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Poll

Sustiva mental side effects ?

Brain fog
1 (5.3%)
Slower thoughts
1 (5.3%)
Depression
0 (0%)
Induced mood swings
0 (0%)
Altered mood state
0 (0%)
Brain fog &Slower thoughts
0 (0%)
Induced mood swings& Altered mood state
0 (0%)
Feeling drunk
4 (21.1%)
All above
11 (57.9%)
None of the above
2 (10.5%)

Total Members Voted: 19

Author Topic: Sustiva side effects  (Read 5404 times)

0 Members and 1 Guest are viewing this topic.

Offline SASA39

  • Member
  • Posts: 690
Sustiva side effects
« on: May 18, 2007, 09:47:46 AM »
For how long are/were you on Sustiva ?
What kind of strange side effects did you experienced ?
Have you changed Sustiva to another medication ?
Do`s and dont`s for Sustiva..................
                                         Al
I`m on Sustiva for 7 months and it is giving me some really rough psycho time..........I was never depressed before , and now...........feel like I have put my brain in the washing machine...............Once I have almost fell down on the floor after getting up from a chair......late in the evening.

I`m may be boring , but let us find just how much of us are suffering from Sustiva strange effects...............
« Last Edit: May 18, 2007, 12:42:03 PM by SASA39 »
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,056
Re: Sustiva side effects
« Reply #1 on: May 18, 2007, 10:14:56 AM »
I've been on Sustiva for about a year and it still gives me strange, almost psychotic dreams and sometimes I feel like I'm having an anxiety attack.  I try not to eat anything that has a high fat content when I take it, because that makes the dreams worse.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Blixer

  • Member
  • Posts: 712
Re: Sustiva side effects
« Reply #2 on: May 18, 2007, 04:02:34 PM »
I've been on Sustiva for about 14 months.  I take it in the morning about an hour before breakfast.  I find that I have some really strange dreams now, but they are never upsetting or scary, just sometimes very odd.  Once in a while I'll have a slightly dizzy feeling and every now and then I'll have a slight touch of "brain fog" but nothing very significant.  I don't think that it has affected my moods and it has not caused any increase in anxiety for me.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline budndallastx

  • Member
  • Posts: 463
Re: Sustiva side effects
« Reply #3 on: May 19, 2007, 12:34:27 PM »
I have been on Sustiva now for six months.  Other than the initial side effects, there has not been anything of note besides the occasional weird dream.  I have noticed they are getting less frequent and when they do occur, it's just the result of the day's events and I am reliving the events with a weird twist.  Nothing to upsetting though but good conversation sometimes at work.

I do have occasional morning fogginess but am not sure it's the Sustiva or just not getting my eight hours of sleep.  Coffee always fixes that for me.

I think the survey should be modified to include "None of the above" since it's based on the assumption everyone has problems with Sustiva.

Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline Blixer

  • Member
  • Posts: 712
Re: Sustiva side effects
« Reply #4 on: May 19, 2007, 01:22:45 PM »
Bud, I didn't fill out the survey because none of the choices really fit my experiences.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline SoSadTooBad

  • Member
  • Posts: 248
Re: Sustiva side effects
« Reply #5 on: May 20, 2007, 05:55:45 PM »
Been on it for a year now.  Other than a drunk feeling for about 2 hours after I take it, I do not have anything to report. 

Offline SirPrize

  • Member
  • Posts: 78
  • SirPrize!
Re: Sustiva side effects
« Reply #6 on: May 21, 2007, 01:46:11 PM »
Sustiva has been a part of my daily regimen for 6 years and 7 months now.  It continues to be a part of the combo that keeps my viral loads undetectable and T-Cells at a stable level.

I have, however, experienced all of the side effects you listed but they are much less noticeable nowadays.  I do wake up with a slight hangover but a couple of cups of coffee and hot shower seems to remove the "fog."  If you can handle the side effects AND Sustiva is working for you, I would recommend you give it time to work out (let the body get used to) the kinks that accompany the drug.
Due to current economic conditions, the light at the end of the tunnel has been temporarily turned off!

Offline dingowarrior

  • Member
  • Posts: 191
Re: Sustiva side effects
« Reply #7 on: May 25, 2007, 12:20:04 PM »
Been on it about a year,first nite was likea bad acid trip...after that one night everthing was fine...Correction..i saw white spots for a cuople of months..then it cleared up..alls well now...

