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Author Topic: Thinking of switching from Sustiva to Viramune  (Read 20422 times)

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Offline bradmeistr

  • Member
  • Posts: 36
Thinking of switching from Sustiva to Viramune
« on: May 27, 2007, 04:09:18 PM »
I have been on Susyiva for the last year and half and still have some bothersome side effects from Sustiva.  My biggest issue is the fogginess and concentration issues.  I know that taking sustiva on an empty stomach is very important for me and that is not always possible  Even when I do make sure I have 4 hours between eating and taking sustiva before bed,  fogginess is only marginally better.  I really would like to be able to stay on Sustiva, but have pretty much made up my mind to to give Viamune a chance as I think it might be a better drug given my work and eating schedule.  So here is my questions about switching and viramune:

1. How many of you who take Viramune still experience a foggy feeling? or have problems concentrating?
2. What times are best to take viramune? I take my truvada right before bed.
3. About an hour after I take sustiva my brain feels very numb (I hate that feeling), I can only now imagine what alzheimers might feel like - does Viramune have any of these same side effects shorly after taking it like sustiva?  Especially since it is in the same drug class.
4. Is taking viramune in the morning or midday problematic for anyone?
5, My liver seems healthy and I know I need watch for a rash with Viramune, but are there any other side effects that might not be mentioned in all the drug info on the Poz.com website that might not be mentioned?


I am very interested in hearing what people have to say about viramune who are taking viramune or who have switched.

Brad (feeling crazy in SF)
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline antibody

  • Member
  • Posts: 525
  • "every man thinks his burden is the heaviest"
Re: Thinking of switching from Sustiva to Viramune
« Reply #1 on: May 30, 2007, 10:05:44 PM »
i can't answer about the Viramune but i will tell you i had the problems with Sustiva. so i switched now i feel no effects whatsoever. i always knew if i took my meds because i would always feel like i got hit by a bus, now i have to check and double check my pill box to make sure i had my daily dose. maybe ask your doctor about Reyataz boosted with Norvir and the Truvada.

Ps i'm wishing they make this into a all in one pill too someday.
« Last Edit: May 30, 2007, 10:07:45 PM by antibody »
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 JPinLA

  • Member
  • Posts: 148
  • Cheers!
Re: Thinking of switching from Sustiva to Viramune
« Reply #2 on: May 31, 2007, 10:37:01 AM »
Hey Brad -

I take Truvada and Vriamune (3 months into 4 now..) and I have had no side effects with either drug.  No fogginess..nothing.  Seems to be goign well.  My liver/kidneys etc are fine.  So far so good. 

I take the Viramine 2X daily once in the evening with dinner (and my Truvada) and the other in the morning when I wake up.

People react differently so this is my experience - but I for one support this combo!

Good luck to you and keep us updated!

JP (who is enjoying bay area fog right here in So Cal).
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #3 on: June 01, 2007, 02:06:41 AM »
JP - thanks for the info.  I go see my doc on Monday and hope to switch to viramune next week.  I'll keep you posted.

Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #4 on: June 05, 2007, 02:28:59 AM »
So I start my Viramune Wednesday, so no more Sustiva after Tuesday night.  I will keep you all poated as to how it goes.

Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline Tempeboy

  • Member
  • Posts: 359
  • Like St Francis of Assisi I am wedded to Poverty
Re: Thinking of switching from Sustiva to Viramune
« Reply #5 on: June 05, 2007, 03:31:51 AM »
Hello,

My rant - efavirenz sucks, is a bad first line medication and people don't get properly informed about these side effects.  I have seen too many suffer with it.

Efavirenz is heavily associated with sedation, "haziness", or a tripped out feeling - and associated depression.  Viramune is not.  Viramune can be taken once a day.  Your haze will gradually fade - as efavirenz lasts for a while in the body after your last dose.

You should start to feel better very soon.

Well done.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline JPinLA

  • Member
  • Posts: 148
  • Cheers!
Re: Thinking of switching from Sustiva to Viramune
« Reply #6 on: June 05, 2007, 10:36:55 AM »
Brad-  that's great and good luck.  I agree with Tempeboy, I still don't understand why Viramune is not first line therapy instead of Sustiva.  Luckily, my Dr. agreed and I've been on that since the beginning (OK, it's been about 4 months...).

Good luck and keep us posted!

