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Author Topic: Recently started on Atripla, should I be worried about.... ?  (Read 1076 times)

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Offline EUBoy

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Recently started on Atripla, should I be worried about.... ?
« on: March 15, 2014, 03:52:13 PM »
Hi,

I was diagnosed in January last year, and last year was pretty shitty for me in non-medical ways, with work, being dragged into court cases (only as a witness, but still very involved), and generally being worn out physically and mentally.

In the autumn of last year my CD4 had dropped to 420 and my doctor refered me to a treatment service. When I started on Atripla my CD4 was 360.

Since starting about a month ago I have had a couple of nights of very vivid dreaming, some nausea in the first couple of days, and generally feeling very slow in the mornings.

My only real concern is the lack of clarity I have when I wake up, I feel like I am a zombie when I wake up, I feel disconnected from myself for a couple of hours at least, and even into the afternoon I feel mentally slow, like it's harder to connect my thoughts, sometimes starting sentences, and just giving up because I have no idea what I was thinking to say.

Im still very early in my treatment (just 5 weeks in), and the dreams and nausea have not happened for the last 3 weeks, and even before then it was only a couple of days in the week. Should I be concerned about this lack of clarity I have in the mornings? Have other people experienced that this happens and can go away, or is it a possible sign that Atripla is not for me?

I have always had the odd day every couple of months where I feel depressed, ever since my late teens (Im now early 30's), so although I have had a couple of weepy days since starting treatment, it's not particularly out of the ordinary, and I am keeping an eye on that to make sure it doesn't become more frequent.

I don't have a big friend network, the only close friend who knows my status lives very far away from me, my family and (geographically) closer friends do not know about my health issues, and I don't feel that it would be a choice to talk about this with them.

Any input is appreciated.

many thanks.

Offline Ann

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #1 on: March 15, 2014, 04:29:24 PM »
Hi EUboy, welcome to the forums.

The problems you're having with Atripla are very common and stem from the Sustiva component. You should read this thread - http://forums.poz.com/index.php?topic=47901.0;all where people talk about their Atripla/Sustiva experiences.

Your clarity problem might get better in time, and it might not. There are other combos you can take and there's no real reason why you should have to put up with something that is affecting your quality of life. See what you think after reading the thread I linked you to above.

Ann
Condoms are a girl's best friend

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

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

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

Online Jeff G

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #2 on: March 15, 2014, 04:45:18 PM »
Welcome to the forums . I think you will find we are a chatty group whenever you want or need to talk so please do not feel that you are in this alone because you are not, not any more . 

I would also like to echo what Ann said ... you have choices and if this combo does not work out there are more to try .

Offline EUBoy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #3 on: March 15, 2014, 04:51:22 PM »
Thanks Ann and Jeff :)

I had a read through the thread you posted Ann, it was very informative, useful, and also bloody scary!

I have read a lot about Atripla and side effects before, but more clinical rather than actual experiences. I of course would rather not have this groggy sensation and the odd mental fart in the afternoon, but as Im just starting out on this medication path, I also don't want to jump ship away from Atripla so soon if it is all just possibly temporary - I have understood that if I stop on Atripla now, I might never be able to use it again in the future (or am I being dumb?).

From reading the thread Ann linked, I can see that my experiences are not isolated, and that has reassured me, but some of the other things people have experienced have scared me a little, so I hope my side effects stop here and that I can stay on Atripla problem free for many many years ;)

Offline eric48

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #4 on: March 15, 2014, 04:57:18 PM »
Welcome
Most lilely will get better and fade out
If not, combo change
Atripla is wellsupported by most
Yet about 10% drop out and switch within 1y.
Keep an eye on it and discuss w/ doctor
Docs are familiar with this issue
Best take 2 h. After evening diner
You should be fine
Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline Ann

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #5 on: March 15, 2014, 04:59:53 PM »

I have understood that if I stop on Atripla now, I might never be able to use it again in the future (or am I being dumb?).