Offline schnitzer

  • Member
  • Posts: 43
Re: Sustiva side effects
« Reply #8 on: May 26, 2007, 02:50:06 AM »
been using it for 4 months... my first day was crazy drunkness.. i was walking down the hallway to the toilet and everything was moving.. when i woke up, everything felt like fog.. i had some rough times in my relationship and i felt over emotional... thinking too much..  i had dreams that don't make sense.. i dreamt about stapling papers at work..-why?? i get itchy rash thy area, arm pit area, crotch... i pretty much experienced all the side effects.. most of it's going away... except for the rash.. if only the rash went away-this would be the perfect drug.. after a full meal, i have to sleep.. i drove once while peaking.

Offline bradmeistr

  • Member
  • Posts: 36
Re: Sustiva side effects
« Reply #9 on: May 27, 2007, 03:27:39 PM »
I have been reading all the posting on Sustiva, know others persoanlly who take it, or have taken it, and everyone is different.  For some the side effects are very mild or nonexistent, for others it is unbearable.  I fall somewhere in the middle.  Almost every morning, my head fells slightly to very foggy, all depends on how much time there is between what I eat, and or drink, and the time of dosing.  Luckily no real wierd dreams here, vivid, but no crazy dreams - I count my blessings.  My biggest gripe about Sustiva is my difficulty concentrationing, forgettfulness, and touch of depression/anxiety -I take Sustiva and Truvada.  I have tried Wellbutrin, but it was only somewhat helpful.  I plan on talking to my doc about switching to Viramune but I hear it has its own issues.
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline chemistry001

  • Member
  • Posts: 142
    • http://www.mygaydar.com/chemistry001
Re: Sustiva side effects
« Reply #10 on: May 27, 2007, 09:18:57 PM »
As I'm writing this I'm feeling drunk from the sustiva, but because its a bank holiday weekend i don't feel the need to go to bed. I took my meds 3 hours 18 mins ago so well into the effects of not sleeping straight away.
I tend not to eat in the evenings and find that it helps to go to bed straight away, fall asleep before i feel like this.

Love to you all
Paul xXx
Diagnosed 01/08/06
CD4-9, VL->500,000, CD4% 1
Started on Sustiva/combivir 22/08/06 changed to kivexa 18/09/06
02/10/06
CD4-50, VL-1496, CD4% 5
04/12/06
CD4-112, VL-125, CD4% 7.5
22/02/07
CD4-121, VL-<50, CD4% 9
29/05/07
CD4-125, VL-71,(re-done 149), CD4% 11
25/09/07
CD4 -231, VL-74, CD4% 15
Cant remember the next few dates
17/01/08  Kaletra and Truvada
CD4 - 281, VL-115
06/03/08
CD4 - 287, VL-178

Offline Kevin973

  • Member
  • Posts: 7
Re: Sustiva side effects
« Reply #11 on: May 28, 2007, 12:06:35 PM »
 I am on Atripla which is Truvada and Sustiva combine. I don't know which drug causes the worst side effects but after I take my pill, within an hour I get this light headed feeling like I'm drunk and my entire body gets really hot all over its a rush of heat all over my body and my skin starts to itch all over.  The heat rush goes away but the itching is really bad. I dont have any rashes but my only problem with the drug is the itching and the fact that I think this drug causes weight loss. I enjoy the dreams, because its always a recap of my day with a slight twist ;D

But I have a question for anyone on the board.  Is there a drug regimen that is more weight friendly that helps you gain weight rather than lose weight?

Offline cubbybear

  • Member
  • Posts: 510
  • Joined August 2005.
Re: Sustiva side effects
« Reply #12 on: May 29, 2007, 07:48:11 AM »
I've been on Sustiva for almost 18 months now.

For the first year I had that foggy/dazed feeling like the lights were on but no one was home... and got that drunk/stoned feeling shortly after taking it, it would get quite bad, to the point I would be quite dizzy and have to hold on to the hallway walls when walking to the toilet at night.  Also insomnia, mood swings and what ever else I used to blame on poor old Sustiva.  Over time this lessened to shorter periods of side effects and longer breaks in between them.  Starting at being fine for a day or two a week, to eventually being full weeks with the ocasional day of side effects.

