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Author Topic: Switch from Atripla?  (Read 1743 times)

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Offline monarcmarc

  • Member
  • Posts: 22
Switch from Atripla?
« on: March 01, 2013, 09:19:00 PM »
Hi All

I've been watching for awhile now, but never posted. I've been a little reluctant to because I have to say, sometimes LTS can jump down newly infected or newly treated peep's throat unless they articulate themselves in such a way as to cause as minimal offence as possible.
I respect that, so I'm not going to post for brevity's sake for those reasons. I will try and be as objective as I can in my approach. Forgive me for making it a lengthy post, but I'm trying to anticipate the questions that will inevitably follow. Forgive me also that this post might actually be better broken into several posts, but my favourite topic is myself and I can wax lyrical ad nauseam.

I was diagnosed in June 2010. Was a bit of a shock, despite the fact that I'd been engaging in extremely high risk sex. I attribute this, at least in part, to some self worth issues, and I've been fortunate enough to be able to access some counselling through my sexual health clinic. That aspect of my personal journey (independant of, but perhaps now more so intertwined and ingrained with my HIV journey) is still a work in progress.
Immediately I jumped online, and started to get as much information as I could and noted that there was a trend towards recommending treatment at levels above 500 rather than below. My doctor preferred the Australian standard which at that time was at or below 350 or there abouts. At diagnosis my viral load was 899, with my lowest 'score' being 713. So I'm very fortunate in that I've been able to maintain the health of immune system, at least by that measure. I haven't worked out how to do a little signature thing with my stats yet, but I will shortly if someone might help me out.

My viral load was at 50,000 but then jumped to 213,000 in May 2012, at which time I started on Atripla, I think around July. Followed a massive drop in VL to 913 in August and I achieved UD month just gone.

I was pretty fortunate and have tolerated Atripla well. First couple of nights I stayed up late because I wanted to be aware of any CNS side effects that I had, so that if for any reason I missed, I knew what I was dealing with. Aside from some fuzziness and a kind of busy-ness it wasn't too bad, although initially I did feel that I could 'hear' it doing it's work. No rashes, no kidney or liver issues. Occasional vivid dream, which could also have been attributable to the champix I was taking at that time, but aside from that, very well tolerated.

I think I have missed a dose twice. On the second occasion, as I took it the next morning I made a decision to take it first thing in the morning. To my mind this was much more suitable for me, there was much less chance of me missing a dose because my mornings bring much more certainty than the nights and I have a routine in place. This routine has been very effective to date, there was one occaison where I've forgotten to taken the pill and taken it at midday. Aside from that there may be fluctuations of between 1 hour and 2 hours at the time of dosing and my doctor has suggested to me that this combination will tolerate those fluctuations without difficulty, and this has been supported by my own research.

One side effect I have noticed, is that if I have a fatty meal, I get a bit of dizziness or in a bit of a fuzz, so I try to keep this at a minimum.

Two weeks ago, I have moved to a rural town, where access to care is limited, but certainly available. I have to travel an hour and a half to access it, but it's there none the less and for that I'm grateful.

The reason for this move, was to undertake some study. At about the time of my diagnosis I enrolled in a law degree. Whether or not, as a friend has suggested to me this was a way of saying 'f^ck you HIV, I am worth something' or 'see what you've done, now you have to do this to help make yourself feel better about being shit at life' is a moot point. I've done it, and I'm happy with my decision.

The difficulty I am now having though, is that I find in the morning I have difficulty with concentrating and wading through what is some pretty hefty and demanding material. I did make the observation last night, that at about 7pm onwards I didn't have nearly as much difficulty, but on some occasions I have had difficulty mainting focus and concentration of a night.

For that reason, I can't with certainty attribute this to the Atripla for a couple of reasons. First, once you're in a position of 'well this is my life now' I've compartmentalised a little bit, and what it was like before doesn't really matter, because I need to stay alive and realise that I need to make some changes, and there are 'sacrifices' (that's not a perfect word for the situation, but it will do. . . .compromises?) Secondly, up until this point, I had been working in retail which wasn't very demanding on me intellectually so I think that I might have tolerated any side effects without much thought, and by the time I came around to study at night anything that I'd been feeling had dissipated. Thirdly, given that a few months have elapsed since starting (morning) treatment and last studying, I think it's very hard to think back to how you were feeling at that point in time, because at that point in time, I couldn't predict what my future situation would be and reflect that I needed to store it away and come back to it.

I am conscious that I can sometimes be a bit of a head case. For example when I was crook recently, just before review of my kidney stuff, I was convinced I had a pain in my lower back that might be relate to the atripla. I think it's great to be self aware, but in that particular instance (and there have been a couple of episodes since diagnosis) I'd consider it to perhaps be psychosomatic.

