Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
August 29, 2014, 05:01:26 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 636521
  • Total Topics: 48312
  • Online Today: 168
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 125
Total: 128

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: wanting to give up sustiva  (Read 9464 times)

0 Members and 1 Guest are viewing this topic.

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
wanting to give up sustiva
« on: June 19, 2006, 10:08:06 PM »
I'm currently on sustiva/truvada as my combo.   

I am experiencing heavy depression, nightmares and extreme fatigue.   I don't want to continue this combo.

I want to replace the sustiva with something else, but my concerns are to keep it once a day and hopefully, minimal side effects.

I started lexapro a few months ago and it works wonders for my attitude, it just leaves me exhausted and combined with the sustiva i think is fucking me up.

I don't want to quit the lexapro because it is such a dramatic good change, but i'm also scared to quit sustiva.   But the nightmares and dreams i've been having are just freaky and not in a good way.

I want something more tolerable.

I've always been a bit skitzy so being able to tolerate sustiva for a year plus has been a good thing, but I don't think i can do it anymore.

Any suggestions?

I'm severly not a morning person.   I can barely get up for work and on weekends will sleep in for hours and hours.. possibly missing doses if i have to take it in the morning.


Offline The Canuck

  • Member
  • Posts: 628
Re: wanting to give up sustiva
« Reply #1 on: June 19, 2006, 10:18:01 PM »
Dingoboi,

newt will possibly be the best for answering this. I think the logical choice would be to replace Sustiva by Viramune but it's twice a day which isn't something you are wishing for.

I have Viramune in my regimen and never had any side effects . I wasn't too crazy about taking Sustiva when I started my regimen and Viramune was my other option in this class.

Regards,

The Canuck
« Last Edit: June 20, 2006, 09:56:13 AM by The Canuck »

Offline jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: wanting to give up sustiva
« Reply #2 on: June 19, 2006, 10:31:57 PM »
i had same problems on sustiva. I did it for almost a year and made me depressed, insane,very tired,and real scary vertigo. I never had the dreams.
Just tell your doc and work something out.
Lexapro should be in the water supply.

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: wanting to give up sustiva
« Reply #3 on: June 19, 2006, 10:45:42 PM »
Sustiva scares me. I have a history of depression (first episode at the age of 10), so I would almost certainly not take it come meds time. Here's a link to the findings of a recent study on Sustiva and depression:

http://www.aidsmap.com/en/news/0C94F166-C643-4B4C-AF15-868397DC55B9.asp

Probably not telling you anything you don't already know but: You could switch to Viramune (nevirapine), sticking to the NNRTIs. Alternately, you could take a PI with Truvada, either Kaletra or boosted Reyataz. If I had to start meds tomorrow, I would probably opt for the boosted (with norvir) Reyataz with Truvada, to minimize psychological and fat-redistribution side effects.

You mentioned feeling extremely tired. Have you had your testosterone and thyroid levels checked? Compared to the general population, HIV-positive men are disproportionately likely to be hypogonadal, have low testosterone levels. With the new gels, easy to supplement.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: wanting to give up sustiva
« Reply #4 on: June 19, 2006, 10:48:51 PM »
Just curious: is Lexapro causing any sexual dysfunction side effects? It's supposed to be the SSRI with the fewest sexual sided effects. Nevertheless, its older sibling, Celexa, did nothing for my mood and made reaching orgasm more a chore rather than a pleasure.
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: wanting to give up sustiva
« Reply #5 on: June 20, 2006, 02:01:29 AM »
i think i could manage a noon/midnight schedule for the drugs on a twice a day.

lexapro initially gave me mild side effects in erectile and orgasmic function... but it quickly subsided.. not i shoot like a racehorse :)

i mostly can handle the sustiva... but i think combined with the lexapro, it's becoming overwhelming.... i don't clean my apartment.... i sleep all the time...

sustiva gave me issues like dreams before... but it is so much more intensified now with lexapro.. that i'm not sleeping well... i have nightmares every night.

