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Author Topic: Serious Atripla Concerns - any recommendations?  (Read 2743 times)

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Offline SteveS

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Serious Atripla Concerns - any recommendations?
« on: August 16, 2013, 09:47:26 PM »
Thanks for reading.

I am 3 months poz, had very good starting numbers (VL of 400 and CD4 of 930) was put immediately on Atripla and was UD in 3 weeks with CD4 at 1035.

The problem is I have developed an almost constant tic / astigmatism in my eye(s) and starting three days ago in two of my fingers. In one way - it is slight. I don't think people would notice it - they would think I am blinking or something. In another way, it is almost constant and if anything is getting worse, not better.

So - I have been three months on the Atripla with this being the only side effect, but a very bothersome and seemingly increasing one. I do notice it is worse if I eat late at night, but it is present even when I don't eat hours before taking it.

Of course I will speak to the doc - but I already know he is very "pro-Atripla" because he feels it is the most studied in terms of effectiveness and long term issues.

Comments? Just live with it? I hate changing something that is managing the virus so well? This is all new to me. The more specific recommendations you might give, it would be so much appreciated.

Offline Jeff G

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Re: Serious Atripla Concerns - any recommendations?
« Reply #1 on: August 16, 2013, 09:55:57 PM »
Atripla is known for central nervous system issues for some people . I endured years of Atripla simply because my doctor liked it and I was afraid to make a change .

Bottom line , tell your doctor how you feel and do not be afraid to switch combos if that's what you want to do . You are going to live a long time on HIV meds so make it as comfortable on yourself as you can . Best of luck . 

Offline SteveS

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Re: Serious Atripla Concerns - any recommendations?
« Reply #2 on: August 16, 2013, 10:05:24 PM »
Jeff -

I really appreciate your response, especially since I know you have a lot of knowledge.

My concern / confusion is regarding resistance. If I go "off" the Atripla, but it really does work for me, and go on something else that for some reason does not, will the Atripla work if I get back on it? Is there any risk in going off of it? Also - since you were in a similar situation as this - what other meds would you recommend me asking the Doc about?

Thanks so much - and anyone else, please chime in.

Offline Jeff G

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Re: Serious Atripla Concerns - any recommendations?
« Reply #3 on: August 16, 2013, 10:42:59 PM »
Resistance issues can happen when you miss doses of your meds at a rate of less than
95 % adherence . I had to stop Atripla more than once and never developed resistance .

If you stop abruptly you can more than likely go back and resume treatment with the same drug ( Atripla ) . You should expect a good result either way . 

Offline mikeyb39

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Re: Serious Atripla Concerns - any recommendations?
« Reply #4 on: August 17, 2013, 01:11:29 AM »
you need to keep an eye on that.  Atripla caused the nerves in my feet and hands to start dying.  if my doctor hadn't changed my script I wouldn't be able to walk or put on a pair of shoes.   It got worse and worse until I changed meds.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline newt

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Re: Serious Atripla Concerns - any recommendations?
« Reply #5 on: August 17, 2013, 05:15:05 AM »
All modern combos work as well as each other. Insist on a different one. I can't really see what your doc can do if you tell him you do not consent to treatment with efavirenz (the drug in Atripla prob responsible for the issues) other than prescribe something else.

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

Offline Ann

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Re: Serious Atripla Concerns - any recommendations?
« Reply #6 on: August 17, 2013, 07:40:02 AM »
Normally when you switch combos, you do it immediately; ie you take your last dose of Atripla one day and start on the new combo the next. This means there's no way you'd develop any resistance.

Usually the only time when people have an interval between combos is when they stop due to a rash. When this is the case, the interval gives the rash time to heal and go away so you start with a "clean slate" for your next combo. This wouldn't be necessary in your case.

Two of the meds in Atripla would very likely be the same in your new combo, you'd probably only be switching out the Sustiva portion of the pill. The two meds that would likely stay the same are the two meds in another combo-pill, Truvada.

For me, the fact that this side effect is noticeably worse when you have eaten too close to taking your pill means it definitely points to Atripla (Sustiva) being the cause.

Don't let your doctor brow-beat you into staying on it. Remind him that YOU are the one who has to take the meds and it's unnecessarily impacting on your quality of life. It's unnecessary because there are other, equally effective combos you can take.

Good luck! :)
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Offline eric48

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Re: Serious Atripla Concerns - any recommendations?
« Reply #7 on: August 17, 2013, 07:04:58 PM »

Welcome to the forums. Hope you will find help and provide help to other when you become more familiar with some issues

I went (briefly) through your previous posts.

I also had a discussion with my Doc, who, like yours, is in favor of test and treat (regarless of CD4 count and VL)
Your initial number are impressively off the chart (high CD4 and Low VL) and you should know that you have never been at risk of whatever malignancy you may in read about.

(Some researchers think that the 'entry' route plays a role in the fitness of the virus)

One of the lowdown in test-and-treat is that it does not give the patient the opportunity to recover from the diagnosis shock and the patient is all of the sudden falling into a ever spiralling anxiety for cancers, neurologic impairement, lypo, etc.