So as I see it here are my options:
- Revert back to night dosing, and take it from there and see if there is a noticeable difference.
- Get up an hour earlier and take the medication an hour before food, to see if eating soon after is contributing
- Investigate other treatment options.

I think I need to maybe keep a diary if the issues, any thoughts or ideas on how best do this to present to the new doc in mid april?j

I think Sustiva is believed to be the culprit here, so I think that rules out Complera?
I would much prefer a pill a day, but I think Quad (Stribild?) which is recently available here requires a heavy meal. Does this meal have to be of a morning? 400 cals seems a hefty meal.

Any thoughts or advice would be humbly and gratefully received

Much Love,
Mark.


Offline texaninnyc87

  • Member
  • Posts: 247
Re: Switch from Atripla?
« Reply #1 on: March 01, 2013, 10:19:03 PM »
Welcome to the forums and thanks for sharing your story. You seem to have a very intelligent and mature outlook that will definitely serve you well. I'm glad you have access to care and started treatment early; those are both very important factors in regards to successful treatment. I know it can seem a bit daunting to post here so I'd also like to congratulate you on being brave enough to go through with it.

Law school! That sounds like a ton of work regardless of CNS issues. I'm sure other people who are more familiar with Atripla can give you some good advice on the best way to move forward and hopefully avoid some of your focus issue.

In terms of Stribild, I can share what limited knowledge i have. I have been taking it for two months with great results, very effective with little to no side effects. Stribild does not have a specific calorie requirement it simply requires that it be taken with food. Someone on here pointed out to me that it is more effective with high fat meals, which I didn't realize, but it is not ineffective without high fat meals (or i imagine they would have a calorie requirement like complera). i take stribild every morning some time between 9 and noon (pretty wide window) and usually with a light breakfast (rarely over 400 calories) my doctor is totally fine with this. in two month my vl has dropped from 129,000 to 80 and my cd4 has risen from 280 (20%) to 350 (26%) so it seems to be working just fine even with my measly breakfasts!

I'm sure others will be able to give you more information, but this is my two cents! Try not to be too intimidated by some of the people on here, they all mean well!
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD
6/14 cd4 410 (35%) vl: UD
9/14 cd4 439 (38%) vl: UD
12/14 cd4 551 (37%) vl: UD

Offline monarcmarc

  • Member
  • Posts: 22
Re: Switch from Atripla?
« Reply #2 on: March 02, 2013, 11:27:07 PM »
Thanks for your comments.

I am thinking the best way for me to proceed at the moment, is to switch back to night dosing. This way I can make an assessment on whether the brain fog is less than it was before, and whether it's at an acceptable level for me or whether I need to investigate other options.

In the meantime, I think I might get in touch with previous Doc, and ask her thoughts on alternate combo's, so I that I can do a little research myself before I have an appointment with the new doctor. I would imagine that there wouldn't be a great deal of difference between their respective advice (although you never know), so that if my situation continues as it has been, I can be in a position to make a choice about an alternate combo as soon as possible.

A single pill combo is preferable to me, because I am a poor uni student (currently, but hopefully only short term, unemployed) so it's not just in terms of the convenience, but also the co payment that I'd be required to make ongoing for potentially three or four medications instead of just the one. I'm hesitant to be switching at all, because Atripla is the most common combo locally and is relatively easy to get.

I'm pretty organised in relation to getting my scripts filled, so what it is I'm taking shouldn't really effect that. In theory, all of the medications should be pretty readily available to me as I'm in the enviable position of having it almost wholly subsidised by the government (I'm Australian). I'd expect that being so, supply shouldn't be an issue regardless of what combo I'm on.

If anyone has any thoughts on any particular meds, please give me a yell.

Much Love,
Mark.

Offline darryaz

  • Member
  • Posts: 450
Re: Switch from Atripla?
« Reply #3 on: March 02, 2013, 11:40:33 PM »
Mark,

I think your idea about switching back to bedtime dosing is right on.  I've been on Atripla since it was a new combination and have virtually no side effects these days (and my highest CD-4 ever). 

My advice would be to get into the habit of the same bedtime ritual each night.  Something like......
 * Brush teeth
 * Go to the bathroom
 * Take pills
 * Undress
 * Get in bed 

Good luck!!!!!

Offline monarcmarc

  • Member
  • Posts: 22
Re: Switch from Atripla?
« Reply #4 on: March 03, 2013, 01:37:15 AM »
Thanks Darryaz, I appreciate your perspective. Aside from the brain fog, my side effects have been minimal, although I have had difficulty with sleep on occasion.

