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Author Topic: ATRIPLA - REALLY struggling :-(  (Read 13177 times)

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Offline buffaloboy

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ATRIPLA - REALLY struggling :-(
« on: October 28, 2009, 09:08:26 AM »
I'm on my ninth day of starting Atripla having not taken any HIV medication before, and I'm finding that I'm really struggling with it. I haven't had a decent night's sleep since I started and find myself waking up at all hours feeling drunk, dizzy and usually sweating profusely, and not being able to get back to sleep until it starts to get light.

Consequently, I find myself dozing off during the day, which dominoes onto my night time sleep. I was aiming to take my tablet by about 11:30, but I've often found that what has become an essential early evening nap - due to lack of night time sleep- has lead to me not waking up until 2am or later, so getting into a medication routine has been impossible so far. I didn't take the tablet until 4am one night and the following day felt like being in a fuzzy dream - horrid.

I've also experienced pronounced memory loss which kicked in about two days after I started treatment; suddenly names and words escape me when I've always been very good in this regard, usually having razor sharp recall. I think related to this is also that I'm having trouble concentrating. I will read something in the newspaper and then have to read it again as it simply hasn't sunk in.

And my appetite has vanished into thin air. I haven't vomited and don't feel sick (most of the time), but I simply just don't fancy food at all. I've made a point of making myself pleasant meals, but I can only manage a few forkfuls before having to throw the rest away. I'm probably down to just over 1000 calories a day, which is way too low for an adult male, and I can already see I've lost weight on my face, and clothes no longer fit properly.

I've also had other side effects like skin turn blotchy and neuropathy in my hands, but I'm less concerned about these.  What bothers me is that my energy levels are so low that I've had to spend most of my time in bed. And when I do get up I just feel like some zombie, struggling to get through the day. I was looking forward to having more energy when I started treatment so that I could just get on with my life. But because of the way the side effects have impacted on me, I've never been MORE conscious of the fact that I'm HIV positive on an hour to hour, day to day basis. It's somewhat ironic that I feel far, far worse now I'm on treatment, than I ever did without it.

Any thoughts or comments, please, apart from those saying that 'it's early days' and that I need to 'give it time' which, with respect, I've already considered?

Offline ruralguy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #1 on: October 28, 2009, 09:48:08 AM »
I've been on it for 6 or 7 weeks now and all the early problems have passed.  I had sleep issues but my doctor prescribed Ambien and that helped a lot.  I took it with my atripla. I'm not sure if the sleep problems were caused by the med or just the anxiety surrounding the whole experience.  I still don't sleep as well as I used to but I don't take ambien any more either.

I was obsessing over waiting 2 hours after dinner to take Atripla.  Someone here suggested actually having a light snack when I took it.  And that actually helped me some with sleep and gas, a problem I was having.

I do have to make myself eat more than I actually want just to keep my weight even.  I'm hoping that issues goes away.  Other people gain weight on this med so it shouldn't be a problem.  You can try eating protein bars of something like that to keep you going.  You do have to eat well.  Do you take any vitamins or supplements?  You also have to drink lots of water or juice or.....something.

I did not have the other effects you mentioned.  Lots of people on here are taking Atripla so I'm sure you will get other input.  In general, it got rapidly better after 2-3 weeks.  My energy level was depressed like yours but now is fully back to normal.  I hope this helps a bit.  Hang in there.
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #2 on: October 28, 2009, 10:21:24 AM »
Thanks for your reply RuralGuy. I have been anxious about starting treatment but I got so fed up of getting Community Acquired Pneumonia (CAP) at ever decreasing intervals that I decided to just start and not think too much about it. My concerns were always more to do with the long term side effects of HIV drugs (like body fat changes and liver toxicity) rather than how it would effect me in the early days. So, the fact that I now feel as if I've been hit by a truck and laid up in bed for a relatively long period, has come as something of a shock to me.

I'm not sure about the empty stomach '2 hour' rule thing - it doesn't seem to make a difference to what sort of night's sleep I get or how I feel the next day.

I drink a couple of pints of water/juice a day, but don't know if that's 'enough', and I'm not currently taking any supplements although I do have some multivitamins at home that I guess I could take. My main concern with diet, though, is the weight loss, as an emaciated gay man, rightly or wrongly, screams 'AIDS victim' to many people in the world at large.

Offline Nashvegas

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Re: ATRIPLA - REALLY struggling :-(
« Reply #3 on: October 28, 2009, 11:27:59 AM »
Some people have a really tough time with Atripla, and it certainly sounds like you're one of them.  I was very concerned about the central nervous system effects of Sustiva, and so I steered clear of Atripla.  I went with Truvada and Viramune instead, and have been very happy with my combo (absolutely no side effects whatsoever).  If I were having the side effects you're having, I think I'd consider switching combos. Have you talked with your doctor about the possibility? 

Keep us posted. 
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #4 on: October 28, 2009, 12:36:12 PM »
My doctor is on holiday for a couple of weeks so I'm not able to speak with him. I've got a month's supply of Atripla so I feel like I should stick with it until it finishes, but it's difficult to imagine feeling like this for 20 more days when the side effects do not seem to be diminishing at all. I've read posts on here that it can take up to 2 months before things settle down but, if things carry on like this, if I haven't committed suicide by then, then I'll be dead from malnutrition anyway.  :(

Sorry to be melodramatic, guys, but I just wasn't expecting the medication to turn me into a male version of a Stepford Wife. I was hoping to just knock back the tablet like a vitamin pill and not dwell too much on it, but it's reached the point where I fear night time closing in as I know that that signals it will soon be 'Atripla time', bringing with it all these dreaded, negative consequences.

Offline BT65

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Re: ATRIPLA - REALLY struggling :-(
« Reply #5 on: October 28, 2009, 06:33:29 PM »
Some of the forgetting and trouble concentrating you're having may have to due with your lack of sleep.  There's a member on here (DavidNC) who takes his Atripla in the morning.  I don't know if that would help you or not.

I took Sustiva for awhile, but couldn't deal with the side effects.  It just made me very depressed, suicidal.  I didn't lose any sleep.  This is definitely something you're going to want to talk to your doctor about.  Is someone covering for him?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mecch

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Re: ATRIPLA - REALLY struggling :-(
« Reply #6 on: October 28, 2009, 07:40:29 PM »
Can you see your GP, or any doctor, in the next few days. 
You should try some sleeping pills.
It strikes me that a fair number of your reactions are not so linked to Atripla as to stress and lack of good sleep.

Don't just stop by the way.  Have to replace the combo with another immediately. 

I'd try to see a doctor and not wait for the weeks for your specialist to come back.

Good luck. Hang in there.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #7 on: October 28, 2009, 07:44:15 PM »
Some of the forgetting and trouble concentrating you're having may have to due with your lack of sleep.

Yes, I've considered this. But until I get a decent night's sleep, or two, I won't be able to tell what's causing the problem.  It's worth noting though, that lack of concentration is listed separately to disturbed sleep on the information sheet that comes with the tablets.

After taking the one dose at 4am, and spending most of the day buzzing, I honestly don't think I would want to risk taking Atripla in the morning; I'd be even more conscious of the side CNS effects, I reckon. I really cannot fathom how people can start talking Atripla if they are working which, thankfully, I'm not at present. If others experience these type of side effects, then it must be extremely difficult to hold down a job - full time or otherwise.

I will call my clinic tomorrow and speak to one of the nurses and see what they advise. I've pretty much made up my mind now that I will have to stop this regime, so really it's just a question of how, and which other drug combinations I can switch to.

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #8 on: October 28, 2009, 07:54:38 PM »
It strikes me that a fair number of your reactions are not so linked to Atripla as to stress and lack of good sleep.

Possibly. But as I say in my post above, all of my side effects are listed on the information sheet for Atripla so it's not so peculiar that I'm experiencing them. I thought I'd get a few vivid dreams and that would be it, not feel as though I've been koshed over the head, and have my appetite stolen away.

If I do stop taking Atripla, which seems likely at this stage, I can't see the harm in waiting a week or so, so that I can speak with my HIV doctor. I don't want to rush into another regime that's not right for me, so I'd rather wait for a proper consultation. People have taken 'drug holidays' for months at a time and still lived to tell the tale.

Offline mecch

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Re: ATRIPLA - REALLY struggling :-(
« Reply #9 on: October 28, 2009, 08:08:49 PM »
There are ways to stop taking HAART and a doctor should advise you how.  Usually it is by replacing it with another combo the next day.  Letting it gradually leave you system is not ideal.  Call any doctor and discuss before you quit cold turkey.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #10 on: October 28, 2009, 08:33:07 PM »
There are ways to stop taking HAART and a doctor should advise you how.  Usually it is by replacing it with another combo the next day.  Letting it gradually leave you system is not ideal.  Call any doctor and discuss before you quit cold turkey.


If anything, it would seem to make more sense to taper the drug off, which is what they do with anti-depressants (and is what is actually rumoured to be in Sustiva that causes the central nervous systems issues).
But I suspect doctors concern about people going cold turkey is more to do with viral rebound and lowering CD4 counts than anything else.