Now, after 18 months, I don't have any side effects from Sustiva what so ever, even if I take that orange acid bomb with a huge fatty meal.  Nothing, nada, zippo!
« Last Edit: May 29, 2007, 07:53:32 AM by cubbybear »
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline aztecan

  • Member
  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: Sustiva side effects
« Reply #13 on: May 29, 2007, 10:04:30 PM »
I hope I have your luck, Matt.

Its only been about a month for me, but so far, the bad days are outnumbering the good ones.

Yesterday was great. I felt good, alert, active.

Today, I didn't feel safe driving my car until nearly 10 a.m., and I took my dose at 11 p.m. Even at 10 a.m., I think I was running a risk of DWI, but I managed.

I also have mood swings, usually involving anger and depression. They aren't as pronounced, but my patience is very short these days.

I don't think I will have the fortitude to wait a year for this to clear up.

We'll see what happens.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline MitchMiller

  • Member
  • Posts: 482
Re: Sustiva side effects
« Reply #14 on: May 31, 2007, 12:55:20 AM »
4 years now.... it has made me anti-social, in that I just feel like I don't really need contact with people like I used to... I get excited about almost nothing... I think the mental effects are insidious and slowly creep up on you over the years without you even realizing.... imarobot!
Mental fog and drunkeness still hits me randomly and causes insomnia.  I'm now taking it in the middle of the night.  I set my alarm for around 3AM and take it and usually can quickly go back to sleep before it kicks in.  Usually I can then get through the rest of the night with only intermittent waking.  It also temporarily turns up the volume on my tinitus. 
Lately I've begun trying green tea extract (decaf).  Taken at lunch, it seems to make me feel better ... maybe it's my imagination. I take around 15 supplements, seligiline, HGH, and vitamins (not including a multi) so hard to tell what's doing what anymore.

Offline hahaha

  • Member
  • Posts: 123
Re: Sustiva side effects
« Reply #15 on: May 31, 2007, 01:08:34 AM »
I have sustiva for half year now.   And the first three month is like spining and spinning and never end.....
Since I am reluctant to change the med.  I decide to cope with it.  I break the Sustiva into half-half. 

One half in the morning
one half during the night.
It makes life much easier.  I fall asleep easily with half of the pill at night time, (with my favorite porn movie, of course, sweet dream ;D)
in the morning, i take it at 10 am, soon in lunch time, I feel a bit dizzy. 
Good things is, in Taiwan culture, taking a nap at noon is OK. 
I tell my stuff it is a"power nap" that give me more energy in the afternoon.
a 15 min nap it will go away.  And you have all the energy to handle all the matter in the afternoon.

you may try to do that as well
Aug 9, 2006 Get infected in Japan #$%^*
Oct 2006 CD4 239
Nov 2006 CD4 299 VL 60,000
Dec 1, Sustiva, Ziagan and 3TC
Jan 07, CD4 400

Offline SASA39

  • Member
  • Posts: 690
Re: Sustiva side effects
« Reply #16 on: May 31, 2007, 02:29:21 AM »
So far 57,1 % has said that they has all the symptoms stated....... :o
So let us continue the thread...............
Maybe we can expand it with 2 questions :
a) What would be the best switch drug ?
b) Do you use some AD to help you against those bad Sustiva effects and does it help you ( and in what dossage )?
 ( I`m taking a Escitalopram 5 mg/day but it doesn`t seem to help me at all )
                                          Al
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,056
Re: Sustiva side effects
« Reply #17 on: May 31, 2007, 09:59:01 PM »
I will say one thing about taking the Sustiva.  I still have a couple hours of feeling sort of high and I just go with it. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: Sustiva side effects
« Reply #18 on: June 01, 2007, 12:40:19 AM »
I am really very unhappy with this poll. What is the purpose of this?

If most people are fine on Sustiva, and acording to my specialists it is a very well tolerated drug and in his opinion only 1% of those taking it cannot tolerate the side effects.

if 80% are fine, isn't this poll a bit of scare mongering?

I'm sorry, but I feel with the nature of complaints that are often exhibited in this board, this type of poll just reinforces problems and not the advantages of sustiva based treatment. If you are having difficulty, discuss the issues with your doctor and figure out another regimine more to your liking.