I think it best to switch the sustiva rather than switch the lexapro.   they both work well... but just not together for me i think.  

I need the lexapro more than the sustiva.... it really calms me and lets me function on a normal basis at work without getting excessively angry like i used to.

I don't know if i need the lexapro BECAUSE of the sustiva though.   But i know i'm psychiatrically partial to the bad side effects of sustiva already.   i don't want to go thru this anymore if I have another regimen to tolerate... even if it's twice a day.

i have a docs appt on the 26th... and i'll discuss it with him.... i am happy with what sustiva does for my digits, but if i can  have a higher quality of life on a different drug, i'm going to opt for that.. even with twice a day dosing.  


i think i'm in the beginnings of sustiva madness that occurs in some people.   I don't want it to go further.

it's the mad cow disease of hiv people LOL....  

and i want these nightmares to stop... that's probably why i'm so tired... becuase i can't sleep well at all.

but it also all began MOSTLY when i started lexapro.. at least the effects were much more pronounced, but lexapro fixes me emotionally.

the effects were always there tho... just not as harsh as now.... i never liked them but thought i had to 'suck it up' and do what i needed to do.

if i can feel like i do still taking lexapro and not have the sustiva crazies.. i want to switch.


i have been tested for testosterone levels..... don't know results yet... if normal.. i suspect i'l get thyroid tested for whatever they test for there.

i'm just tired of feeling tired.   All i do anymore is literally go to work (when i can manage to get up) and come home and type a bit and fall asleep.

I don't have any sort of semblance of the life i used to where i went  out and had fun.

it sucks.









« Last Edit: June 21, 2006, 07:05:01 PM by DingoBoi »

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: wanting to give up sustiva
« Reply #6 on: June 20, 2006, 03:16:48 AM »
Viramune has a long enough half-life  (25-30 hrs) to allow flexible timing.  Some docs even use it once a day but this is, strictly speaking, in need of further study.

Of the PIs, Reyataz is a true 1 x day PI, and can be used boosted or unboosted (provided you ain't on Viread/Truvada), Kaletra is a possible 1 x day and so is Lexiva (when boosted).

Switch, be happy, be calm. It's not like this is a rushed decision.

- matt
"The object is to be a well patient, not a good patient"

Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: wanting to give up sustiva
« Reply #7 on: June 20, 2006, 07:27:34 AM »
Hello Bailey,

 I can only share with you my experiences with Viramune, and tell you that I am very pleased with it. Never had any of the dreams, or mood swings. And I am not having any issues with depression.

If that is your choice, there is a 14 day break-in period, with the Viramune.(one pill a day) after that one pill every 12 hours. Your doctor will most likely have  liver fuction tests, within the first few weeks of starting viramune, and for myself,it's every 3 months there-after.


Let us know----------Ray



Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Markmt

  • Member
  • Posts: 175
Re: wanting to give up sustiva
« Reply #8 on: June 20, 2006, 07:47:12 AM »
Hi Bailey,

I had a history of depression prior to being diagnosed with HIV 2 years 4 months ago. My doctor put me on Viramune for this reason (instead of Sustiva).( Luckily) I have been depression free all the while since I have been on meds.

take care,

mark
"Live to love and love to live."

Leo Buscaglia

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: wanting to give up sustiva
« Reply #9 on: June 20, 2006, 08:30:12 AM »
I had a terrible time with Sustiva. It's a GREAT med for those who avoid the side effects, or who can manage them. For some of us, it's not about gritting our teeth and baring it, its about risking psychotic episodes during which we are a real danger to ourselves.

Bailey, I will be honest. From what you have posted, i NEVER thought Sustiva was a good fit.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: wanting to give up sustiva
« Reply #10 on: June 20, 2006, 10:03:16 AM »
Jus' remember if it's to be Viramune that there's an increased risk of liver toxicity in men with CD4 counts 400+ (6.3% versus 1.2% for men with CD4 counts less than 400).

