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Author Topic: Prolonged / delayed side effects from Efavirenz (Storcrin)  (Read 3402 times)

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Offline ASingleMan

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Prolonged / delayed side effects from Efavirenz (Storcrin)
« on: October 27, 2011, 08:28:30 AM »
Hi all, am really confused and frustrated here and appreciate your replies about my little problem as it is causing me alot of stress.

I started on Truvada and Efavirenz about 5 weeks ago. In the first week after I started the medication, I experienced the usual side effects of giddiness, bad moods and the feeling of being "stoned" in the mornings. It gradually got better over the next few weeks.

However, the side effects of feeling "stoned" and very bad moods/ anger seem to have come back, worse than when I first started. I find this puzzling as I thought that the side effects would gradually get better as the weeks progressed. I take my medication around 10pm, about 2 hours before bedtime. I also eat my dinner 2 to 3 hours before my medication.

I feel very distressed as this is affecting the quality of my life and my productivity at work. What can I do? Should I wait it out for another month to see if it gets better or should I talk to my doctor about changing my medication? I'm worried and would like to find a solution to this. Please help!

Any replies about your experience is greatly appreciated.

Offline Ann

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #1 on: October 27, 2011, 09:09:07 AM »
Hi Single, welcome to the forums.

This is not an uncommon problem. Stocrin (aka Sustiva/efavirenz) side-effects can occur even months after starting. If it doesn't get better in the next week or so, you need to talk to your doctor about substituting another med for the Stocrin portion of your combo. You will need to talk to your doctor about what other meds are available in your country.

As a Sustiva-experienced member here recently said:


The Sustiva component of Atriple can cause suicidal ideation and other serious CNS issues months after the more apparent side effects diminish.


For those who have ANY history of major depressive disorder or other issues, this should be monitored VERY carefully.


Good luck with this and make sure you see your doctor if things do not improve soon.

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

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #2 on: October 27, 2011, 09:22:36 AM »
Thank you Ann.

I don't have a history of mental illness of anything close and don't understand why such feelings of anger, panic attacks can be so severe and intense. I know it's a side effect of efavirenz and I am hoping that i don't have to change meds. My doc has asked me to continue for another 4 weeks but I don't know how long I can take it anymore. But I will try.

I hope this is a one off.

Offline Ann

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #3 on: October 27, 2011, 09:37:40 AM »
You don't necessarily have to have a history of mental health issues in order to have these types of side-effects from Stocrin - it can happen to any one of us.

A month can feel like an awful long time when you're feeling miserable. Personally, I'd be inclined to only give it another week or two. The fact that these side-effects came back even stronger than they appeared in the beginning would worry me.

Good luck - don't be afraid to ask for a change.
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 mikeyb39

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #4 on: October 27, 2011, 11:22:48 AM »
i'm right there with ya singleman, my mood swings have been awful and angry all the time plus the sleep issues.  my doctor said we can change it anytime i wanted, so this may be in the cards on my next 3 month visit. 
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

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #5 on: October 31, 2011, 07:42:03 AM »
Is it normal to still feel stoned and hazy, not able to focused on week 6 of Efavirenz?

When can one start to feel an improvement?

Offline newt

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #6 on: October 31, 2011, 08:02:26 PM »
Perhaps.

For some people the effects go on and on. If they are unaceptable then there are plenty of alternatives. Set your time limit for the head effects to resolve, and if they don't speak to your doc about taking sommat different

- matt
« Last Edit: October 31, 2011, 08:04:22 PM by newt »
"The object is to be a well patient, not a good patient"

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #7 on: November 01, 2011, 06:52:48 AM »
Anyone knows what are the alternatives out there to efavirenz that is also a once a day one pill dosage? That is to take with Truvada.