JP
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #7 on: June 07, 2007, 02:20:00 AM »
Just started on the viramune this morning.  i am so excited.  So far so good, no bizarre reaction yet.  I will keep my fingers crossed.  I guess a rash could happen at any time.  I'll get my liver enzymes checked in the next two weeks. 
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline J.R.E.

  • Member
  • Posts: 7,277
  • Joined Dec-2003 Living positive, since 1985.
Re: Thinking of switching from Sustiva to Viramune
« Reply #8 on: June 07, 2007, 07:57:12 AM »
Just started on the viramune this morning.  i am so excited.  So far so good, no bizarre reaction yet.  I will keep my fingers crossed.  I guess a rash could happen at any time.  I'll get my liver enzymes checked in the next two weeks. 


Wishing you the best with the Viramune. I've been very pleased with it, since October of 03. You'll do fine !!



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


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 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Thinking of switching from Sustiva to Viramune
« Reply #9 on: June 07, 2007, 08:24:45 AM »
Brad,
I hope Viramune works out for you.  I took it for over two years before I went off meds, first with Viread, then with Truvada; and I never had any adverse effects, outside of a little irritation of the liver at first.  The twice-daily dosing was not a problem, as I had been accustomed to BID (breakfast and after dinner) with other meds.  A number of friends and acquaintance have switched from Sustiva to Viramune over the last 3 years, particularly since mid-06, without experiencing rash or resistance;  and I would think that you'll sail through the change.

Cheers,
David

P.S.  Did you watch hours of porn before your last night on Sustiva, for old times sake?  Don't be surprised if the dream effects linger for up to a week after the change..
"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!

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #10 on: June 08, 2007, 03:27:18 AM »
Did not get a chance to watch porn the last night.  My dreams with Sustiva were just vivid not too strange, thankfully.  Second day on Viramune and so far no reaction.  I did feel somewhat light headed this morning ,not sure what that was - maybe just getting use to Viramune or Sustiva still in my system.  I'll keep you posted.

Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #11 on: June 11, 2007, 11:13:14 PM »
So far so good.  Been on Viramune for 6 days so far, and no rash - yippy.  The zombie feeling of the Sustiva is gone.  I am still experienceing some dizziness in the late mornings, but hoping this will go away soon.  Overall, I am very glad I have changed.  I'll get my liver function tested late next week - I'll keep you posted.  Who knows maybe I'll even get back to the gym soon.
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline J.R.E.

  • Member
  • Posts: 7,277
  • Joined Dec-2003 Living positive, since 1985.
Re: Thinking of switching from Sustiva to Viramune
« Reply #12 on: June 12, 2007, 08:22:12 AM »
So far so good.  Been on Viramune for 6 days so far, and no rash - yippy.  The zombie feeling of the Sustiva is gone.  I am still experienceing some dizziness in the late mornings, but hoping this will go away soon.  Overall, I am very glad I have changed.  I'll get my liver function tested late next week - I'll keep you posted.  Who knows maybe I'll even get back to the gym soon.


Glad to hear that things are going well for you !


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


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 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

Offline JPinLA

  • Member
  • Posts: 148
  • Cheers!
Re: Thinking of switching from Sustiva to Viramune
« Reply #13 on: June 12, 2007, 10:11:51 AM »
woohoo!  That's fantatstic!  Glad to hear all is going well.  Hmm, the gym, what is that again and where is it?
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Thinking of switching from Sustiva to Viramune
« Reply #14 on: June 12, 2007, 12:44:30 PM »
Glad to see it's going well for you, Brad!  Just realize that a window is closing on you for doing something inappropriate and blaming it on the drugs!  ;D

Best,
David
"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!

Offline ajm_ldn

  • Member
  • Posts: 69
Re: Thinking of switching from Sustiva to Viramune
« Reply #15 on: June 12, 2007, 01:02:31 PM »
Hey Brad,

As you may have noticed in a recent post, my liver enzymes are returning to normal after a course of antibiotics that I'm guessing my liver didn't like, not due to Viramune. 

I feel 100% better on this drug.  Sustiva was a nightmare for me.  I've never felt so tired, foggy and out of sorts in my whole life as I did on that stuff.  With Viramune, I'm back to feeling good again, with an undetectable VL, rising CD4s (in the last month they've gone from the low 200s to over 400) and, if my liver holds up, ZERO side effects. 

I hope the this drug ends up working out for you!   :)

Andrew

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #16 on: June 17, 2007, 02:16:55 AM »
So far so good, just got my liver test results, no problem.  My ALT test was only 18, that is the lowest it has ever been, to my knowledge.  I start my two pill dosing this next Wednesday so I will keep my fingers crossed until my next test which will be in two weeks. 