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #11 on: October 28, 2009, 10:19:20 PM »
 First  month   of Atripla  was  rough.   Sunburned  like  skin,  white  colored  poop (  sign  liver  doesn't  like  it) etc.  Finally   got a Decadron/Kenalog  shot  from  a local  doctor  to   get  me  through  the  reactions  till  my  body  adjusted. My  body  is  very  adaptive  to  meds. ; some  peoples  bodies  aren't.   I  was  only  getting 3  hours  sleep a  night  tops which  wasn't  helping  me  think  either.  Doctor  gave  me a  prescription  of  Ambien CR &  took  care  of  that.  I found I  had  to  take   the Atripla  on  an  empty  stomach  like  the  label  says (   about 4  hours  after  supper) . I  was  used  to  eating about 6  times a day  because  I  was  starving  to  death all  the  time,  but  if  I  took   the  Atripla  around  the  time  I  ate cookies,  cake,  low  protein  foods,  sometimes   it  seemed like  it  took  a  long  time  to  kick  in and  made  me  draggy  the  next  day.  If  I  took  it   around  the  time I  ate  any  protein  foods  (  meat,  eggs,  etc.)  I  got so  drunk  I  could  barely  make  it  too  bed.  I love  to  have  a fried  egg sandwich or  bacon  or home made  vanilla  pudding made  with  eggs at  night,  but  it  won't work  with  the  meds.   I'm  in  my  20th  month  on Atripla and  I  still  have  the  same  problems  with  food.  Most  the  other  issues resolved  after  a few  months.  Some  people do  really  well  on Atripla,  some  people  have  to  change.  I  know  one  person  that  was on 3 different regimens before  finding  one  that  was free of  issues.  I'm  hard headed and  don't  intend  to  change till I  have  to.  
« Last Edit: October 28, 2009, 10:24:57 PM by pos2007 »
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #12 on: October 28, 2009, 10:32:03 PM »
Just a thought,  considering your propensity to community  acquired  infections and  your  night sweats, it  might  be  a good  idea  to  have  a TB test. Good  luck .
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline mecch

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  • red pill? or blue pill?
Re: ATRIPLA - REALLY struggling :-(
« Reply #13 on: October 29, 2009, 01:53:16 AM »
If anything, it would seem to make more sense to taper the drug off, which is what they do with anti-depressants (and is what is actually rumoured to be in Sustiva that causes the central nervous systems issues).
But I suspect doctors concern about people going cold turkey is more to do with viral rebound and lowering CD4 counts than anything else.

If you search far enough on the Internet you can find all sorts of rumours.  My favorite one is that an African witch doctor claims he can see the spirit of angry jungle monkeys in the aura of HIV+ people, and the virus is transmitted to revenge humans destroying the balance of nature.  Voila. 

Seen that stuff about the SSRI and HAART common ancestors, too.

Listen, you don't really get to decide "what makes sense" when dealing this these drugs, the specialists have more info and experience.

One of the issues in stopping one HAART combo and not replacing is that you could possibly develop resistance to one of the drugs in the combo if it stays around longer than the others....  This is independent of the viral rebound.

If your HIV doc is on holiday, he/she must have left indications for other doctors to contact, in case of emergency.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #14 on: October 29, 2009, 04:53:56 AM »
Listen, you don't really get to decide "what makes sense" when dealing this these drugs, the specialists have more info and experience

This might work well for you, which is great, but I take a very different approach. I'm extremely detail oriented and highly involved in any decisions that my doctor suggests.  I don't think of doctors as infallible and, as experienced as they are, they don't know everything; I've mentioned studies from official sources that he hasn't been aware of. But that's OK. It means that anything we decide, we decide together and sometimes that's a process of information gathering on both parts, followed by discussion, before a conclusion is reached.

So yes, I do in fact get to decide ''what makes sense'' when it comes to HAART, and anything else related to my health care.


Offline BT65

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Re: ATRIPLA - REALLY struggling :-(
« Reply #15 on: October 29, 2009, 05:48:57 AM »
but I take a very different approach. I'm extremely detail oriented and highly involved in any decisions that my doctor suggests. 

I agree with this 100%.  I think we know our bodies best, and should be involved with making the best choices for us, along with the doctor.  Good luck, and I hope you can get an answer soon.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Assurbanipal

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Re: ATRIPLA - REALLY struggling :-(
« Reply #16 on: October 29, 2009, 07:18:19 AM »
If I do stop taking Atripla, which seems likely at this stage, I can't see the harm in waiting a week or so, so that I can speak with my HIV doctor. I don't want to rush into another regime that's not right for me, so I'd rather wait for a proper consultation. People have taken 'drug holidays' for months at a time and still lived to tell the tale.


Hii

Sorry to hear you are having so much difficulty with this regimen.  You are absolutely right that you don't need to rush into a regimen,  But once you have started, it can be a different matter.  And stopping this particular one "cold turkey" carries risks that would not apply if you were stopping a different regimen.

That's because one of the 3 drug components in Atripla is Sustiva, which has a very long "half life" in the body.  The other two drug components in Atripla have more or less normal half lives.  So if you just stop cold turkey you effectively wind up with just Sustiva in your body for a week or two, instead of three drugs.  That type of situation (called "effective monotherapy") is when you are most likely to develop drug resistance.  You may think this is no big deal, since you are not tolerating Sustiva that well anyway, but resistance can develop to more drugs than just Sustiva, effectively limiting your choices for future therapy.

So instead of just stopping Atripla, it may be safer to switch to a different therapy for a couple of weeks, while the Sustiva leaves your body.  That's why you are getting so much push back from the group on just stopping without talking to your doctor. 

Hope things clear up for you one way or the other.

Best wishes

A

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #17 on: October 29, 2009, 09:24:09 AM »
I agree with this 100%.  I think we know our bodies best, and should be involved with making the best choices for us, along with the doctor.  Good luck, and I hope you can get an answer soon.

Thanks. I'm going off my own topic now, but I have to say I'm somewhat surprised at the way some patients just go along with everything their doctors say without question.  I'm not criticising this approach as we are all different and need to find our own way through the HIV medical maze.

One thing I learned fairly early on is that there aren't always black and white answers, and what one doctor will tell you can be quite different to what another will say. As HIV is a relatively new disease, and the treatments newer still, information is constantly getting updated, and not all doctors keep pace of this; some tend to stick to the 'old' ways just because that's what they are familiar with, regardless of whether a newer approach might actually be more suitable for some patients, if not all.

So this is why I do not put doctors on a pedestal. Their knowledge is undeniably  extensive - as it should be- but it's not without its limitations too. And of course, the internet has democratised much of their knowledge so they are no longer its sole gate keepers; anyone, should they choose, can now look up official controlled studies, and read peer-reviewed articles in the profession's publications.

That being the case, I personally would not expect a consultation to be a one-sided flow of information. I make the assumption that the doctor will be more than happy to hear my views and take them on board before making any treatment recommendation.  If that is not the case then we have to part company. I'm the person who has to live with these decisions and, even if things don't go well, at least I will know I played an important part in the process, rather than feeling powerless and as if something has been imposed on me from on high.

Anyway, back to the topic. I am seeing my therapist, who works in the same clinic as my doctor, tomorrow afternoon, so I've decided to hang fire and see what transpires from that discussion.

Offline mecch

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Re: ATRIPLA - REALLY struggling :-(
« Reply #18 on: October 29, 2009, 04:29:31 PM »
So yes, I do in fact get to decide ''what makes sense'' when it comes to HAART, and anything else related to my health care.

Nothing personal.
I think you are playing semantics.l
If you decide it "makes sense" to quit your Atripla without discussing with a doctor, there is a chance you are making a mistake.  The information is passed to you in good faith.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #19 on: October 29, 2009, 08:24:38 PM »
buffaloboy,  you  have  made  several  comments I agree whole  heartily  about.  1.  Your  doctor  should listen  to  you. Unfortunately  there are  quite a few  doctors  that   won't.  My  wife  and I  got  in  an  argument  with  one  in  the hospital last  month. I   told her  I  have  lived  in  this  body  for  51  years,  so  I  should  have  an intimate  familiarity  with  it.  My  wife also  told  her  that  she  has  been  married  to  me  for  25  years  and knows how  my  body  reacts  as  well.  2. That  being  said,   you should  not  always  discount a doctors advice  either,  but  it  is  incumbent  on  the doctor  to  make  it a two  way  street. Most  doctors have  the  experience of seeing  how a large number of  people  react as  a whole  to  the  meds,  though  everyone does  not  always react  the  same. 3.  If  your  doctor won't  listen IT  IS  TIME  for a change  if  that  is  possible.  Not all  of  us  have  that  option  given  the  limited  number  of  providers  in the  area. 4. We we  may  disagree is stopping  the Atripla w/o changing  to  a different  med  is  taking a serious gamble of developing a drug resistant mutation to  the  HIV virus.  Good  luck  to  you.  You  might  have  your psychologist  call your  doctors  on call  physician  and  discuss  your  concerns if  your  doctor is not available.  I hope everything  works  out  O.K.  for  you.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline AboutToStart

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Re: ATRIPLA - REALLY struggling :-(
« Reply #20 on: October 29, 2009, 08:39:32 PM »
The warmest reccomendation I can give you (and all other "beginners") is to do keep the 2hrs buffer between food and taking the pill. For me - even 3-4 hrs. This would make the WHOLE difference between bein groggy and dizzy the next day or not. Even now, after 3months, as side effects HAVE SUBSIDED, if I eat (or drink sugars) an 1hr prior - I'd be knocked out. Before switching off completely - try a 3-4hr buffer and see how it do you... Good luck!
« Last Edit: October 29, 2009, 08:59:07 PM by AboutToStart »

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #21 on: October 30, 2009, 05:16:42 PM »
Thanks for the comments. Even where there are differences I still appreciate reading other people's points of view and experiences.

I feel quite lucky to be living in London as there are many HIV clinics that I could try out to see where I feel most at home. But I'm inclined to stay with the one I'm with at present because a) it's very convenient to get to and b) most importantly, it is also where my psychologist is based and knows all the medical doctors - handy if a consultation has not gone well.

The latest update on my situation: :  I  still haven't stopped taking Atripla! I saw my psychologist today and we talked through some of the side effects that are bothering me the most. On this basis, he was able to procure on my behalf a prescription for sleeping tablets, so that hopefully I will get a good night's sleep. From there, I hope to be able to discern exactly how much of the memory loss and foggy-headnesses is down to Atripla, as opposed to  the insomnia-induced fatigue.

I've made an appointment for next week with the dietician who should be able to prescribe some high calorie protein drinks, which will calm my anxieties about losing weight due to my lack of appetite. I will also see an 'adherence adviser' who might be able to give me some tips to minimise the side effects, and I now have an appointment with a new doctor to discuss the possibility of a regime switch.

I still feel just as affected by the drug side effects but I do feel somewhat better in my mind, knowing that I'm taking some positive action rather than just putting up with things on my own.

