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Author Topic: Thinking of switching from Sustiva to Viramune  (Read 20215 times)

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Offline joshyaker

  • Member
  • Posts: 4
Re: Thinking of switching from Sustiva to Viramune
« Reply #50 on: February 02, 2008, 12:03:28 PM »
I tested positive in 2004 and started taking my regimen in 2005, so all in all I want to say I have been on my current regimen for approximately 3 years. When I first started taking my Sustiva I had the night sweats and problems sleeping, but it subsided. I have not had a schedule since the time I started taking my medication, until recently. I now have went back and am finishing my Masters, so I need to be bright and focused. I do notice that I seem less able to focus and study, but I feel that this may be to uninteresting textbooks rather than side effects.

The largest change is I get really mad at little things and they tend to send me over the top. Mostly in road rage situations. If I get honked at it makes me uncontrollably upset. I also get upset at places where I should not get upset at. All in all, I just feel that I am not content with myself anymore and after researching it, it sounds rather bipolar.

I have intense levels of anger and happiness with my partner, but usually not much in between. I don't know how he puts up with it! I am on:

Sustiva
Viread
Ziagen

My regimen is once a day in the evening before bed. I was 25 when I began taking medication and I am nervous about switching, because I am more concerned about the long term effects, since I will probably have to take medicine for the remainder of my life. I have a nutritionist that specializes in HIV positive persons and I take a healthy regimen of vitamins to help counter-effect possible long term problems.

I asked my doctor about the potency of my medication since I know children are recommended to take lesser strengths and I am only 115 lbs, so I am rather small in stature. She had mentioned the possibility of me perhaps taking a lower dose, but after checking, it was recommended that anyone over a certain weight take the full, which I think is still overkill. But regardless..

I am thinking that my mood swings are related to Sustiva but I am concerned about the long term side effects more so than the short term. I have thought the side effects were tolerable, but after realizing I probably am affected greatly by Sustiva, I think I need to switch. This board seems to have had a lot of positive experience switching.

By the way, my viral load is undetectable, and I have no resistance to any drugs, so I would like to keep it that way. My concern is currently I have a 100% compliance record for my medication. (I am very strict with myself) and I may be concerned that more than one dosage daily may be harder to follow, but may be worth it in the end. My CD4 count is currently at 570.

I am basically just wanting to know what options I have switching to and I know every medication has side effects, but I am trying to find one I am more tolerant of. I am going to meet with my doctor next week and discuss this. I would rather switch my regimen and figure out that it is the cause than taking an additional medication (anti-depressant), especially since I do not want to take anti-depressants.

Thanks for your future input.

Offline joshyaker

  • Member
  • Posts: 4
Re: Thinking of switching from Sustiva to Viramune
« Reply #51 on: February 02, 2008, 12:08:45 PM »
Oh, by the way I failed to mention the most irritating side effect. My sleeping is totally screwed up and I usually wake up around 1, 2 or 3 AM and cannot fall back asleep, so I lie in bed dreaming, but still awake. It is very odd. I fade in and out of consciousness.

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Thinking of switching from Sustiva to Viramune
« Reply #52 on: February 02, 2008, 12:16:42 PM »
I am thinking that my mood swings are related to Sustiva but I am concerned about the long term side effects more so than the short term. I have thought the side effects were tolerable, but after realizing I probably am affected greatly by Sustiva, I think I need to switch. This board seems to have had a lot of positive experience switching.

By the way, my viral load is undetectable, and I have no resistance to any drugs, so I would like to keep it that way. My concern is currently I have a 100% compliance record for my medication. (I am very strict with myself) and I may be concerned that more than one dosage daily may be harder to follow, but may be worth it in the end. My CD4 count is currently at 570.

I am basically just wanting to know what options I have switching to and I know every medication has side effects, but I am trying to find one I am more tolerant of. I am going to meet with my doctor next week and discuss this. I would rather switch my regimen and figure out that it is the cause than taking an additional medication (anti-depressant), especially since I do not want to take anti-depressants.