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #8 on: November 01, 2011, 09:34:48 AM »
Reyataz boosted with Norvir plus Truvada is also once a day, but it is not one pill a day. It's not much of a sacrifice to have to take more than one pill once a day.
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 newt

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #9 on: November 01, 2011, 01:56:26 PM »
Likewise Prezista, and perhaps even Viramune XR

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

Offline vaguesbleues

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #10 on: November 01, 2011, 01:57:56 PM »
Rilpivirine (Endurant, another non-nucleoside reverse transcriptase inhibitor) was recently approved by the FDA only earlier this summer and is also a once-a-day pill.  Rilpivirine was just rolled out into a new one-pill once-a-day treatment combined with Truvada under the name Complera.  As far as I know, Complera is currently only approved for treatment naive individuals, but I'd imagine that will change in the next few years.  The main difference is that Rilpivirine or the combined tablet, Complera, needs to be taken with a full meal, whereas Atripla (Truvada + Sustiva/Stocrin) should be taken on an empty stomach.  
03/10/2011 - Tested HIV negative
04/26/2011 - Inconclusive WB result
05/19/2011 - Confirmed HIV positive
                    VL < 50, T-Cell 747 (30%)
06/13/2011 - VL 345, T-Cell 841 (30%)
08/23/2011 - VL 50,100, T-Cell 1155 (19%) - CMV
09/18/2011 - Started Atripla!!
11/07/2011 - VL 489, T-Cell 881 (31%)
02/08/2012 - VL Undetectable!!, T-Cell 772 (34%)
08/08/2012 - VL UD, T-Cell 1070 (42%)
11/05/2012 - VL UD, T-Cell 1174 (35%)
03/18/2013 - VL UD, T-Cell 972 (28%)
10/04/2013 - VL UD, T-Cell 1025 (34%)

Offline newt

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #11 on: November 01, 2011, 06:51:45 PM »
previous post - like :-)
"The object is to be a well patient, not a good patient"

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #12 on: November 01, 2011, 07:24:04 PM »
Rilpivirine (Endurant) - is it only for people taking meds for the first time or can people who cannot tolerate efavirenz switch to it?

Offline vaguesbleues

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #13 on: November 02, 2011, 03:10:39 AM »
I *think* that at this point, Rilpivirine is only FDA-approved for those beginning HAART therapy for the first time.  However, if you continue to have issues with the efavirenz, it might be worthwhile discussing the option of using rilpivirine with your doctor. 
03/10/2011 - Tested HIV negative
04/26/2011 - Inconclusive WB result
05/19/2011 - Confirmed HIV positive
                    VL < 50, T-Cell 747 (30%)
06/13/2011 - VL 345, T-Cell 841 (30%)
08/23/2011 - VL 50,100, T-Cell 1155 (19%) - CMV
09/18/2011 - Started Atripla!!
11/07/2011 - VL 489, T-Cell 881 (31%)
02/08/2012 - VL Undetectable!!, T-Cell 772 (34%)
08/08/2012 - VL UD, T-Cell 1070 (42%)
11/05/2012 - VL UD, T-Cell 1174 (35%)
03/18/2013 - VL UD, T-Cell 972 (28%)
10/04/2013 - VL UD, T-Cell 1025 (34%)

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #14 on: November 02, 2011, 10:11:08 AM »
My doctor suggested two options - changing the efavirenz portion to Reyataz OR decrease the dose of efavirenz.

What are the pros and cons of each?

How safe is Reyataz? What are the side effects and how common? What's the price point compared to efavirenz?

Any advice is deeply appreciated.

Offline Ann

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #15 on: November 03, 2011, 10:42:49 AM »
My doctor suggested two options - changing the efavirenz portion to Reyataz OR decrease the dose of efavirenz.

What are the pros and cons of each?

How safe is Reyataz? What are the side effects and how common? What's the price point compared to efavirenz?

Any advice is deeply appreciated.

My bf takes only 200mgs of efavirenz daily instead of the usual 600mgs. They first dropped him down to 400mgs.

However, they just didn't drop his doses and hope for the best at the next blood draw. They used something called Therapeutic Drug Monitoring (TDM) each time to make sure he was still getting enough efavirenz in his blood stream. Personally, I don't think I'd agree to dropping the dose of any hiv med unless they used TDM to make sure I was still getting an optimal amount of the drug into my system.

