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Author Topic: ATRIPLA - REALLY struggling :-(  (Read 14043 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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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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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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  • 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"

 


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