Remember lots of people read these columns, what is the message to all of us out here, That Sustiva Stinks? Please keep this in mind. that is all I humbly request, and i truly do not mean any disrespect.

risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Miss Philicia

  • Member
  • Posts: 24,426
  • celebrity poster, faker & poser
Re: Sustiva side effects
« Reply #19 on: June 01, 2007, 01:05:21 AM »
risred, this is an internet forum, not a professional convention and hence more akin to a conversation you might overhear at a party.  If others reading these web boards don't understand this simple context issue about the internet they have larger worries in my opinion.

Basically, and it's not the first time, you're attempting to stifle a discussion of side effects that others may benefit from hearing.  If it bothers you on a personal level because you've yet to commence HIV treatment then you might want to make use of your scroll wheel.  That's why it was invented.  And there has certainly been a balance of opinion on the severity of the side effects on this thread.
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

  • Member
  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: Sustiva side effects
« Reply #20 on: June 01, 2007, 01:50:11 AM »
Quote
I am really very unhappy with this poll. What is the purpose of this?

If most people are fine on Sustiva, and according to my specialists it is a very well tolerated drug and in his opinion only 1% of those taking it cannot tolerate the side effects.

I would suggest you tell your specialist to take it and then report how he/she handles it.

I have known people who had absolutely no problem with Sustiva. Some had a few days of the dizziness, then nothing. I have known a few who developed side effects a year after starting it.

Much the same discussion could be found on any of the ARVs. AZT, the oldest and still one of the most potent drugs around, has a litany of side effects that some people experience. I have taken it for more than 11 years with few problems.

I switched to Sustiva because the PI I was taking (Crixivan) was causing some marked body shape changes.  Not everyone experiences this, but I did. At this point, I am somewhat sorry I switched but, I am hopeful that, after a few months on Sustiva, I will be able to get back to a more normal life.

No topic of discussion should be taboo in an open forum.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline SASA39

  • Member
  • Posts: 690
Re: Sustiva side effects
« Reply #21 on: June 01, 2007, 02:32:48 AM »
Purpose of the thread was for one to understand that if he has a Sustiva side effects ,he is not the only one.To see that there are a broad spectrum of side effects and also if he do have some , that he cannot tolerate, he could switch from Sustiva to some other drug.
And yes  , if you do not have a problems with side effects there is always a scroll button as philly has just said..............
                     Al
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: Sustiva side effects
« Reply #22 on: June 01, 2007, 10:47:07 PM »
I would say me stating an opinion that is counter to the thread passes the legitimacy test for allowed response. So is that really an issue?
I scroll by all the time, but topics such of this are an interest to me. If I may explain.

I want it clearly understood that for those of us more recently POZ, the message of doom regarding treatment is generally counter productive in the larger sense that others like me who are on the edge of treatment are being reinforced a truly negative view of medications by some who are not asking quesions for help but rather through their actions are actually condemning treatment.

I can only react to this by pointing it out so we can try to achieve, hopefully in my opinion, a more balanced state that discusses the issues of treatment without producing its own side effect of creating undo worry by those who are pre med. (like myself).

I could not read this forum for two years because of the dread it made me feel about being poz. I am sorry to say this. I know there are others who have stated this as well.

So I can't accept the statement that everyone who reads these forums knows the score. That is clearly not true. One should not make that supposition, in my opinion.

So if i encounter what i feel is undo negativity that may create uncertainty or fear of treatment, i am prepared to comment as such.

If there are treatment experienced folk who need to express their problems with treatment, and I do understand this, perhaps the long term survivor section may be of more assistance in that regard. This forum is Questions About Treatment and Side Effects. Conducting a poll regarding side effects of Sustiva is a question about treatment? Is it really a question about a side effect one may be experiencing? That is why I'm asking this question, what is the purpose of this poll? Perhaps what I should state is, what is the purpose of this poll doing in this forum?

I think, therefore I can. (clever eh?)



risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Miss Philicia

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Re: Sustiva side effects
« Reply #23 on: June 01, 2007, 11:14:59 PM »
Risred, it seems to me that the topic starter in question listed the most prevalent and various side effects for a certain HIV medication, one which is well known probably above most of the others for having shall we say "unique" features mentally.  I think he was trying to ascertain by anecdotal claims which particular side effect is experienced the most.  It's natural for someone newly on HIV meds to run these things through their head.

