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So I see pdoc soon. I'm on: zyprexa 20 mg and abilify 35 mg and lamictal 300 mg and Klonopin 3 mg (daily totals). I took my final dose of invega today and got off Seroquel xr too. 

I feel less sedated most days and I am losing some weight. But I worry about diabetes and I am psychotic according to everyone and depressed and ZERO motivation. CRAZY

Do I.................

Ask for a different AP to replace the zyprexa. I'm so disappointed zyprexa doesn't seem to be working well. (Do I go back to Seroquel xr....or try vraylar or rexulti or are they too similar to abilify? Ditch abilify for rexulti or vraylar?)

OR

Ask for Prozac because it pairs well with zyprexa. (Pdoc prob won't prescribe me an AD due to my manic tendencies....but I do wonder if it would help with mood/motivation but what about the psychotic stuff I'm apparently having?)

OR

Do nothing and hope I don't get forced IP or worse, because that's where I'm headed. And fast. 

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32 minutes ago, CeremonyNewOrder said:

I'd try rexulti or vraylar. Is clozapine an option? Can you treat the depression without an AD? Have you tried lithium? Rexulti might give you energy and help with depression. I have no experience with vraylar. Hope you get the relief you need. 

Thank you. Yes Clozapine is an option in my pdoc's back pocket as she says. I worry with rexulti with it not helping mania. And it seems just like abilify? But it is an option. It just sucks because it will be expensive. But if it works it will be worth it. 

Lithium I think my pdoc has not tried because my thyroid is already whacky. But I could bring it up I guess.

Thanks for the help. I appreciate it. 

34 minutes ago, kittyloaf said:

Have you tried Latuda? It's considered weight neutral (by my pdoc at least) and also can have antidepressant effects (also according to my pdoc). I've been taking it for a year and a half I think.

I so wish latuda worked for me. It made me manic and psychotic. I went up to 140 mg. I was on that with abilify. Oh boy. Not a pretty sight. I had to be forced hospitalized. I really really was hoping that it would work. 

Thanks for the suggestion though! I really appreciate it. I'm glad it's working for you. 

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Between Rexulti and Vraylar, I would say Vraylar. I personally don't have problems with hypomania, but when I took it, even up to 3 mg, I never really felt that same "barrier" that I feel with most other antipsychotics in regards to that "protection" from hypomania. I mostly just felt antidepressant effects. No, it's definitely not "Abilify 2.0" or anything like that... at least it wasn't for me... It's nowhere nearly as stimulating; in fact, at low doses (for me), it was sedating and made me a little depressed. It took higher doses than normal for me to feel an antidepressant effect. But as for Vraylar, I never felt an antidepressant effect period. I felt "suppressed" by it, in fact (that might be because I was on too high a dose though... supposedly 1.5 mg is for depression; anything higher is for mania). That's all just me though. YMMV, etc.

One thing with Vraylar is that it takes so darn long to reach steady state because of its super long half-life. I don't know the clinical implications of that though. I predict you may need the max dose of either, though, Rexulti 4 mg or Vraylar 6 mg, just with your track record with AAPs.

I would personally say to try one or both of those before trying Clozaril just because of the nature of Clozaril's being a "last resort" medicine. But then again, if your pdoc thinks you have a great chance of success on Clozaril, I would differ to your pdoc.

Also, have you tried Tegretol (carbamazepine)? I think they used to use that in Japan before lithium was available to them, but don't hold me to that.

Wishing you all the best!

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12 hours ago, looking for answers said:

i like vraylar

Thanks for the suggestion. Does it seem to help you feel better?

I'm a little worried about having trouble sleeping like you are having because I don't think vraylar is very sedating as far as I know? I've been on Seroquel or Zyprexa or even saphris at different times for the last 10+ years. I don't remember what it's like sleeping without a sedating AP. Yikes. 

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10 hours ago, mikl_pls said:

Between Rexulti and Vraylar, I would say Vraylar. I personally don't have problems with hypomania, but when I took it, even up to 3 mg, I never really felt that same "barrier" that I feel with most other antipsychotics in regards to that "protection" from hypomania. I mostly just felt antidepressant effects. No, it's definitely not "Abilify 2.0" or anything like that... at least it wasn't for me... It's nowhere nearly as stimulating; in fact, at low doses (for me), it was sedating and made me a little depressed. It took higher doses than normal for me to feel an antidepressant effect. But as for Vraylar, I never felt an antidepressant effect period. I felt "suppressed" by it, in fact (that might be because I was on too high a dose though... supposedly 1.5 mg is for depression; anything higher is for mania). That's all just me though. YMMV, etc.