- matt
"The object is to be a well patient, not a good patient"

Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: wanting to give up sustiva
« Reply #11 on: June 20, 2006, 08:49:09 PM »

Thanks for adding that Matt... From the aidsmeds drug info oon Viramune

"As for men, liver problems are more likely to occur if their T-cell count is greater than 400 at the time of starting treatment. HIV-positive people should work with their doctors very carefully if they have T-cell counts above these levels and are planning on starting therapy for the first time with a drug regimen that contains Viramune.



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline doyourowndamndishes

  • Member
  • Posts: 85
Re: wanting to give up sustiva
« Reply #12 on: June 21, 2006, 12:36:30 PM »
Hey Dingo,

Instead of doing the Sustiva route I did the Kaletra/Trizivir route.  It's twice a day but few pills.  Not too many people seem to prefer the PIs but I've been ok on them.  Now I'm on Atazanavir + Kivexa (Epizcom).  It too is 2x/day: 2 small tablets am and pm.  It's an option if you are wanting to switch drug classes.  Otherwise nevirapine would be the most logical switch if you drop Sustiva and want to keep the PIs for a rainy day. 

Let us know what you decide.

Cheers,

Alan
"All that we are is theresult of what we have thought." -Buddha

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: wanting to give up sustiva
« Reply #13 on: June 27, 2006, 12:53:34 PM »
first, i want to thank everyone for their input.  It was really helpful.

I had my doctor's appointment yesterday and we dropped the sustiva for viramune.   My doctor okayed (actually instructed me) to take them both at the same time as well (after the break in period).   He actually quoted verbatim what many of you had mentioned about viramune.   My doctor did say that viramune would not be the first choice because of my high cd4 of 1500, but was preferable over changing the entire regimen, so I can keep my truvada.   I do have labs scheduled in a month for liver tests.  Thankfully only one tube of blood instead of the usual 11)

My last dose of sustiva was sunday night and I already feel much better.   (i was able to get the new Rx from Bio-scrip™ formerly Stat-script)

Already, this morning I feel like a severe fog has been lifted.   For the first time in months, I feel like I've gotten a good nights sleep.   I know the sustiva is still filtering out of my system, but I feel 100% better than I did.  I also did not have the nightmares plaguing me for the last few months. 

The only mild side effect is a bit of itchy on my arms.   Now that I can actually care, I can get my place back in order.   I did do a blog last night.   I was sober too, but it looks completely fucked up I think.   I was just spaced out still on the sustiva.   

I'm glad that junk is gone.   It worked for me well for almost a year, but the last 4 months, I have felt like i'm in a worsening nightmare seperating me from reality.  Today, I feel so much 'clearer' in my thinking and even perceptions of the world and myself.   I didn't realize how fucked up I was becoming other than knowing something wasn't right, but lacking the clarity that I can see now looking back...and being off sustiva.

Offline doyourowndamndishes

  • Member
  • Posts: 85
Re: wanting to give up sustiva
« Reply #14 on: June 27, 2006, 01:41:52 PM »
Hey Dingo!

Congrats on the change.  This sounds so much better for you!  One thing you may want to look into is co-enzyme Q-10.  Unfortunatley my brain and memory is like a seive right now but my pharmacist had mentioned that with certin meds which are hard on the liver, Q-10 helps to process this a bit more smoothly and helps to reduce liver toxicity.  Now which drug ... no bloody buggery clue!  Hopefully someone on here can help me out or correct me if I'm mixing up info.  If not, it's really easy for me to ask him (I walk by the shop both to and from work) and can relay any info he has for you.

Cheers to a FAB night's rest sans nightmares!

Alan
"All that we are is theresult of what we have thought." -Buddha

Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: wanting to give up sustiva
« Reply #15 on: June 27, 2006, 07:49:31 PM »
Hey Bailey,



  My doctor okayed (actually instructed me) to take them both at the same time as well (after the break in period).   


When I started on Viramune, I was taking the doses 12 hours apart. later into therapy, My doctor also told me to go ahead and take both doses of viramune together. I did that for a while. When I started feeling a little "Toxic", I went back to the 12 hour doses, but it didn't change anything.


