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Author Topic: My first meds  (Read 2896 times)

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Offline LordBerners

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  • Posts: 415
My first meds
« on: January 17, 2008, 04:23:27 AM »
Well, I think tonight I will take my new hiv medications for the first time ever.  I have two pills, one labelled 'Emtricitabine 200mg/Tenofovir Disoproxil Fumarate 300mg', and the other labelled 'Strocrin/Efavirenz 600mg).

I've been advised to take these 'before bed', which for me is fairly late, so I'm thinking midnight or one AM.  If anyone has had experience with these drugs please advise me what to expect.  Diarrhea?  Nausea?  Sleeplessness? 

Also long term are these known to be better or worse than average for disfigurement issues?
Please, just call me Berners.. or Baron.

Offline Matty the Damned

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Re: My first meds
« Reply #1 on: January 17, 2008, 04:33:46 AM »
Nah, no real risk of lypo issues here as far as I know.

The Stocrin is noted for causing odd psychiatric issues for some people. These include vivid dreams, sleeplessness, mood swings and a sense of being intoxicated. Try to avoid taking it with fatty meals.

You may not experience such side effects but if you do, take comfort in the knowledge that they generally subside after 2 weeks to a month.

Stocrin is also known as "Sustiva".

MtD

Offline vokz

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  • efavirenz junkie
Re: My first meds
« Reply #2 on: January 17, 2008, 05:00:19 AM »
What Matty says really.

The combo you are on is exactly the same as for the people who are talking about Sustiva & Truvada .. which is in turn exactly the same constituent drugs that are in ATRIPLA.

The main reason for the ďbefore bedĒ advice is that the efavirenz will likely leave you feeling quite drunk & dizzy around 45 minutes after you have taken it.

Over time (maybe a month or two) that drunk sensation will fade gradually.

Diarrhoea and nausea are much less common. Fat distribution issues are even less common.

Sleeplessness (or more likely interrupted sleep) with vivid dreams are a strong possibility and will likely be your main management issue .. and once you are over the dizzy period, you may want to think about taking the drugs in the morning, on an empty stomach, to relieve any problematic sleep issues (if you still have them then).

Some people also get the mood disturbances. They are quite rare, but troubling when you do get them.

Donít be too surprised if you get a painless rash (which can look quite dramatic) in a week or two. It isnít generally anything to worry about and will normally pass soon enough (though your doctor may advise a course of antihistamines).

I am thirteen months into that exact combo and I donít have any bothersome day-to-day issues with it. It took some getting used to, but if you are patient you will probably find it a whole lot less frightening than you are imagining right now.

Good luck.

PS: If you have ever taken recreational drugs, there is actually quite a good chance that you will secretly enjoy how the efavirenz makes you feel. It is certainly my experience that people who have previously enjoyed ecstasy and/or marijuana feel quite at home with the state of intoxication.. and actually miss it when they no longer get it.
« Last Edit: January 17, 2008, 05:10:22 AM by vokz »

Offline mplsdoubled

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  • Posts: 52
Re: My first meds
« Reply #3 on: January 17, 2008, 08:25:24 AM »
I've been on Atripla for three weeks.  The "stoned" feeling as disappeared.  I do kind of miss it!  Today, no side effects, no sleep problems, no rash - just a quick swallow of a pill before bed.  No big deal.  Life goes on!

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #4 on: January 18, 2008, 02:04:34 AM »
Thanks everyone.  Well it is the next day and I can report that nothing happened.  I stayed up for a few hours after taking them just out of curiousity about the drunk or dizzy feelings, but they never came.  I did have a vivid dream - not enough to wake me up but like the dreams I used to have as an adolescent.  I find that I dream less as I get older.  I had a long dream about being on a farm with assisted suicide activists, and being supportive but kind of afraid they were going to inject me along with this month's crop.

Anyway, today I feel a bit odd, but I can't put my finger on it.  I do have diarrhea but for me thats not so unusual.  Overall I can't say the meds did anything.  I am a bit concerned about the rash issue - talk about something that could give away one's positive condition!
Please, just call me Berners.. or Baron.