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #22 on: October 30, 2009, 05:26:38 PM »
The warmest reccomendation I can give you (and all other "beginners") is to do keep the 2hrs buffer between food and taking the pill. For me - even 3-4 hrs. This would make the WHOLE difference between bein groggy and dizzy the next day or not. Even now, after 3months, as side effects HAVE SUBSIDED, if I eat (or drink sugars) an 1hr prior - I'd be knocked out. Before switching off completely - try a 3-4hr buffer and see how it do you... Good luck!

I find this idea interesting but , for me, having 3-4 hours between food and medication is not something I could sustain in the long run. I'm not working at the moment so am free to experiment, but if I were, I wouldn't be able to get home early enough to prepare a meal and eat it and then leave such a relatively long before taking the tablet. I'm actually a natural late eater, usually not sitting down for dinner until about 8:30-9pm and eating desert at around 10ish. So, potentially, that would mean having to stay up until 2am every night before I could take the drug.

Offline Nestor

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  • What we love, we shall grow to resemble.
Re: ATRIPLA - REALLY struggling :-(
« Reply #23 on: October 30, 2009, 09:21:55 PM »

Thank you for sharing all of this with us.  As someone who is presumably going to have to take medicines sooner or later myself, I find it horrifying--but helpful--to read about the possibilities. 

One thing that strikes me, in reading your posts, is that you don't sound at all like someone suffering from foggy-headedness or memory loss.  Everything you've written has been in lucid, correct, coherent prose.  I'm certainly not saying that to cast doubt on your account of your own circumstances, but rather to point out something which might be reassuring in the midst of the stress you are going through. 

If I were starting Atripla right now, I think I would be very much tempted to take it in the morning.  That would settle the "empty stomach" question (although, is there a recommendation against eating for a certain amount of time after taking it?) and it would also stand less of a chance of disturbing the night's sleep, which is of paramount importance for our health. 

At any rate, I certainly wish you all the best of luck with your ongoing efforts to cope with these medicines.  It was really an unfortunate moment for your doctor to go on vacation!  Please let us know how it goes. 

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline kuttakamina

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Re: ATRIPLA - REALLY struggling :-(
« Reply #24 on: October 31, 2009, 12:49:55 AM »
BuffaloBoy,

I totally understand your pain and dilemma on being on meds. I had gotten so sick, both psychologically and physiologically while I was on them that I had to quit taking them. Unfortunately, my health really started to deteriorate rapidly after being on and going off meds. Prior to that, I wasn't doing too bad.

I have also followed you on the "other" forum and I agree with you that there are a lot of questions but almost no answers.

If you want we can exchange e-mails privately and discuss some issues in greater detail.

At one level, it does seem that hiv is a truly fatal condition, but at the same time, the treatment for it is no better either, it creates all kinds of horrible side effects, causes cancers, liver failure etc. WHAT IN THE WORLD IS ALL THIS? We are sending probes to Jupiter but we can't eliminate a virus that we know everything about? What about millions of people who are positive but not taking any drugs, nor know that they are infected.

Yet, some of us, people like you and me are coming down with one illness after another and find no easy way out of this cul-de-sac.

Hope you feel better, with or without the meds.

Offline newt

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Re: ATRIPLA - REALLY struggling :-(
« Reply #25 on: October 31, 2009, 07:49:26 AM »
Hello buffalo

The Atripla (efavirenz) side effects do tend to pass, but if they don't in a time you decide is reasonable, dammit, get a new combo. Living in London you will have a choice of alternative drugs if you choose to switch.

Choice of drugs is to some extend a matter of clinic/doctor preference. Studies give an edge to the 3 drugs in Atripla, but not really that much of one compared to modern alternatives. Plus there is the important point of having a functional life and feeling better....

Starting you off on Atripla is not what the UK guidelines or indeed the European approval statemtent recommend, the licensed indication for Atripla is as a switch once viral load has been under 50 copies for 3 months.

There you go, doctors/clinics do their own thing.  Sometimes you need to be robust with them. In the end it's your body, your life, your decision.

Good luck

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

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #26 on: November 01, 2009, 07:46:40 PM »
Thank you for sharing all of this with us.  As someone who is presumably going to have to take medicines sooner or later myself, I find it horrifying--but helpful--to read about the possibilities. 

One thing that strikes me, in reading your posts, is that you don't sound at all like someone suffering from foggy-headedness or memory loss.  Everything you've written has been in lucid, correct, coherent prose.  I'm certainly not saying that to cast doubt on your account of your own circumstances, but rather to point out something which might be reassuring in the midst of the stress you are going through. 

If I were starting Atripla right now, I think I would be very much tempted to take it in the morning.  That would settle the "empty stomach" question (although, is there a recommendation against eating for a certain amount of time after taking it?) and it would also stand less of a chance of disturbing the night's sleep, which is of paramount importance for our health. 

At any rate, I certainly wish you all the best of luck with your ongoing efforts to cope with these medicines.  It was really an unfortunate moment for your doctor to go on vacation!  Please let us know how it goes. 



Writing is actually a hobby of mine, so I always endeavour to come across in an eloquent manner.  However, I've struggled just with these posts, in terms of using the right words and expressing my thoughts clearly, in a way I simply wouldn't have done pre-Atripla.

I think the problem with a morning dose of Atripla is that once it's in your system, the CNS effects of Sustiva don't usually take hold for between 2-4 hours.  This is why you find people saying they have woken up in the middle of night to go to the bathroom and experienced vertigo, dizziness and/or the room spinning. If you are able to accommodate these effects (should you experience them) in your morning schedule at work or college etc, then, obviously, it won't be a problem. However, personally, I really don't fancy spinning out at my desk, when I finally do return work. I'm like a bear with sore head in the mornings anyway, so I couldn't cope with something exacerbating my usual cantankerous mood!

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #27 on: November 01, 2009, 07:49:43 PM »
BuffaloBoy,

I totally understand your pain and dilemma on being on meds. I had gotten so sick, both psychologically and physiologically while I was on them that I had to quit taking them. Unfortunately, my health really started to deteriorate rapidly after being on and going off meds. Prior to that, I wasn't doing too bad.

I have also followed you on the "other" forum and I agree with you that there are a lot of questions but almost no answers.

If you want we can exchange e-mails privately and discuss some issues in greater detail.

At one level, it does seem that hiv is a truly fatal condition, but at the same time, the treatment for it is no better either, it creates all kinds of horrible side effects, causes cancers, liver failure etc. WHAT IN THE WORLD IS ALL THIS? We are sending probes to Jupiter but we can't eliminate a virus that we know everything about? What about millions of people who are positive but not taking any drugs, nor know that they are infected.

Yet, some of us, people like you and me are coming down with one illness after another and find no easy way out of this cul-de-sac.

Hope you feel better, with or without the meds.


kuttakamina: check your inbox on here as I've sent you a private message.



Offline GNYC09

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Re: ATRIPLA - REALLY struggling :-(
« Reply #28 on: November 01, 2009, 10:01:26 PM »
At one level, it does seem that hiv is a truly fatal condition, but at the same time, the treatment for it is no better either, it creates all kinds of horrible side effects, causes cancers, liver failure etc.
Which currently prescribed HIV meds cause cancer?  I haven't found anything online that substantiates your claim.  The NY Dept of Health site, for example, states: "There is no proof that HIV medications increase the risk of getting any type of cancer."

Liver damage perhaps but cancer?

Offline Nestor

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Re: ATRIPLA - REALLY struggling :-(
« Reply #29 on: November 02, 2009, 10:56:22 AM »
Hi again,

I definitely understand what you're saying about the morning dose.  In my current situation, alas, I have to be on the subway at 7:15 in the morning in order to get to work and start teaching at 8:30.  I could hardly imaging succeeding long as a teacher if I started "spinning out" in front of a classroom full of students!  

The only thing behind the idea of the morning dose was the claim that the effects would not nearly be so bad because, on an empty stomach, the meds would pass out of the system faster.  But that still leaves the question of whether one can eat shortly after taking Atripla.  If the answer were no, that would mean not being able to have breakfast, which would hurt in another way.  But at least the night's sleep would not be effective....

But in all of this I'm talking about something which, for me, has become hypothetical.  I'm close to deciding that, if and when I ever take any medicine at all, it's not going to be atripla.  There are simply too many people in these forums complaining about depression after taking it, and that's just a chance I don't want to take.  My own emotional state is simply too fragile.  

How are you feeling now?  Any change in your symptoms?  

Finally, I just noticed the part about "high calorie protein drinks, which will calm my anxieties about losing weight due to my lack of appetite."  May I point out (it's a favorite cause of mine) that there is something simpler and far better which may do the same work?  It is real milk.  My definition of real milk is: 1. the cows were eating green grass and grazing in sunlight, 2. They were Jersy or Guernsey or Swiss Brown cows, which give the richest milk, and 3. If at all possible the milk hasn't been pasteurized or homogenized.  I get mine from a traditional farmer in my area and it's exquisite; after tasting such milk I will certainly never be able to go back to the supermarket stuff!  One of the features of milk, however, is that it promotes weight gain.  For me that is a problem, so I only drink small amounts, but for someone who wanted to gain weight it would be ideal.  I would be happy to give you more information about the virtues of real milk if you are interested.  

Edit: I seem to have mixed up my threads in writing this next paragraph, since depression and anxiety are not among the problems you are talking about here.  Sorry!  I'll leave it anyway, since I think the things I recommend are good for pretty much anyone.  A few other things that are supposed to help with depression and anxiety are cod liver oil (it has to be a traditional kind that has lots of vitamin D), coconut oil, (which is delicious and also wouldn't hurt in preventing weight loss) and giving up sugar and caffeine if you use any.  (I myself, however, will never give up my tea entirely, although I'm taking a break from it right now.)  I wouldn't claim that these things work miracles, but they certainly haven't hurt me.  It amazes me that in my twenties, when I was younger and better-looking, made much more money than now, and didn't have HIV, I was always on the brink of suicidal depression, and now, with HIV, poverty, baldness and increasing age to deal with, I somehow never am.   My situation is depressing, but I am not depressed.  There are deep reasons for that which go far beyond nutrition, of course, but I believe that the things I mention above are playing some role too.  In your case, of course, the question is whether they could help counter-act or moderate the effects of sustiva; I would think they would certainly be worth trying.  