As you stated just now it took you 2 years to even approach the board, so I think this says a bit more about where you are coming from and that you have still many anxieties about treatment, which while I personally never had the luxury of experiencing for longer than 2 weeks before deciding to take AZT which had just been blasted at an AIDS conference the month before as a "Poison Pill".  Anyway, I think your argument is a big of red herring as there certainly are positive and/or neutral experiences posted on this board concerning HIV treatments and their side effects.  Perhaps you're only focusing on the negative ones due to anxiety?

As far as your comment about what I assume was my statement about "everyone who reads these forums knows the score" that was a bad reading of what I said.  What I stated had to do with the general nature of web board discussions on the internet, not some assumed knowledge of newly diagnosed individuals with the minutiae of med side effects.

Anyway, I do appreciate your concerns but I don't find them particularly practical in this context.

As far as your last complaint about the placement of this poll in the forum section called "Questions About Treatment and Side Effects" it seems quite logical to me that it resides here, as he's asking a question in poll form about side effects.  I'm rather at a loss about what you aren't comprehending in that regards.
"Iíve slept with enough men to know that Iím not gay"

Offline risred1

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Re: Sustiva side effects
« Reply #24 on: June 01, 2007, 11:48:14 PM »
Luxury is an interesting qualifier.

Yes I get to luxuriate in the tantalizing dance of when to start or not.

Ultimately some of this can degenerate into a class war between treatment expereienced, long term survivors like your self who have seen the entire scope of the issue from the begining to the current state of "chronic" care, vs. Those of us too new to first know and then be able to truly understand the horrorable side of aids.

Perhaps I haven't earned the right to comment? Because I haven't suffered enough? That my piddling anxiety has nothing to compare to the idea of staring straight into the reality of what could be a pre mature death.

Well, you would be right of course.

I have the advantage of becoming poz on the cusp of a vaccine that might allow my immune system to control HIV. But there is one problem. It isn't here yet. Until then, I still need to act with care and concern for the immediate future of life with meds. Now I'm pretty sure it will be fine. I've learned enough to be really fairly comfortable. But it wasn't always that way. I'm not "speaking" for the newbies that are adjusting, I'm just a person who can see the impact of things like this. I do know that when I was educating myself about meds and treatments and possible side effects, the focus on side effects and the overall negativity expressed in forums was in fact making me concerned that life with meds is a greatly reduced quality of life.

What is often lost is the perspective of comparing Medicine induced Side Effects as compared to HIV Side Effects.

What I'm stating is that I'm dubious as to the purpose of this poll perhaps in the unintended consquence of dealing with Sustiva Side Effects. I'm taking it as a larger overall steady drumbeat of complaints about Sustiva to the point it is actually being discouraged as a front line treatment.

So I will conceed that I am overreacting. But my thoughts about slamming treatment options remain.
« Last Edit: June 02, 2007, 08:23:00 AM by risred1 »
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Miss Philicia

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Re: Sustiva side effects
« Reply #25 on: June 02, 2007, 10:41:23 AM »
In no way was I implying anything of the sort of the tired "class warfare" of LTS vs. Newbie.  I think you know me on these boards well enough that I do not participate in such shenanigans.  I do freely offer my perspective as a LTS, but I hope I do so in a constructive manner lacking any condescension.

Perhaps my choice of the word "luxury" was not the best.  All I meant is that if at a base level one was given the choice of being diagnosed with 200 cd4s and going on immediate treatment (like I did) or having +400 cd4s (or whatever yours were) when diagnosed and getting to be med free for at least two years which would any neutral observer chose?  Seems natural to me that it would be your position, not mine; and that was all I was referring to.  Instead of being immediately slammed on treatment, you've been able to research things, etc. -- yes, the caveat is that you have also had to deal with the anxiety of a Sword of Damocles at the same time, but hopefully that's a mental factor that you've been able to manage.

Anyway, for the record in the thread, risred and I have been PMing and I think we're more on the same page than might be apparent in our discourse in this thread.  Yes, it would be nice if all board participants voluntarily offered a reasoned, rational discourse on their anecdotal experiences with the side effects of any particular HIV meds, but in the real world we must also accept that if you're at home wretching over the toilet all night that it's also reasonable that you will log onto AIDSmeds and start a dramatic thread ranting about the evils of Big Pharam... I just don't see a way around this, and it's purely contextual as I stated to web boards on the internet.