Offline Matty the Damned

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Re: My first meds
« Reply #5 on: January 18, 2008, 03:46:35 AM »
I had a long dream about being on a farm with assisted suicide activists, and being supportive but kind of afraid they were going to inject me along with this month's crop.

You too huh?

MtD
(Who notes that the world grows smaller)

Offline zgood

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  • Posts: 7
Re: My first meds
« Reply #6 on: January 18, 2008, 05:52:19 AM »
hi,started the same combo a month b4 u.get the anti histomes or anti-allegy tabs,the rash will go away.i was taking tabs when in bed ready 2 sleep but i find that my sleep is in fits,with the vivid dreams.but now that i know the effects am taking them some hours b4 sleep.iyou should work out when its best 4 you,also do you drink etc,i think i might try in the morning (suggested in previous post)as i really stay awake.it also stops me from having 2 take sleeping pills.apart from that ithe hardest part was actually getting mtself to start mentally.take it easy :)

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #7 on: January 20, 2008, 03:27:16 AM »
Well, it has been a few days on the medications now (which I'm told are 'Truvada/Sustiva'), and I feel pretty bad, but in a different way than I expected.  I feel very 'out of it', and mentally dulled, also quite tired.  I'm totally off my food - nothing tastes good and I have no appetite.  On the other hand I haven't had any nausea or vomiting, and no diarrhea, at least nothing identifible as such compared to my usualyl problematic defecations. 

I'm hoping that this changes soon, but it is my understanding that adjustment to these drugs often takes a few months. 
Please, just call me Berners.. or Baron.

Offline BT65

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  • Posts: 9,618
  • Diagnosed + 1989
Re: My first meds
« Reply #8 on: January 20, 2008, 10:14:28 AM »
I wouldn't say a few months.  Maybe a few weeks-a month.  Hang in there.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #9 on: January 22, 2008, 01:45:49 AM »
Thanks everyone for your kind words.  I'd like to update - the issue about not having any appetite and food tasting bad has become rather severe.  I was over at my gf's house and she insisted that I weigh myself - it appears I've lost five kilos, which is like 12 pounds I think. 

It is so frustrating to have to force myself to eat, and I can't eat more than 1/4 of what I used to eat.  Feel disgusted.  My doc mentioned that some people on this combo 'get anemia', but I'm not sure that's what he meant.

Anyway my sleep is also getting worse rather than better, so not sure what is going on.  I guess I'll call the doc soon, as I don't want to lose any more weight if it is at all avoidable.  My weight hasn't changed significantly in the last 7-8 years, so it really feels weird.
Please, just call me Berners.. or Baron.

Offline vokz

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  • efavirenz junkie
Re: My first meds
« Reply #10 on: January 22, 2008, 02:55:10 AM »
Lordberners,

The sleep issues are nothing more than I would expect .. but if the other issues are as bad as they sound, then I would urge you to think about having a chat to your doctor about it.
« Last Edit: January 22, 2008, 04:13:54 AM by vokz »

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #11 on: January 22, 2008, 03:25:32 AM »
Thanks voks, I will.  You know I have this crazy idea that if I could get access to what we call 'farang food', or European food here, I might be able to eat.  It seems like Thai food totally disgusts me now.  Alas I'm in a fairly small town where there is no access to anything other than the local foods.
Please, just call me Berners.. or Baron.

Offline vokz

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  • efavirenz junkie
Re: My first meds
« Reply #12 on: January 22, 2008, 03:39:43 AM »
It may be that you are craving plainer food, but I doubt it.

The things you are describing are things I might have expected from other drugs, but not from the ones you are on. If there are those sort of deep issues going on (and I am not suggesting that there are), then I think it is more likely that reading that other people have experienced similar things has made you think that you will too (which is one of the dangers of forums like this).

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #13 on: January 22, 2008, 04:01:49 AM »
The things you are describing are things I might have expected from other drugs, but not from the ones you are on. If there are those sort of deep issues going on (and I am not suggesting that there are), then I think it is more likely that reading that other people have experienced similar things has made you think that you will too (which is one of the dangers of forums like this).

