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Author Topic: i hate sustiva - what else can I take?  (Read 2771 times)

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Offline schnitzer

  • Member
  • Posts: 43
i hate sustiva - what else can I take?
« on: June 23, 2007, 03:29:44 PM »
are there any other meds that offer the convenience of sustiva?

i been taking this for 4 months. i don't know how much more of the side effects i can take..  (Sigh)

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: i hate sustiva - what else can I take?
« Reply #1 on: June 23, 2007, 04:40:09 PM »
Talk to you doctor. 
But on me they replaced Sustiva with Viramune... which is twice a day.  I have zero side effects. 
For me, I would have happily taked twenty-seven pills a day at 53 1/3 minute intervals in order to get out of dealing with the effects of sustiva.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline schnitzer

  • Member
  • Posts: 43
Re: i hate sustiva - what else can I take?
« Reply #2 on: June 23, 2007, 09:54:10 PM »
omg, viramune has some crazy disclaimer from the manufacture..  are you sure it's safe? - sounds scarrier than sustiva.

http://us.viramune.com/

VIRAMUNE can cause severe liver disease and skin reactions that can cause death. These reactions occur most often during the first 18 weeks of treatment, but can occur later. Ask your healthcare provider about how to recognize symptoms of skin and liver problems. Stop taking VIRAMUNE if you have any of these reactions. Do not restart VIRAMUNE if you experience any of these reactions. Call your healthcare provider immediately if you have any of these reactions.

Offline ajm_ldn

  • Member
  • Posts: 69
Re: i hate sustiva - what else can I take?
« Reply #3 on: June 24, 2007, 07:44:04 AM »
Any packet insert on any drug makes it sound like that drug could kill you.  Go try reading one for aspirin and you'll be afraid to take that too.  The job of packet inserts is to protect drug companies from the lawyer sharks in the very unlikely event that you have some freak reaction to their drug.

I recall that you began Sustiva shortly after me.  I found Sustiva to be hell-on-earth because I was dead tired ALL the time despite 8 hrs sleep each night.  Also, after a few weeks of stupid feeling giddiness and absent-mindedness, the blues started to come on.  Oh, and going to work and leaving my front door wide open was another ridiculous thing that perhaps one day I'll be able to laugh about.  Anyway, what a freakin' mind f**k that stuff was.

My doc was resistant to switching due to my good VL respose, as I quickly went undetectable.  He said some people simply choose to accept a few side-effects in return for good overall numbers, yadda, yadda...  Personally, I didn't really want to lose my job (and possessions) by remaining a 24/7 lethargic dingbat...

Well.... I'm really glad I didn't accept the "learn to live with it" bunk and persisted in asking to switch to Viramune.  Yeah, I had a little scare due to some transient elevated liver enzymes, but that's all behind me now and I feel amazing.  No side effects whatsoever.

My advice:  get yourself off Sustiva pronto and onto Viramune.  Be a good boy like me  ;) and follow up rigorously with getting full bloodwork done to ensure you remain a happy, healthy bunny.

You really have nothing to lose.  Even if you ultimately can't take Viramune, it's not like the stuff is gonna kill you suddenly in one week.  If you get regular monitoring during the first 18 or whatever weeks, the docs will spot any probs long before any permanent damage is done.  In that case, you can try Reyataz and worry about kidney stones.  lol 

Best of luck matey!

Offline J.R.E.

  • Member
  • Posts: 7,150
  • Joined Dec-2003 Living positive, since 1985.
Re: i hate sustiva - what else can I take?
« Reply #4 on: June 24, 2007, 11:11:48 AM »
Hi there Schnitzer,

I've been on Viramune since October of 2003, and so far no problems. I found it very easy to tolerate.

What other meds are you on ? Mention it to your doctor, Ask him about switching from Sustiva, because the side effects are too much for you.

As far as the convenience of Viramune. One Viramune/per day is taken for 2 weeks. After the second week, two viramunes are a taken a day. (One pill every 12 hours.) If you were to start on viramune, that is how you would start it. Do you drink a lot of alcohol?


Keep us informed as to what you decide-------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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline J.R.E.

  • Member
  • Posts: 7,150
  • Joined Dec-2003 Living positive, since 1985.
Re: i hate sustiva - what else can I take?
« Reply #5 on: June 24, 2007, 11:17:52 AM »


PS,


What are your current numbers. CD-4 and Viral load ?
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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline bradmeistr

  • Member
  • Posts: 36
Re: i hate sustiva - what else can I take?
« Reply #6 on: June 24, 2007, 09:32:24 PM »
I totally agree with ajm_ldn.  i just made the switch from Sustiva to Viramune -

My story was the same - I thought I had to accept the side effects.  So far switching to Viramune is the best decision I made in the last 15 months.  I finally made the switch because I felt like loosing my job and or jumping off the Golden Gate were not good alternatives.