I still have one question.  I still have some very minor dizzy or fuzzy feeling for about 2 to 3 hours after I take my Viramune, but i also must say, not nearly as aweful as the Sustiva.  For people who started taking Vriamune, did any of you have initial minor side effects that eventually disappeared?  I am only 11 days into taking Viramune.

Thanks,
Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline JPinLA

  • Member
  • Posts: 148
  • Cheers!
Re: Thinking of switching from Sustiva to Viramune
« Reply #17 on: June 17, 2007, 10:17:43 AM »
Hey Brad - when I first started taking Viramune (about 3 months ago) I would feel kind of dizzy sometimes.  It went away though.  I am currently on the twice a day and have no noticeable side effects!

JP
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline ajm_ldn

  • Member
  • Posts: 69
Re: Thinking of switching from Sustiva to Viramune
« Reply #18 on: June 19, 2007, 10:14:17 AM »
During my first week on Viramune, after ditching Sustiva, I had some really intense scary / depressing dreams that seemed to linger on in my mind for the rest of the day.  That was never a problem with Sustiva.  The bad dreams completely went within a week, however.  Who knows, maybe nothing to do with meds - just me being a crazy f**K.  lol

My doctor told me it takes three weeks for all the Sustiva to leave your system, so maybe there's still a bit of that stuff kicking around inside you.  Sounds like you're doing well, so congrats.   :)

I feel sooooo much better now on Viramune!

Offline mrtallguy

  • Member
  • Posts: 199
Re: Thinking of switching from Sustiva to Viramune
« Reply #19 on: June 19, 2007, 07:03:42 PM »
Hey Brad,
Great to hear of your successful switch!  After a year on Sustiva I finally gave up on the crazy highs and lows... my doc kept me on the Truvada and switched me to Lexiva with a Norvir booster.  I take everything in the morning with no side effects.....I can't believe how "normal" I feel once again! 

It's great to read all the positive feedback about Viramune....always good to hold back an "ace" in your hand when playing this game!!  If a problem should develop down the road then I would switch to Viramune.

Be Well!

Craig

I AM DETERMINED TO SEE THINGS DIFFERENTLY!
--ACIM

Offline J.R.E.

  • Member
  • Posts: 7,277
  • Joined Dec-2003 Living positive, since 1985.
Re: Thinking of switching from Sustiva to Viramune
« Reply #20 on: June 20, 2007, 07:50:18 AM »
Hello Brad,

It looks as thought things are going well for you. Today is the day you begin your twice a day dosing.

Good luck-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


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 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #21 on: June 24, 2007, 09:09:52 PM »
Ray - all is well - thanks.

I have been off of Sustiva and on Viramune for 2.5 weeks now, and I must say it was the best decision I have made in the last 15 months.  I went to the gym on Saturday morning, and even before my workout I felt like a million dollars.  I thought "Brad is Back!!!!!"

I am so glad I switched.  No more fogginess, or cognitive issues.  I swear, on Sustiva, I thought I was going to go crazy with the fogginess and forgetfulness.  I can also say I am in a much better mood these days.  I actually feel like doing things, cleaning the house, washing the car, going to the gym; all that while I was on Sustiva barely got done.  I am not sure if the depression was caused by Sustiva or the side effects.  Not to preach, but if anyone is thinking of switching from Viramune to Sustiva, I would definitely talk to your doc.  By the way, my T cells were 440 when starting Viramune, and I guess people who have T cells over 400 have more of a chance of having a bad reaction to Viramune - thank goodness I seem to have been lucky.

Although I guess I am not out of the woods yet as some people have had bad reactions even two or three weeks into dosing, but so far the lliver is functioning perfectly and no rash.

As far as side effects with Viramune - I did notice some dizzy feeling about an hour after dosing, but nothing like Sustiva.  The dizziness seems to also be subsiding and only lasts for about an hour or two in duration.  I haven't even noticed any dizziness after my evening dosing, I take it at 6am and 6pm.  The dizziness is in the morning.

take care, and happy Pride from San Francisco,
Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline ajm_ldn

  • Member
  • Posts: 69
Re: Thinking of switching from Sustiva to Viramune
« Reply #22 on: June 25, 2007, 02:32:33 PM »
That's excellent news.  Really glad to hear Viramune is working out for you too!