Let me suggest that the inconvenience of twice-daily dosing with Viramune should be vastly outweighed by the almost certain improvement in your mental state.  If the number of dosings is more importantly than quality of life, please re-evaluate your priorities.

Namaste,
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 hakeem

  • Member
  • Posts: 4
Re: Thinking of switching from Sustiva to Viramune
« Reply #53 on: February 21, 2008, 12:38:28 AM »
hello every one. i was on sustiva and truvada since july 2007. i swiched to Viramune and truvada. this is my second night. i am hopping not have any side effect. so far so good. i will let you know how it will go. thank you guys for you info.
hakeem.

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #54 on: February 24, 2008, 03:01:02 PM »
Good for you.  It does not taken long for you to feel better.  I think by about day 3 or 4 I started to notice a big difference.  Get your liver enzymes tested weekly for the first feew weeks just to make sure your liver is tolerating the switch to Viramune.  Good luck and kep us posted.
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline hakeem

  • Member
  • Posts: 4
Re: Thinking of switching from Sustiva to Viramune
« Reply #55 on: February 25, 2008, 01:01:21 AM »
thank you bradmeistr. tonight is 5 night i am on Viramune. i am feeling better. my sleep is much better too. my doctor told me to talk one tablet a day for 10 days and then 2 tablets a day after that. i going to see him march 5, to check my liver enzymes.
i am very happy so far.

Offline bradmeistr

  • Member
  • Posts: 36
Re: Thinking of switching from Sustiva to Viramune
« Reply #56 on: February 27, 2008, 11:38:07 PM »
Oustanding.  I am so glad to hear you are feeling better.  I have to say after about two weeks I felt like a totally new person.  Keep me posted on how your liver test turns out.
Brad
Sept 2002 tested poz
Started Sustiva and Truvada March 2006 - CD4 just below 300
May 2007 CD4 440

Offline hakeem

  • Member
  • Posts: 4
Re: Thinking of switching from Sustiva to Viramune
« Reply #57 on: March 01, 2008, 08:48:10 PM »
i was talking one tablet a day Viramune past 10 days with truvada. today i started 2nd dose of viramune. i feeling great. no side effects thnks god.
i will see my doctor next week. to check my liver. hopefully will be ok.
 i will let you know the result.
peace guys

Offline bmancanfly

  • Member
  • Posts: 596
  • Medicare For All !
Re: Thinking of switching from Sustiva to Viramune
« Reply #58 on: April 01, 2008, 08:10:47 PM »
this thread has been very helpful.  Thanks Brad and all.

I've been on Atripla now two months. VL went from 255,000 to a VL of 155 in one month - which was great news if I wasn't so depressed and listless. CD4 now in the high 200's   Unfortunately, I'm experiencing most of the above mentioned side effects with seemingly no abatement at all after two full months. 

While I'm encouraged by all the postings about improved side effects,  are these two drugs (viramune and sustiva) equally effective against the virus?  If so why all the hoopla about Atripla?
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline vittorio808

  • New Member
  • Posts: 2
Re: Thinking of switching from Sustiva to Viramune
« Reply #59 on: April 01, 2008, 08:50:19 PM »
This is my first post here. I was on Sustiva and Combivir for a long time - many years (since 1990 I think) During my first 2 weeks on meds I had some side effects, like vivid color dreams, nothing bad and a bit drowsy a few hours after taking the daily dose. I switched to taking both pills before going to sleep and from there on I woke up refreshed and had absolutely no more side effects. Then I took Sustiva and Truvada one dose each without side effects.

I am now for the last few months on Atripla and experience no side effects either.

I am poz since 1982 and started my meds in 1990.

Am healthy and sassy and 62 years old, going on 30!

Good luck everyone and keep a positive attitude and keep busy.