Good luck and please continue to keep us posted.
« Last Edit: November 02, 2009, 03:51:30 PM by Nestor »
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: ATRIPLA - REALLY struggling :-(
« Reply #30 on: November 02, 2009, 11:14:44 AM »

I'm close to deciding that, if and when I ever take any medicine at all, it's not going to be atripla. 


Hi Nestor,

You don't have to take Atripla if you don't want to. It's the Sustiva component of the pill that causes the problems, but the other two drugs are fairly side-effect-free. You can get them together in one pill called Truvada.

I'm not on meds yet either (over twelve years poz, if you want to see my numbers, look at my profile) and there's no way I'll take Sustiva. If I have to start meds tomorrow, I'm opting for Reyataz, Norvir and Truvada as it's a once a day combo that can be taken in the morning. If I can hold out until Isentress goes once-daily-dosing, I'll opt for Isentress and Truvada.

Atripla isn't the only option out there.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Nestor

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  • What we love, we shall grow to resemble.
Re: ATRIPLA - REALLY struggling :-(
« Reply #31 on: November 02, 2009, 01:04:10 PM »
Hi Ann,  

Thank you so much for sharing that.  I have to say that it is really inspiring to read your profile and see an example of someone with maintaining good numbers over more than twelve years without the meds!  Over the past few days I've been trying to read as much as possible about medicines, and a few things--the ongoing talk about side-effects being one of the main ones--have been scaring me a bit.  

Two things come to mind.  First, what most people say, including my own doctor (and Madbrain in this thread: http://forums.poz.com/index.php?topic=28303.0), is that there is gradual progression in CD4 count decline; I think I heard somewhere that the average person loses about 50 T-cells a year.  Yet, looking at my own number, I so far (knocking on wood) don't see any progression at all; on the contrary it seems cyclical or even random.  And looking at your numbers over nine years, I see the same thing; in fact your numbers for the last two years look the same as the ones from seven or eight years ago!  Again, this is very encouraging, and it also raises questions.  

Secondly, this raises questions about the big question on all of our minds, which is when to start meds.  I know some people online who are adamant about starting as soon as possible, and lately some studies have been suggesting that starting meds with a higher T-cell count holds out more hope for the long-term, and that doctors may soon routinely recommend starting with a t-cell count of around 500.  A typical line (this is from an about.com page to which someone in this forum linked recently) is this:

"Recent data suggests that starting medications sooner rather than later decreases the risk of death by as much as 94 percent. Some believe that the time will come when experts will recommend starting meds with a CD4 count of as high as 500. More studies are being done but many believe that seeing meds begin with CD4 counts of 500 or above may not be far away."

My own doctor regards 350 as the absolute cut-off point, and in this thread: http://forums.poz.com/index.php?topic=29640.0 we find someone whose doctor is recommending starting medicines based on one test with a CD4 count of 326, after all other labs had results between 500 and 700, and the majority of people replying there are suggesting starting the meds.  

So basically, could you tell us something about your own criteria for starting meds?  You've been at or below my own doctor's cut-off point of 350 several times--the first was as early as 2001--and if you had started medicines then you would never have known that you could get back to the 700's on your own or have so many more years without meds!  Again, this is why reading about your numbers has been something of a relief to me--I've felt, reading things like the above, as if the handwriting were on the wall for "treatment" sooner rather than later.  

Which brings me back to buffalo boy.  You mention getting CAP at intervals, but what were your numbers like before starting atripla, and how long had you been positive?  I hope you don't mind my asking, but I find it really helpful to share this kind of information.  

Thank you again!

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: ATRIPLA - REALLY struggling :-(
« Reply #32 on: November 02, 2009, 03:21:03 PM »
Nestor, I always said that if my CD4s were between 200-300 for more than two draws (each three months apart) that I'd start. I would have never started based on one low count - that's why my numbers history looks like it does. I wouldn't recommend ANYONE starts meds based on one result below their or their doctor's cut off point. Blips happen all too often to base important treatment decisions on one result.

However, I'm seeing my doc tomorrow and I'm going to discuss starting with him. I'll be getting my numbers from three months ago but I'm not sure what sort of bearing that will have on our discussion. Thing is, I'll be 47 on Wednesday, poz for 12.5 years, and I just get the feeling it may be time to bite the bullet and start.

I don't regret for one minute not starting already, because the meds I would have started on back when are different to the ones I'd be taking if I start now. I've had a lot of med-free years and I'm grateful for that. I still want to hold out for once-daily Isnetress, but this is one of the things I want to talk over with the doc. I want to discuss my rationale that I'm not getting any younger (and neither is my virus) and maybe it's time to stop the inflammatory response that's been going on in my body for so long before the shit hits the fan, so to speak. I want to see what he thinks in light of some of the newer research. He's always been a "wait and see" type person and I wonder if that's changed. I haven't seen my doc in over a year - my clinic is in a teaching hospital so I see a trainee more often than not.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Nestor

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  • Posts: 430
  • What we love, we shall grow to resemble.
Re: ATRIPLA - REALLY struggling :-(
« Reply #33 on: November 02, 2009, 03:56:00 PM »

Ann, Thank you again.  It would be impossible to exaggerate the degree to which this information helps me in thinking about my own future choices. 

Buffalo Boy, I hope I haven't "hijacked" your thread with these questions to Ann, and am sorry if I have!
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #34 on: November 02, 2009, 04:15:46 PM »
UPDATE: I still feel pretty much the same only with the added delight of a migraine that I woke up with on Saturday morning. It's waxed and waned but at times has sent me under the covers for hours at a stretch, in a desperate attempt to avoid any light.  I couldn't say what brought it on but it appeared the morning after I took a sleeping tablet (Ambien). I wasn't over the moon about adding more drugs to the mix but I was desperate for a decent night's sleep. I still woke up a couple of times but was able to get back to sleep within about half an hour or so. However,  the payback seems to be this terrible migraine. I've not taken any more sleeping tablets since Friday night.

As for protein drinks, I should be able to get some free through my clinic which, when mixed with milk, account for 500 calories. I've had Jersey milk and organic stuff and it's lovely, but beyond my budget right now.

I'm not sure what my numbers were when I had CAP. Definitely below 350 though.

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #35 on: November 02, 2009, 04:28:58 PM »

Buffalo Boy, I hope I haven't "hijacked" your thread with these questions to Ann, and am sorry if I have!

No worries. I think the nature of discussion is for it to take twists and turns. As long as we broadly stay on topic, there's the potential for us to all  learn something new and possibly unexpected.

Offline honeychurch

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Re: ATRIPLA - REALLY struggling :-(
« Reply #36 on: November 04, 2009, 04:11:48 PM »
it did not get better for me.  i wish i had not have waited so long to change over to truvada and virimune.   too much side effects business with the other.  just like you described.  i would say change it right away.

ps your obsession will go away once you are used to taking meds. 

Offline boyfish

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Re: ATRIPLA - REALLY struggling :-(
« Reply #37 on: November 04, 2009, 05:30:50 PM »
I was on Sustiva and then switched to atripla. My doctor said my labs were excellent with Sustiva. After a year of horrific nightmares and daymares. Daymares is when you have a scary nightmare that wakes you up but not completely. I would be woke but not able to move and the nightmare was still going on. It was Hell. I called my doctor and told her I was quiting Sustiva. She pleaded with me not to quit the regimen. I told her life wasn't worth living if I had to suffer with these nightmares because of Sustiva.  She changed my meds. I now have no side effect. Life is good.

Offline confidentIwillbeOK

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Re: ATRIPLA - REALLY struggling :-(
« Reply #38 on: November 04, 2009, 10:21:44 PM »
...and you switched to what?

Offline boyfish

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Re: ATRIPLA - REALLY struggling :-(
« Reply #39 on: November 05, 2009, 12:31:01 AM »
While I was on Sustiva, I saved a lot of money. I stopped going to the theater to see horror movies. ALL the horror movies were lightweight compared to my nightmares. ::)
I got off Sustiva then tried Atripla (Sustiva's sister). I was then put on Norvir, Reyataz andTruvada. With these meds I have no side effects  ;D.  My T cell count is 1200 ,  undetectable. My T cell count has been 300 maybe lower. I can't remember a lot about that time period in my life.

Offline beefbud

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Re: ATRIPLA - REALLY struggling :-(
« Reply #40 on: November 06, 2009, 04:12:49 PM »
Just to add my 2 cents.
Have been on Atripla since March of this year and went undetectable within the first month.  Felt like I was on acid about 2 hours after taking it, experience the memory loss that you mention and also find I become VERY irritable at times, dreams/nightmares come and go but sometimes they are cool, sometimes NOT.  I have decided enough is enough though...my appointment is a week from today and I am talking to my doc about switching my combo and looking forward to not having to base my day/mood around when I take my pill.

Good luck with whatever your decision may be.
"first impressions are cheap auditions"

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #41 on: November 07, 2009, 02:47:39 AM »
So, after nearly 3 weeks, I've finally thrown in the towel with Atripla. Due to the length of time that Sustiva stays in your body for, I've been given some Truvada to take for the next 10 days, after which I won't be on any regimen at least until I see my doctor in a month's time where we can discuss other options.

I have to say that I do feel a little disappointed as there's a lot of hype around Atripla  being so 'easy to take' but I wonder if that's simply because it's the first one-a-day combination; I found it convenient to take a single pill, yes, but it's consequences certainly were not 'easy' for me and didn't appear to be improving with time.

I wouldn't wish to put anyone off from trying Atripla out - I've been told by my doctor that most patients tolerate it very well. However, I will say don't put up with any difficult side effects for longer than you feel you can handle, and as it says in the Treatment Information section on this site: BE PREPARED.