Best,
Andrew

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #23 on: July 08, 2007, 01:10:18 AM »
Just had my second liver test (ALT) done and it came back at 15.  I am so stoked.  I have even been sipping a little wine here and there.  I am so happy I am tolerating the Viramune. 

For everyone out there on Sustiva, and "enduring" the side effects there are alternatives - talk to your doc.  I know Viramune sounds scarey - reading the warning label gave me the shakes - well almost - but nonetheless I gave it a try and am very happy I witched.  No more restless nights, no more food restrictions, no more depressed feelings, and no more foggy/dizzy can barely function mornings.

It is now back to the gym and taking care of myself.  ;D   :)   ::)

Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline Tempeboy

  • Member
  • Posts: 359
  • Like St Francis of Assisi I am wedded to Poverty
Re: Thinking of switching from Sustiva to Viramune
« Reply #24 on: July 08, 2007, 05:43:29 AM »
Well done Brad,

Spread the word.

take care.

x
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #25 on: July 08, 2007, 03:18:48 PM »
I will - thanks for being so supportive and helpful!!!
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline mrtallguy

  • Member
  • Posts: 199
Re: Thinking of switching from Sustiva to Viramune
« Reply #26 on: July 08, 2007, 04:35:52 PM »
Hey Brad,
Great to hear of your success with Viramune!  I was on Sustiva and switched to Lexiva but after 9 days on Lexiva I got a really bad rash so I stopped everything for now....my doc wanted me to switch to Viramune but my CD4 has been around 700 which is too high to start Viramune....I guess it gets in a fight with the liver with a high CD4 count. I think you are suppose to be at a CD4 of 400 or under. 

Has anyone let their CD4 count purposely drop so they could start on Viramune??? 
Has anyone started Viramune at a CD4 count up around 700?

I go back to the doc next Wednesday to discuss my next regimen.

Be Well....
Craig
I AM DETERMINED TO SEE THINGS DIFFERENTLY!
--ACIM

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #27 on: July 08, 2007, 08:01:56 PM »
My CD4 count was 440 when I started virmune - will see agian what is at the end of th month.  The precautions say not to take it with CD4 counts above 400 for a male.  I guess I lucked out.  We briefly did consider taking me off meds but my CD4 counts were so close to 400 we gave a shot.

Keep me posted on what you do.
Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline ajm_ldn

  • Member
  • Posts: 69
Re: Thinking of switching from Sustiva to Viramune
« Reply #28 on: July 09, 2007, 02:28:57 PM »
mrtallguy,

I think the 400 number is just a general guideline and I also remember reading somewhere that, more recently, a study indicated that there was not a significantly increased risk of a bad reaction if your CD4s are over 400.  But, I coulda read that wrong.

Anyway, I definitely would not let my CD4s decline to 400 to go on Viramune.  And considering that around 95% on Viramune do fine, why not try it and see how it goes?  With frequent monitoring (every two weeks) it's not like this stuff is gonna kill you overnight.  If your liver enzymes go up too much, and / or you get the rash, etc... you can always quit Viramune.  I seriously doubt you'd do yourself any permanent damage.  However, losing 300 CD4s to go on it WOULD be doing yourself possible permanent damage.

You'll never know how you'll do unless you try it!  I say give it a go!  I got the liver scare talk too, even with 250 CD4s, but I'm soooo glad I made the switch.  I'm doing just great on it.

Best,
AJM

Offline mrtallguy

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Re: Thinking of switching from Sustiva to Viramune
« Reply #29 on: July 10, 2007, 06:08:11 PM »
Hey AJM....
Thanks for the "pep rally"!! Actually I will probably save the Viramune "card" for a time when my CD4 is down below 400....there are a number of other options to look at in the meantime so we'll see what the doc says tomorrow.   

Craig
I AM DETERMINED TO SEE THINGS DIFFERENTLY!
--ACIM

Offline mrtallguy

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Re: Thinking of switching from Sustiva to Viramune
« Reply #30 on: July 11, 2007, 09:42:00 PM »
Well I went to see my doc today and he is going to keep me on the Truvada and start me on Reyataz with Norvir as a booster.   Anyone had any experience with Reyataz??  He said I could become jaundiced but not very likely.....I had Hep A 6 years ago so I hope my liver has fully recovered so that does not become an issue!

We'll see how it goes!

Be Well....