I  have had good success with Viramune, hope you do to. Make sure to drink plenty of water, and, there are no food restrictions...



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Joel90069

  • Member
  • Posts: 28
  • "Another turning point a fork stuck in the road."
Re: wanting to give up sustiva
« Reply #16 on: June 29, 2006, 07:31:20 PM »
Dingboi, thanks for your posts. It gave me the imputus to switch to Viramune, from Sustiva, also. Reading your descriptions made me feel like I wasn't alone, crazy or being a whimp! It's only been 24 hours and I don't feel any different other then perhaps a little more confidence.

Offline Duude

  • Member
  • Posts: 30
  • VANS Warped Tour Kicked ASS
Re: wanting to give up sustiva
« Reply #17 on: June 30, 2006, 07:42:28 PM »
Hey Bailey,
Glad the switch is goin good for you and good to see another blog.  Um were you in the Death Star filming that?
Duude

Offline Christine

  • Member
  • Posts: 1,069
Re: wanting to give up sustiva
« Reply #18 on: July 01, 2006, 12:26:14 PM »
Hello,
If I were in your place, I would try to switch the lexapro with another anti-depressant, and if the severe fatigue persists, then try switching the sustiva. I have suffered from depression since before my + diagnosis, and sleep problems and fatigue are two symptoms of my depression. So, I would look at the depression/anxiety first, see if that is what is causing the problems, then look at the Sustiva.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: wanting to give up sustiva
« Reply #19 on: July 01, 2006, 02:49:51 PM »
i already switched and dropped the sustiva christine.

I was showing side effects long before i started the lexapro.

it's been five days and i have had virtually no side effects.... the mental issues are dramatically reduced, i sleep well, no diarreah.    I feel great and for the first time in a long time.

and for the first time in two months, I made it through a whole week at work without calling in sick due to exhaustion.   For me, it truly was the sustiva (though it's negative effects were probably enhanced by starting lexapro).

I'm really beginning to question sustiva/truvada as a first line regimen, especially when sustiva can have so many side effects that aren't seen in other drugs as much.. particularly the mental ones.


Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: wanting to give up sustiva
« Reply #20 on: July 01, 2006, 03:07:28 PM »
Bailey,

 Thanks for keeping us updated. I've been thinking about you, and wishing you the best on the viramune. And it sound as though things are going much better for you. Thats GREAT !


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline wellington

  • Member
  • Posts: 508
  • Don't sweat the little things.
Re: wanting to give up sustiva
« Reply #21 on: July 05, 2006, 05:20:57 PM »
I've always had an active imagination and the first few nights taking sustiva generated some rather vivid productions. While I wasn't alarmed at first, the more I take it, the more I feel I should be watching carefully that my mental health isn't being adversely affected. I seem more prone to react to events these days and I'm becoming increasinly concerned that it's related not to my training, as an actor, to access and display emotions but to this previously wonderful medication.

Thanks for raising the cautionary flag!

Offline Joel90069

  • Member
  • Posts: 28
  • "Another turning point a fork stuck in the road."
Re: wanting to give up sustiva
« Reply #22 on: July 05, 2006, 07:13:45 PM »
I've been off Sustiva for a week now. I've been able to sleep through the night without an Ambien CR. My concentration nd cognitive powers are back to normal. I can actually go to work, read, understand and think logically! Obviously, it's a terrific drug if you can handle it. It just wasn't for me either.

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: wanting to give up sustiva
« Reply #23 on: July 13, 2006, 06:36:04 PM »
Hey Dingo,
I started on Sustiva and moved to Viramune because of the Sustiva side effects.  I was taking Viramune once daily (2 pills same time) and it worked really well for me.  I went from CD4 of 183 to almost 800 in 9 months.  My viral load went from 750K to 83 (Super Sensitive VL test).  I had my dr pull me off all meds this past Jan as I had tested HIV neg 2 times in December.  I recently started back on meds since my VL shot back up to 750K and CD4 dropped from around 800 to 153.  This time I started back on Sustiva and Truvada again my original meds back in Feb 2005.  So far I have done well.  The dreams are still vivid but the side effects seem so much less than when I orginally took the regimine.  Check with your Dr on the Viramune as it is kissing cousins to Sustiva and might give you the relef you are looking for.
Good Luck!
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline Shawn Decker