Nope! If you stop Atripla and start a new combo the very next day, there is absolutely no reason why you couldn't go back to Atripla at some point. And you're not being dumb or even stupid for that matter.

Condoms are a girl's best friend

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

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

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

Offline eric48

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #6 on: March 15, 2014, 05:01:26 PM »
- I have understood that if I stop on Atripla now, I might never be able to use it again in the future

True is the cause was virologic. Failure
Not true is cause was convinience etc .

Hope this jelps
Mob.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Online Jeff G

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #7 on: March 15, 2014, 05:06:42 PM »
Many people adjust very well to Atripla so please don't be frightened by some of our experiences . Try to look at it as knowledge is power now that you are aware of what to look out for . If it did come to pass that you are not tolerating Atripla its simply enough remedied and you will be no worse for wear .

Offline Dan0

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #8 on: March 15, 2014, 05:08:05 PM »
Hi EU

I was one of the many who posted in the Atripla thread and that's really the reason I came to these forums.  Let me clarify a couple things -

Yes, there can be side effects. My partner and I started on Atripla at about the same time and he was on all sorts of 'stuff' before Atripla and even went off medication for a long time due to the horrible side effects of some of the earlier drug regimens. To this day - he has not switched and I couldn't convince him to change medications if I paid him!  He's content, happy, no side effects, no hazy feelings, dizziness, etc. He's fine. My side-effects manifested over time but I had a good run up to that point! There is no imperative that you WILL have these effects.

One of the issues that I posted about was the random dizziness that affected me.  The thought was, after everything else was exhausted, that is must be the Atripla.  When I switched, the sporadic bouts went away .... but guess what....they're back.  The other issues I mentioned have not returned.  So, in that instance, I was quite possibly blaming that pill for something that was really being caused by something else.

Honestly, I'm extremely grateful that there was this pill when i started on medication in 2006. It allowed me to see some pretty impressive results and lessened any concerns I had related to medication working. I had some of the usual affects for the first few months (dreams, mostly) and then they went away, too. Eventually, however, it ran its course and manifested some other side-effects that I chose to address.  Fortunately, there are different options available to us now and I switched.  Couldn't be happier!  That said, neither could my partner who has been on Atripla for 8 years going. The GREAT news is that we have more options now!

Just don't read the thread and put your imagination into overdrive - where every itch induces a panic that it is side-effect when it very well may be just an itch.
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Ann

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #9 on: March 15, 2014, 05:15:30 PM »
True is the cause was virologic. Failure
Not true is cause was convinience etc .

Hope this jelps
Mob.eric

Eric, how is that going to help when it makes absolutely NO sense? And don't bother answering that question, it's rhetorical.

EU, what you've probably read about concerning people stopping a med and not being able to use it again is when they've stopped incorrectly - ie stopped in fits and starts (went for periods of taking their meds, then stopped for a time, then started again and stopped again etc). Not taking your meds consistently can lead to resistance ("virologic failure" that Eric mentioned) and if you become resistant to a med, it won't do you any good if you try to take it again.

BUT - if you do a med switch with a doctor, you'll get a new script that you will fill, and you won't stop taking the Atripla until you have the new meds in hand and can start taking them. Changing meds this way, the right way, will not lead to resistance issues.

I think Eric's been on a bender lately for all the sense that he's (not) making recently. Feel free to disregard.

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 EUBoy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #10 on: March 15, 2014, 05:22:17 PM »
Thanks Ann, yes, I think this must be what I had in mind.

I was 'warned' by the treatment center that starting with Atripla was more 'demanding' as it requires quite high compliance in order to prevent resistance - I realise now this must mean people who skip it for a couple of days, then take it again, then skip a few days again. Thankfully I have not forgotten to take a single pill so far, I got a handy little pill wheel from my nurse numbered 1-7 so I can fill it up for the week and easily see if I have already taken my pill or not.