Craig
I AM DETERMINED TO SEE THINGS DIFFERENTLY!
--ACIM

Offline 2reckless

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Re: Thinking of switching from Sustiva to Viramune
« Reply #31 on: July 11, 2007, 10:32:23 PM »
 >:( I never liked sustiva. I started sustiva the minute it came out. I took it until it wasn't effective anymore. I know it caused bone thinning in my system. I lost body mass in area's. I was on that and zerit at the same time. When I found out about the lypo's and what side effects the meds caused, I went on a drug vacation for about 7 years. I have aged some but, just because Im older. But, I also wonder if I would look younger if I had never taken the meds at all. Who knows, I may still be in the same shape Im in now. I found out on my last doctor visit that my cd4 count is 175 and viral load is 33,000. So, my doc and I have decided on the medicine fuzeon. 2 shots a day with a very small needle. (NO BIG DEAL).400mgs of videx and 300mgs of epivir. These meds have very little side effects and in 4 years have not caused any of the lypo's. The side effects with the older meds were very scary for me. I have been positive since I was 25. I was one of the first that found out when they knew nothing of the disease. I will be 50 years old on August 29th. I REALLY thought I would be dead by now. But, here I am. My friend tells me Im only still alive because I have an ill temper. "Nothing like a natural BLOOD RUSH!" Im 187 lbs and 5'9". I have never had any severe illnesses. My insurance covered the fuzeon. The cost is $2500.00. I think that is for a 3 month supply. My doctor also said a new med is coming out soon. What is important is to keep your cd4 count high becuase, it can't remember how to build it self up if you loose too many t-cells. The fuzeon will give your system a faster and more effective boost with no side effects..........I don't mean to scare you about the sustiva but, it caused some strange side effects with me also. The groggy feeling in my head and plus I started going into rages in the middle of the night. After that I had to go on adavan to calm me down. So, it DID cause some strange psychological problems. It was hard for my friends to be around me. I still have an ill temper but it was so much worse then.

I wish you luck on your decisions and I hope you will remain WELL and HAPPY!

LAUGH A LOT AND LIVE!!!!!!!

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Thinking of switching from Sustiva to Viramune
« Reply #32 on: July 18, 2007, 01:04:26 AM »
Hey Brad,

Glad to hear the Viramune is working well for you and your liver is still a happy camper!

As with any of the meds, some experience side effects, others don't. When it comes to Sustiva, I started 10 weeks ago, have been miserable ever since.

My doc and I discussed Viramune, but he was reticent because of my CD4s. They have been more than 1,000 for a decade now. 

But, Viramune is still on the table, just not up front. The doc mentioned TMC125 and said he would do some research to see what getting on that might entail. I was a guinea pig in 96, might as well be one again.

We are also looking at another PI-based regimen. At this point, I am so tired of Sustiva I would go back on Crixivan.  But the doc said probably another more lipid-friendly PI might be better, like Sustiva or Reyataz.

I guess time will tell.

Keep us posted on how you do with the Viramune. I may be joining you if none of the others pan out.

HUGS,

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

Offline mrtallguy

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Re: Thinking of switching from Sustiva to Viramune
« Reply #33 on: July 18, 2007, 10:32:41 PM »
Hey Mark,
Great CD4 count!!  Mine is at 725 so my doc did not want to go with Viramune since it has only proven itself with those that have lower CD4 counts....I got off the wicked stepsister Sustiva and switched to Reyataz last week and I feel great....I take it with a Norvir booster and Truvada...3 pills taken at one time in the morning with food.  So far no side effects and it is one of the least likely PI's to give a rash so I'm crossing fingers, toes, ears, and my nose on that issue!!  I like to know that the Viramune is out there as a backup should my CD4 drop below 400 down the road...it seems to get great reviews.

Hey Brad....how are things going this week?

Be well...
Craig
I AM DETERMINED TO SEE THINGS DIFFERENTLY!
--ACIM

Offline bradmeistr

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Re: Thinking of switching from Sustiva to Viramune
« Reply #34 on: July 18, 2007, 10:57:52 PM »
Craig,
Things are going really well for me, thank you.  I am tolerating the Viramune with out any problems.  My liver is very happy, test results were as good as they have ever been, and I hardly notice any side effects from the Viramune.  The first 2 or three weeks I noticed a little bit of dizzyiness and sensitivity to light but that is all gone and only lasted for a couple of hours after dosing - it was all very manageable.  I do seem to get a litte tired a couple of hours after I take the Viramune, but nothing that I can't tolerate.  I have found one cup of coffee in the morning does the trick (not much different than pre meds and pre HIV) and in the evening if I keep busy I don't notice  a thing.  I wonder sometimes if it is the meds or old age - LOL.

