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Well, I started my first dose of Rexulti tonight. 0.5 mg. I'm adding it on for depression, which is proving to be rather medication resistant, and I'm a previous Abilify user. I took 2mg Abilify from about October 2015 to May 2016. Stopped it because of severe restlessness and an overall feeling of "not myself", which laughably enough I still feel. I also was emotionally deadened, which I thought was a negative until I've been off it and sobbing all day, begging the sky to die, having mood swings, anger outbursts, you know. I've decided to give antipsychotics another go because maybe emotionally deadened is a good thing! I gained no weight on Abilify, and in fact have gained after quitting. Taking the Rexulti along with my 20mg Trintellix and 150mg Lamictal. What experience does anyone have with this new drug?

Edited by Reira
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I love Rexulti! I'm on 1mg and have nearly zero side effects from it. It kills my depression almost 100% and I don't find it to be activating or sedating. Weight neutral. I did mood tracking when I started it, and I found a significant increase in my mood at 1mg vs 0.5mg. I was on 2mg of Abilify previously, and it was ok, with some side effects.

For me, it's been the life saving drug I needed. I can function normally, and I never feel drugged on it, compared to every other antipsychotic I've been on. I can't say enough good things about it. My pdoc says I should do a commercial for it, lol!

Edited by dtac
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Third dose taken (0.5mg)....some insomnia but tired during the day to the point of naps. Actually did some needed work around the house today and enjoyed myself but still feel basically the same. Hoping the step up to 1mg makes the difference!

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13 hours ago, Reira said:

Third dose taken (0.5mg)....some insomnia but tired during the day to the point of naps. Actually did some needed work around the house today and enjoyed myself but still feel basically the same. Hoping the step up to 1mg makes the difference!

I would keep in mind that sometimes a med can take up to 6-8 weeks for you to feel a big difference.  It can sometimes take awhile for the med to get into your system.  So if you don't feel a change right away, give it time.  It might work more as time goes on.

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I switched off of 15mg of Abilify to 2mg of Rexulti in March. I had mild akathesia from Abilify and it also made me fairly drowsy. No negative side effects from Rexulti. It's hard to tell if it's helping... I'm not in the best place... but it's not hurting anything.

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Funny, because Abilify was extremely activating for me. Rexulti is slightly sedating, but not majorly so. I can't say it's honestly gone away over the past six months, but it never got any worse.

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  • 2 weeks later...

So I'm about two weeks on Rexulti. It has started energizing me which helps with the depression. It's done great things for my paranoia, which in turn makes me happier (I'm not constantly thinking people are talking bad about me, etc). The biggest problem I'm having is dry mouth. I mean REALLY bad dry mouth. It's affecting my sleep. I've got canker sores in my mouth. It's like a desert in there. I don't want to stop it for such a stupid side effect.

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18 minutes ago, Reira said:

So I'm about two weeks on Rexulti. It has started energizing me which helps with the depression. It's done great things for my paranoia, which in turn makes me happier (I'm not constantly thinking people are talking bad about me, etc). The biggest problem I'm having is dry mouth. I mean REALLY bad dry mouth. It's affecting my sleep. I've got canker sores in my mouth. It's like a desert in there. I don't want to stop it for such a stupid side effect.

Have you tried the biotene ... I know they have mouthwash and other things.  I think they even have gum.  If you go to your pharmacy, all the biotene stuff is usually together in the toothpaste/mouthwash/etc aisle (though it could be different in other stores).  I've never used any of it, but it has helped others here on CB.

What has worked for me is sugarless gum, mint kind.  That and tiny sips of water if necessary (to coat my mouth and dry lips).  Because drinking water all day does nothing for me.

Another idea is sugarless candy to suck on, but personally wouldn't recommend it.  Too much sugarless candy to suck on = bad gas and diarrhea, at least for me.