One thing with Vraylar is that it takes so darn long to reach steady state because of its super long half-life. I don't know the clinical implications of that though. I predict you may need the max dose of either, though, Rexulti 4 mg or Vraylar 6 mg, just with your track record with AAPs.

I would personally say to try one or both of those before trying Clozaril just because of the nature of Clozaril's being a "last resort" medicine. But then again, if your pdoc thinks you have a great chance of success on Clozaril, I would differ to your pdoc.

Also, have you tried Tegretol (carbamazepine)? I think they used to use that in Japan before lithium was available to them, but don't hold me to that.

Wishing you all the best!

Thank you so much for all your help! 

I guess that vraylar might be the way to go then. It seems like rexulti just doesn't have that mania protection. I don't want another latuda fiasco. I mean rexulti sounds nice for depression help but I don't want it shooting me too high like latuda did and ending up IP. Too risky!

Vraylar is expensive but we do have good insurance and I probably will need the highest dose too you are right. 

Does it make more sense to try vraylar than go back to say 600 mg Seroquel xr (my old dose was 800 mg)? Seroquel xr works so so, but I can't lose weight and my fasting glucose levels are always high and I can be drowsy. But at least I stayed out of the hospitals. Would a lower dose ditch some of the Seroquel side effects? I don't know much about vraylar. I need to research it. 

One more question, does vraylar cause TD more frequently than other AAP's? Like the uncontrollable movement TD I'm talking about. I thought I read that but I could be mistaken. 

I've never tried tegretol. Pdoc has never mentioned it. Interesting! I will ask her about it but I think the main move this time will be switching AAP's, unfortunately. 

Thanks again! I am grateful for your help!

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51 minutes ago, Wonderful.Cheese said:

Vraylar is expensive but we do have good insurance and I probably will need the highest dose too you are right.

Can you use copay coupons?

https://www.vraylar.com/savings-bipolar

53 minutes ago, Wonderful.Cheese said:

Does it make more sense to try vraylar than go back to say 600 mg Seroquel xr (my old dose was 800 mg)? Seroquel xr works so so, but I can't lose weight and my fasting glucose levels are always high and I can be drowsy. But at least I stayed out of the hospitals. Would a lower dose ditch some of the Seroquel side effects? I don't know much about vraylar. I need to research it.

I think that would be a question for your pdoc. Personally, if you ask me, if it were me in your shoes, I would try the Vraylar before going back to Seroquel. If the Vraylar doesn't work, you can always go back to Seroquel, but I understand you're at risk for going IP and/or court ordered to go IP and all that bad stuff. :( But If your pdoc titrates you up on Vraylar just the right way (I imagine probably rather rapidly--I don't see anything anywhere about how often the dose can be increased, unfortunately...), I think you'll be fine.

57 minutes ago, Wonderful.Cheese said:

One more question, does vraylar cause TD more frequently than other AAP's? Like the uncontrollable movement TD I'm talking about. I thought I read that but I could be mistaken.

I don't think so. No more so than the others, if not, less so than the others.

58 minutes ago, Wonderful.Cheese said:

Thanks again! I am grateful for your help!

You're most welcome! I hope it's of some help!

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1 hour ago, mikl_pls said:

Can you use copay coupons?

https://www.vraylar.com/savings-bipolar

I think that would be a question for your pdoc. Personally, if you ask me, if it were me in your shoes, I would try the Vraylar before going back to Seroquel. If the Vraylar doesn't work, you can always go back to Seroquel, but I understand you're at risk for going IP and/or court ordered to go IP and all that bad stuff. :( But If your pdoc titrates you up on Vraylar just the right way (I imagine probably rather rapidly--I don't see anything anywhere about how often the dose can be increased, unfortunately...), I think you'll be fine.

I don't think so. No more so than the others, if not, less so than the others.

You're most welcome! I hope it's of some help!

Thank you again so much. I will ask pdoc about Vraylar. Maybe she has patients on it and has experience with it. 