  • Member
  • Posts: 78
  • "Gee, Shawn!"
    • MY PET VIRUS
Re: wanting to give up sustiva
« Reply #24 on: July 14, 2006, 04:09:13 AM »
Hey Bailey,

So glad to hear that you're doing well.  I was on Sustiva for two years before I realized I was going loopy.  Then did 7/7 for a couple, but the drug can creep up on you even then.  It was my second combo, and I couldn't imagine being on that weeks or months after being diagnosed with HIV.  I think, in most cases, docs are too quick to prescribe these combos, and that can result in missing doses etc.

Keep kickin' ass at work, glad to hear you're on the upswing.
Shawn

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: wanting to give up sustiva
« Reply #25 on: July 14, 2006, 08:34:37 AM »
Hey AppleBoy

There seems to be something funny (strange, not ha-ha) going on, unless I've completely misunderstood you. 1. You tested positive sometime before Feb 2005 (presumably, using Elisa screening and Western Blot confirmatory antibody testing). 2. Meds started Feb 2005, great results. 3. Tested negative in Dec 2005. 4. Treatment interruption Jan 2006. 5. Meds re-started recently. All of which makes perfect sense except number 3. Do you mean that your VL had dropped below 50 ("undetectable") or that for some reason you took antibody tests again and tested negative on those. I'm assuming it's the undetectable thing; the neg on antibody tests would seem to be impossible except in the very early (and possibly very late, though I'm not sure about this) stages of infection.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: wanting to give up sustiva
« Reply #26 on: July 14, 2006, 05:51:06 PM »
I am going to post my story here shortly after I go through medical records.  I don't want to hijack Dingo's thread.
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: wanting to give up sustiva
« Reply #27 on: July 14, 2006, 05:58:00 PM »
oh no, if it's relevant, HIJACK AWAY here.   I've already switched to viramune and i love it with virtually no side effects (at least none worth mentioning).

So, it's not hijacking now that my initial question is answered.  Please feel free to continue any discussion in this thread.  Much better than 20 threads all about the same thing.

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: wanting to give up sustiva
« Reply #28 on: July 14, 2006, 06:42:01 PM »
Dingo,
Glad the viramune is working out for ya!  Good choice.  I am trying Sustiva again and so far so good.  I did post an answer to Jay's questions in the living with HIV forum I warn it is quite long.
http://forums.poz.com/index.php?topic=1853.0
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline biguyinpa

  • member
  • Posts: 1
Re: wanting to give up sustiva
« Reply #29 on: July 15, 2006, 02:02:35 PM »
Dingo,

Glad to hear the new drugs are working for you ;D. I must be one of the lucky ones as I have been on sustiva for about 5 or 6 years and the only side effects were gone in about 3 days.

Be careful switching drugs 1 at a time. I was diagnosed in 1992 and they were switching drugs 1 at a time to find a combo that worked. Unfortunately that lead to a multi strain resistance in later years that have left me very few options if my present regiment of sustiva/invirase/norvir ever quits working.If I could give up 1 drug it would be the norvir as it has my cholesterol way too high and having by pass surgery 2 years ago that's not good. My last resistance test showed I can not take any other of the drugs because of resistance mutations I now have. Fusion or TMC 114 are options. I guess I can't really yell too much as back then they didn't have a clue as to how to control it. I was diag in 92 and infection traced back to 1983 durning an operation, got some bad blood. I am still kicking after 23 years so never give up hope. Last blood work..VL <50 and CD4 was 808.