Actually I didn't read about anyone losing their appetite or taste for food.. I have heard horror stories of lots of vomiting, nauseau, and diarrhea, but that's quite a different thing.  My stomach is not upset, and interestingly I hardly notice any gastrointestinal feelings around the time I take the pills.  I just have no appetite at all and food tastes either bad or has no taste (like cardboard).  I doubt its just psychological suggestion.. as I've really never heard of it.
Please, just call me Berners.. or Baron.

Offline vokz

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  • efavirenz junkie
Re: My first meds
« Reply #14 on: January 22, 2008, 04:04:13 AM »
Which is why I am saying I think you should speak to your doctor .. even if just for peace of mind.

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #15 on: January 22, 2008, 10:45:59 AM »
Which is why I am saying I think you should speak to your doctor .. even if just for peace of mind.

I'll call them tomorrow, my friend, and thanks.

Reminds me of growing up on the farm - when an animal stopped eating, that was when you figured it was a goner! :)
Please, just call me Berners.. or Baron.

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #16 on: January 23, 2008, 09:50:21 AM »
Ok, today I've pretty much resolved to stop taking these medications.  I feel astoundingly bad, due to not being able to eat, being weak and exhausted all the time, losing so much weight, and feeling feverish every day.  Of course my sleep is also poor.  I find that I can barely function in my daily life, in ways that I really have to, so that was the decider.

I wonder if this will make my virus resistant to all the medications I'm taking.  I'm hoping that these severe problems are related to one of them rather than all.

I haven't been able to get the doctor  or nurse on the phone today.

My only concern is that by droppnig this I lose free meds, as I am part of a study.  Still, meds are not very expensive here in Thailand.

I just feel like I wasn't anywhere near sick enough yet to put myself through what I've been experiencing the last week.
Please, just call me Berners.. or Baron.

Offline Iggy

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Re: My first meds
« Reply #17 on: January 23, 2008, 09:58:01 AM »
I would not stop your treatment regimen until you get your doctor (not the nurse) on the phone.  Call them every five minutes if you have to, but I urge you not to just stop meds without proper medical guidance.

Offline vokz

  • Member
  • Posts: 391
  • efavirenz junkie
Re: My first meds
« Reply #18 on: January 23, 2008, 02:18:46 PM »
DO NOT STOP THOSE MEDS unless you are doing it under medical supervision. Strocrin (efavirenz) in particular can linger in your blood for weeks and lead to resistance issues.

Keep ringing the doctor, as Iggy suggests.

Offline newt

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  • the one and original newt
Re: My first meds
« Reply #19 on: January 24, 2008, 05:43:43 AM »
Feeling feverish -- you must see/speak to your doc

This could be the meds exacerbating a previous infection (not HIV)

It could also be the meds

I note from a previous post that you have an option of Truvada + Ritonavir + Atazanavir, this would be the best combo to switch to if you want to stay on treatment. The other combo, Truvada + Abacavir + Zidovudine, is not recommended, especially with high viral loads.

If you do want to stop, and preserve Stocrin as a future option, the recommended way to do this is to replace it with a PI for 2-3 weeks.  Stocrin hangs around for a long time, and this can lead to resistance.  Therefore if you stop Stocrin outright just like that, NNRTIs as a class may be ruled out for future use.

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

Offline LordBerners

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  • Posts: 415
Re: My first meds
« Reply #20 on: January 25, 2008, 12:10:48 PM »
Thanks you guys, and particularly newt.  I didn't respond as 1) I had laid off the meds and 2) I still felt shitty.  So the next day i journeyed all the way to Bangkok and met with my doctors.   As I knew they would they recommended that I try to 'stick with' with combo as it is reputedly the best one.  They directed that I begin to take the Truvada again for a week in order to reduce likelihood of the Sustiva going resisted.  Then, I can jump back into the full regimen or just stop, depending on how I feel.  They offered no solution for the problem of being unable to eat.

Interestingly they told me that the destruction of apetite/weight loss/anemia problems are very common among Thais on this combo, but not whites.  Anyway, unluckily for me I got it.  I honestly cannot imagine going back on that, given the way I felt.  But I suppose all the combos have awful side effects and other drawbacks. 

I'm sure lots of people have been in this situation where one has never actually suffered yet from the HIV, and upon treatment one feels worse than one ever has in ones life.
Please, just call me Berners.. or Baron.

 


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