Friday seems so far away. Yikes. I m losing it. Just gotta keep it together a few more days

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28 minutes ago, Wonderful.Cheese said:

Thank you again so much. I will ask pdoc about Vraylar. Maybe she has patients on it and has experience with it. 

Friday seems so far away. Yikes. I m losing it. Just gotta keep it together a few more days

You can do it Cheese.  ❤️

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I'll throw in a vote for Rexulti, based on my success with it, but for mania you will probably need a higher dose (2-4mg) and it does take a long time to hit steady-state due to the long half-life (91h primary, 88h metabolite.) While the mfg doesn't outline specific dosing for mania, only schizophrenia, it's a titration up to 4mg, so I'm guessing treatment for mania would fall into that range as well. I've never had problems with mania, only hypomania, and I don't know that I've even been hypomanic since I started Rexulti. I can speak directly to it's efficacy in treating depression, though. It's been weight-neutral for me at 2mg.

It has a copay coupon on the manufacturer's website too that makes it extremely affordable if you have private insurance. 

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4 hours ago, Wonderful.Cheese said:

Thanks for the suggestion. Does it seem to help you feel better?

I'm a little worried about having trouble sleeping like you are having because I don't think vraylar is very sedating as far as I know? I've been on Seroquel or Zyprexa or even saphris at different times for the last 10+ years. I don't remember what it's like sleeping without a sedating AP. Yikes. 

It does perk u up a bit and has a nice anti depressant boost. My thyroid is off now and some other issues so I dunno what’s causing what...... also could be the coming down on seroquel causing insomnia .

@mmaryland seems to like vraylar too

 

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22 hours ago, dtac said:

I'll throw in a vote for Rexulti, based on my success with it, but for mania you will probably need a higher dose (2-4mg) and it does take a long time to hit steady-state due to the long half-life (91h primary, 88h metabolite.) While the mfg doesn't outline specific dosing for mania, only schizophrenia, it's a titration up to 4mg, so I'm guessing treatment for mania would fall into that range as well. I've never had problems with mania, only hypomania, and I don't know that I've even been hypomanic since I started Rexulti. I can speak directly to it's efficacy in treating depression, though. It's been weight-neutral for me at 2mg.

It has a copay coupon on the manufacturer's website too that makes it extremely affordable if you have private insurance. 

Thanks for the suggestion! I am going to remain on Abilify though I believe is the plan. Would that be an odd combination? Unless pdoc agrees to get me back on Seroquel XR and then change Abilify to rexulti. Or something similar to that.

But I don't know how much change she is going to let me have a say in from now on due to this fiasco. It might be more of a "do as I say" and "no suggestions allowed" kind of appointments from now on I fear. That's what happened with my old pdoc and it was hell and I suffered on the wrong doses and wrong meds for years. I hope current pdoc is different because I really like her and have just started to trust her a little.

Edited by Wonderful.Cheese
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21 hours ago, looking for answers said:

It does perk u up a bit and has a nice anti depressant boost. My thyroid is off now and some other issues so I dunno what’s causing what...... also could be the coming down on seroquel causing insomnia .

@mmaryland seems to like vraylar too

 

Interesting. Thanks for the info.

My thyroid is off too. I have hashimoto's disease. My endocrinologist diagnosed me with this recently. It runs in my family. I'd recommend that you see a specialist (endocrinologist) for thyroid issues. My general Dr didn't know what to do with my thyroid issues but I found a good endocrinologist Dr and he follows me closely and I am doing better. I had two ultrasounds on my thyroid but luckily it was pretty normal, just slightly enlarged. I take a thyroid pill too. Anyway I hope you get your thyroid issues straightened out soon. It sucks to feel that bad.

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10 minutes ago, Wonderful.Cheese said:

Interesting. Thanks for the info.

My thyroid is off too. I have hashimoto's disease. My endocrinologist diagnosed me with this recently. It runs in my family. I'd recommend that you see a specialist (endocrinologist) for thyroid issues. My general Dr didn't know what to do with my thyroid issues but I found a good endocrinologist Dr and he follows me closely and I am doing better. I had two ultrasounds on my thyroid but luckily it was pretty normal, just slightly enlarged. I take a thyroid pill too. Anyway I hope you get your thyroid issues straightened out soon. It sucks to feel that bad.