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Update on Rexulti:

After being on 1mg in AM and having a lot of stability but tiredness every day for almost 5 months, I switched it to PM instead. Now I can stay awake during the day, headaches are pretty much gone, and don't feel like I need a nap, unless I take Xanax. The problem is that I'm super irritable and I feel somewhat out of sorts, so I've been using Xanax more to help cut down on the irritability and anxiety. Ugh. I see my pdoc in two weeks and I keep hoping the irritability and anxiety will subside so I can get back in balance, but it doesn't seem to be happening.

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On 10/12/2016 at 9:24 AM, Reira said:

So I'm about two weeks on Rexulti. It has started energizing me which helps with the depression. It's done great things for my paranoia, which in turn makes me happier (I'm not constantly thinking people are talking bad about me, etc). The biggest problem I'm having is dry mouth. I mean REALLY bad dry mouth. It's affecting my sleep. I've got canker sores in my mouth. It's like a desert in there. I don't want to stop it for such a stupid side effect.

 
 

I've had dry mouth off and on from meds or other unknown reasons, and for this, my GP prescribed me cevimeline (Evoxac), a non-selective muscarinic acetylcholine receptor agonist with particular effects on M1 and M3 mACh receptors. It's usually prescribed for dry mouth especially for people who have the autoimmune disease, Sjögren's syndrome. I can certainly say that it made a more than noticeable difference! I went from having zero spittle to ptyalism, and would accidentally drool if I didn't watch myself... lol. Nighttime drooling on my pillow became a new "problem," which I had never had before. Eventually, I backed the dose down from three times per day to twice daily and that seemed to help out just enough without making me drool everywhere. I ultimately quit taking it because I was trying to eliminate superfluous medications I was on. But I had no side effects to speak of (other than the sialorrhea), and it definitely helped out with dry mouth. To anyone with chronic, severe dry mouth, I would recommend a trial of this medicine.

Other medicines for this indication include pilocarpine (Salagen) (which apparently takes 6-12 weeks to take effect for xerostomia) and bethanechol (Urecholine) (which is usually indicated for genitourinary indications but can be used for xerostomia)

On 10/12/2016 at 10:09 AM, dtac said:

Update on Rexulti:

After being on 1mg in AM and having a lot of stability but tiredness every day for almost 5 months, I switched it to PM instead. Now I can stay awake during the day, headaches are pretty much gone, and don't feel like I need a nap, unless I take Xanax. The problem is that I'm super irritable and I feel somewhat out of sorts, so I've been using Xanax more to help cut down on the irritability and anxiety. Ugh. I see my pdoc in two weeks and I keep hoping the irritability and anxiety will subside so I can get back in balance, but it doesn't seem to be happening.

 

I remember when I was on Rexulti and I went up to 1 mg I also had excessive daytime sedation that was unbearable and had to switch to PM instead. (My pdoc had written the prescription to take it in the morning originally, but she said to switch to h.s. if it made me too sleepy during the day.) That's interesting that it's making you irritable... It made me not give a damn about anything and numbed me to the point of near dissociation. I don't really know what to say other than perhaps going back down to 0.5 mg would help? (Unless 1 mg makes you feel more stable...) The other thing is if you are taking any CYP2D6 inhibitors or substrates, it can increase the blood plasma levels of Rexulti, ultimately increasing the exposure of it to your body/brain, having the effect of raising the effective dose (1 mg acts like 2 mg). It's in the PI sheet to reduce the dose of Rexulti by 50% if taking it concomitantly with any CYP2D6 inhibitors. But I see you're taking oxcarbazepine, which is a CYP metabolism inducer, which would actually call for your Rexulti dose to be doubled. I dunno, just throwing some stuff out there... lol.

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On 10/12/2016 at 11:09 AM, dtac said:

Update on Rexulti:

After being on 1mg in AM and having a lot of stability but tiredness every day for almost 5 months, I switched it to PM instead. Now I can stay awake during the day, headaches are pretty much gone, and don't feel like I need a nap, unless I take Xanax. The problem is that I'm super irritable and I feel somewhat out of sorts, so I've been using Xanax more to help cut down on the irritability and anxiety. Ugh. I see my pdoc in two weeks and I keep hoping the irritability and anxiety will subside so I can get back in balance, but it doesn't seem to be happening.