Offline kuttakamina

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Re: ATRIPLA - REALLY struggling :-(
« Reply #42 on: November 07, 2009, 05:52:07 AM »
Hi Buffaloboy,

Sorry, I was finally able to read your personal message today, and that too over e-mail as the web based link kept on saying, "sorry, you cannot read the message".  And since you cannot reply from the e-mail, I have to write here.

Man, it really is an enigma and life's bitter challenge that we have to deal with this deadly disease and then take these deadly poisons. Yet, even on here there are people like Nestor or Ann whose CD4's are so high, and have no immediate need to go on meds.  My head really spins when I think of the complexity around this disease.

Hiv medicine is nothing like taking meds for heart disease or diabetes. There people are not dealing with life-altering side effects nor are suffering from things like liver failure. Sometimes I feel so angry and frustrated that I think it is a failed science. Yet, this illness is indeed a juggernaut as it slowly keeps on rolling over you.

Do suggest how to send you a personal e-mail so we can discuss this some more, either through here or outside e-mail.


Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #43 on: November 07, 2009, 06:31:53 PM »
Hi Buffaloboy,

Sorry, I was finally able to read your personal message today, and that too over e-mail as the web based link kept on saying, "sorry, you cannot read the message".  And since you cannot reply from the e-mail, I have to write here.

Man, it really is an enigma and life's bitter challenge that we have to deal with this deadly disease and then take these deadly poisons. Yet, even on here there are people like Nestor or Ann whose CD4's are so high, and have no immediate need to go on meds.  My head really spins when I think of the complexity around this disease.

Hiv medicine is nothing like taking meds for heart disease or diabetes. There people are not dealing with life-altering side effects nor are suffering from things like liver failure. Sometimes I feel so angry and frustrated that I think it is a failed science. Yet, this illness is indeed a juggernaut as it slowly keeps on rolling over you.

Do suggest how to send you a personal e-mail so we can discuss this some more, either through here or outside e-mail.



kuttakamina: I've just sent you a private message with my email address in the subject line. Let me know on this forum if you can't read it.

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #44 on: November 07, 2009, 08:55:05 PM »
I am  glad you stayed with  it  long  enough to get it  changed.  Hope  this  new meds work  better! There have been a lot  of  times I've thought about changing,  but still  sticking  with  it.  With 15  meds,  i  don't  know  what kind  of  new  issues would  pop  up.  Keep  us  posted  how  it  works  for  you. 
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline Nestor

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Re: ATRIPLA - REALLY struggling :-(
« Reply #45 on: November 07, 2009, 09:13:07 PM »
Hi Buffalo Boy,  I'm glad you made the right decision for you--are you feeling better now without the sustiva?  Thank you for sharing your experience with us.  I think you're right about the "hype"; I suspect that with the (understandable) concern with 'adherance', the presumed advantage of a one-a-day in that department seems to have swept everything else before it.  Let us know what the next step is for you. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Ann

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Re: ATRIPLA - REALLY struggling :-(
« Reply #46 on: November 08, 2009, 09:04:05 AM »
kuttakamina: I've just sent you a private message with my email address in the subject line. Let me know on this forum if you can't read it.

Kuttakamina won't be able to read or send PMs until he or she has posted at least three times on the forum. (This is to prevent people signing up for an account and using the PMs to send spam, without ever posting on the forum.)

Kuttakamina, you only need to post one more time and you'll be able to read your PMs here. And by the way, welcome to the forums!

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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Offline kuttakamina

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Re: ATRIPLA - REALLY struggling :-(
« Reply #47 on: November 08, 2009, 10:09:47 AM »
Thank you Ann for the information about the requirements to receive or send e-mails.

Also, though I haven't checked out your profile, please reply if you take any supplements, or do any alternative treatment to stay healthy and keep your numbers in check, or is it just good solid luck?

Buffaloboy, I will write to you shortly in detail to your provided address.

 

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #48 on: November 08, 2009, 02:37:24 PM »
Hi Buffalo Boy,  I'm glad you made the right decision for you--are you feeling better now without the sustiva?  Thank you for sharing your experience with us.  I think you're right about the "hype"; I suspect that with the (understandable) concern with 'adherance', the presumed advantage of a one-a-day in that department seems to have swept everything else before it.  Let us know what the next step is for you. 

My last Atripla tablet was taken on Thursday night and it's Sunday evening now and I'm already beginning to feel better. In fact, yesterday, I met up with a friend when we window shopped, took  a long walk and then went on to a cafe. And today I met another friend for lunch.

Now, bear in mind, that I felt both physically and emotionally unable to do any socialising the whole time I was on Atripla and most of my day - and evening - in bed. I still feel foggy-headed but nowhere near as much as I have been over the last three weeks. My memory seems to be returning, I'm sleeping better, have better control over my moods, and my appetite is on its way back. I wouldn't say I was anywhere near 100% but at least I can feel the 'old me' returning and now have a desire to re-engage with life.

It struck me today that the two other people that I know have had a hard time on Atripla, one of which, like me, had to give up on it,  and the other is seriously considering switching his regime after just 3 months, due to the difficulty of having to take it on an empty stomach, sleep disturbances, and now becoming very short tempered.

I know we're meant to be grateful that HIV drugs are so much easier to take than in the 90s, but I actually find it quite alarming that a drug that is meant to make me feel better, can diminish the quality of my life to such a extent that I actually ended up questioning whether it's a life I want to live. With any luck, the next combination I try will be far, far, easier to tolerate than Atripla. Here's hoping, eh?

Offline newt

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Re: ATRIPLA - REALLY struggling :-(
« Reply #49 on: November 08, 2009, 04:52:12 PM »
Efavirenz is the most discontinued drug due to side effects, perhaps 20% in the first year or so, and it is a personal sadness that all the efforts to get more choice in first-line therapy have not succeeded in the UK.

All drugs have risks and benefits, and "deadly" is not quite the word I would use to describe ARVs. The long term side effects, they do worry me personally, we are all one big guinea pig hutch.

But I am grateful that yesterday I replanted the front garden, went swimming n saw friends, and generally felt well, whereas 5 years ago I was sleeping 16-18 hours a day.

There is no reasons for people to suffer on their first combo these days, other than restricted drug choice.

I wish you well on next time round, whenever that is.

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

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #50 on: November 08, 2009, 05:50:27 PM »
''Efavirenz is the most discontinued drug due to side effects, perhaps 20% in the first year or so, and it is a personal sadness that all the efforts to get more choice in first-line therapy have not succeeded in the UK.''

I didn't realise that Efavirenz/Sustiva had such a high drop-out rate. If that's the case, it's curious that it's so widely recommended to treatment-naive patients.

Why do you think that all efforts to get more choice in first line therapy have failed in the UK, to date? Is it a cost issue, or one of drug/virologic efficacy?

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #51 on: November 08, 2009, 06:22:04 PM »
Keep  us  posted. I for  one  have  been  following  your  thread and a few others with  interest since I  take  Atripla.  Sometimes I  wonder  if  a change  would  make a quality  of  life  improvement,  but  I  am  not one  that usually  changes  something  that is  working at least as far  as  my  viral load.   It  seems like  for  a long time I  have had to  concentrate  on  trying  to  stay  alive.  maybe Quality  of  life   is  the  next  step.  Maybe since  it  looks  like I  might  have  the  cancer  behind me  and  most of  the  surgeries it is  is time to  reassess things.  I'll be following your  progress.  I  am  impressed that  you  feel  like doing  the  things  you  have. ;D I  haven't  even  thought  about  doing  those  things  in  about 4  years.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline Nestor

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Re: ATRIPLA - REALLY struggling :-(
« Reply #52 on: November 08, 2009, 06:54:16 PM »
Efavirenz?  I thought throughout this discussion that it was the Sustiva part that was causing the side effects Buffaloboy described?  Or is it both?  

« Last Edit: November 08, 2009, 07:05:41 PM by Nestor »
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline newone

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Re: ATRIPLA - REALLY struggling :-(
« Reply #53 on: November 08, 2009, 07:14:29 PM »
Efavirenz?  I thought throughout this discussion that it was the Sustiva part that was causing the side effects Buffaloboy described?  Or is it both?  



Different names same drug..
I am waiting for the one per day dosage of Truvada to finally be able to switch combo, I have not had a good night sleep since I started Sustiva but I have been sticking to this horrible combo just because it has been working on my numbers and in all sincerity I am probably scared to play with my fate/luck and possibly change something that works for something else that might not work as well as this present one.


« Last Edit: November 08, 2009, 07:19:43 PM by newone »
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 leatherman

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Re: ATRIPLA - REALLY struggling :-(
« Reply #54 on: November 08, 2009, 09:12:24 PM »
I know we're meant to be grateful that HIV drugs are so much easier to take than in the 90s, but I actually find it quite alarming that a drug that is meant to make me feel better, can diminish the quality of my life to such a extent that I actually ended up questioning whether it's a life I want to live. With any luck, the next combination I try will be far, far, easier to tolerate than Atripla. Here's hoping, eh?
technically the drug isn't really meant to make you feel better, it's meant to destroy the HIV inside of you. Of course, that (the lowering of the viral load) "should" make you feel better.  ;) And the manufacturers do try to lessen the toxic side effects so that the meds don't make you feel worse. (at least that's one of their goals) However, though the meds have changed through the years, these meds, as all meds do, still come with a caveat emptor warning. (read the package insert on any med to see all the side effects that have happened and therefore could happen to you) Of course all that "nasty" info about those side effects is always buried under the hype for any med. ;)

I HAD to stay on Sustiva for 9 months because there was nothing else to switch to at that point in time. However, like I did with the AZT and several other drug combinations that made me unbearably ill, I quit taking any meds at all. :o I also ended up in the hospital once again and nearly died (high VL and PCP). :o

This is known as the "quality of life" issue. For myself I have decided that puking every day of my life isn't a life worth living. I give any med that I'm prescribed at least a month to evaluate; however I stand by my decision that I simply won't take meds if they continue to make me puke every day for more than a month. I also decided that any med that would make me feel totally doped up every day of life (enough that I couldn't keep a job, couldn't drive a car, couldn't even hold my balance enough that it caused me to fall down the stairs and lie crumpled up (thankfully not broken up) at the bottome of the stairs while living alone in my house) is also a med I deem just "too dangerous" for me to take.