I also take it right before bed each day, so I don't have to (normally) ponder if I have taken it already or not, as I never take it until bedtime :)

Online Jeff G

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #11 on: March 15, 2014, 05:44:08 PM »
Thanks Ann, yes, I think this must be what I had in mind.

I was 'warned' by the treatment center that starting with Atripla was more 'demanding' as it requires quite high compliance in order to prevent resistance - I realise now this must mean people who skip it for a couple of days, then take it again, then skip a few days again. Thankfully I have not forgotten to take a single pill so far, I got a handy little pill wheel from my nurse numbered 1-7 so I can fill it up for the week and easily see if I have already taken my pill or not.

I also take it right before bed each day, so I don't have to (normally) ponder if I have taken it already or not, as I never take it until bedtime :)

Actually Atripla is pretty forgiving because it stays in your system a long time or has a long half life . Its all allot to take in I know but it wont be so overwhelming soon enough .

In the beginning before you are undetectable its of greater importance to make sure you take every dose but once undetectable missing now and then is not usually going to cause problems . 

Offline eric48

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #12 on: March 15, 2014, 07:58:25 PM »
if I stop on Atripla now, I might never be able to use it again in the future

That understanding is CORRECT in ALL instances

The phrase Atripla was more 'demanding' can not be fully appreciated

More demanding than what ? a 5 pills x 3 times a day ?

I think what the doc meant is that in some of its aspects Atripla is LESS forgiving than others

Let me clarify where Atripla is said to be LESS forgiving and where Atripla is said to be MORE forgiving

- If if issue is ONE time missed dose OR one dose taken a few hours later, then Atripla is said to be more forgiving than others : in other words, if one day, you miss one only dose, or if you are late by a few hours or early by a few hours: there is not need to ask here nor your doctor; a ONE time missed dose OR one dose taken a few hours later of Atripla is NOT a problem
Some in that aspect Atripla is less demanding (than some older meds, for exemple)

ON the other HAND
- If the issue is ERRACTIC usage of the pills (like you take 2 days, then stop for the week end, then some 2 -3 days then stop... like you would do with any OTC pain relief, then YES Atripla is LESS forgiving than others
and you doc was right to warn you

So adherence has to be very good, but not to the extend that you will have to take the pill at one given hour, sharp, nor have to rush to your doc, in tears, if you have missed ONLY one dose , one night, because you fell asleep before dosing.

Most likely you will get yourself organized and I would recommend some ways for you to remember that you have taken your pill (such as a check on a calendar or use of a pill scheduler); sometimes, people get confused and don't remember if they did of did not. The 'did I turn off the gaz ? ' thing.
It is OK if this is a one time thing.
If this happens more than one time, get yourself a method.

That being said, you will also get to learn that 'forgiving' or 'demanding' is also relative to how your virus is controlled.
For exemple, when I started treatment, I took my dose on TOP of the designated hour
Now that I have been UD for 3 years, I take my pill ANY time before 9 AM (could be 5 AM, 6...)
But I have never missed a day

Aidsmeds has good lessons, so you may want to have a look

 Concerning the dizzy effects of Atripla, I will let other posters confirm (since I am not on Atripla)
but, from what I read, I would give a few weeks id this is tolerable

If the things turn untolerable, or, more difficult to perceive, you are sliding into depression, you should express your concern to doc without delay

hope this jelps

Eric


NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline eric48

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #13 on: March 15, 2014, 08:11:42 PM »

I don't have a big friend network...

Now... You do  ;)

Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline EUBoy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #14 on: March 16, 2014, 03:30:51 AM »
Thanks for your reply Eric, it was useful and reassuring :)

You have all been so very kind.

Offline MadisonTeddy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #15 on: March 17, 2014, 09:40:13 AM »
Hello EUBoy...My 2 cents...Positive in Dec. 2013...Started Atripla and am just finishing 90 days...Never missed a dose or late more then an hour or 2...All of the different side effects disappeared after about 6 weeks...Most were gone in 2 weeks...I am so glad all I have to do is take one pill a day...So damn fortunate...Life is really back to normal, more or less and the first numbers show this pill is magic and a life saver... Hope your experience is as good as mine...Be patient and adhere...