So you are your normal self (never sick, never been to a hospital) and all of the sudden you get a life threatening diagnosis and, whithin a blick of an eye a medication that carries a page long of side effects

That is a lot of stress on the patient.

I think this is way under estimated.

I am not on Atripla and I do not like to comment about meds I do not take. My Doc is not an atripla fan (although he does precribes it on occasion). Yet, I do understand why many docs are pro-Atripla.

The decision tree is easy enough to understand.
you need 3 molecules
A- there are very few 'classic' combos that do not contain 2 NRTIs. In fact some NRTI sparing regimen are under clinical trial, but there seems to be some thing special about NRTIs that make them pivotal to any treatment
B- Because combinaison drugs are easier to take (and have a longer life time in the body) the doc choice is almost limited to Truvada (TNF+FTC) or Epzicom (ABC+3TC) (each have their pros and cons)
C- The initial risk for initial side effects seems to be in favor of Truvada. Truvada contains 2 of the 3 molecules in Atripla
D- Choose between the NNRTIs route or the PI route (where I live RAL Isentress and Maraviroc are considered too expensive and are reserved for second line)
E- Your resistance chart has to be taken into account. If your unwanted host has a mutation that forbids NNRTIs, then ...
on the other hand 'older' PIs are more prone to lipid managment issues, but they may work better on people with a very low initial CD4 count, so they are not out of the picture.

So in your case, if NNRTI is OK with the resistance chart, the choice is easy.

F- you are not eligible for Viramune (NVP) , an NNRTI, that is OK and unexpensive and once daily, but not if you are treatment naive and CD4 > 400 (males , 250 females)
So this one is out of the picture, in your case, for the moment...

Now, back to your nerve problems (as they seem to be)

In NYC, you should be able to find a good neurologist to help you sort things out.

Mine did a very good job and I had peripheral neuropathy tests (twice) and MRI (brain and hip)
He prescribed vitamin B12 (oral supplementation, not the injection route) and within a few months my (painful) nerve issues where gone.
You do not need a Rx to get B12. Get the injectable for a few bucks and drink it, that is all.

IMHO, it is important to have an expert opinion on whether this is CNS related (central nervous system) or peripheral.

and do not neglect stress...

If CNS related, then, Sustiva (EFV), your molecule # 3 in Atripla is the usual culprit.

If a change of the NNRTI is necessary, your doc has a vast choice of NNRTIs that are less prone to CNS effect
- either go for a smaller molecule (less efficient in hard to treat patient, but very well tolerated on the long run : Viramune. It was released before EFV
- either go for a larger molecule (larger molecules are usually better tolerated but have a lesser ability to enter every anatomical compartment. These molecules are usually newer, since they have been approved only recently.

By the time you have this sorted out, then you will probably at month 6 into treatment. At that time come a great news: you become eligible for Viramune.

I maintain a thread on Viramune here:

Therefore, I have been in contact with quite many people who switched from EFV to NVP: 100 % customer satisfaction.

Do not stress over a meds change. Stress will certainly not help your condition...

Hope this helps

NVP/ABC/3TC/... UD (non-infectious) ; CD4 > 1000; CD4/CD8 ~ 2.0   stock & donations : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: use of NVP & 3TC generics
https://clinicaltrials.gov/ct2/show/NCT02157311 ;
2016: use of granted patent US9101633

Offline cicero

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Re: Serious Atripla Concerns - any recommendations?
« Reply #8 on: August 18, 2013, 02:20:49 PM »
Hi SteveS - I'm new to HIV and Atripla (a little over a week in) and not having many side effects myself except for fatigue in the mornings that kind of lingers.  I don't have much to say but I wish you best of luck with your decisions and working with your doctor on what your treatment should be, if you decided to change it.  Please post here as you follow up with your doctor and what you end up deciding to do, and how it works out for you.

Eric48, I think you are so right when you wrote "So you are your normal self (never sick, never been to a hospital) and all of the sudden you get a life threatening diagnosis and, whithin a blick of an eye a medication that carries a page long of side effects.  That is a lot of stress on the patient. I think this is way under estimated."  This is definitely what I'm experiencing. 

I'm fine with the Atripla and when I have my second batch of blood work in early October I'll know if it's reduced my viral load and raised my t-cells, but in the meantime, reading people say things like it almost caused them to lose their ability to walk permanantly or that it messed their central nervous system up to the point they can't think freaks me out. (I gotta keep a job to keep health insurance to keep alive, like most of us in the USA.)

I have a high threshold for irritation and pain and I can put up with a lot for the greater cause of health but I am petrified something really serious is going to sneak up on me as a result of these three powerful medications in the Atripla pill.  Still reading and learning.
"How could this happen to lovely me?" -Jacqueline Susann

Offline bill33

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Re: Serious Atripla Concerns - any recommendations?
« Reply #9 on: August 21, 2013, 12:25:34 AM »
I took Atripla for years and dealt with the side effects the whole time. Some people never get over the side effects which can be a problem. Finally we changed to complera with few side effects. So far everything is looking good.


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