Of course, in a "do as I say, not as I do" sort of way :D, you should never just go off meds when you're having unbearable side effects.(hey! I learned my lesson though -  the hard way ;)) The first step is to talk to your doctor about methods to control the side effects. The second step is to switch to a different regime (which is much easier to do today rather than say in 1992 ROFL). the third step, if all else fails, is to decide what you will and won't accept in your quality of life scenario.

Every medication you take (anti-HIV, aspirin, whatever) has known side effects, along with the known "side effect" of NOT taking the medication. One known side-effect of aspirin is liver damage; a known side effect of not taking aspirin is that your headache doesn't go away. :D With HIV the known effect of not taking any meds is that nearly 100% of the time, it will progress to AIDS and then to death. ::)

When there are no options of medication to take to prevent that AIDS death that don't give you side effects, you just might have to chose for "feeling dopey", lipo, or barfing every day, etc to stay alive. Many HIV+ people from the 80s and 90s had to make just that choice but those people are still alive today with more med choices and even some options to treat the long-term side effects. Plus they've all lived a little bit longer towards the day there will be a cure. ;) ;D It's hard facing up to your own mortality and sometimes it's hard making the right choices that will keep you alive. But being alive is usually better than being dead.  :D LOL

It sounds like you've tried to give Atripla time to work; but the side effects are just too unbearable for you. You got advice and tried techniques to quell the side effects and then you discussed things with your doctor - and finally switched to another regimen. Good for you! You know your body, your head, and your situation best, and took good actions to improve your quality of life. (Thank goodness there were options! ;) ) Good luck with this new combo and a better quality of life.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #55 on: November 08, 2009, 09:34:38 PM »
Personally,  I  think  their big  selling  point  is  the  one  pill  per  day.   less chance  for  missed  doses  if  you only  have  to  take  one  pill.  I  take 23 pills  per day with all  my  meds. Even  with  the pill boxes,  I  often  forget  to  take  my mid  day  meds.  I  just  get distracted  and  forget.  This thread  just  reminded  me  I  forgot them again today.   It  is a lot  easier  to  remember to  take  first  thing  in  the  morning  and  right before bed  dosing. Or once daily dosing. Newt,  it  is great  to read you've  made  such  an improvement.  Sounded  like  you had a wonderful  day!
« Last Edit: November 09, 2009, 12:15:11 PM by pos2007 »
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline BT65

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Re: ATRIPLA - REALLY struggling :-(
« Reply #56 on: November 09, 2009, 05:48:10 AM »
Different names same drug..
I am waiting for the one per day dosage of Truvada to finally be able to switch combo,

I take Truvada once per day, but with Isentress.

Pos2007, you could get an alarm that would remind you to take your midday meds.   A lot of people do that, and it may help.

Edited to add:  I couldn't take Sustiva.  I gave it a couple months, and my mood didn't improve at all. And I didn't like feeling fu**** up either (and it wasn't a good high).  I think (most) doctors will listen to their patients when it comes to troubles with Sustiva, since it seems to be a common problem.
« Last Edit: November 09, 2009, 05:50:09 AM by BT65 »
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline tommy246

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Re: ATRIPLA - REALLY struggling :-(
« Reply #57 on: November 09, 2009, 05:52:36 AM »
I have just started atripla so far so good but i really want to change to issentress as soon as it becomes once a day to be taken with truvada,there are no central nervous system problems with this drug and no lipo probs sounds good although only in use 2 years and performs as well as sustiva also less minor side effects first few weeks.
I personally believe this will become the most popular combo when once a day is available.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Ann

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Re: ATRIPLA - REALLY struggling :-(
« Reply #58 on: November 09, 2009, 11:28:05 AM »
Thank you Ann for the information about the requirements to receive or send e-mails.

Also, though I haven't checked out your profile, please reply if you take any supplements, or do any alternative treatment to stay healthy and keep your numbers in check, or is it just good solid luck?


You're welcome, Kuttakamina. Glad to help.

I don't take any supplements. During my recent quarterly doctor visit, he declared me to be a LTNP (long-term non-progressor). He stressed that it has nothing to do with lifestyle or supplements or whatever - it's down to genetics. So yes, I'm lucky I've got the right genes. If you look at my profile, you'll see my results over the years.


My last Atripla tablet was taken on Thursday night and it's Sunday evening now and I'm already beginning to feel better. In fact, yesterday, I met up with a friend when we window shopped, took  a long walk and then went on to a cafe. And today I met another friend for lunch.

With any luck, the next combination I try will be far, far, easier to tolerate than Atripla. Here's hoping, eh?


Buffalo, I'm really glad to hear you're feeling better. There's no way I'd ever take Sustiva myself. No way! And good luck with your next combo. You have an excellent chance of finding one that works for you in such a way that it doesn't make your life a misery.


Efavirenz?  I thought throughout this discussion that it was the Sustiva part that was causing the side effects Buffaloboy described?  Or is it both? 


Efavirenz is the generic name, Sustiva is the brand name. You can usually tell if a drug name is generic or brand by whether or not it is capitalised. Generics are only capitalised when the word is used to start a sentence, but brand names should always be capitalised. If you look at the Treatments for HIV & AIDS page of this website, you'll see that all hiv meds have more than one name. It can be pretty darned confusing at times!

Different names same drug..
I am waiting for the one per day dosage of Truvada to finally be able to switch combo, I have not had a good night sleep since I started Sustiva but I have been sticking to this horrible combo just because it has been working on my numbers and in all sincerity I am probably scared to play with my fate/luck and possibly change something that works for something else that might not work as well as this present one.


Truvada is already once a day. Did you perhaps mean Isentress?


I didn't realise that Efavirenz/Sustiva had such a high drop-out rate. If that's the case, it's curious that it's so widely recommended to treatment-naive patients.

Why do you think that all efforts to get more choice in first line therapy have failed in the UK, to date? Is it a cost issue, or one of drug/virologic efficacy?


I think (and please note this is my opinion only, based on what I've seen and heard from others) that a lot of it is due to pure stubbornness on the part of doctors who give the efficacy of Sustiva a higher priority than quality of life. They're not the ones going through the side-effects and don't realise just how debilitating they can be.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline buffaloboy

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Re: ATRIPLA - REALLY struggling :-(
« Reply #59 on: November 09, 2009, 12:10:58 PM »
You're welcome, Kuttakamina. Glad to help.

I don't take any supplements. During my recent quarterly doctor visit, he declared me to be a LTNP (long-term non-progressor). He stressed that it has nothing to do with lifestyle or supplements or whatever - it's down to genetics. So yes, I'm lucky I've got the right genes. If you look at my profile, you'll see my results over the years.

Buffalo, I'm really glad to hear you're feeling better. There's no way I'd ever take Sustiva myself. No way! And good luck with your next combo. You have an excellent chance of finding one that works for you in such a way that it doesn't make your life a misery.

Efavirenz is the generic name, Sustiva is the brand name. You can usually tell if a drug name is generic or brand by whether or not it is capitalised. Generics are only capitalised when the word is used to start a sentence, but brand names should always be capitalised. If you look at the Treatments for HIV & AIDS page of this website, you'll see that all hiv meds have more than one name. It can be pretty darned confusing at times!

Truvada is already once a day. Did you perhaps mean Isentress?

I think (and please note this is my opinion only, based on what I've seen and heard from others) that a lot of it is due to pure stubbornness on the part of doctors who give the efficacy of Sustiva a higher priority than quality of life. They're not the ones going through the side-effects and don't realise just how debilitating they can be.

Ann

Hi Ann,

Why are you personally so against taking Sustiva? Is this just based on what you've heard from other people?

I think that you might have a point about doctors prioritising decent lab numbers over quality of life; if they had to take Sustiva  they might see just how difficult it can make life. My doctor even said that he was 'surprised' that I was having so many side effects as very few of his patients reported having trouble with Sustiva/Atripla at all.  Hmmm....it's sometimes difficult to know who, or what, to believe.

Offline Ann

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Re: ATRIPLA - REALLY struggling :-(
« Reply #60 on: November 09, 2009, 12:42:27 PM »
Hi Ann,

Why are you personally so against taking Sustiva? Is this just based on what you've heard from other people?

I think that you might have a point about doctors prioritising decent lab numbers over quality of life; if they had to take Sustiva  they might see just how difficult it can make life. My doctor even said that he was 'surprised' that I was having so many side effects as very few of his patients reported having trouble with Sustiva/Atripla at all.  Hmmm....it's sometimes difficult to know who, or what, to believe.

I won't take Sustiva because I've had bad reactions in the past from other drugs that carried a possible side-effect of depression or other CNS problems - as well as what I've seen people go through first hand, not just reports in this forum. I don't see why I should chance having a bad reaction to Sustiva when there are so many other meds available that are just as good. If I were to have to start meds tomorrow (I don't) I'd choose Reyataz boosted with Norvir, plus Truvada. If and when Isentress is approved for once-daily-dosing, I'd choose that plus Truvada.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline leatherman

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Re: ATRIPLA - REALLY struggling :-(
« Reply #61 on: November 09, 2009, 12:54:40 PM »
My doctor even said that he was 'surprised' that I was having so many side effects as very few of his patients reported having trouble with Sustiva/Atripla at all.
i heard the same sort of thing from several of my doctors. you'll find that anytime your issues are the exception to the rule, that your docs will be "surprised" and probably hard to convince that somehow the issue is happening and that it's not "your fault". (Next time you read a story about someone's medical complaint, in these forums or elsewhere, pay special attention. I bet you'll hear that some doctor is just not paying attention to their patient's complaint.) That's why it pays (by staying alive and staying issue-free) to stay on top of the information about your meds and your body's reactions, and to talk to you doctor when you have issues.

