstacle I've faced with both sustiva in the past, and truvada now.
Shawn
Title: Re: Sustiva/Truvada
Post by: newchapter on June 12, 2006, 09:37:46 pm
I've been taking Truvada/Sustiva for 30 days now.  I was warned of the possible side effects prior to taking them.  What was described as possible nightmares was actucally more like wild hallucinations.  The hallucinations have subsided to dreams now.  I do feel fatigue mid day and often sweaty at night.  Also I'm up several times a night to pee.  I did have a 2 day lapse in my prescription cause I was unable to get to the pharmacy.  During this 2 day period of not taking my meds I felt better than ever!!  My high energy level had returned, I was clear headed, and I slept like a baby for 2 full nights.  I'm convinced that the loss of energy and problems with fatigue and other symptoms that I and many others face is due to the loss of getting a deep and restful sleep at night because of these meds.  I'm am told by my Dr. that it may take time for my body to adjust...... I certainly hope he's right.

Funny how something that is suppose to help you can make you feel so lousy.  Now I'm dreading the fat around the belly or skinny legs/arms that can also be a possible side effect.

I have also noticed that my hair is dry........just hope it stays in!


To better Health,
B.
Title: Re: Sustiva/Truvada
Post by: Shawn Decker on June 13, 2006, 02:18:24 pm
When I was on sustiva, that was the hardest thing: waking up exhausted.  I think the dreams are so vivid that your mind has been racing all night and it definitely takes a toll.  You don't exactly hop out of bed, throw on your slippers and shout, "The day is mine!"

If it's too bad, are there any other regimens your doctor could prescribe?  They all come with their own little tricks of the trade, but I know sustiva is one of the worst in terms of reputation for bad side effects.
Shawn

Title: Re: Sustiva/Truvada
Post by: TugaMan on June 13, 2006, 05:47:23 pm
I've been on Sustiva / Truvada since November 2005. No major side effects at all. After taking my meds, i fall asleep in 30/40 minutes, and wake up 6 or 7 hours after. I didn't sleep longer when I was neg so, no problem with that. I remember having some strange dreams during this period, but nothing too serious. Hope i can stay in this combination for many years....
Title: Re: Sustiva/Truvada
Post by: cubbybear on June 15, 2006, 06:07:46 am
I've been on Sustiva since late September last year.  I think the worst that has ever occured was feeling off balance/drunk for a short while after taking it, and perhaps some funky dreams that I may or may not have had regardless of the Sustiva.  I have had a lot of mood swings/aggression/depression and I have been quick to blame all of that on the Sustiva, but to be honest, having been told you not only have HIV but AIDS, PCP and some other OIs, I would have experienced all those moods without the Sustiva.  It seemed like a good thing to blame though at the time.  I am one of those few who is happy to take that orange acid bomb, it works well for me, and hope it continues to do so for a long time.
Title: Re: Sustiva/Truvada
Post by: Shawn Decker on June 15, 2006, 04:02:06 pm
Good point.  Sometimes I attribute negative personal traits to the side effects of the meds, too.  I just consider that to be one of the added perks of HIV meds, right alongside suppressing the VL and maintaining those T-cells.
Shawn
Title: Re: Sustiva/Truvada
Post by: Dachshund on June 15, 2006, 07:48:26 pm
Boy what I wouldn't give for a good nights sleep. I have been on Sustiva/Truvada seems like forever. Sleepless nights,fatigue,continue to be a problem. The trade-off is consistently good numbers and I don't want to mess with that. If I wasn't such a chicken-shit I would try the 7/7 Shawn writes about in his blog.