Thank you for the update!  I hope the agitation and irritability, and feeling out of sorts goes away.  It seems from what you've written that the Rexulti has been helpful except for the 3 side effects just mentioned.  Just asking, basically out of curiosity, how long are you going to give the rexulti until you can't stand the side effects, including the tiredness and getting back in balance? 

Also, thank you for posting because I like to know info about it if my pdoc puts me on it at one point in time.

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On 10/16/2016 at 7:09 AM, melissaw72 said:

Thank you for the update!  I hope the agitation and irritability, and feeling out of sorts goes away.  It seems from what you've written that the Rexulti has been helpful except for the 3 side effects just mentioned.  Just asking, basically out of curiosity, how long are you going to give the rexulti until you can't stand the side effects, including the tiredness and getting back in balance? 

Also, thank you for posting because I like to know info about it if my pdoc puts me on it at one point in time.

I will give it l as long as I possibly can. I have no other real side effects, and it has a huge impact on my depression, better than any other AP. It's really the core drug for me, and after 6 months, I can see a definite difference in my mood. I'm reluctant to increase it, though, because my akathisia went from low to moderate when I moved from 0.5mg to 1mg. I know Cogentin is effective for treating akathisia, but my pdoc and I both hate chasing side effects. 

I think he'll agree it's worth trying a bit of chasing to get the Rexulti to work, though, because the benefit outweighs the risk. This is the one drug that I am honestly scared to drop, ever, because of the positive benefit. Give my long, ineffective med history, I think it will take a few more permutations before it gets dropped. 

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6 minutes ago, dtac said:

I will give it l as long as I possibly can. I have no other real side effects, and it has a huge impact on my depression, better than any other AP. It's really the core drug for me, and after 6 months, I can see a definite difference in my mood. I'm reluctant to increase it, though, because my akathisia went from low to moderate when I moved from 0.5mg to 1mg. I know Cogentin is effective for treating akathisia, but my pdoc and I both hate chasing side effects. 

I think he'll agree it's worth trying a bit of chasing to get the Rexulti to work, though, because the benefit outweighs the risk. This is the one drug that I am honestly scared to drop, ever, because of the positive benefit. Give my long, ineffective med history, I think it will take a few more permutations before it gets dropped. 

Akathesia is what I would worry about for myself ... I'd definitely be watching for it.  I've akathesia in the past, and I pretty much just can not stand it; it is hard for me to be in my own skin and my head is just insane.

I've been on cogentin for tardive dyskinesia before, but I didn't realize that helped akathesia too.  I don't like chasing side effects either.  I probably would stop the rexulti if I developed akathesia to the point where I couldn't possibly stand it anymore.  I wouldn't want to deal with the cogentin. 

Thank you so much for your input!

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Update:

Saw my pdoc, he wants me to split 1mg into 0.5mg AM/PM, so I got a new pill cutter and I've been splitting it the past couple of days, along with 600mg Trileptal in the morning and 300mg at night. Some sleepiness has returned, but not as bad. I'm more tired today than yesterday, so it could just be related to my sleep last night. Akathisia seems to be total dose related and is not improved by splitting the dose. My anxiety is significantly better, as I hoped it would be, which is extremely good. Energy curve seems to be leveling out across the day instead of only having energy the first 4h of the day.

So basically some SE seem to be dose related, and some are just drug-related. I don't see the akathisia getting better without Cogentin, but the sedation is far less at 0.5mg and does carry positive mood benefits with it. This is an interesting drug, and I think pdocs are going to spend years getting the subtleties of dosing figured out, especially with no guidelines for bipolar.

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  • 2 weeks later...