Anyway, I go in for my full blood work in the next couple of weeks so I'll post that in early August. 

I am glad the Reyataz is working, that would have been my next option. 

Talk to you later - Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline tc400

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Re: Thinking of switching from Sustiva to Viramune
« Reply #35 on: August 01, 2007, 07:20:14 PM »
I decided to make the switch after reading this post! Thanks a lot for sharing.

Offline bradmeistr

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Re: Thinking of switching from Sustiva to Viramune
« Reply #36 on: August 02, 2007, 08:23:11 PM »
tc400

Gald to hear the psting the helped.  Please keep us posted on how you do with Viramune and do let us know if you have any questions.  I have been on Viramune for three months now and the initial side effects are all gone for me.  I feel so much better.    I go for updated labs soon and will post the results.

Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline tc400

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Re: Thinking of switching from Sustiva to Viramune
« Reply #37 on: August 05, 2007, 08:37:05 PM »
OK GUYS,

So just like Bradmeister, I am very excited to report that the switch to Viramune was the best thing I did in the past year! I only started FIVE days ago and I can see a real change in my life! No more trouble concentrating, no more off the planet feeling, no more "i dont care" attitude! Don't dismiss these symptoms if you have them on sustiva (I believed I felt down because I had just tested positive this past year: it was really sustiva)... Taking three pills instead of one is really not a big change! Especially when you have ZERO side effects. Next step: getting my labs done on Tuesday.

Offline LittlePill

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Re: Thinking of switching from Sustiva to Viramune
« Reply #38 on: August 06, 2007, 03:33:13 PM »
Hello everyone, my doctor has suggested switching off Atripla and possibly starting Viramune as well. His reasoning is the brain fog doesn't seem to be going away and I've been on the meds for about two months. In fact, it seems like it's getting worse. Just want to say reading some of your responses to Viramune has encouraged me to give it a chance. I do know I can't go on with this heavy head and feeling like a zombie. There has to be better than this.

Offline Sketch

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Re: Thinking of switching from Sustiva to Viramune
« Reply #39 on: August 08, 2007, 06:01:15 PM »
Must chime in and agree with all the rave reviews about Viramune.
I was on Sustiva for a year while part of a study that compared it to Kaletra. I felt lucky at first to be randomized on Sustiva because I heard even worse things about Kaletra. But it was a year of hell like most others here describe. The worse part was the grogginess all day from such limited quality-sleep. Never ever feeling well-rested because I never was.
Would have probably stayed on it longer if it didn't start giving me enlarged breasts. My doc did not hesitate to say the enlarging breasts were related to Sustiva because he had several patients with the same problem.
I had to laugh at this because of all the problems discussed with Sustiva, no one ever mentioned growing breasts . Gotta give the Sustiva marketing dept props for keeping all these bad side effects on the down-low. Not so sure it would still be the gold standard if all these problems were discussed more.
Started Viramune at 326 Ts and had no problems. Been about 3 years and Ts now in the early 500s and 32%.
And better yet the breasts went back down too. All good!
Like many others here I would have jumped the Sustiva ship much earlier if i realized how good Viramune would be.

Offline SouthSam7

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Re: Thinking of switching from Sustiva to Viramune
« Reply #40 on: August 09, 2007, 12:06:29 AM »
I can't speak for Viramune, but for me, Truvada and boosted Invirase work great - no side effects. 

Other than pill burden (7 total a day) I am so lucky to have found this combo which for some reason, is rarely initiated anymore.  It's worth it to me to take pills twice a day and have NO side effects.

Good luck,
Sam

Offline Fortitude

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Re: Thinking of switching from Sustiva to Viramune
« Reply #41 on: August 09, 2007, 02:41:53 AM »
I have to say that I have been using Sustiva since 2005, and other than adjusting the first month, I haven't encountered the same level of difficulty I've seen in other posts. I am using ATRIPLA successfully, and I recommend against switching to Viramune.

My viral load has been undetectable since August of 2005 after only one month of treatment, and my CD4's have climbed from 274 to 600.

If you are concerned about dizziness and haziness, I recommend the following:

Keep very well hydrated, which you should be doing already on any regimen. Also, avoid eating polysaturated fats. These fats are found in fried chicken, donuts, and other deep-fried foods. Eat only a small amount of red meat. Stick to poultry, fish, and lean pork products. Eat low-fat ice cream or frozen yogurt, and avoid sweets heavy in polysaturated fats.