Peace,
Hal
Title: Re: Sustiva/Truvada
Post by: Rob P on June 15, 2006, 08:18:27 pm
one week now and so far so good.    Discussed with my partner the bizare dream side effects and was reminded that most nights I dream in color, or wake from dreams anyway.  So, are these dreams Me, or meds?????  LOL  nothing too different, and glad the dreams are still in color.  I enjoy the show.   I must admit, a good 80% of my dreams have always been vivid and colorful.   Something about being a redhead I guess.   However, new issue is the "diaper rash" on my butt!!!!!!!!   looks like I got a good hand slap on my butt cheek, and this sucker itches, weeps onto my undies, etc.   hard to see, but definately a diaper rash.    mmmmmmmmmmmmmmm   and I've not had any kinky play with butt slaps or anything.    side bar...bummer   but anyway.  hope the rash quits soon
THANKS all for the posts and replys .  Appreciate the support
Title: Re: Sustiva/Truvada
Post by: Shawn Decker on June 20, 2006, 02:19:32 pm
I used to remember my dreams much more when I was on sustiva.  And that is a really vivid dream if you're waking up with spanking marks!
Shawn
Title: Re: Sustiva/Truvada
Post by: jkinatl2 on June 20, 2006, 03:15:45 pm
For some people, especially those with pre-existing depression and other chemical imbalances, Sustiva does not begin to impact their psychology until four to six months after it's introduction. That's why it's extremely important that the patient maintain open and honest communication with the doctors and nurses, spouse, and support system.

Title: Re: Sustiva/Truvada
Post by: DingoBoi on June 20, 2006, 05:20:02 pm
I'll echo what jonathan input.   I started sustiva/truvada a year and a half ago.   Starting out i had virtually no side effects except a bit of the drunken feeling.   Over time, the side effects seem to be manifesting themselves much more strongly for me.   Going from no dreams ever to having disturbing nightmares every night.   When i started, I used to wake up feeling ok.... now it's constant exhaustion and a struggle to get out of bed in the morning.  I also fit the profile of having other depression and chemical imbalances prior to starting the regimine.

It does work well in helping my numbers and suppressing my viral load.  I just don't have much of a life anymore because i'm too tired to do virtually anything after work is done (that's when i manage to actually get to work).   My quality of life is severly diminished from what it used to be by this fatigue and exhaustion and, for me, it's time to try something new.

I plan on dumping sustiva in place of something else more tolerable for me.  I'm a bit scared to 'mess with something that works', but i don't really want to feel like i do now and since i have options, I'm going to try something else
Title: Re: Sustiva/Truvada
Post by: Rob P on June 20, 2006, 07:43:08 pm
OK, good to remember about possible delayed reactions to the meds.   The dreams are definately mine, not just med related, but the rash was a bit embarassing.......got to remember NO BUTT SCRATCHING in public!!!!!!   But at last, the rash is going away.  WHEW.  Feeling a bit tired though, going to bed before sunset?   LOL     

Is that the Sustiva or Truvada?   MMMMMMMM
Oh well, I'm taking my time, day by day and going with the flow.  If the numbers look good, then I might be fine.  So the jury is out for a bit.  Tonight I'm actually fighting to keep awake til 8pm.      Scarlette O'Hara with a mission....As God is my witness, I won't go to bed before dark    hehehehe

Keep in touch All.   I will too.
Title: Re: Sustiva/Truvada
Post by: jordan on June 20, 2006, 07:46:52 pm
Tonight I'm actually fighting to keep awake til 8pm.      Scarlette O'Hara with a mission....As God is my witness, I won't go to bed before dark    hehehehe

I also had a hard time staying away past 8pm when I first started....now I'm staying up much later like old times - I'm usually in bed about 10pm and I'm up at 5:10am.

I think it was a good month or two before I was back to 'normal.'

My only complaint is that which dingoboi mentioned - I feel exhausted and fatigued - I know it's from the medicine, because I had so much energy before.
Title: Re: Sustiva/Truvada
Post by: Teresa on June 20, 2006, 08:03:29 pm
I clicked on news in the upper left hand corner(under lessons) and theres an article about Sustiva-Based Regimens.

Teresa
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 20, 2006, 08:55:13 pm
Wow, you made me feel a little better today!  Tomorrow I start Sustiva and Truvada for the very fist time... Scared and nervous about it. Wish me luck!

Wow I went throught the all the thread and I have beeen reading what you guys are say.... my last night of the real me.... the many changes that going to take place is scarying me.   Rod, I just want to say that you give me some hope that things will be okay just go with it.... thanks buddy!  max
Title: Re: Sustiva/Truvada
Post by: Rob P on June 21, 2006, 04:01:02 am
Greetings, Max:
knowing the possibilities keeps you prepared.  But, Expect the BEST with your tx.  Sometimes "stuff" happens, but taken with humor it's always much easier to smile.   Let us know how things go.   Be open with the doctor and your support group.  Let your friends know what the possibilities are so they keep an eye on you.  Maybe nothing!