Offline EUBoy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #16 on: March 23, 2014, 06:43:16 AM »
I have my first proper numbers follow up this Thursday, have done a couple of blood tests already, but just to check for function and chem7 sets, so Thursday afternoon I should find out what my new VL is - im quietly optimistic :)

Offline Ann

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #17 on: March 23, 2014, 06:55:23 AM »
im quietly optimistic :)

And so you should be! Much better than quiet desperation. ;)

Your VL should have gone down significantly in the month or so that you've been on meds, but don't be too upset if you're not completely undetectable yet. You will be soon. What's most important is that you do see a drop.

How's the head? Is Atripla still "doing it in" or has that subsided a bit more since you first asked about it?

Don't forget to keep us posted on your new numbers.

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 MadisonTeddy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #18 on: March 23, 2014, 09:55:57 AM »
EUBoy...Keep us posted...In 60 days I went from 65,000 to 283...I am now 100 days and will wait 20 more to see if I am UD...Wishing you the best and hope the other side effects are tapering off or disappeared....

Offline EUBoy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #19 on: March 24, 2014, 05:47:23 PM »
Hello again you lovely people! :)

Well, that delightful pill is still causing me some problems, but not as many as it was when I first started this thread. I think in retrospect I was also a bit depressed that day and was feeling sorry for myself and wanted to reach out to people who might understand what I was feeling - and you did, and you were great, and I am very thankful for the kind advice I have had.

I am still slightly slow in the morning, late last week I managed to bang the back of my foot in the bathroom door because my leg was not where I thought it was when I closed the door, so I took a decent chunk out of the back of my ankle, very uncomfortable, but just a little accident.

Otherwise things seem quite a bit better - when I started on Atripla I was tired a lot (my CD4 was 360) and I would get odd pains in the lower part of my legs - both these things have gone within the last month, and I have enough energy now that I have started back at the gym, and after my employment meltdown last year I am now starting my own company, so I am keeping myself busy.

I still take the tablet right before bed, haven't missed a dose yet, and I guess I sleep through most of the side effects, apart from the odd day when I wake up to pee about 2-3 hours after I go to bed, and then I feel decidedly unwell, but I just go to the bathroom and then quickly back to bed.

My blood tests so far have all been good (chem7) and my gene testing shows I can use all avaliable medication should I ever need to switch away from Atripla - and on the 27th I will get my first VL numbers. I was 20,000 when I started medication, and my nurse has told me she hopes for 200 or lower now - so fingers crossed! :)

P.s. I bake ;)


Offline Ann

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #20 on: March 24, 2014, 06:19:52 PM »
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 EUBoy

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #21 on: March 27, 2014, 03:32:35 PM »
New update! :)

Was back at the treatment center today for my latest results, my VL has dropped from 20,000 to 180, and my CD4 has jumped from about 370 to 680!

I am still a little slow in the mornings, but it's almost not noticeable anymore, and the weird dreams have stopped, so i'm really very happy today - I think tomorrow I shall bake myself a cake! ;)

Online Jeff G

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #22 on: March 27, 2014, 03:39:16 PM »
New update! :)

Was back at the treatment center today for my latest results, my VL has dropped from 20,000 to 180, and my CD4 has jumped from about 370 to 680!

I am still a little slow in the mornings, but it's almost not noticeable anymore, and the weird dreams have stopped, so i'm really very happy today - I think tomorrow I shall bake myself a cake! ;)

Congratulations ! .You are doing so well so fast that you should be undetectable before you finish reading this . Keep up the good work !

Offline eric48

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Re: Recently started on Atripla, should I be worried about.... ?
« Reply #23 on: March 27, 2014, 06:15:59 PM »
Good job!
Thanks for the cake and thankyou note

Appreciated!
Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

 


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