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Author Topic: Sustiva question  (Read 8059 times)

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Offline aztecan

  • Member
  • Posts: 5,513
  • 31 years positive, 59 years a pain in the butt
Sustiva question
« on: June 11, 2007, 11:29:12 AM »
I know there are those who have taken Sustiva for a longer period of time and I have a question.

Lately, I have been feeling anxious. I guess that is the best way to describe it. Anxious, on edge, uneasy, feeling like something untoward is going to happen.

This rarely happened prior to beginning the Sustiva and, when it did, I could usually pinpoint why I was feeling the way I did. But lately, the feeling is there most of the time and there is no reason for it.

I was just wondering if the Sustiva could be doing this or whether something else is going on. I get headaches every day now but I don't think that is why I feel so anxious.

Could this be a result of the weird dreams - which, by the way, have ceased to be fun and have become annoying.

I read up on the side effects of Sustiva when I was starting it, but I didn't notice any mentions of feeling anxious.

Any advice, information, experience would be welcome.


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

Offline Dachshund

  • Member
  • Posts: 6,058
Re: Sustiva question
« Reply #1 on: June 11, 2007, 11:50:45 AM »
After a year and a half on Sustiva I switched to Kaletra for just the reasons you mention. I gutted it it out for that long because of my numbers, but realized that in the end I just couldn't take the side effects. I'm not saying it is, but you describe to a T what I felt while on Sustiva. After discussing it with my doctor we decided switching to Kaletra was the way to go. The Sustiva psychotic fog lifted in less than a week after I stopped taking it. I've heard too many Sustiva stories not to believe this might be your culprit. I know I felt anxious worrying whether I was doing the right thing switching to Kaletra...now I know I did. Talk to your doc and good luck.


Offline ubotts

  • Member
  • Posts: 347
Re: Sustiva question
« Reply #2 on: June 11, 2007, 12:18:21 PM »
 :(Hi Matt.
I started susvista with viread and videx..Sustiva gave me the worse nightmares
aniexties and was beside myself..I dealt with all that..then i went for a tesst
to see if all my meds were working..and the susvista had stopped working..
So now iam on Kaletra and combivar...Much better..VL is indictable and my tcells
went from 27 to 241..ive been on this cocktail for almost 4 yrs...Now iam dealing with the skinny arms and legs..bloated belly and i look crappy so i feel crappy.
Iam a very vain women..I like to look good..too many people are starting to say,
Gee, your legs are so skinny..So i will take your advise and get off combivir
and ask my doctors if i can change my meds, and if i do will it help...i hope so.
Its summertime and i would love to wear a bathing suit..but omg..i look pregnant
and with skinny legs ..I just want to bury my legs in the sand.....this just
happened within the last year..Losing my hair could be stress if its not the meds.
Iam falling apart physically..oops this is about u Matt, not about me..iam sorry
just got caught up in the sustiva part..Ask the drs to change your meds..I feel
Sustiva is the worst of of all the meds i have been on..Nightmares like crazy
and it effected my daily life as well..Definitely ask for a change of medication.
Iam sure they can help u as they did me.. :-*
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline Ithaca_Nights

  • Member
  • Posts: 47
Re: Sustiva question
« Reply #3 on: June 11, 2007, 07:35:41 PM »
Ever since I started sustiva my normal anxiety got worse and I was put on xanax.  This has helped me a great deal and I usually only need it at night.  I fortunately have never had the dreams with sustiva.  Hope this helps.

Offline newbernswiss

  • Member
  • Posts: 260
Re: Sustiva question
« Reply #4 on: June 12, 2007, 07:56:58 PM »
I've been on sustiva at least 3 years...I can only take it before bed. I does help me sleep and have some great dreams. No anxiety, thank god. I have enough of that at work. Anyway, my only anoying side effect is night sweats from the sustive. My partner and myself have them. Sucks. PS 17 year survivor here and counting.

Offline wiser

  • Member
  • Posts: 40
Re: Sustiva question
« Reply #5 on: July 03, 2007, 07:41:41 PM »
On Sustiva little over a year in Atripla 1pill 1xday combo. If I stop eating by 7pm, take med around 10p and get to bed aat 11p I generally sleep well and rise 630-7am with minor grogginess that subsides with coffee. If I vere from this pattern the I get stronger side effects (restless sleep, sometimes vivid dreams but benign content, mild nausea, sweats, very groggy and irritable in morning). In the past 2 months I have had significant stress in my relationship with my partner and with changes in my job. I have been anxious, depressed, and had suicidal ideation more frequently than I am comfortable with. I am seeing my doc and a therapist to assess if antidepressant or antianxiety meds might help at least during this adjustment period. Since Sustiva is doing its job with mild side effects, I would prefer to stay with it. However, it is the culprit with the emotional issues I might have to consider changing. Also I want to up the talk therapy and the usual holistic stuff. It is all a work in progress for me at this time. (Used to be Gabby in the forums).