Vittorio

Offline vittorio808

  • New Member
  • Posts: 2
Re: Thinking of switching from Sustiva to Viramune
« Reply #60 on: April 01, 2008, 08:58:55 PM »
Hi,
Atripla is the combination of Sustiva and Truvada in one daily dose/pill.  - Two different pharma companies got together to work on one med to improve the life of patients. This is unheard of and commandable. 8)

Vittorio

Offline randym431

  • Member
  • Posts: 1,125
Re: Thinking of switching from Sustiva to Viramune
« Reply #61 on: April 09, 2008, 06:33:19 AM »
I love this thread. Some of the best user friendly info I've read. More usable info than from those research reports or lab test results one reads about, that you have to wonder about i.e. the profits involved and doctors pushing sustiva as a first line med.
I've been on sustiva since 2005 and I worry about long term. I have the dreams, but not bad or vivid as they suggest sustiva causes.
But I have definitely noticed a huge mood change. And more and more I notice that little meek and mild me turning into the personality of that like a high paid conceited hollywood actor.
Like the littlest things set me off. I constantly have to check myself when dealing with clerks or people on the phone, as not to blow up at something they do or say
that goes against the grain. And sleeping problems are getting worse. I work nights, but my body is fighting me to live a daytime schedule.
I can sleep all night at home on my nights off (like a normal person) but toss and turn trying to sleep days when I am back on the work schedule.
So I usually really dread the start of the work week, cause I know I'm going to be a zombie.

Enough of all that...
I have seriously considered switching off sustiva to the big V, but since my meds of sustiva and epzicom have given my great labs and high cd4 counts from the deadly cd4 of 83 back in 2005 pre meds, I am reluctant to change anything. And the “once a day” meds I am on now would be hard to give up for a twice a day viramune switch. The way I feel, the simpler the dosage the less likely I will screw up. So far I've been 100% on track, never missing a dose.

Then too, as weird as sustiva is, would a switch make things worse lab wise? Should I risk it?
So its either stay on sustiva and become the "mean old man" on the block, or switch to V and risk opening a new can of worms.

But I have to admit, as I feel more and more like some other unknown personality is taking control of my mind, I lean towards risking a change to V.

I've never talked to my doc about this, since their attitude is if the labs look good, all is well. They have done their job, please pay at the door on the way out.

I take hiv treatment very seriously, knowing the alternative, and really hate to risk messing up a good thing. Or a working thing.
But as I feel more and more postal when dealing with people, maybe I should take the risk? I can't decide.
I guess I’m a bit chicken to change.
Anywho, this thread has helped me much in coming to a decision.

Now, if I could just get my high paid conceited hollywood actor – like doctor to listen, and not simply suggest to me I get more fresh air or take longer walks, to deal with sustiva side effects.

Offline shadowfluid

  • Member
  • Posts: 398
  • Mike
Re: Thinking of switching from Sustiva to Viramune
« Reply #62 on: April 09, 2008, 11:41:00 PM »
I love this thread. Some of the best user friendly info I've read. More usable info than from those research reports or lab test results one reads about, that you have to wonder about i.e. the profits involved and doctors pushing sustiva as a first line med.
I've been on sustiva since 2005 and I worry about long term. I have the dreams, but not bad or vivid as they suggest sustiva causes.
But I have definitely noticed a huge mood change. And more and more I notice that little meek and mild me turning into the personality of that like a high paid conceited hollywood actor.
Like the littlest things set me off. I constantly have to check myself when dealing with clerks or people on the phone, as not to blow up at something they do or say
that goes against the grain. And sleeping problems are getting worse. I work nights, but my body is fighting me to live a daytime schedule.
I can sleep all night at home on my nights off (like a normal person) but toss and turn trying to sleep days when I am back on the work schedule.
So I usually really dread the start of the work week, cause I know I'm going to be a zombie.

Enough of all that...
I have seriously considered switching off sustiva to the big V, but since my meds of sustiva and epzicom have given my great labs and high cd4 counts from the deadly cd4 of 83 back in 2005 pre meds, I am reluctant to change anything. And the “once a day” meds I am on now would be hard to give up for a twice a day viramune switch. The way I feel, the simpler the dosage the less likely I will screw up. So far I've been 100% on track, never missing a dose.

Then too, as weird as sustiva is, would a switch make things worse lab wise? Should I risk it?
So its either stay on sustiva and become the "mean old man" on the block, or switch to V and risk opening a new can of worms.