They think it’s the lithium tossing my thyroid off but we’ll see runnnign more tests but thank you!

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2 minutes ago, looking for answers said:

They think it’s the lithium tossing my thyroid off but we’ll see runnnign more tests but thank you!

Oh I understand. Yes lithium can do that I've heard. I'm sorry that this is happening. Well I hope that all you'll need is a tiny thyroid pill to fix things right up. I hope you don't have to stop the lithium because I think you said it was helping you. That sucks. Sending some good thoughts your way.

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Countdown to pdoc appointment: 1 day 6 hours. 

I really hope she listens to me and let's me switch the zyprexa zydis to something else. It's just not working. I don't want to increase it to 40 mg or anything insane like that either. 

I hope she will still be open to suggestions from me after this fail. My old pdoc sure as hell was not and I suffered for many years on wrong doses/meds and had absolutely no med adjustments when I most certainly needed some. I like current pdoc a lot so I hope she doesn't do that to me. But I worry.

Here's hoping for a good appointment.

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1 hour ago, Wonderful.Cheese said:

Thanks for the suggestion! I am going to remain on Abilify though I believe is the plan. Would that be an odd combination? Unless pdoc agrees to get me back on Seroquel XR and then change Abilify to rexulti. Or something similar to that.

I definitely think, from what I know, that Abilify and Vraylar/Rexulti would be a very odd combination. That would be two dopamine partial agonists, and from what I know, one would basically become a competitive antagonist because of having a higher binding affinity over the other, but that's my elementary understanding, if even that, of pharmacodynamics.

It's more common to have a dopamine partial agonist + a dopamine antagonist/inverse agonist combination. For example, it's pretty common to combine Abilify with low doses of Haldol, Prolixin, or something like that, but sometimes two AAPs are combined too, as has been your case.

This guy who is apparently a pdoc doesn't care for combinations of antipsychotics, and I have to agree with his reasoning. He breaks it down in an easy to understand manner. https://thelastpsychiatrist.com/2007/08/arent_two_antipsychotics_bette.html

I still wonder if somehow your meds could be consolidated better... You've had such trouble with many APs, like having intolerable side effects, not responding well with monotherapy, etc. I know I said trying Vraylar would be better than going straight for Clozaril, but I wonder if going right for Clozaril monotherapy would be worth it? (There are reasons why I say monotherapy and not with Abilify or anything... like the metabolize norclozapine is a dopamine partial agonist itself like Abilify...)  I would be afraid for you though, because you might have to be hospitalized in order to be put on it. Stahl says "when switching from aripiprazole to a 'pine' (clozapine, olanzapine, quetiapine, asenapine), it is recommended to stop aripiprazole immediately and start the pine at a middle, rather than a low, dose. The pine can be up-titrated over a period of 2 weeks." That's quite a while until you reach a therapeutic dose (which I hear is more trial and error for clozapine than systematically titrating to a particular dose...). The biggest downside for clozapine is weight gain. Also sialorrhea but that's not as bad as the weight gain and metabolic syndrome that comes with it. 

 

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i would never start on a mid dose of clozaril. That seems like playing with fire...and for me zyprexa was worse with weight than clozaril, I'm not gaining super fast but I can't lose anything either. I agree with above that abilify+ rexulti/Vraylar is pretty strange

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I have found Clozaril to be an excellent AP. I have been on it over a year so blood draws are only monthly now. It clears my mind and head. Thoughts are no longer jumbled. When I communicate I actually make sense. Only recently did I notice some break through psychosis, lucky for me though I got put on Invega in addition to the Clozaril to destroy any remaining psychosis. I think its worth it to try it out. I did not like Vraylar. It made me restless and I went a week with barely any sleep.

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5 hours ago, mikl_pls said:

I definitely think, from what I know, that Abilify and Vraylar/Rexulti would be a very odd combination. That would be two dopamine partial agonists, and from what I know, one would basically become a competitive antagonist because of having a higher binding affinity over the other, but that's my elementary understanding, if even that, of pharmacodynamics.

It's more common to have a dopamine partial agonist + a dopamine antagonist/inverse agonist combination. For example, it's pretty common to combine Abilify with low doses of Haldol, Prolixin, or something like that, but sometimes two AAPs are combined too, as has been your case.