Keep in touch, Max
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 21, 2006, 09:43:15 am
Thank you Rob, I will.  will come back tonight and tell you all what going on .... on my way to work and I thinking this will be the last day of cheering morning feeling great.... and what to come I don't know....... thanks Rob
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 21, 2006, 08:09:04 pm
Hey Rob,

Thanks for the reply.  I am just a little nervous about it and what possible side effects I will have.  I also worried about will I be able to work within the first few weeks?  I do want to be non-detected and my cd4 to go back up, and feeling better, which I happen to feel great right now.    Cd4 in low 200 and VL 37000  

I am not sure everyone will see this but " hey everyone HERE I GO- in a few hours... it five now... need dinner early so that I can take it on a empty stomach.   Not sure how the food situation going to go down.... I like to snack in the evening and I usually eat late...  will have to change my habit (what do you all do). 

(Question)  I usually go to a gay event out of town on 4th of July.  Starting today, do you all think I should go or not go...or does it depends on what happening with me... it's a big gay weekend ...  I go every year at least for the last ten year.

I am so glad I found this place to talk to others and not feel kinda alone.   Thank you... max
Title: Re: Sustiva/Truvada
Post by: jordan on June 21, 2006, 08:57:05 pm
I also worried about will I be able to work within the first few weeks?
I had no problem going to work or working - you can do it

Quote
I like to snack in the evening and I usually eat late...will have to change my habit (what do you all do). 
You won't have to change anything you are currently doing now - sometimes I take my pills with food, sometimes I don't

Quote
I usually go to a gay event out of town on 4th of July.  Starting today, do you all think I should go or not go.
Go - have fun.  However, if you do develop a rash and it hasn't cleared up by the Fourth you may not feel like going.
Title: Re: Sustiva/Truvada
Post by: newchapter on June 21, 2006, 11:25:17 pm
A few thoughts...

Well guys I have been experimenting like crazy since starting my meds......trying to get back to a "normal" routine.  I have found that eating a very low fat dinner early in the evening (before 7:00) and taking my meds at bedtime (between 10:00 and 11:00 for me) helps to alleviate the crazy dreams and makes for a more restfull sleep.  This in turn helps to cut down on the fatigue I was feeling mid day.  Most doctors agree that a fatty diet can cause problems with the meds.  So make lunch your main meal time.  Also, alcohol can cause issues as well.....so if you are going to drink, drink lightly and early in the evening.  I hope all this helps.


To Better Health,

B.
Title: Re: Sustiva/Truvada
Post by: DingoBoi on June 22, 2006, 12:10:45 am
echoing again the alcohol thing.... avoid alcohol at first.   It will have a much more pronounced effect in combination with the meds.   as in.. feeling much drunker, much faster.

don't drink and drive (i'm talking even social drinkers who maybe have 2 or 3 out during the whole night)

if you drink, practice at home a few times to see how severly it impacts you before going out in public and drinking (which can end up embarrassing... don't ask how i know that but i do)
Title: Re: Sustiva/Truvada
Post by: Tony on June 22, 2006, 12:33:42 am
Hey,  I've been on these meds for awhile now and I have little to no side effects.  hang in there i my fist 6 months i was pretty dizzy and that has seem to be all gone now.  Vitamins supps have really helped.    Tony
Title: Re: Sustiva/Truvada
Post by: Rob P on June 22, 2006, 05:30:11 am
I agree with Jordan, and the others.  I won't stop work, I won't change my routine.   Stick with the normal routine and change nothing.  If you're tired, take a nap.  This is just the start of a new chapter in your life Max.   If you feel up to it, go enjoy the events on the 4th if not, don't.  It's always up to you, my friend.  Don't dwell on the "what may happen" just live and enjoy life.  Keep in touch.
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 22, 2006, 09:16:47 am
I love you all!!!!!!!!!!!!!!   Just woke up and I am not dizzy, nothing wrong with me..... wow I am cool...just a little light headed.....otherwise  like any other morning.... feel great sleep good... I got the day ahead of me...