As far as your last statement about Sustiva as a front line treatment.  My personal opinion is, if I was in your shoes, is that the vast majority deal with Sustiva, and for those that don't the alternative is Kaletra (isn't it Kaletra + Truvada?... can't recall).  It's basically a choice of the following side effect, which are merely POTENTIAL ones and NOT A GIVEN:  do you want a few strange odd dreams or do you want runny poop?  Personally I'd go with the odd dreams, as I don't like running to the toilet all the time.  But MY BODY was more sensitive to the trots than most other people, so my experience may not be that applicable.  However, if I were to experience more than just bad dreams, where I felt like I was on acid while working in the office (like a good friend of mine did on Sustiva) than I would insist to my doctor that I had to go on something else.

Seriously, it's not that big of a deal.  I'm not meaning to make light of side effects, as we know the potential is real, but if one is aware of them as they happen because you have read of other's experience you can better know that you're not a dramatic hypochondriac and make a rational decision that this particular treatment is not acceptable in terms of quality of life.  Quality of Life MUST be the bottom line for HIV patients and their doctors, in my view, unless one is out of other options.  Fortunately I currently have a HIV specialist who insists on that same basic idea.
"Iíve slept with enough men to know that Iím not gay"

Offline budndallastx

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Re: Sustiva side effects
« Reply #26 on: June 02, 2007, 11:48:15 AM »
The thing that must be pointed out to everyone is that each person's experience with the medicines will be different from others.  We all respond differently and we all react differently to the side effects.  What works for one doesn't work for the other person.  For the newly diagnosed, the medicines available today are much better understood then they were 5 years ago.  Science advances and so does the medical community's understanding of HIV/AIDS.

The best advice for anyone is to be a critical reader.  Question everything you read and never ever take anyone's comments at face value.  Each person, whether intentionally or not, can bring their own biases into a conversation.  If I read a post from someone that is counter to what most people are saying or what I am reading in the general literature, I look at what else they have posted and look at the tone / emotion in those other posts to help me understand why they are saying what they are.  Critical reading skills are essential in today's world since no one is 100% objective in anything written.

From my own personal standpoint, I was scared from all the negative posts on various sites about the medicines and only started because my ID told me I needed to if I was going to have a chance to survive.  After starting the meds, I had a horrible reaction to Ziagen which caused me to end up in the hospital for a couple days.  I could sit and post horrible things about Epzicom and Ziagen all day long but the truth is there are thousands out there who are doing quite well.  I just happen to be one of those who is not able to take that drug.  Luckily, there are alternatives and that's the key takeaway from everyone who is just starting.  There ARE alternatives.

My two cents worth...
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline MitchMiller

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Re: Sustiva side effects
« Reply #27 on: June 03, 2007, 09:44:11 PM »
I couldn't agree more w/BUD.  Also realize people that have issues with drugs are far more likely to come to a forum to look for answers than those that have no problems.  Forums will always be slanted toward those that have issues.
At the same time, when reading a study, if possible try to determine the endpoint criteria.  Often the endpoint criteria is rigged to produce a desired result.  Also look who financed the study... or who is financing the financiers... Look for conflicts of interest.
I dislike Sustiva but I stick w/it mostly because of cost and the comparitive complications that I've read other meds have.  Sustiva has been used long term without serious physical complications... so far.  The mental issues seem to go away after stopping Sustiva, so they don't appear to be permanent... so far.  The same may not be true of the alternatives... but that's my opinion.  None of this stuff is entirely harmless.  For what it's worth, my blood work shows me in really great shape for someone my age (50) except for very slight anemia (asymptomatic - which I may have had before being HIV+ anyway) and suppressed immune system (which nearly all HIV+ have to some degree).

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Sustiva side effects
« Reply #28 on: June 03, 2007, 11:14:52 PM »
I was trying to say what Bud and MitchM said, but probably was rather inept at it. But that was the point of my bringing up AZT, etc.

Some do splendidly on a med, others have horror stories. Crixivan, one that I took, didn't cause me problems for a long time. Then it did.

I knew others who simply couldn't tolerate it.

It is very individual.

What I think is beneficial about these types of discussion is for people to know what might happen. It doesn't mean it will, but that the possibility is out there.

That way people can be prepared or do more research or whatever.

Like I said, my first three weeks on Sustiva were really touch and go. However, this past week has been good and getting better, which makes me a happy camper.

My only other option was to look at another PI or some other combination of nukes because Viracept is not a really good option with someone with my CD4 levels.

So, see, there is a silver lining after all. But I am glad the first three weeks is over and done with.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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