Sometimes I think doctors behave this way because quite frankly, a fussy patient takes up valuable time. Sometimes I think they don't pay enough attention because they just haven't seen that effect in a patient yet and so they're not used to hearing that complaint. Of course, an uncaring doctor or a doctor that's already written you off as a complainer obviously isn't going to care at all about your complaint either. Underneath it all doctors are just fallible people too, so it's hard to prescribe any specific motive to this kind of problem; but it's up to the patient to decide how best to handle it (complain more, get another doctor) for their own health needs.

When I see my doctor now, I go armed with printouts about med interactions, med side effects, etc (whatever my current complaint is), along with a graph of my charted numbers, and a list of meds I'm on, and have been on. Though he still doesn't believe me when I say that I know exactly when the norvir gel cap bursts in my gut ("no one else seems to have this issue"), my chart showing the exact dates and times that I was throwing up 6 to 12 times a month pushed him into finally helping me find a solution to that annoying side effect.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Nestor

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Re: ATRIPLA - REALLY struggling :-(
« Reply #62 on: November 09, 2009, 03:27:15 PM »
Quote
I don't take any supplements. During my recent quarterly doctor visit, he declared me to be a LTNP (long-term non-progressor). He stressed that it has nothing to do with lifestyle or supplements or whatever - it's down to genetics. So yes, I'm lucky I've got the right genes. If you look at my profile, you'll see my results over the years.

Ann, I was going to ask you the same question.  Looking at your profile, I see that the VL dropped dramatically after January of 2004.  Before that I see 80,000, 91,000, 96,000; the lowest is 17,000.  But after that, (excluding the most recent) the highest VL is 18,000, and there are a lot that are around 3,000.  So of course, even if it's unrealistic, I'm wondering if there's some secret here--did you make any change in your life after Jan. '04 that might account for the improvement?   

I also wonder what "Change of VL testing at my clinic" means.  I know you've said that you're planning to start a new thread about your recent developments, so if you're planning to address that there I'll wait for that! 

Quote
My doctor even said that he was 'surprised' that I was having so many side effects as very few of his patients reported having trouble with Sustiva/Atripla at all.  Hmmm....it's sometimes difficult to know who, or what, to believe.

I haven't exactly made a count, but reading this forum for the past week or so, I think it's safe to say that the ratio of people complaining about atripla side effects to people saying that they have no or few problems with atripla is about five to one.  Then again it's hard to know what to believe sometimes.  I was chatting online with someone recently (not in this forum) who told me that he was taking atripla and that it was "fine".  He assured me that it was "supposed to be the best."  I said that I was surprised to hear that--I mentioned hearing about a lot of people who were suffering from side effects: this was shortly after I'd first read not only your thread but also several others here complaining about atripla side effects.  (There are several in the "mental health" forum.)  No, he said, no problem.  Then later on in the conversation it just happens to emerge that he's on anti-depressants.  The next day we chatted again.  He complained that he hadn't been able to sleep at all the night before despite taking SIX sleeping pills of different kinds. And this is someone who claims not to be having a problem! 

Leatherman, your post contains a lot of great ideas and things worth thinking about!  However, headaches are my own personal albatross so since you mentioned them I cannot help responding to one point.  You say: 

Quote
. One known side-effect of aspirin is liver damage; a known side effect of not taking aspirin is that your headache doesn't go away.

I suffer worse headaches than anyone I know, but it would be unfair to these headaches to say that they NEVER go away.  I've never had a headache that did not go away, even if they sometimes take two days or so about doing it.  On the other hand, sometimes aspirin does nothing anyway.  But even if it did, I would far rather have headaches, however horrendous, now, than have liver damage or ulcers later in life. 

Unfortunately, as you point out, with HAART the cost/benefit analysis is different; the worst side effects are presumably better than the alternative.  But your own experience suggests a "third way"--taking a medicine for a while and then going off it.  Could you share with us some more details?  You mention being on Sustiva for nine months and then not taking anything.   How long did that last before the hospitalization episode you mention?  And did you start something else after that?  How has that been going? 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Online Miss Philicia

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Re: ATRIPLA - REALLY struggling :-(
« Reply #63 on: November 09, 2009, 04:03:13 PM »
There are no secrets with HIV.  Stop looking for them.
"I’ve slept with enough men to know that I’m not gay"

Offline Nestor

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Re: ATRIPLA - REALLY struggling :-(
« Reply #64 on: November 09, 2009, 04:32:14 PM »

Quote
There are no secrets with HIV.  Stop looking for them.

Actually, I'd intended that word "secret" to sound semi-humorous.  Obviously I know that if Ann had found some magic formula she wouldn't be keeping it to herself! 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline tommy246

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Re: ATRIPLA - REALLY struggling :-(
« Reply #65 on: November 10, 2009, 03:55:49 AM »
I think generally people doing well with atripla wont be on forums telling you there doing great unless they are regular posters or just starting as in my case but obviously if you need help and guidance with problems you turn to your doc and/or the forums. My doc told me 50% of his patients starting atripla have almost zero side effects, 40% very mild side effects that go after a couple of weeks  and 10% might have to change. I am 5 days in and almost zero 1 runny toilet episode put down to food and the other is on my first toilet stop 2 or three ours after dose i am a bit light headed (i guess this is the sustiva ) . Even if i am fine on this i will change to issentress when once a day i think this will be no 1 treatment soon.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline tommy246

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Re: ATRIPLA - REALLY struggling :-(
« Reply #66 on: November 10, 2009, 03:59:02 AM »
There are no secrets with HIV.  Stop looking for them.
Thats very true as a newbie it took me many months to realise that there are no secret remedies,spices,cow urine,herbs only haart,having said that taking somethings can have health benefits.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Online Miss Philicia

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Re: ATRIPLA - REALLY struggling :-(
« Reply #67 on: November 10, 2009, 10:15:11 AM »
Thats very true as a newbie it took me many months to realise that there are no secret remedies,spices,cow urine,herbs only haart,having said that taking somethings can have health benefits.

That's very accurate, Tommy.
"I’ve slept with enough men to know that I’m not gay"

Offline leatherman

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Re: ATRIPLA - REALLY struggling :-(
« Reply #68 on: November 10, 2009, 12:47:47 PM »
I haven't exactly made a count, but reading this forum for the past week or so, I think it's safe to say that the ratio of people complaining about atripla side effects to people saying that they have no or few problems with atripla is about five to one.
I've mentioned occasionally through my yrs here in the forums that I believe that a vast majority of the people that come here come exactly because they DO have issues. I think it's very likely that a large percentage of those lucky "one pill a day and everything is fine" people never think twice about having to turn to a site like this. (Heaven knows I'm not out reading up at a cancer, hepatitis, cirrhosis, alcohol-abuse, or cheating-spouse support site - cause I don't have any of those problems. ;) :D ) So I think it's only logical that you'll always see a skewing on any issue in these forums to be TOWARDS problems and not away from problems.

I would imagine AM has some demographics somewhere that would answer the question, "why did you first come to AM?" Although for the answer "looking for information", they might not have asked the follow-up questions, "were you looking for information because you were experiencing a health or mental problem?" Maybe though, a poll thread would give us a partial answer; but that really is a subject for another thread ;)

But even if it did, I would far rather have headaches, however horrendous, now, than have liver damage or ulcers later in life. 
Though there is a potential of liver damage (read the package insert), millions of people blithely pop aspirins (FYI which I happen to be highly allergic too!) everyday to quell their headaches. Just like with surgeries, many medications CAN also have a potential side effect of death. Doctors are not perfect, and medicines are not perfect; nor do meds always work exactly the same for everyone. It's not quite Russian Roulette but it is an underlying truth in the science of medicine.

One known side-effect of aspirin is liver damage; a known side effect of not taking aspirin is that your headache doesn't go away.
Although I was just trying to pick a common med and it's side effects (or in this case the side effect of NOT using the med) to illustrate my point, to be 100% PC, I should have said "a known side effect of not taking aspirin is that your headache doesn't go away AS QUICKLY."  ;) ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline leatherman

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Re: ATRIPLA - REALLY struggling :-(
« Reply #69 on: November 10, 2009, 12:49:10 PM »
Quote from: Nestor
Unfortunately, as you point out, with HAART the cost/benefit analysis is different; the worst side effects are presumably better than the alternative.  But your own experience suggests a "third way"--taking a medicine for a while and then going off it.  Could you share with us some more details?  You mention being on Sustiva for nine months and then not taking anything.   How long did that last before the hospitalization episode you mention?  And did you start something else after that?  How has that been going? 
YIKES :o, man, is that what you took away from me saying "However, like I did with the AZT and several other drug combinations that made me unbearably ill, I quit taking any meds at all. I also ended up in the hospital once again and nearly died."?!?!

I didn't suggest that (meaning treatment interruption) at all. Untreated HIV is a TERMINAL illness, no if's, and's, or but's about it. (Sure there are some LTNPs, etc but those are the exception not the rule) If my scrapes with death weren't enough proof, then having my untested and untreated partner die over a year and a half ago should be proof enough that AIDS will kill you quite dead if you don't take meds.

I have written out quite a lengthy reply to you about this that I will send via PM as I don't want to overly hijack this thread.  ;) In it, Ive tried to explain how miserable the treatment of HIV was in the early years, and how sometimes one had to chose "quality of life" over taking medications. Parts of it are very unnerving, and recalling all of those horrible years was very troublesome to me. Though I blithely talk about the death of a partner, being hospitalized and nearly dying a few times myself and even the death of my second partner, none of my words will ever convey the depths of how hard those choices were to make and the years of grief, sadness and depression. But I tried to explain why sometimes choosing to stop medication/treatment to gain temporary quality of life is always a possible option. Though, of course, it's a limited option that should only be taken when death is imminent.

However, I do have a synopsis to answer your questions within this thread.

Although I don't suggest that anyone go off their meds, I've chosen that route several times and been incredibly lucky. I believe I had valid reasons though as there were no other meds available during those years and the side effects of what was available was just too severe for me to handle. The first time I made this choice, I quit AZT so I felt good enough to care for my first longterm partner before AIDS killed him in 1994.