Offline J.R.E.

  • Member
  • Posts: 7,501
  • Joined Dec-2003 Living positive, since 1985.
Re: Sustiva question
« Reply #6 on: July 03, 2007, 07:46:02 PM »

Hello Gabby. Good to see you again !

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg






Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 9/16/16,  t-cells are at 501,   Viral load remains <40

Current % is at 12%

 65 years young.

Offline wiser

  • Member
  • Posts: 40
Re: Sustiva question
« Reply #7 on: July 03, 2007, 08:18:49 PM »
Hello Ray,

Sheepishly  I am back. About a year ago (after the first 2 rough years adjusting to my status) things took a turn for the better. Atripla is working great, general health and stamina cool, became involved in a new relationship with its ups and downs which is invigorating. I needed a break from the forums as I had become so dependent on the support and information in those first days. But I never forgot any of you, and I knew I would be back to share and to learn in time. Well the time is now. I have been having some difficulties with depression most of which I think is life adjustment related ... being 60 presents some interesting challenges. I was glad to see the changes on the site ... the mental health link is great and this long term survivior/older folks is also wonderful. Teasing out the interplay of the natural aging process, the meds and their side effects, and developmental mental health issues is intriguing and I am so happy to see how the forums themselves are dynamic and responsive to the changes all are going through. The Sustiva thread brings all these dynamics together. Bottom line as I said above, it is working well, but needs tweaking with mental and physical and developmental changes. Let's keep sharing.


Offline JDP3

  • Member
  • Posts: 20
  • Gomez, are you miserable, my darling? Completely.
Re: Sustiva question
« Reply #8 on: July 03, 2007, 09:03:10 PM »
It's interesting the different ways in which Sustiva affects different people.  It's been a part of my regimen for over two years now, along with Zerit and didanosine.  During the first few weeks I experienced the vivid dreams and the strange euphoria.  After some experimentation, I found it best for me to take at bed-time.  The lightheadedness to me is to reminiscent of coming off a bad trip.  About a year and a half after beginning Sustiva, I developed a rash on my neck which I attribute to this medication.  I found relief from the itching and burning sensation through the use of a hydrocortizone cream and antihistamine tablets.  I did continue with the Sustiva, though.

As time progressed, I began experiencing difficulty staying asleep for more than a couple of hours each night.  No trouble falling asleep.  Then came mood swings of (to me) near epic proportion.  50mg Zoloft helped for a while, then the sleep disorder came back full force.  My doc upped the Zoloft to 100mg and added 1mg Clonazepam.  Admittedly, I'm a bit sketchy upon awakening, but hi-test java and a shower work wonders.  This combination has been working for me for some time now.  My numbers continue to improve, so I'll stick with it as long as it works.  I never associated any headache with Sustiva, as Mark initially noted.  I believe I'm seeing the beginnings of lipodystrophy, but no one has yet accused me of cultivating that emaciated model look.  Just my two bits.... hope it helps.

"There is no beginning.  There is no end.  There is only the infinite passion of life."   -Frederico Fellini

Offline aztecan

  • Member
  • Posts: 5,513
  • 31 years positive, 59 years a pain in the butt
Re: Sustiva question
« Reply #9 on: July 05, 2007, 11:41:54 AM »
Hey Wiser (Gabby), good to see you again!  I hope your ups and downs are leveling out.

John, I have reached the conclusion I probably will switch from Sustiva. After two months, it is just about more than I can handle and it becoming dangerous for me. I drive long distances for my work and there have been times I have narrowly avoided a crash while in a fog from this drug.

So, I'll see the doc Monday and we'll have a heart-to-heart.

Now, regarding your lipo issues. You said you are taking DDI and D4T (Zerit). These, especially the D4T, are notorious for causing lipo. Another issue is they are prone to cause peripheral neurophathy.

I don't know if that is an issue for you, but it is something to keep an eye out for, just in case.

Anyway, just thought I would point that out. I am still in my morning Sustiva fog, so you can discount anything I post until I have had at least 12 cups of coffee.

I never thought I would miss the "good ole days" of Crixivan, but I am beginning to.

Take care.