So I managed 3 days on 0.5mg AM/PM before I started falling asleep again during the day. I just moved it all back to PM again because I can't live with being sleepy all day long. If I take it too late at night (8-10pm) then I'm still tired the next day, just not falling asleep. Very narrow window of opportunity. However, after about a month at taking it predominately at night, my anxiety has lessened and is back to almost normal levels during the day. Reduced the Trileptal to 300mg in the morning because of the sedation, and I can stay awake no matter how little sleep I get the night before (even 5h or less.)

I go back to my pdoc next week, so I'm going to talk to him again about the sedation. I'm worried about an increase in stress driving up my anxiety again... and with the holidays coming up, stress is likely to increase. My tdoc is worried about this as well, so she's watching me closely. My living situation keeps my stress level elevated, so I haven't seen a decrease in stress at all.

As a somewhat strange side effect, Xanax now has a stronger effect. Four months ago when I started taking it, I was taking 1mg to manage my anxiety (with Rexulti in the daytime) -- now I just need 0.25mg to kick down the anxiety and remain functional. Any more than that, and I'm falling asleep. A bit paradoxical given that I am less sedated with the Rexulti dosing at night.

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  • 1 month later...

I'm on my 4th day of Rexulti at 0.5 mg. I'm in the middle of a multi-year battle with severe anxiety/ depression. It seems like I'm fairly treatment-resistant. SSRI's have never worked for me. Only Effexor has ever worked. After stopping it for a while, I'm back on it and it's not working - or maybe I need to give it more time.

Anyways, I've never been prescribed an AAP before. Rexulti is the first. And to be honest, I never really wanted to try them because I just assumed they'd make me feel like a zombie. But now I've been reading that Rexulti actually gives people energy and mental clarity, so that's really encouraging.

I probably got a little ahead of myself when I read that some people start to feel it within 3-4 days. I don't think I'm feeling anything yet and I'm desperate to feel some improvement. I've been like this for too long and I feel like I just can't wait any longer. Maybe the people who felt relief after a few days @ 0.5 mg weren't as severe as I am. I'm wondering if maybe I should just jump to 1 mg right now. I know that's probably not a smart thing to do but I'm just desperate with Christmas coming up in two days and having to be around people, which is really difficult for me.

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21 minutes ago, DopamineSick said:

I'm on my 4th day of Rexulti at 0.5 mg. I'm in the middle of a multi-year battle with severe anxiety/ depression. It seems like I'm fairly treatment-resistant. SSRI's have never worked for me. Only Effexor has ever worked. After stopping it for a while, I'm back on it and it's not working - or maybe I need to give it more time.

Anyways, I've never been prescribed an AAP before. Rexulti is the first. And to be honest, I never really wanted to try them because I just assumed they'd make me feel like a zombie. But now I've been reading that Rexulti actually gives people energy and mental clarity, so that's really encouraging.

I probably got a little ahead of myself when I read that some people start to feel it within 3-4 days. I don't think I'm feeling anything yet and I'm desperate to feel some improvement. I've been like this for too long and I feel like I just can't wait any longer. Maybe the people who felt relief after a few days @ 0.5 mg weren't as severe as I am. I'm wondering if maybe I should just jump to 1 mg right now. I know that's probably not a smart thing to do but I'm just desperate with Christmas coming up in two days and having to be around people, which is really difficult for me.

Rexulti has a 75h half-life, so it takes around a week for it to hit steady-state. Some people feel results within a day or two, but it could take up to a week. I also cross-tapered from 3mg Abilify to 0.5mg Rexulti, and it wasn't quite enough. I had to bump up to 1mg Rexulti before I noticed a marked difference in my mood.