If you do all of this, you won't have nearly the difficulty with Sustiva (efavirenz) some people report having. Fat greatly increases the solubility of the drug, and since it passes the blood-brain barrier (which is a good thing, considering neurAIDS isn't something anyone wants) this will directly affect one's brain.

Use common sense. Don't switch off of a top-line regimen unless you are experiencing severe side effects that you have already taken dietary and lifestyle steps to control.

Food for thought.

Offline tc400

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Re: Thinking of switching from Sustiva to Viramune
« Reply #42 on: August 10, 2007, 09:12:30 PM »
everyone reacts differently.

I personally have a low-fat diet. Never eat fried food. Rarely eat red meat. No sugar at all. Exercise every day. In good shape. Never had cognitive problems before.

However, I experienced serious side effects from the Sustiva in Atripla... and tried to "manage" them for a year!... So if you have adjusted your diet and you exercise, and you still experience this fog in your brain all the time, DO SWITCH. It's 2007, life with HIV can be side effects-free!


Offline Gibson

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Re: Thinking of switching from Sustiva to Viramune
« Reply #43 on: August 11, 2007, 03:12:28 AM »

3. About an hour after I take sustiva my brain feels very numb (I hate that feeling), I can only now imagine what alzheimers might feel like - does Viramune have any of these same side effects shorly after taking it like sustiva?  Especially since it is in the same drug class

Brad (feeling crazy in SF)

Thanks for the post Brad. I have been on Sustiva since July '02. Although I take it at night, without food, I believe it has caused a lot more psychological/mental side effects than I had first suspected. After the initial common side effects subsided, I felt generally OK.  My labs were never too awful in the first place, and only got better with meds. But I felt spacey, irritable, and sluggish for the first few months, and it was only marginal improvement with time.

My cognitive abilities, which were just fine before meds, seem cloudy and slow. My vision seems to change a lot. I often get a sense that my skin is not attached to my body. I am unpredictably weak physically. Things seem heavier than they really are. Though not particularly emotional, I feel depressed. Actually, I prefer the word suppressed, or even oppressed. It is the sensation that I am always fighting just to do basic things, like stand up or focus.

Today I accidentally took my Sustiva first thing in the morning (along with Combivir). I don't mess up my meds very often. I think I missed 1 dose this past year. Suffice it to say that when I realized my mistake I was irked. About an hour later, I started feeling the side effects of Sustiva.

I can't quite describe the sensation. I liken it to being stoned, except without the good happy silliness. I feel like a rubbery fluid has been injected in my veins. My vision is all warped. Colors seem a little more vivid. It is not entirely unpleasant, except that today, as in the past when I have felt this, all I can think about is the feeling. I definitely feel pretty useless. Driving a car is probably unwise. I wish this effect could be described better.

Because of my mistake, and knowing how food and fat interact with Sustiva, I didn't eat until about 5pm. Even so, when I did eat a big salad (full-on vegetarian here), about an hour later I got another big wave of dizziness and that rubbery headedness, along with the creepy skin feeling.

If this is what is happening to me every night when I sleep, then it has to be affecting me throughout my days. This is craziness. I am grateful for what meds can do, but my quality of life just isn't worth having more days.  I figured after 5 years I wouldn't have these side effects, but they seem to get worse, not better.

So, long story short, I am in the same boat. I am considering switching from Sustiva to something else.

My numbers are excellent and I hate to give that up, but frankly I am willing to quit meds altogether if that is my only option. I am reading this forum with a lot of hope.

I don't want to expect too much. I don't want to switch meds and expect my body to feel ten years younger, lose all my aches and pains, and show up on the cover of Sports Illustrated. But some of the posts I have read here convince me that 5 years of Sustiva is enough. I need to take a risk and try something else.

So...Viramune is the current fave over Sustiva?

-Gibson in Berkeley

Offline tc400

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Re: Thinking of switching from Sustiva to Viramune
« Reply #44 on: August 13, 2007, 12:25:17 AM »
I totally understand what you have been through. The same thing happened to me. Don't dismiss these symptoms. You can switch to Viramune, which is as safe and potent as Sustiva, and forget about these side effects! They were gone in four days for me. I see a REAL difference.