As long as you don't let this virus rule your life but you rule it then you will survive. Living with the drugs is just part of life now. Good luck in the many years to come and I wish you all well.
« Last Edit: July 15, 2006, 02:27:19 PM by biguyinpa »

Offline alberche

  • Member
  • Posts: 212
  • a distancia del mundo incierto, saludo mi suerte
Re: wanting to give up sustiva
« Reply #30 on: August 27, 2006, 04:03:37 PM »
Hiya all! Greetings from Madrid, Spain,

I started Truvada + Sustiva end of june this year, and one month later had to change Sustiva for Reyataz (Rito-boosted) due to Sustiva produced me a severe rash.

I was infected end of March, passed the acute infection symptoms in April, got tested PCR 256.000 copies begining of May, repeated tests begining of June, having results end of June: 65.000 copies 1.100 CD4.

My doctor proposed me to start with meds, so I accepted. I used to take Sustiva and Truvada before going to bed, on an empty stomach. The fisrt days were very strange, I hade bizarre dreams, vertigo and was sleepy all day long. Nevertheless, I went to work every dat and was able to drive my car.

By the second week of treatment, all these symthoms were away, and I felt good, but I started to have a rash that increased day by day, and also pain in the joints of my kneels, my feet, my arms...

Doctor deciced to change meds, so by end of July I started Reyataz (Rito-boosted) with Truvada.

I feel much better, sleep well, no pains, no rash, only a "heavy" stomach, flatulence and very funny changes when going to the W.C.: sometimes this is very liquid, sometimes it's ok, sometimes it's just small balls going out very fastly, sometimes it's a very big thing... I eat very regularly and a lot of fruits, vegetables, fish, cereals, some wine, olive oil... just the things we use to eat here. At the moment I can cope with it, so it's O.K.

I have not yet got yellow in the eyes or skin. I will have tests in a few weeks and hope this meds are doing well.

I think we have more possibilities now to change and try to avoid side effects. This is important to compliance, it is hard to be compliant with meds that make you feel so bad. I hope to be as long as I can with Truvada plus Reyataz, but now I have no more fear about the possibility of a change in meds.

Regards!!!!
love is blindness...  a wonderful song!

Offline brentxxoo

  • Member
  • Posts: 9
Re: wanting to give up sustiva
« Reply #31 on: August 30, 2006, 08:13:25 PM »
My wife had very similar problems.  About 6 weeks ago she got rid of the Sustiva for Viramune and has been sleeping like a baby ever since.  No more depression, no more general irritation and fatigue.

Get rid of it.  She and I are wondering why we put up with it for so long (almost a year) before realizing it was seriously causing problems.


Offline newone

  • Member
  • Posts: 57
Re: wanting to give up sustiva
« Reply #32 on: September 15, 2006, 06:52:48 AM »
That s it. I am going to get rid of Sustiva as soon as my present supply of meds is over.
Not sleeping well, always tired, irritable, depressed, lack of motivation, lethargic.....need a change.
Sustiva, Truvada
cd 212 Mar 04
cd 265 May 04 (started meds)
cd 389 Jun  04
cd 504 Oct  04
cd 449 Dec 04
cd 518 Apr 05
cd 449 Nov 05
cd 514 Jan 06
cd 618 Apr 06
cd 665 Jul 06
cd 617 Nov 06
cd 604 Apr 07
cd 956 Aug 07
cd 690 Nov 07 (26%)
cd 771 Apr 08 24%
cd 737 Sep 08 27% Atripla
cd 648 Jan  09 27%
cd 627 Apr 09 25%
cd 607 Oct 09 25%
cd 676 Jan 10 25%
cd 811 Jun 10 25%
cd 922 Nov 10 27%
cd 860 Apr 11 28%
cd 767 Jul 11 24%
cd 843 Oct 11 27%
cd 1350 Jan 12 27%
cd 756   Jun 12 27%
cd 1151 Oct 12 35%
cd 965  Jan 13 36%
cd 875 May 13 32% Eviplera
cd 845 Jul 13  30% und.

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: wanting to give up sustiva
« Reply #33 on: September 15, 2006, 08:30:36 PM »
don't wait if you can... change now.   If you've decided to switch, there's not much reason in waiting just because you have leftover meds.