I not like to preach, but do check out Viramune. 

By the way - I was pretty freaked out about taking Viramune as well but, I thought Viramune or homeless!!! it was a fairly easy decision.  My liver seems to be functionally perfectly - so says the first lab test after taking Viramune for 2 weeks.

Take care, keep us posted and keeping asking those questions - I once read a posting that said with as many HIV drugs that are out there, people for the most part should not have to tolerate debilitating side effects.

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

Offline Tempeboy

  • Member
  • Posts: 358
  • Like St Francis of Assisi I am wedded to Poverty
Re: i hate sustiva - what else can I take?
« Reply #7 on: June 25, 2007, 02:53:07 AM »
Hey babe,

Viramune is a good choice, and it can be taken as a once daily dose.  I know stacks of people on this drug, and don't know anyone who has had this reaction.  I think you can take a test dose to see if you are allergic.

What other drugs are you on? There might be other options.

http://www.plwha.org.au/PLWHA/attachments/FS1_Efavirenz_Run-ons_V2.pdf

tempeboy

who does not understand the insanity of drug induced insanity.  >:(
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 newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: i hate sustiva - what else can I take?
« Reply #8 on: June 25, 2007, 03:10:15 AM »
Subject to resistance considerations, you have a massive choice.

Staying with NNRTIs, Viramune is a candidate for a simple switch. But 1 x day is not a recommended/approved dosing schedule, though it is used this way. People with higher CD4 counts (women 250+, men 400+) are not recommended to use this drug because of the increased risk of liver problems.

If you want a 1 x day drug there are several PIs. 

However, 1 pill in the morning and 2 or a few in the eve but no Sustiva madness may add up convenience eh?

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

Offline J.R.E.

  • Member
  • Posts: 7,150
  • Joined Dec-2003 Living positive, since 1985.
Re: i hate sustiva - what else can I take?
« Reply #9 on: June 25, 2007, 07:37:52 AM »

 Viramune is a candidate for a simple switch. But 1 x day is not a recommended/approved dosing schedule, though it is used this way.

If you want a 1 x day drug there are several PIs. 


- matt


Just to reiterate what Matt has said here. I was taking both Viramunes together for a while, but for me, it felt as though I was getting to much drug concentration all at once,  so I went back to one viramune every 12 hours. This works well for me.

From the drug section ( In reference to what Matt stated above in regards to once day dosing of viramune :

"It might be possible to take Viramune only once a day. This would involving taking one 200mg tablet, once a day, for two weeks, followed by two 200mg tablets, also once a day, thereafter. Researchers are now testing the safety and effectiveness of this option it has not yet recommended by any experts and has not yet been evaluated by the U.S. Food and Drug Administration.
 
You may take Viramune with water, milk, or soda. You may take Viramune either with or without foods.


Also at Matt stated you have an option of the PI class.


There was also this article from the news section, in regard to once a day dosing of viramune :

http://www.aidsmeds.com/articles/1667_11411.shtml




Take care-------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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline schnitzer

  • Member
  • Posts: 43
Re: i hate sustiva - what else can I take?
« Reply #10 on: June 26, 2007, 09:36:59 AM »

PS,


What are your current numbers. CD-4 and Viral load ?

VL is UD, CD4 is around 350-400..  I don't understand how someone can get CD4 in the Thousands.. I've always hovered around this range.
I drink every weekend! :P

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: i hate sustiva - what else can I take?
« Reply #11 on: June 26, 2007, 10:53:45 AM »
VL is UD, CD4 is around 350-400..  I don't understand how someone can get CD4 in the Thousands.. I've always hovered around this range.
I drink every weekend! :P

Schnitz, darling, sounds good enough for making the jump to Viramune.  Mr Genetic Freak off meds for 90 weeks, I run in the high 600s to low 800s with a percentage in the high 30s.  As for folks with CD4s in the thousands (1) it's not particularly "normal" and (2) they may just be over-compensating nancies <EG>

One thing about drinking, though:  with any HIV meds, you need to be kind to your liver, and taxing it with booze doesn't help.

WOOF,
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 ubotts

  • Member
  • Posts: 347
Re: i hate sustiva - what else can I take?
« Reply #12 on: June 27, 2007, 10:54:06 AM »
 :HI..I took sustiva and had the worse nightmares..omg.it was hell on earth for me..than in time the sustiva wasnt working, so they switched me to kaletra and
combivir.........ive been on that for 3 yrs now..no side effects...
When i began treatment my tcells were down to 27..i fluctuate between 200 to 271. Seems i cant get up to 300 tcells.......I see all u guys are way above my
tcell level and i wonder if its because i started meds when i was down to 27 tcells. Any comments please.. ???
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)

 


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