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Author Topic: ATRIPLA - REALLY struggling :-(  (Read 14574 times)

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Offline buffaloboy

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  • Posts: 159
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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  • Posts: 116
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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  • What we love, we shall grow to resemble.
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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  • Posts: 57
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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  • Google and HIV meds are Your Friends
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

Offline pos2007

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  • Posts: 116
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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  • Member
  • Posts: 435
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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  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
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
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 buffaloboy

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  • Posts: 159
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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    • Num is sum qui mentiar tibi?
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

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 leatherman

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  • Google and HIV meds are Your Friends
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

Offline Nestor

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  • Posts: 430
  • What we love, we shall grow to resemble.
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.
"Iíve slept with enough men to know that Iím 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.
"Iíve slept with enough men to know that Iím 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

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

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

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 pescaŪto 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

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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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. 
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

 


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