Other forum members will be happy to take them off your hands :)

Offline newone

  • Member
  • Posts: 57
Re: wanting to give up sustiva
« Reply #34 on: September 18, 2006, 07:38:43 AM »
I still not sure what I want to do (probably because of my confused state due to Sustiva)...I like the once a day combo I am taking now but I hate the psychological problems associated with taking Sustiva...then I started wondering if my mild depression, lethargy,fatigue etc etc is really due to Sustiva or is it "just" me??!
Truvada/Viramune sound like a better alternative but I really would hate to take pills twice a day and if it was so it would complicate my life further....
I have never been sick (except for the odd cold) and my combo has worked ok so far in increasing my cd count etc.....if I decide to switch to Viramune and for whatever reason it didnt work, could I go back to the devil I know?? (sustiva) or perhaps stick to my present combo and start taking anti depressants??
Confused and tired as usual!!
Gym?? may be later....may be tomorrow???....ok...I ll go back to bed!!....and another day has gone/.
Sustiva, Truvada
cd 212 Mar 04
cd 265 May 04 (started meds)
cd 389 Jun  04
cd 504 Oct  04
cd 449 Dec 04
cd 518 Apr 05
cd 449 Nov 05
cd 514 Jan 06
cd 618 Apr 06
cd 665 Jul 06
cd 617 Nov 06
cd 604 Apr 07
cd 956 Aug 07
cd 690 Nov 07 (26%)
cd 771 Apr 08 24%
cd 737 Sep 08 27% Atripla
cd 648 Jan  09 27%
cd 627 Apr 09 25%
cd 607 Oct 09 25%
cd 676 Jan 10 25%
cd 811 Jun 10 25%
cd 922 Nov 10 27%
cd 860 Apr 11 28%
cd 767 Jul 11 24%
cd 843 Oct 11 27%
cd 1350 Jan 12 27%
cd 756   Jun 12 27%
cd 1151 Oct 12 35%
cd 965  Jan 13 36%
cd 875 May 13 32% Eviplera
cd 845 Jul 13  30% und.

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: wanting to give up sustiva
« Reply #35 on: September 18, 2006, 07:43:51 PM »
If you want a 1 x day combo Reyataz (atazanavir) is a 1 x day PI that don;t seem to affect lipids etc.  There are others, but Reyataz is the one that uses the least amount of Norvir booster. Depends how you feel about PIs v a clear head I guess.

- matt
"The object is to be a well patient, not a good patient"

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: wanting to give up sustiva
« Reply #36 on: September 19, 2006, 06:25:03 PM »
the viramune/truvada combo I am on I take just once a day.   My doctor okayed once a day instead of the normal 2x/day so I'm still on the same schedule as sustiva/truvada.... just not as crazy.

Offline cthonias

  • Member
  • Posts: 6
Re: wanting to give up sustiva
« Reply #37 on: October 17, 2006, 02:23:01 PM »
I, too, am interested in trying to switch off of Sustiva. I also have the mild depression, lack of motivation, anger side affects.

I know someone else already asked this, but is it possible to switch back to Sustiva if I don't like the other drug, or will the virus become immune to Sustiva once I switch?

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: wanting to give up sustiva
« Reply #38 on: October 17, 2006, 04:45:06 PM »
Provided your viral load is undetectable and you make a straight switch with no break in treatment, it will most likely be possiblefor you to return to Sustiva.

- matt
"The object is to be a well patient, not a good patient"

Offline alberche

  • Member
  • Posts: 212
  • a distancia del mundo incierto, saludo mi suerte
Re: wanting to give up sustiva
« Reply #39 on: October 28, 2006, 03:08:22 PM »
Hiya all!

Well, I also started with Sustiva, but had to change it due to a severe rash. I was taking it with Truvada during one month, since then (end of July 2006) my doctor changed Sustiva per Atazanavir + Ritonavir. Viramune was not an alternative at the moment due to the rash events are even more likely to occur than with Sustiva...

After the  changes, side effects went away in a couple of weeks. When I started with Truvada + Sustiva I had 65.000 VL and 1180 CD4 count. Now I have just received results from my last labs, after 3 months of Truvada+Reyataz+Ritonavir: 1280 CD4 and a VL of <50. I am very happy.