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

Offline JDP3

  • Member
  • Posts: 20
  • Gomez, are you miserable, my darling? Completely.
Re: Sustiva question
« Reply #10 on: July 05, 2007, 05:00:22 PM »
Hey, Mark!

Thanks for your words of caution.  The mental fog and the dangers it facilitates regarding driving for work is why I've found it safer to take at bedtime.  I've read up on this particular combination.  The Zerit and ddI(Videx) are also known to possibly cause pancreatitis as well as potentially fatal lactic acidosis, very comforting to ponder each day as I swallow them.  However, the combination has been working well for me, as my VL is undetectable, my CD4 is 387 and considering the ultimate alternative, I'm tolerating the side effects well enough for now.

I may wake up tomorrow with the pins and needles sensation in my extremities or double over in excruciating pain from pancreatitis at dinner this evening.  But then again, I could be in a fatal car accident on my way home from work this afternoon.

I guess what I'm trying to say is that with any sort of medication or treatment, the more informed you are and the more alert you are to the onset of any side-effect, the safer you are.  But I'm certain everyone here knows that!

My best to you, Mark.  I sincerely hope you find a tolerable combination.

"There is no beginning.  There is no end.  There is only the infinite passion of life."   -Frederico Fellini

Offline aztecan

  • Member
  • Posts: 5,513
  • 31 years positive, 59 years a pain in the butt
Re: Sustiva question
« Reply #11 on: July 05, 2007, 08:29:29 PM »
Thanks John.

I do take the Sustiva at night. I can't imagine what it would be like if I took it in the morning.  :o

I took Crixvan for 11 years. Unlike many others, I tolerated it very well and only had a few problems with the kidney sludge - oh, and the buffalo hump on my back. But that didn't show up until after more than a decade on the med, so I can't complain.

I have taken AZT/3TC since 1996, except now I take it as Combivir. No real problems with that drug.

It is so individual, what works well for some others can't handle, and vice-versa. I'm sure I'll find something I can tolerate.

Thanks again,


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

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 30,128
Re: Sustiva question
« Reply #12 on: July 05, 2007, 10:31:12 PM »
Glad you're hanging in, Mark. Fingers crossed that it works for you.

Andy Velez

Offline wiser

  • Member
  • Posts: 40
Re: Sustiva question
« Reply #13 on: July 06, 2007, 09:46:01 AM »
Reading the replies I am getting a sense that there may be long term side effects from the Sustiva? Many talk about getting over the initial dreams and grogginess. But I see in several posts that after a year or two sleep problems and perhaps consequently mood, concentration, gorggieness sets in. That is what I seem to be experiencing now. OK and pretty pleased for about a year, and into 14months sleep and mood become more of an issue. I too fall asleep ok, but can wake up a few hours into sleep, have some problem falling back. Overr several days this sleep disruption has a cumulative effect and makes me anxious. Then I get anxious about being anxious (stop Paul!! lol do I sense some OCD popping out here!). I used to take Sustiva (Atripla combo) like a vitamin and not think anything of it. Now some other things seem to be happening. My first line of attack will be to work on getting sleep hygiene (cool dark room, allow 8-9hrs, same time to bed, same time and fasting time before taking meds) for the rest of this month and see what happens. I have my regular doctor appt beginning of August and see where it is at then. Perhaps a sleep aid would be enough to help, though I note many have had to come up with more exotic combos. Will let you know what happens.

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Sustiva question
« Reply #14 on: July 06, 2007, 10:40:31 AM »
Reading the replies I am getting a sense that there may be long term side effects from the Sustiva? Many talk about getting over the initial dreams and grogginess. But I see in several posts that after a year or two sleep problems and perhaps consequently mood, concentration, gorggieness sets in.

Welcome to the unintended consequences of expedited approvals for meds!  We did such a great job of getting drug manaufacturers to hustle meds through their pipelines and motivating the FDA and other regulatory bodies to give us quicker access ,that we bought into the adverse events of long-term use that could have never surfaced during the timeframes of the supporting studies.  Perhaps its time for us to demand better.

>>>rant over<<<

Given that Sustiva crosses the blood-brain barrier, it's not surprising that long-term use would develop a panoply of new symptoms.  I've been on a number of other meds during the last 25 years for seizures, depression, and ADHD;  and somewhere between 10 and 24 months after starting any of these meds, new symptoms would set in--insomnia, sexual behaviour changes, loss or increase of appetite.  No doubt a manifestation of the body reacting to longterm tweaks in brain chemistry.

"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!


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