But I have to admit, as I feel more and more like some other unknown personality is taking control of my mind, I lean towards risking a change to V.

I've never talked to my doc about this, since their attitude is if the labs look good, all is well. They have done their job, please pay at the door on the way out.

I take hiv treatment very seriously, knowing the alternative, and really hate to risk messing up a good thing. Or a working thing.
But as I feel more and more postal when dealing with people, maybe I should take the risk? I can't decide.
I guess I’m a bit chicken to change.
Anywho, this thread has helped me much in coming to a decision.

Now, if I could just get my high paid conceited hollywood actor – like doctor to listen, and not simply suggest to me I get more fresh air or take longer walks, to deal with sustiva side effects.

I would ask your doc about viramune once a day.  I take it once a day and I know that many that do also.
Jan 08       321/23%  VL 92,000 (very mild shingles)
Feb 1 08    Start Truvada+Viramune
March 08    470/33%  VL 320
mid-May     Start Reyataz/Norvir/Truvada
June 08      571/ 40%     VL   80
August 08   585/ 33%     VL >50
Nov  Lab error!!!!!!!!wah.
Jan 09        535      Undetectable
March 11     756

Offline randym431

  • Member
  • Posts: 1,125
Re: Thinking of switching from Sustiva to Viramune
« Reply #63 on: April 10, 2008, 08:22:18 AM »
I'll ask... Can you switch back and forth between the two if one doesnt work out i.e. rash or something, since they are in the same family?
Anyone on a combo of V and epzicom? Hows it working out?

NYCguy63

  • Guest
Re: Thinking of switching from Sustiva to Viramune
« Reply #64 on: November 04, 2009, 09:36:17 PM »
I have been on Sustiva + Truvada and then Atripla since sometime in 2000.  I have had an undetectable viral load the entire time and my current CD4 count is around 650/40%.  While I have been extremely happy, of course, with these numbers, I can no longer take the nightmares and weird dreams (3-5 a night) that wake me up and make my heart feel like it's beating a mile-a-minute, sweating, and not being able to shake off the bad feelings they give me for the first few hours of the morning.  Therefore I asked my doctor to change me to Viramune + Truvada last week and I am about to take my first dose this evening.  I'm not sure if the Sustiva has affected my mood (i.e., made me depressed or anxious or moody, etc.) but I suspect so.  I've been on it for so long I've forgotten what it was like to NOT be on it.  I am, however, on Cymbalta for major depressive disorder and clonazepam for panic disorder (both diagnosed years before I was HIV+) so I suspect that the Sustiva + Truvada/Atripla is NOT the ideal drug for me.  So, here I go and I'm hoping the Viramune will keep me undetectable and keep my CD4 number and percentage high.  I am concerned, since I have a t-cell count over 400, that I will have rash and/or liver toxicity problems but my doctor says that most people can "work through those".

What is concerning me the most is changing from the Atripla (Sustiva) to the Viramune and how to do it properly so as to not have too much or too little NNRTI in my system at any point and then become resistant to this class of drugs and have to go on the dreaded PI's.  I've read different things on the internet and I know what is recommended because I am a Certified Pharmacy Technician.  However, all the information conflicts.  One says to take one Viramune for TWO weeks and then take the two tabs twice a day.  Another source says if you are on Sustiva/Atripla and changing to Viramune that you should go on the full, two tablets of Viramune a day immediately.  My doctor, whom I trust very much and who is very knowledgeable about HIV of course, has instructed me to take stop the Atripla/Sustiva and start the Viramune the next day, ONE tablet per day for ONE week, then move to the two tablets per day (plus the Truvada, of course).  I'm going with what he's told me, but I'm wondering how anyone else here did the transition from Sustiva/Atripla to Viramune.  I'm really worried about having too much (or too little) NNRTI in my system and then developing a resistance to the entire class and having to go on a PI (I was on Crixivan originally from 1997 - 2000...it worked but it's a horrible drug to have to live taking).  So how did anyone here transition from Sustiva/Atripla to Viramune?  I'm curious if my doctor's instructions are the same as your doctor's instructions.

Thanks for any input anyone out there has!

 


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