Reyataz is generally a good med with few side-effects. That's what I plan to use (with Truvada) when it's time for me to start meds. (I refuse to take efavirenz due to the possible CNS side effects).
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 ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #16 on: November 06, 2011, 07:21:05 AM »
I got a second opinion and they doctor egged me to continue for a few more weeks to see if there are any improvements in the day-time side effects of feeling stoned.

I'm starting on week 7 and will make my decision in 2 weeks whether to switch to reyataz + novir :-(

As you can tell, I'm reluctant due to the cost and the narrowing of future treatment options.

Anyone tried cutting their efaviranz tablets into two and taking it 12 hourly? Any improvements in side effects?

Online Miss Philicia

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #17 on: November 06, 2011, 10:02:15 AM »
the narrowing of future treatment options.


Sweetheart, this isn't 1995 -- you shouldn't worry about that issue. There are lots of other regimen options currently available, and there are a few more coming in the next year.

And if you make a med switch due to side effects and haven't had resistance issues, there's no rule that says you can't later go back to that regimen anyway, so your options aren't closed.

Personally I'd insist on changing if you're miserable after 7 weeks -- fuck the doctor.
« Last Edit: November 06, 2011, 06:34:09 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline newt

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #18 on: November 06, 2011, 06:06:12 PM »
Agreed, provided the change is without a break your options as a full as beforehand.

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

Offline newt

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #19 on: November 06, 2011, 06:07:51 PM »
PS - cutting the efavirenz in half will make no difference, the drug reaches a steady state concentration after 5 days and how you top it up is neither here nor there. If you want to investigate a lower dose speak to your doc about TDM, as has already been said.

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

Offline lonbjny

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #20 on: November 06, 2011, 08:17:31 PM »
Hey, have been following your story as it more or less mirrors mine.

I thought there had been a bit of improvement in feeling stoned during day for weeks 1-5 and then had week 6 which was pretty bad, found it difficult to follow a conversation. I was thinking of asking for a different regimen. My dr told me to hang on a few more weeks, to him weeks 6-7 is a grey area in working out if the side effects are permanent.

Anyway the past 3 days I doubled the time with empty stomach from 2 to 4 hours before dosing, really inconvenient but it has massively reduced side effects, to the point where I am going to stay on for another 2 weeks and am starting to feel hopeful that this willl work out for me. Might be worth trying for you before you switch. However I understand that side effects are very real and debilitating so I am not suggest you just put up with them. I have just found something that hopefully might make things work out for me.

Good luck

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #21 on: November 06, 2011, 09:39:32 PM »
Thanks for the advice guys.

Lonbjny, I'll try the empty stomach thing for a few days and see if it helps. Have already lost 2kgs since starting meds... grrrr.... :-)

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #22 on: November 18, 2011, 08:15:08 PM »
Lonbjny, how has it been for you since? Any improvements on the side effects.

For me last week I felt great again but this week I still feel the side effects though much milder than b4. Is it a case of the longer I take it, the better it gets?

Offline lonbjny

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #23 on: November 18, 2011, 11:21:28 PM »
Hi, I guess that I have decided its 'good enough' for now. I think my concentration has improved but its definitely a bit dulll. I have a hungover feeling for the first hour when I get up. And I have a recurrent mild headache.

But I that's really it, and if I just got a little bit of an improvement in concentration I would consider my self OK. So its 8 weeks since I started on Monday and my doctor, who I saw today, thinks there is chance that I willl get a little bit more  improvement so I have decided to hang in there. I had a really tough week at work (not due to meds) so I am thinking that might have aggravated things as well. I wish you well with your treatment and hope we still have a little improvement to come

Offline ASingleMan

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Re: Prolonged / delayed side effects from Efavirenz (Storcrin)
« Reply #24 on: November 19, 2011, 07:49:22 PM »
That's good to know lonbjny.

I was saying last week I felt great, i was present, no mind fogginess, hangover, but it came back this week, though it is much milder than previously.

Part of me wants to continue the drug and hope to see improvement in the side effect and part of me wants to just change the drug because there is no guarantee it will get better and I need to be 100% at work  :-[

And I have lost 7lbs since i started the meds.

 


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