All-in-all, I made the choice to go off meds three times. But were they the right choices? Each time within 6-9 months I ended up in a hopsital near death. My body developed resistance to all sorts of meds, and it turned my HIV into a wild mutant strain which will always be harder to treat. If you look at the chart of my tcells and hiv VL in my sig line you can see the years of being on and off meds, and the years when I religiously took my meds. (who knows what long term damage all those "spikey years" have done to me.)

People, sick from all sorts of diseases, have to make decisions every day about their treatments. Are the long-term/short-term effects of the meds worth accepting vs. the long-term/short-term effect of their untreated disease. A lot of people will choose to deal with a lot of issues, problems and side effects rather than death; others don't. Many people don't survive chemotherapy, so sometimes given the option, people will decide on "quality of life" and go home to spend their remaining days without being "tortured" by treatments, hospitals, and doctors.

After 60 days in the hospital with AIDS and non-Hodgkins lymphoma, my second longterm partner quit treatment and went home. When he passed away 9 days, it looked like the decision had sadly been the correct option to take. Later I received his test results from the week prior to his death which showed, although he had been under HIV treatment and chemo, the tumors had continued to grow and his VL was still unchecked in it's climb.  Now in hindsight, I wish we had made the decision to take him home sooner, but there was no crystal ball to guide us. Just as there was no crystal ball guiding me back in the 90s when I made those same decisions about myself and yet didn't die.

Thankfully today there is a much wider range of anti-HIV meds, and for the newly diagnosed plenty of time for resistance to build up LOL before running out of the current arsenal of medications, unlike those early days in the epidemic. Although I can't tell you NOT to ever go off medication, I can tell you that it'll probably mean your death, so that better be what you're prepared to have that happen.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Nestor

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Re: ATRIPLA - REALLY struggling :-(
« Reply #70 on: November 10, 2009, 03:53:08 PM »
Quote
I've mentioned occasionally through my yrs here in the forums that I believe that a vast majority of the people that come here come exactly because they DO have issues. I think it's very likely that a large percentage of those lucky "one pill a day and everything is fine" people never think twice about having to turn to a site like this. (Heaven knows I'm not out reading up at a cancer, hepatitis, cirrhosis, alcohol-abuse, or cheating-spouse support site - cause I don't have any of those problems.   ) So I think it's only logical that you'll always see a skewing on any issue in these forums to be TOWARDS problems and not away from problems.

I would imagine AM has some demographics somewhere that would answer the question, "why did you first come to AM?" Although for the answer "looking for information", they might not have asked the follow-up questions, "were you looking for information because you were experiencing a health or mental problem

This is really true!  In any school or other institution, the content majority never say anything.  It's the ones who have problems about something that come to talk about their problems.  That definitey creates the impression that there is a lot more discontent out there than perhaps there is, proportionately.  

With regard to this forum, however, I would be an exception.  When I was first diagnosed and distraught about it, I never came here or to a forum like this one.  Now nothing has happened to drive me here; perhaps I just thought that the time to gather information about treatment, side effects, and the long term effects of HIV is now, before I run into problems with these things down the road.

Quote
I think generally people doing well with atripla wont be on forums telling you there doing great unless they are regular posters or just starting as in my case but obviously if you need help and guidance with problems you turn to your doc and/or the forums. My doc told me 50% of his patients starting atripla have almost zero side effects, 40% very mild side effects that go after a couple of weeks  and 10% might have to change. I am 5 days in and almost zero...

It's actually quite important that we should hear this; otherwise reading some of these threads, without keeping the "skewed demographics" question in mind, could give us a distorted image of the meds.  I'm sorry that Buffalo and some of the others are in that ten percent, though; still ten percent is still enough that a doctor should not exactly be "surprised" when one is in it.

Quote
Although I was just trying to pick a common med and it's side effects (or in this case the side effect of NOT using the med) to illustrate my point, to be 100% PC, I should have said "a known side effect of not taking aspirin is that your headache doesn't go away AS QUICKLY."

Of course I was being tongue-in-cheek about headaches never going away; God knows sometimes they feel as if they'll never go away!

Leatherman, I very deeply appreciate all the time you've taken to share with us your experiences and knowledge!  The part of your previous message which I had had in mind when I wrote what I did was:  

Quote
This is known as the "quality of life" issue. For myself I have decided that puking every day of my life isn't a life worth living. I give any med that I'm prescribed at least a month to evaluate; however I stand by my decision that I simply won't take meds if they continue to make me puke every day for more than a month. I also decided that any med that would make me feel totally doped up every day of life ... is also a med I deem just "too dangerous" for me to take.

I know I expressed the idea badly, but this was what I meant by "cost/benefit" analysis. (I actually hate that businesslike term and I'm not sure why I used it.)  For reasons that I don't need to go into here, I would rather suffer with headaches than take an aspirin, and I would rather lie awake at night that take a sleeping pill.  After seeing what chemotherapy did to my mother, I feel that way even about cancer: if they told me I had cancer today I think I would rather let it take its course.  But I do not feel that way about HIV and HAART; I would rather take HAART than succumb to pneumonia.  But that assumes that the side effects of HAART are reasonable; as you suggest above, there is a point past which the choice is not longer so clear.  As someone said in an old movie, "There is a price no man will pay for life."  But I hope I did not suggest that I took your previous message as recommending "medicine holidays" or not taking meds at all; I read the paragraph following it--the one that began "Of course, in a "do as I say, not as I do" sort of way , you should never just go off meds when you're having unbearable side effects.(hey! I learned my lesson though -  the hard way."  

Anyway, I hope whatever you are taking now has less dire side effects than the ones you describe above, and I hope whatever Buffalo takes next will be far kinder to him than Atripla has been too!  
« Last Edit: November 10, 2009, 03:54:58 PM by Nestor »
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline leatherman

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Re: ATRIPLA - REALLY struggling :-(
« Reply #71 on: November 10, 2009, 04:58:30 PM »
After seeing what chemotherapy did to my mother, I feel that way even about cancer: if they told me I had cancer today I think I would rather let it take its course.  But I do not feel that way about HIV and HAART; I would rather take HAART than succumb to pneumonia.
Anyway, I hope whatever you are taking now has less dire side effects than the ones you describe above,
Seeing what chemo did to my Jim, knowing how sick I've already been, already having faced up to my mortality, ain't no way you'll catch me lying in an oncology ward either - unless I'm there napping while watching over a friend.

It's funny too that you should mention the pneumonia. No matter whether I was on or off meds, the ONLY med I never failed to take regularly was the Bactrim. Anything to keep from having PCP again. ;) I took that for a decade and only quit it a while ago after my tcells had stayed around 250-275 for nearly 2 yrs. Part of me has been just a little worried about that now that my last labs dropped back down to 209. But I'm thinking "happy thots" (cause Ann told me too. ROFL  :D ) Hopefully that count was just a fluke after all that's gone on with me moving from OH to SC recently.

The meds I'm on now (reyataz, videx ec, norvir, viread) have been the ones to finally get me to undetectable after all these years, so I really like them. I only barf from them about 4 times a month now. :o Hey! I know that might sound pretty icky yet, but when you've had meds where you puked literally every day, this is nothing. why gosh! I only avg once a week now. (this avg of 4 X a month this year is down from 6 X a  month I averaged the last 4 yrs) Compared to the history I have with the meds, this avg is quite incredible - plus I've been undetectable for nearly the last 2 yrs. ;D Reworking that quote some, a little bit of puking is a tiny price to pay for life.  ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline OneTampa

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Re: ATRIPLA - REALLY struggling :-(
« Reply #72 on: November 10, 2009, 09:05:59 PM »
I though that I would list my experience with Sustiva as it is may be somewhat different from others on the boards.

The following is my post from November 2008 that remains true this November.   

"...You are correct. Not everyone can tolerate Sustiva.

When I started Sustiva in 1999, I took the 600mg dose.  The first week I had to grip the walls to walk down the hall.  I felt drunk and disoriented. It was scary.  I promptly told my doctor about the effects.  He suggested that I reduce my dosage to 400mg a day because he said that he read a study listing results that a 400mg dose proved just as affective as 600mg.  I switched to the lower dose and that did the trick. Next year will be 10 years I've been on Sustiva  and the only effects, thus far, I experience are tolerable as noted in my previous post to this thread.

I continue to find it interesting how these HIV medications affect nearly everyone differently. I know that I have had trials and errors over the last 23 years..."
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline leatherman

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Re: ATRIPLA - REALLY struggling :-(
« Reply #73 on: November 10, 2009, 09:56:37 PM »
He suggested that I reduce my dosage to 400mg a day because he said that he read a study listing results that a 400mg dose proved just as affective as 600mg.  I switched to the lower dose and that did the trick.
in the long long post I send poor Nestor detailing the "horrors" of my life  :D I mentioned that quite frequently overdosing was a problem with meds in the 90s. (all that AZT I took, it's no wonder it made me sick) Wonder how different things would have been if my doctor has just suggested a dosage adjustment?  ???
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline pos2007

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Re: ATRIPLA - REALLY struggling :-(
« Reply #74 on: November 10, 2009, 10:53:35 PM »
Ditto to  the  cancer. Just  had a prostatectomy in August. If  I  had  to  do  it  over  I  wouldn't  do  it  again.  Maybe  same  with  the  chest  tumor 2  months ago.  I  think  the  next round is going to get to  run it  own  course. Maybe  that  will  help keep social  security from  going  broke  ,  if  I  never   get to  draw  any.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline mecch

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  • red pill? or blue pill?
Re: ATRIPLA - REALLY struggling :-(
« Reply #75 on: November 11, 2009, 06:26:46 AM »
I really had to fight to get switched off that sustiva/stocrin.  Had to get my psych to talk to my hiv doc cause he kept saying the side effects had nothing to do with the drug.  And pushing me to run through different psychotropes with the psych, trying to balance my crazy feeling.  All it took was a drug switch. I would have dealt with the craziness if that was my only choice of drug, but it wasn't. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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