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Old May 13, 2019, 01:51 PM
Anonymous46341
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I'm wondering if anyone with bipolar type 1 has ever taken Latuda, and what your thoughts/feedback on this are?

I had an emergency appointment with my psychiatrist today and he said he was going to add 20 mg of Latuda to my mix below (all meds below, including Seroquel XR and Tegretol XR). He said that it was his hope that perhaps in the future we could cut down on my Seroquel XR and add more Latuda, if it is found to be helpful.

A concern I expressed to my psychiatrist was that all I ever heard of Latuda was that it was used for bipolar depression. I had never heard of it being helpful for mania at all. Although I have had some significant depression lately, I've also been extremely agitated. I am prone to full blown mania, and especially mixed features. He argued that since Latuda is an "antipsychotic" it would help with both the depressive and manic sides of the illness, but the Latuda website (and everything else I have ever heard of Latuda) seemed solely focused on bipolar depression. So, I called Latuda's medical department and asked about this, and why Latuda ONLY advertises its use for bipolar depression, and not mania. The pharmacist rep there said that it is "Only indicated for bipolar depression". So I asked, "So it's useless for mania or mixed manic episodes?" and she repeated that for mania or mixed episodes it is usually the recommendation that person take a medication like "Depakote", etc. Well, Depakote is the medication from HELL! Plus, I am on Tegretol XR and though Tegretol XR helps keep musical hallucinations from happening for me, it has not been even close to sufficiently helpful at keeping mania away, nor has it been helpful at curbing manias. I am on the highest dose I can be of Tegretol XR without having double vision. My psychiatrist said he does not want to increase my Seroquel XR above 600 mg.

I am feeling a little angry at my psychiatrist. I almost wonder if he really knows enough about Latuda. He said that he has not really prescribed it much in the past and that he has more "inherited" some patients on Latuda. So I asked if those patients had a similar flavor of bipolar disorder as me. He said "Not exactly".

Hey, I'm fine with taking a small dose of 20 mg Latuda to get rid of any depressive stuff going on, but at the same time I don't want the bugger to make me full blown manic. I'm already agitated enough as it is. Plus, the copay for me would be $75 per month. I hope to use a coupon card to reduce it to $15, but still...I don't want the medication to be further destabilizing.

Has Latuda itself actually been excessively activating for anyone here?

I left a message for my psychiatrist telling him everything that Latuda Medical rep said to me.

Last edited by Anonymous46341; May 13, 2019 at 02:31 PM.
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  #2  
Old May 13, 2019, 02:20 PM
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Latuda was indeed too activating for me. It gave me extreme anxiety and agitation and eventually suicidal thoughts. I was on it as my sole medication though so maybe with seroquel on board it wouldn’t be too bad.
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  #3  
Old May 13, 2019, 02:27 PM
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I'm bipolar 1 and laudta is the only AP I'm on and have been stable on it for years. I used to also be on lamictal but quit that as it was too flating I'd not be mad at the pdoc he is trying to get you stable with what tools he has
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  #4  
Old May 13, 2019, 03:18 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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I tried Latuda when it was new. I don't remember what was bad about it but it was very bad. I know this because my pdoc let me quit it after a few weeks and usually she'd encourage me to try longer b/c so few meds work for me we can't "waste" ones that might.

But then a funny thing happened. I was very ill and there wasn't an IOP near me. So I wound up in a NAMI peer to peer class and there were a bunch of people who would say "I've just started this new drug and I feel SO much better". There must have been 4 in the class of maybe 20-25. And all of them were on Latuda.

So I think it can work very, very well. I hope it does for you.
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Old May 13, 2019, 04:37 PM
still_crazy still_crazy is offline
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no personal experience, just...sorry. really. your pdoc is probably thinking of the antipsychotics (especially the newer ones) as a class, not latuda specifically, in saying that they're helpful for mania and depression. to be fair...

i was prescribed abilify when it was -very- new, as in...only approved for Schizophrenia in adults, no media blitz, nothing. just a new antipsychotic with a 'novel mechanism of action.' it was the last one i tried at the time, and it helped...and it even helped my depression. i told my pdoc that it had helped my depression, and he acted as if i was making things up. now, of course...everybody and their mama is on abilify...as an add on for depression.