Wow, wait for the on set of things .... to happen... but so far first day...NORMAL..... just wanted to let you all know how it went so far...

I am so glad I found this site....  off to WORK!!! YIPPY..... love my job

max

Jordan and Rob thanks for answering all questions     see you all this evening
Title: Re: Sustiva/Truvada
Post by: Tony on June 22, 2006, 12:40:00 pm
I hear there is a new drug that you only take one tab and once a day coming out soon.  I believe its the same as Sustiva and Truvada  only in one pill.  Not a cure but,  only one dose.   Any one know?  Tony
Title: Re: Sustiva/Truvada
Post by: Teresa on June 22, 2006, 03:17:19 pm
My hubbys dr told him about it..said it would probally be available in july or august..she wasnt sure but she did say that hubby would be on it and it would be so much easier to take one pill instead of 2.


Teresa
Title: Re: Sustiva/Truvada
Post by: Rob P on June 22, 2006, 04:51:00 pm
I heard the same thing, Teresa.  As I was starting the two-pill regimen, Doc told me by Fall it would be a combo ONE PILL.

Here's a new issue for me, I've got a shooting pain going down my right leg and a new, raised rash at spots along my calf.  The bottom of my foot is WIERD, feels like I'm walking on blisters.  But, nothing shows on the bottom of foot. 
I'm waiting for a call back from the Dr. office

Has anyone else experienced this or heard of this one?  Is it just my "old age" kicking in?

Title: Re: Sustiva/Truvada
Post by: Rob P on June 22, 2006, 04:53:44 pm
Max!

So glad to hear you're ok this morning.  And being light-headed is just like another day.   Still take care of yourself, tale it easy, and keep in touch wiith us all.
Remember, change is just change. 


We'll pulling for you buddy.

Title: Re: Sustiva/Truvada
Post by: Tony on June 22, 2006, 05:49:11 pm
I heard the same thing, Teresa.  As I was starting the two-pill regimen, Doc told me by Fall it would be a combo ONE PILL.

Here's a new issue for me, I've got a shooting pain going down my right leg and a new, raised rash at spots along my calf.  The bottom of my foot is WIERD, feels like I'm walking on blisters.  But, nothing shows on the bottom of foot. 
I'm waiting for a call back from the Dr. office

Has anyone else experienced this or heard of this one?  Is it just my "old age" kicking in?



Nothing like that here. Let us know
Title: Re: Sustiva/Truvada
Post by: Rob P on June 22, 2006, 06:26:42 pm
must be my goofy body being GOOFY
Title: Re: Sustiva/Truvada -- One Pill
Post by: OakMax1 on June 22, 2006, 08:28:31 pm
Hey Everyone,

Just in from work... what a day!!!  anyhow.. see atricle attach regarding sustiva/truvada in one pill.... saw this article  ...

[attachment deleted by admin]
Title: Re: Sustiva/Truvada -- One Pill
Post by: jordan on June 22, 2006, 08:33:30 pm
Hey Everyone,

Just in from work... what a day!!!  anyhow.. see atricle attach regarding sustiva/truvada in one pill.... saw this article  ...

My doctor said that it should be available by October.  I'm hoping it's true.  I really don't have a problem taking both pills at once...but this would be more convenient.   8)
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 22, 2006, 08:48:14 pm
Hey All,

Not to bad of a day,  I just need to make a few modification to my life and go with it... Was doing fine until I sat down at my desk, was beginning to get sleep and tired... not sure what that was about... ... took a 15 min. break and took a nice long walk by my office and stop and pickup some yogurt.  My was balance was off and I was somewhat light headed ...like an uneasy walk... I have to admit I feel find right now....

I purposely ate a big lunch and will have something light in about an hour or two...   I can't believe I am  making this a part of my life..... wow!   

I can't wait until it just one pill, which would be great..  My doctor told me about it not to long ago..