The difficulty for me is not so much the routine, but when you do things that are out of the ordinary. As a student there's a bit of drinking going on, and you really have to have your wits about you and go well, you need to go home and take your pill and then come back to the drinking, if it slips your mind.

One thing I've found useful is to have a pill holder on my keys, but I worry about the pills perhaps being sensitive and degrading. I guess, if it's not used, change it fortnightly when I load up the pill dispenser.

Thanks again,
Mark

Offline texaninnyc87

  • Member
  • Posts: 247
Re: Switch from Atripla?
« Reply #5 on: March 03, 2013, 11:19:24 AM »
I use a pill keychain holder too. You do have to rotate them out every now and then to make sure the pills stay good.
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD
6/14 cd4 410 (35%) vl: UD
9/14 cd4 439 (38%) vl: UD
12/14 cd4 551 (37%) vl: UD

Offline positivelynerd

  • Member
  • Posts: 33
  • Life isn't a struggle, it's a wiggle.
Re: Switch from Atripla?
« Reply #6 on: March 03, 2013, 01:23:05 PM »
Marc,

Welcome to the forums and thanks for your contribution. 

When I was diagnosed, I had just started my grad program and was placed in a study taking a Sustiva/Epzicom combo and checking the effectiveness of it versus an experimental drug.  I took it at bed time, really making sure to stay away from fatty meals beforehand.  The first couple weeks made working and reading really difficult even into the afternoon the next day.  I usually couldn't do anything beyond grading papers (mindless) until 3 or 4 pm the next day.  While I can't say this was 100% the Sustiva, dealing with my Dx was also front and center, I will say four months in, it's now entirely gone. 

I keep a dose in my backpack and one in my car, which can usually keep me covered if I find myself away from home.  I haven't gotten a key chain yet (my keys already look like I'm a janitor), though I imagine that will be next on my list.  Citing your specific concerns and wanting to stick with your current regimen, I'd say to switch back to the evening dosing.  I'd also recommend setting an alarm on your cell phone and take your meds as soon as it goes off, even if that means taking it with a beer.  =)

Again, welcome, and best of hope and health to you.
-D
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Offline Larsen

  • Member
  • Posts: 41
Re: Switch from Atripla?
« Reply #7 on: March 05, 2013, 01:41:15 AM »
Hi Mark,

I've been on Atripla, or its constituent drugs, for almost seven years. I have tried taking it in the morning, I have tried taking it at bedtime, and I have tried Truvada at bedtime and Sustiva/Stocrin in the morning. Each has its advantages, but none is perfect.

The point is that I used to routinely switch to suit my needs and lifestyle; but over the years, as all the side-effects have faded into nothingness (or at worst incredibly rare inconveniences), have settled on the standard bedtime routine. Don't be afraid to just switch to a different schedule to see how that feels, because delaying a single dose, for how ever many hours it takes to achieve that, isn't a big deal and isn't going to do you any harm.

Just do it and see if it makes a difference and see if you can reasonably make it work with your lifestyle. If it doesn't, then move on to treatment options.

That's my two cents worth.
« Last Edit: March 05, 2013, 01:53:18 AM by Larsen »
In a far better p[lace than this minging shithole

Offline Larsen

  • Member
  • Posts: 41
Re: Switch from Atripla?
« Reply #8 on: March 05, 2013, 02:30:28 AM »
Mark, just a quick aside.

One of the difficulties with advice on the efavirenz element of Atripla (which is almost certainly what is causing your 'fog') is that we can all have such wildly different experiences of it. Not only that, but the side-effects change over time some may be subtly progressive, whilst most will fade over months, or years. It can take several years for it to settle down to where it is just a predictable routine plod. What works now may not work in six months time - and conversely, what doesn't work now, could well work in six months - so be aware, be flexible and experiment.
In a far better p[lace than this minging shithole

Offline monarcmarc

  • Member
  • Posts: 22
Re: Switch from Atripla?
« Reply #9 on: March 05, 2013, 03:06:30 AM »
Thanks one and all.

Much Love
Mark

Offline monarcmarc

  • Member
  • Posts: 22
Re: Switch from Atripla?
« Reply #10 on: March 09, 2013, 07:30:12 AM »
I've noticed that since I've gone back to the nights now, I am having some dreams. Previously I'd had a few. They're not altogether unpleasant, but slightly tiring.

Offline Larsen

  • Member
  • Posts: 41
Re: Switch from Atripla?
« Reply #11 on: March 09, 2013, 07:37:03 AM »
Yep, that's the downside. You now have a higher nighttime concentration of efavirenz in your blood, so it is more likely to affect your sleep and dreaming (for a while at least).
In a far better p[lace than this minging shithole

 


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