having said all that, i find it a lil bit...disconcerting, that your pdoc is just throwing a very new, very expen$ive drug your way that isn't approved for -your set of problems- . overall, do you think your pdoc is professional, competent, etc.? i have also seen that pdocs often love shiny new pills, even with ridiculously old drugs that have obviously just been repackaged, as with the stimulants approved for add/adhd. i mean...what's the actual justification for prescribing a $$$ pill over a $$ or even $ pill? blah.

sorry about your situation.
  #6  
Old May 13, 2019, 05:04 PM
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Originally Posted by still_crazy View Post
no personal experience, just...sorry. really. your pdoc is probably thinking of the antipsychotics (especially the newer ones) as a class, not latuda specifically, in saying that they're helpful for mania and depression. to be fair...

i was prescribed abilify when it was -very- new, as in...only approved for Schizophrenia in adults, no media blitz, nothing. just a new antipsychotic with a 'novel mechanism of action.' it was the last one i tried at the time, and it helped...and it even helped my depression. i told my pdoc that it had helped my depression, and he acted as if i was making things up. now, of course...everybody and their mama is on abilify...as an add on for depression.

having said all that, i find it a lil bit...disconcerting, that your pdoc is just throwing a very new, very expen$ive drug your way that isn't approved for -your set of problems- . overall, do you think your pdoc is professional, competent, etc.? i have also seen that pdocs often love shiny new pills, even with ridiculously old drugs that have obviously just been repackaged, as with the stimulants approved for add/adhd. i mean...what's the actual justification for prescribing a $$$ pill over a $$ or even $ pill? blah.

sorry about your situation.
Thanks, still_crazy! I do believe my psychiatrist is competent. He has helped me a lot over the years and has kept me out of the hospital for almost 9 years, while other pdocs in the past (hospital, IOP, others) did no good at all. My current pdoc of several years is an older doctor (73?) and has always tended to stick to the more tried and true. Latuda would be a newish thing for him. He may be making a mistake. Who knows! Or if I'm lucky, it may be helpful. In either case, I communicated with him what the Latuda Med rep said.

Apparently, my pdoc had attended one of the major seminars/conferences? that they all attend on new drugs, etc. This is what seems to have inspired this recommendation for me. I have no idea what they did/didn't say about Latuda at that conference.

I am wary of medications specifically touted as especially good for bipolar depression, and not as much for mania or mixed states. Lamictal at higher doses, and without adequate antimanics, is activating for me. Abilify was activating. Once I was on both together and they sent me into a two-year period of manic hell with psychosis. It is a little scary to hear of another "mostly for bipolar depression" med. Although he is adding it to my current mix and not a blanket substitute. We'll see.

Seroquel XR seems to be a good all-around antipsychotic in that it is very good for mania, bipolar depression, and mixed features. Seroquel XR is not THAT bad, but I'm already up to 600 mg, and it is making me gain weight at these higher doses. I'd likely live with the weight gain, but my cholesterol and triglycerides are both high. My glucose level is inching up too, to just over normal range. The more I gain, the more these levels go up.
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Old May 13, 2019, 05:07 PM
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I took Latuda for a few weeks but it was found to only exacerbate my mixed episode. The agitation was awful. I tried low and high doses. Coming off it was difficult so I came of very slowly. It does help others but I’ve never heard it treating mania.
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  #8  
Old May 13, 2019, 05:21 PM
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It's helpful and interesting just to read that others with bipolar type 1 have even been trialed on Latuda in the past. @Nammu, I'm happy to read that you have been stable for years taking Latuda. May I ask if you also take any other bipolar medications with it at this time? From you post, I assume you don't, but only once took it along with Lamictal.
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  #9  
Old May 13, 2019, 07:15 PM
Nola0250 Nola0250 is offline
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I’m a BP type 2 and I’ve been on Latuda for a year and a half. It was added when Lamictal was not getting me all the way out of my mixed episode. I still had a lot of depression. And agitation, and some manic symptoms. The Latuda helps me a lot.
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  #10  
Old May 13, 2019, 08:51 PM
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Bipolar 1 here, and your story is very similar to mine. I just had an emergency psych appointment as well a little over a week ago and was put on Latuda. She prescribed it specifically for mixed mania and said she's had success with it when it comes to treating mixed mania, often in combination with other things. I am also on Seroquel (lowered recently, but the plan is for me to stay on it), clonazepam, Lamictal (400 mg daily), and gabapentin (being discontinued though).