I've been on Rexulti for 9 months now, and I took it in the AM for 6 of those months. It did have a stronger mood benefit, but at the cost of being sleepy. I moved it to PM almost 3 months ago, and it took 6 weeks for my mood to settle back in to a solid pattern. But since it settled, my generalized anxiety is nearly zero, and I have more energy. I also don't get sedated at night when I take it, but I'm cross-wired for sleep anyway (I get paradoxically energized at night.) I don't find it to be activating, so there's no increase in my energy level, but it's not causing any decrease in energy either. With the long half-life, it doesn't seem to be as picky as to the specific time you take it, but AM vs PM did rock my world for weeks when I switched. I highly suggest taking it around the same time every day. 

It doesn't seem to have a very pronounced effect, so you may want to try mood charting for a few weeks to see if it's working. I know I wasn't totally aware of the impact until I had charted my mood for about 3 weeks and I went back and looked at the trend -- my overall mood increased as the drug reached steady-state and didn't plateau until about 1.5-2 weeks later. I characterize it as a drug that works best when you don't realize it's working. I don't take it and feel better every day, or feel a need to take it, but my overall mood is significantly better because of it.

Not too many people here are on Rexulti, or have been on it for a long time. I am one of the very few, and it has literally turned my life around. Unless it causes you intolerable side effects, I highly suggest giving it a solid chance. I can't say enough good things about it.

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6 minutes ago, dtac said:

Rexulti has a 75h half-life, so it takes around a week for it to hit steady-state. Some people feel results within a day or two, but it could take up to a week. I also cross-tapered from 3mg Abilify to 0.5mg Rexulti, and it wasn't quite enough. I had to bump up to 1mg Rexulti before I noticed a marked difference in my mood.

I've been on Rexulti for 9 months now, and I took it in the AM for 6 of those months. It did have a stronger mood benefit, but at the cost of being sleepy. I moved it to PM almost 3 months ago, and it took 6 weeks for my mood to settle back in to a solid pattern. But since it settled, my generalized anxiety is nearly zero, and I have more energy. I also don't get sedated at night when I take it, but I'm cross-wired for sleep anyway (I get paradoxically energized at night.) I don't find it to be activating, so there's no increase in my energy level, but it's not causing any decrease in energy either. With the long half-life, it doesn't seem to be as picky as to the specific time you take it, but AM vs PM did rock my world for weeks when I switched. I highly suggest taking it around the same time every day. 

It doesn't seem to have a very pronounced effect, so you may want to try mood charting for a few weeks to see if it's working. I know I wasn't totally aware of the impact until I had charted my mood for about 3 weeks and I went back and looked at the trend -- my overall mood increased as the drug reached steady-state and didn't plateau until about 1.5-2 weeks later. I characterize it as a drug that works best when you don't realize it's working. I don't take it and feel better every day, or feel a need to take it, but my overall mood is significantly better because of it.

Not too many people here are on Rexulti, or have been on it for a long time. I am one of the very few, and it has literally turned my life around. Unless it causes you intolerable side effects, I highly suggest giving it a solid chance. I can't say enough good things about it.

Thanks very much for the response. You think it would be a bad thing if I jumped to 1 mg today? This is only my fourth day at 0.5 mg but I know some people start at 1 mg. I know I'm probably just being impatient but I'm in a bit of a crisis right now. I'm having lots of repetitive, intrusive thoughts and had something happen recently that just put me over the top.

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2 hours ago, DopamineSick said:

Thanks very much for the response. You think it would be a bad thing if I jumped to 1 mg today? This is only my fourth day at 0.5 mg but I know some people start at 1 mg. I know I'm probably just being impatient but I'm in a bit of a crisis right now. I'm having lots of repetitive, intrusive thoughts and had something happen recently that just put me over the top.

Standard answer of consult with your pdoc about dosage changes. I know when I started my pdoc gave me starter packs for both 0.5mg and 1mg and advised me to start at 0.5mg and move up to 1mg after a period of time, or if I felt like I needed it. All I can say is that the only persistent adverse effect I have that seems to be dose-related is very slight akathisia, but keep an eye out for side effects.

Just try to hang in there for a few days and let it start working!

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