I have not had any remarcable side effects from this combo. Blood fats, cholesterol and the rest of parameters are completely normal. I feel great, have recovered appetite, stopped weight loss and I am very used to take these 4 pills, at once, with dinner.

Sustiva is a good medicine, powerful and easy to take, and works very well for those who have no severe side effects. But it is more important to be able to get used to meds and have some quality of life, crucial to do a good compliance, so there are many other alternatives to make a combo that also will work very well, specially when starting treatments for the first time.

In addition, my doctor has told me that, in a future, if necessary, Sustiva could be again an alternative for me. It is possible that then side effects are less severe due to changes in my methabolism or that a lower dose in a combo with other drugs will permit to take it again avoiding rash or allergic reactions.

Now I am happy and a bit more relaxed, I was scared about changing of meds so earlier in my first treatment... but everything seems to be rolling ok.

Hughs!

:-)
love is blindness...  a wonderful song!

Offline chapin

  • Member
  • Posts: 6
Re: wanting to give up sustiva
« Reply #40 on: November 04, 2006, 02:52:28 PM »
CHANGE!!!!!!! Please, there is no reason to feel as bad as Sustiva makes you feel.  I was on it for 2 months and I literally wanted to throw myself out of my balcony!!!! I also used to put my head in the freezer because of the hot flashes I used to have, wasn´t able to eat while on it, and had THE WORSE MONTHS OF MY LIFE!!!!!!!!

Now I´m on Viracept/Truvada, and although I do have some side effects, I´ve managed and am able to live a normal life.

Good Luck!

Offline antibody

  • Member
  • Posts: 525
  • "every man thinks his burden is the heaviest"
Re: wanting to give up sustiva
« Reply #41 on: November 16, 2006, 02:29:29 PM »
i have been on Atripla for about 5 months and the Sustiva hasn't let up, it has got better but is always there. feeling hungover.  i been undetectable from first labs and my tcells are high 700's so i worry about viramune.
 the last thing i wanna do is switch and get diarrhea or heartburn. it's true sustiva is depressing but I'm sure crapping all day can't be much fun either.
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline suzieque

  • Member
  • Posts: 61
Re: wanting to give up sustiva
« Reply #42 on: November 17, 2006, 03:10:11 AM »
 HI,
   I also had a terrible reaction to Sustiva, felt like I was living in a permanant nightmare! Changed to nevirapine. No problems there!
I know that it is off topic but I am curious...some of you seem to have very high CD4 counts, does your doctor ever suggest that you have a treatment interruption? I just wondered about the different attitudes to this, I live in England and the docs seem pretty open to this. Thanks. :)

Offline alberche

  • Member
  • Posts: 212
  • a distancia del mundo incierto, saludo mi suerte
Re: wanting to give up sustiva
« Reply #43 on: November 19, 2006, 02:28:26 PM »
Hiya Suzieque,

For me that will be a subjet to deal with my doctor by mid of next year.

Opinions are very different, even contradictory as per regards of this. No studies have been done, so everything is based on supossitions, considerations or opinions... for me, if there's no scientific evidence behind, doctor's oppinion is as valable as mine is.

I am a bit worried.. would not like to leave meds and see how my CD4 go down and my VL goes up month by month to jump again in meds one or two years after...

In my case,as I am being treated since acute phase of infection, things are not clear... I was told about the possibility I could not quite meds anymore... and also about trying an interruption and then wait and see...

I think I'd better keep on meds as well as I do not have any remarcable side effects.

I think that if some side effect or methabolic or hepatic problem appears, since I've been on meds from the beginning and have a very high CD4 count, I could better cope with a treatment interruption in that case, in order to stop or diminish undesirable or threatening effects of drugs.

But I don't see any sense in a treatment interruption only to "wait and see"... unless we think about economics...

Hughs from Madrid, Spain (no too sunny these days ;-) )
love is blindness...  a wonderful song!

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.