Well.  think I am off to the gym or the park for a run.... how does that sound for my first day out..  ::)...  have a great evening you all... may come back later.... max
Title: Re: Sustiva/Truvada
Post by: Joel90069 on June 24, 2006, 01:16:48 am
I need some feedback. I've been on Truvada/ Sustiva for six weeks. The results have been very impressive; viral load, already undetectable, etc. I'm having a problem with concentration and depression however. I have a stressful job. Mood and thinking clearly are very important. I discussed it with my doctor today and he mentioned switching to Viramune. He claimed that the problems with concentration would've gone away by now if it was going to go away. I'm nervous about making a change with such good numbers. Is there a possibility Viramune won't work as well as Sustiva? Has anyone had similar experiences? Is it worth taking the risk? Is it better to do it early on as opposed to waiting a while to see what happens?
Title: Re: Sustiva/Truvada
Post by: cubbybear on June 24, 2006, 01:58:23 am
Joel,

Your doctor isn't correct in saying the side effects of Sustiva should have gone after 6 weeks, that's a very general statement.  For some people, they persist longer, others dont get them at all, others have them come and go, and others have CNS side effects from Sustiva so bad they just can't take it anymore, and generally switch to Viramune or a PI.  Personally I think it's a great drug, and when it works, it works very well.  I have been on it for 9 months now, and despite the ocasional woozy feeling, I no longer have side effects.  I don't blame Sustiva for my depression or inability to concentrate at times, although it's a good excuse at times, I would be experiencing that even if I wasnt on meds, by trying to deal emotionally with having HIV.  For me I had to think about if my "side effects" were side effects of the medication, or "side effects" of dealing with HIV/AIDS.  I decided it was the latter.

If you can stick with that orange acid bomb, it will be a great drug and it really suppresses the virus well; however if you are really having trouble, then by all means switch to Viramune or a PI based combo.  For me, it took a lot longer than 6 weeks for the "side effects" to settle down, ultimately it's your call.

Cheers
Matt
Title: Re: Sustiva/Truvada
Post by: Rob P on June 24, 2006, 10:24:22 am
hello, All.  well, on Thursday I mentioned a new rash and what felt like blisters on my right foot.  Spoke with the dr office, and Yeah!  I'm not nuts.
But, SHINGLES.  now my right leg throbs and burns, foot it proped up with an ice pack on the bottom of my foot.  Doc started me on new med and I sure hope it starts working soon.  Just glad I'm not crazy!  I'm not walking, but I'm not crazy either.

Never had shingles before but I'll keep you posted.  At least it's not side effect of sustiva/truvada
Title: Re: Sustiva/Truvada
Post by: Joel90069 on June 24, 2006, 02:28:51 pm
Thanks Cubbybear. I'm confident the concentration issues are Sustiva related. I'm having trouble with things that were never a problem before. I'm just having a hard time balancing risking the good results vs. having the fogginess clear up with the unknown effectiveness of another drug. I'm leaning toward holding off until my next doctor visit (September) and seeing if there is a change.
Title: Re: Sustiva/Truvada
Post by: newchapter on June 25, 2006, 12:42:28 am
Yes....a new "single" pill is on the way. But one pill or ten doesn't make a difference to me.  My focus is on a cure!  We should all be active in helping to find a cure in any way we can.  Banning together and having sites such as this will help our voices to be heard!  So let's all get active!


To Better Health,

B.
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 25, 2006, 12:51:36 pm
Here here, one pill is nice and all...but a cure is better.... until the goverment decide what more important beside war...Aids will always be on the back burner.... but for right now I'll take the two pills..... I am becoming more active in the fight of aids.....

Hey Rob, I hope you feel better...  Wednesday will be my first week on med... no real side effects so far... keeping my fingers crossed... have a great day... just checking in....
Title: Re: Sustiva/Truvada
Post by: newchapter on June 26, 2006, 10:02:41 pm
The latest news across the media prompts me to add to my previous statements!  I think the Gay community and persons with HIV need to rally around and cheer the extreme generosity of Mr. Warren Buffett with his stagering donation of $37 billion to the Bill and Melinda Gates Foundation.  The Gates Foundation has 2 top priorities in the world...Education and a cure for AIDS.  It is going to take private citizens such as these individuals to lead the fight in finding a cure.  Our present administration has left our country finacially strapped. With the Buffett donation, the Gates Foundation now has $60.7 billion to help fight the cause.  The Gates Foundation has shown it's extremely effective in getting money to where it is needed most.  Let's hope this recent act of generosity will start a trend amongst the wealthy of the world and make giving the new "IN VOGUE" thing to do!