Offline Gibson

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Re: Thinking of switching from Sustiva to Viramune
« Reply #45 on: August 14, 2007, 09:46:25 PM »
So I am doing a little research about Viramune. I am wondering if anyone has any further data sources on the likelihood of liver problems for those of us with higher CD4 counts. My CD4 count varies wildly, typically ranging from 700-1200. As of last month I was somewhere around 700.

I can't get in to see my doc for another few weeks, and I want to go in with as much information as possible.

This site continues to be the best resource for info that I can find. Much appreciated!


Offline ajm_ldn

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  • Posts: 69
Re: Thinking of switching from Sustiva to Viramune
« Reply #46 on: August 19, 2007, 03:39:40 PM »
Guys,

Check out these two links regarding Viramune:

"Nevirapine Liver Toxicity not Linked to Gender or Higher CD4 Counts in 2 Studies" -
http://www.hivandhepatitis.com/2006icr/icaac/docs/100306_e.html

and

"LDL Drops with Sustiva to Viramune Switch" -
http://www.aidsmeds.com/articles/1667_12041.shtml

A new perspective on the Viramune vs Sustiva debate I guess...  improve your lipids and get your brain back by switching to Viramune.  Not too shabby.  Yeah, I know it's just two studies, but still...

By the way, I'm still enjoying having my mind back from Sustiva and I'm still experiencing no side effects whatsoever.  Happy days.  :-)

Boy, those marketing guys in the Sustiva camp ARE really good!  lol

Best,
Andrew

Offline bradmeistr

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Re: Thinking of switching from Sustiva to Viramune
« Reply #47 on: August 19, 2007, 07:25:50 PM »
I am so happy for so many of you who have been able to switch to Viramune.  As for people on Sustiva and can tolerate it, lucky you and I am very happy for you (most of my friends tolerate Sustiva with no side effects), it would have been nice if it had worked for me too.  I did try everything that I read, no food for 4 hours before taking Sustiva, low fats, etc. but, needless to say they only help marginally.

Because most of my friends tolerate Sustiva I stuck it out for a year hoping that it would get better, but never really did.  I think I had mentioned it before, but the things that started to really concern me was the fear that I might loose my job because of the difficulty concentrating, and even more concerning, I started feeling much more depressed than I ever had.  I live near the Golden Gate bridge (and all kidding aside) when I found my self thinking how easy it would be to just jump and eliminate all my problems, I knew I needed to figure something else out. 

After four months of being on Viramune I am so happy now; I feel like a new person.  I am also so glad to hear my postings have helped some people, I really believe in this site and also understand that all people will have differing side effects with their meds.  So if Sustiva works for you, count your blessings and continue taking it. 

I do think if I were a doctor I would still recommend Sustiva and or Atripla as a first course treatment, but I would also make sure that if my patient was not tolerating Sustiva, I would make them aware that there are other options such as Viramune, and recommend a switch before their T cells got too high.  It is strange too say this but I am glad my Tcells never got too far over 400 so I had less of a chance of a bad reaction.  Although, i think my doc would have rather seen my stay on Sustiva, I think he could tell I was miserable.  When I started Viramune I was pretty concerned about a bad liver reaction and that is why they tested my liver function each two weeks.  (Your liver is an organ than over time can heal itself if it is not too badly damaged - so I have been told) If you have concerns about a crazy liver reaction talk to your doc and make sure you know how to recognize a bad reaction, like abdominal pains, etc. and get your liver checked maybe weekly to be on the save side. 

For all of you who have questions, don't be shy, just ask, that is how we all learn and hopefully better ourselves.

I just got my blood drawn yesterday and again my liver is functioning perfectly, (even had some great California Zinfandel on Friday evening).  I will get my Tcell counts and viral load in the next couple of weeks and will post them when I get them.

Take care everyone,

Love Brad

Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline bradmeistr

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Re: Thinking of switching from Sustiva to Viramune
« Reply #48 on: August 31, 2007, 01:31:32 AM »
So I just got my test results and my T cells are 462, the highest they have been in the last three years.  Liver is fine. 

Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline J.R.E.

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  • Posts: 7,277
  • Joined Dec-2003 Living positive, since 1985.
Re: Thinking of switching from Sustiva to Viramune
« Reply #49 on: August 31, 2007, 07:48:04 AM »
So I just got my test results and my T cells are 462, the highest they have been in the last three years.  Liver is fine. 

Brad

Brad,

It's good to hear that things are going well for you !!


Take care----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


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 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

 


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