I have also been wondering why this is being used by her to help me with mania, because I didn't realize that it was only indicated for Bipolar depression until I was already home from my appointment and did my own research.

Since it hasn't even been two weeks, and she only gave me 20 mg samples to start, it is hard for me to really tell what it will be like. But she did tell me to take it in the AM, which is good, because I am concerned about others saying it is sometimes activating. I am hoping that the Seroquel that I am on helps balance it out to avoid the risk of it causing agitation or insomnia, but we'll see. Fortunately, I do not notice any extreme side effects. My symptoms are not yet stable though.

I hope that you find relief soon and that it works well for you.
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Old May 13, 2019, 09:13 PM
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I take propranolol for anxiety and ambien along with Benadryl and melatonin for sleep. I no longer work and my life is very monotonous but I've come to really like it that way. I associat mania with hospitals and love being hospital free. It took me years to appreciate that the high and lows were a package deal and that life is much smoother without em. I used to miss the highs but don't anymore
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Old May 13, 2019, 09:34 PM
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@xRavenx, thanks for sharing about that! I hope we can keep in touch about this (maybe here) since our circumstances and medications are so similar. Wishing you and others the best going forward!
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Old May 13, 2019, 10:13 PM
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I was really mixed when I started it. It helped pull me out of it and I didn’t slide into a depression.

Of course I recently stopped it due to weight gain side effect.
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Old May 14, 2019, 12:21 PM
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@xRavenx, thanks for sharing about that! I hope we can keep in touch about this (maybe here) since our circumstances and medications are so similar. Wishing you and others the best going forward!
Absolutely. It is interesting and helpful to know we are going through something similar involving Latuda and our concerns. I see my pdoc Thursday and will keep in touch!
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Old May 14, 2019, 11:06 PM
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I have bipolar type 1 and my manias tend to be pretty severe and psychotic. I was manic at the beginning of this year and then quickly transitioned into a deep depression so my pdoc started Latuda as well. I am still on a high dose of seroquel so I can’t exactly speak to that but I can tell you that she mentioned to me that 60 MG and above of Latuda start to hit on the mania as well as the depression. I currently take 40 MG of Latuda and I must admit it worked pretty quickly and quite well against my depression and has not, for me, been overly activating.
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Old May 15, 2019, 02:05 AM
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When my daughter ran away a year ago I cried and cried. I was in a deep depression. My doc prescribed latuda. I already am on an antypical anti-p but I tried it at 20mg and in hindsight it helped. I had been on it about 4 months and thought I could come off of it after forgetting to get it refilled and within a few days I was back to being a mess. I restarted it and a few months later my doc thought I should increase it to 40mg. Big mistake, I had all kinds of crazy thoughts while lying in bed trying to sleep so I have stayed at 20mg and its been ok.
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Old May 15, 2019, 06:50 AM
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Thanks for sharing your experiences with Latuda! I'm happy that I started this thread because all of your responses have made me feel a bit better about at least giving it a try.
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  #18  
Old May 15, 2019, 09:14 AM
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I was diagnosed with bipolar 1. I was put on Latuda after being taken off Depakote. With Depakote I was depressed for long periods of time. My IP pdoc tried Latuda as both a mood stabilizer and an antipsychotic. It worked well for about two years. However, I developed akathisia and tardive dyskinesia so was taken off.
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Old May 15, 2019, 09:24 AM
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I was diagnosed with bipolar 1. I was put on Latuda after being taken off Depakote. With Depakote I was depressed for long periods of time. My IP pdoc tried Latuda as both a mood stabilizer and an antipsychotic. It worked well for about two years. However, I developed akathisia and tardive dyskinesia so was taken off.
I'm sorry Latuda eventually gave you akathisia and TD after helping well for a good while. I know how that is. I took Geodon with no side effects for about five years, then got a horrible case of akathisia and had to go off. Honestly, I would even welcome just two years of even more stability, at this point. I know most of us have to have medication changes now and then.