As I stated previously....we can all do our part in fighting the cause in whatever way we can.  It's easy to say that Warren Buffett, Bill and Melinda Gates are a inspiration and that we should acknowledge and thank them for stepping forward.  Knowing such individuals are present in the world will help me sleep a little better!

To Better Health,

B.
Title: Re: Sustiva/Truvada
Post by: OakMax1 on June 28, 2006, 02:35:10 am
Many thanks to Warren Buffett and Bill Gates... it will be people like these who will bring about a cure... without the help of the goverment.... hopefully in this life time.
Title: Re: Sustiva/Truvada
Post by: LYFE on June 30, 2006, 01:07:20 am
IM currently taking truvada and sustiva i feel drunk depressed and unsure of life i recently was diagnosed and i feel like i am in this world alone i have a boyfriend but i fee like he just with me i don't have anyone and didn't tell anyone my  daughters are Joy but i just cant wrap my fingers around this whole situation so the medication doesn't exactly help with my current battles i guess i should be happy right but I'm not i guess it will get better but i pray that it gets better
Title: Re: Sustiva/Truvada
Post by: Rob P on July 01, 2006, 08:00:00 am
greetings, Lyfe.
Hang in there.  It will get better!  What you feel is very common, from the newly diagnosed depression to the new meds feeling.  It will take a while to get "comfortable" with your new life, but you will.  Don't fret the small stuff, just take care of YOU for now.  Feel very comforted that you have your daughters.   Keep up converstations with your boyfriend.   Talking and venting, and sharing your felings will help you ride out the initial fears.
Hang in there, Lyfe
Title: Re: Sustiva/Truvada
Post by: JohnOso on July 01, 2006, 05:31:41 pm
Lyfe,

it WILL get better for you, i promise you.  we're always going to have some obstacles placed in our paths, but you have overcome things in the past (no doubt) and you will do the same thing with this.

it may take some time to get your mind in a better place, after all it's quite a shock to deal with.  it's just one more part of this puzzle we're living.  don't forget your loved ones, and lean on the folks here when you need to.

everyone here has had some bad times...it's important to not shut yourself out of life.  when you feel that happening, take some time to make yourself happy with something you enjoy, or just type out your feelings right here on AM.

just remember to help someone else out who needs it when you get to that better place!   :D

John
Title: Re: Sustiva/Truvada
Post by: artjay 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?
Title: Re: Sustiva/Truvada
Post by: OakMax1 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 :-)
Title: Re: Sustiva/Truvada
Post by: Smoothguy_pdx 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
Title: Re: Sustiva/Truvada
Post by: Joel90069 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.
Title: Re: Sustiva/Truvada
Post by: HipHoppus 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.
Title: Re: Sustiva/Truvada in the morning....
Post by: OakMax1 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
Title: Re: Sustiva/Truvada (HIV/AIDS patients get 1st once-daily pill )
Post by: OakMax1 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
Title: Re: Sustiva/Truvada
Post by: Ur2shyshy 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....
Title: Re: Sustiva/Truvada
Post by: MitchMiller 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.
Title: Re: Sustiva/Truvada
Post by: OakMax1 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
Title: Re: Sustiva/Truvada
Post by: bella 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.

Title: Re: Sustiva/Truvada
Post by: newt 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
Title: Re: Sustiva/Truvada
Post by: bella 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!
Title: Re: Sustiva/Truvada
Post by: Hamster 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.....
Title: Re: Sustiva/Truvada
Post by: Nadine 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
Title: Re: Sustiva/Truvada-Bad Reaction
Post by: Dexter 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.
Title: Re: Sustiva/Truvada
Post by: Hamster 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
Title: Re: Sustiva/Truvada
Post by: Dexter 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
Title: Re: Sustiva/Truvada
Post by: bradmeistr 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.    :)
Title: Re: Sustiva/Truvada
Post by: Rightbrain 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
Title: Re: Sustiva/Truvada
Post by: Hamster 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....
Title: Re: Sustiva/Truvada
Post by: Batboy 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.