I really hope your TD eventually went away! I imagine your akathisia did. I've had akathisia from various antipsychotics in the past, but it always faded after changing to a med that didn't cause it...at least at first.
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Old May 18, 2019, 05:24 AM
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I have bipolar 2. I tried Latuda and as others have said, I found it extremely agitating. However, antipsychotics as a rule tend to give me extreme anxiety attacks that I never experience otherwise. I was so fearful taking Latuda that I was panicked by Native American flute music on PBS—whoa. The agitation is sometimes described as akathesia.
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Old May 18, 2019, 05:43 AM
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luvyrself, I'm sorry you've had such a hard time with antipsychotics.

I guess different people define things differently, but for me, akathisia is a bit of a different animal from agitation. It's difficult to describe the differences, but I will say that I can be perfectly stable with zero anxiety and have akathisia. That's not the case with agitation, for me.

Last edited by Anonymous46341; May 18, 2019 at 06:11 AM.
  #22  
Old May 18, 2019, 10:54 AM
Unrigged64072835 Unrigged64072835 is offline
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I'm sorry Latuda eventually gave you akathisia and TD after helping well for a good while. I know how that is. I took Geodon with no side effects for about five years, then got a horrible case of akathisia and had to go off. Honestly, I would even welcome just two years of even more stability, at this point. I know most of us have to have medication changes now and then.

I really hope your TD eventually went away! I imagine your akathisia did. I've had akathisia from various antipsychotics in the past, but it always faded after changing to a med that didn't cause it...at least at first.
The TD has gone away for the most part. I still have some when I'm really stressed but not all the time like it was before. Akathisia is gone too.

I have to be careful with APs because some can cause QT prolongation in my heart. Same with Depakote. I'm not needing an AP now so I'm grateful for that.
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Old May 18, 2019, 08:36 PM
still_crazy still_crazy is offline
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have you tried vitamins? melatonin, natural form E, vitamin C, b-complex...all those (combined, lol) helped resolve some odd facial tics i had, for a season...
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Old May 18, 2019, 10:35 PM
UpDownMiddleGround UpDownMiddleGround is offline
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I have been on latuda for quite some time now. Out of everything that I have taken, it has made me the most stable. I take it with adderall and trileptal. When I started to gain weight, i was placed on naltrexone, which helps for the most part. I stay pretty low and when i complained about it, my pdoc reduced my dosage to 40 from 60. I definitely have not had trouble with latuda causing manic symptoms.
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Old May 19, 2019, 07:39 AM
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I have been on latuda for quite some time now. Out of everything that I have taken, it has made me the most stable. I take it with adderall and trileptal. When I started to gain weight, i was placed on naltrexone, which helps for the most part. I stay pretty low and when i complained about it, my pdoc reduced my dosage to 40 from 60. I definitely have not had trouble with latuda causing manic symptoms.
Between what most (but not all) members here have said about Latuda I feel quite encouraged. What adds to the encouragement is that these last four days on Latuda have been progressively better days. I feel very good today.

It's almost impossible, at this time, for me to know if Latuda is affecting my appetite. I'm on 600 mg of Seroquel XR, as well. I had my Seroquel XR dose increased only a few days before the Latuda was added. Seroquel XR at higher doses is not weight friendly for me.

My psychiatrist said if Latuda works out that he would raise the dose and lower my Seroquel XR dose. As you all know, 20 mg Latuda is just a starter dose. Plus, my Tegretol may lessen its effect. I'm hoping I could get down to 300 mg or less of Seroquel XR while on higher doses of Latuda. Then I'd perhaps know if Latuda affects my weight in any way. Doses of 300 mg of Seroquel XR have been weight neutral for me, in the past. We'll see.

If Latuda is not altogether perfect at preventing mania, I guess my Seroquel XR dose could again be manipulated if it will be lowered.

That's interesting that you take naltrexone for appetite control. I had never heard of it being used for that, but I guess I can see it doing that. I took it for a short time a long time ago to reduce alcohol cravings. It wasn't that helpful for me. I found Campral (acamprosate) more effective for that purpose. I don't know if Campral could be used for appetite control, though I see a side effect is "appetite loss". At the time, naltrexone was much cheaper than Campral. Perhaps Campral is now available in generic.
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