This guy who is apparently a pdoc doesn't care for combinations of antipsychotics, and I have to agree with his reasoning. He breaks it down in an easy to understand manner. https://thelastpsychiatrist.com/2007/08/arent_two_antipsychotics_bette.html

I still wonder if somehow your meds could be consolidated better... You've had such trouble with many APs, like having intolerable side effects, not responding well with monotherapy, etc. I know I said trying Vraylar would be better than going straight for Clozaril, but I wonder if going right for Clozaril monotherapy would be worth it? (There are reasons why I say monotherapy and not with Abilify or anything... like the metabolize norclozapine is a dopamine partial agonist itself like Abilify...)  I would be afraid for you though, because you might have to be hospitalized in order to be put on it. Stahl says "when switching from aripiprazole to a 'pine' (clozapine, olanzapine, quetiapine, asenapine), it is recommended to stop aripiprazole immediately and start the pine at a middle, rather than a low, dose. The pine can be up-titrated over a period of 2 weeks." That's quite a while until you reach a therapeutic dose (which I hear is more trial and error for clozapine than systematically titrating to a particular dose...). The biggest downside for clozapine is weight gain. Also sialorrhea but that's not as bad as the weight gain and metabolic syndrome that comes with it. 

 

The most trouble I've had I'd say is not responding well to AP monotherapy. 

I wrote a list for pdoc of all I've been going through. Including that both my mom and husband notice a bad change in me since starting zyprexa. The voices, messages, depression, not leaving bed, worry about getting diabetes with zyprexa, skipping everything I normally do, etc. 

I also said I don't know if abilify is working anymore either. And I'd ideally like to be on one AP. I said I'd like to try vraylar or rexulti possibly or give up and go back to 600-800 mg Seroquel xr. I also said possibly adding Prozac but I'm worried because of high mania risk and it wouldn't fix other issues.

I'm frustrated. I know Clozapine would be a reasonable choice at this point. I'm scared of it and don't want to gain weight. I have to fit into that damn bridesmaid dress. I don't know if I'd honestly keep up with the blood draws. It seems overwhelming. Plus the cost of the blood work (which I never did look into). I wonder if pdoc will bring up Clozapine. She did mention I'd need to be IP to titrate up on Clozapine at one point to me. I don't want to be IP either. Ugh.  

I don't know what to do. I just want an AP that works for me that I would be able to make myself take. Just one AP, not two or three. Maybe I'm best off going back to Seroquel xr and eventually trying rexulti in place of abilify. 

Edited by Wonderful.Cheese
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2 hours ago, Iceberg said:

i would never start on a mid dose of clozaril. That seems like playing with fire...and for me zyprexa was worse with weight than clozaril, I'm not gaining super fast but I can't lose anything either. I agree with above that abilify+ rexulti/Vraylar is pretty strange

 

2 hours ago, Iceberg said:

I did clozaril plus Vraylar but stopped cuz the Vraylar really wasn't adding any benefit to what the clozaril was already doing

I'm so scared of Clozapine though. I wish I weren't. I don't know if I could make myself take it. Plus keeping up with the lab work seems so overwhelming. But I'm pretty much out of options. Unless I settle for being moderately psychotic at best with some rare mania yet lots of depressive episodes. Is that as good as it gets?

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1 hour ago, Butterflykisses said:

I have found Clozaril to be an excellent AP. I have been on it over a year so blood draws are only monthly now. It clears my mind and head. Thoughts are no longer jumbled. When I communicate I actually make sense. Only recently did I notice some break through psychosis, lucky for me though I got put on Invega in addition to the Clozaril to destroy any remaining psychosis. I think its worth it to try it out. I did not like Vraylar. It made me restless and I went a week with barely any sleep.

I'm sorry I must seem so stubborn. I am just scared. 

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Well to update everyone I had my appointment with pdoc. She didn't mess around and said point blank that I need to get back on Seroquel XR. She didn't mention my wondering about the newer meds. So I'm to start on 300 mg tonight then 600 mg tomorrow and continue that until Monday and call nurse Monday to let her know if I want to increase to 800 mg or remain on 600 mg. 

In the past I've not had much success with 600 mg and especially since I'm off invega now. I suspect I'm going to need the 800 mg dose. I also will remain on 35 mg of Abilify. 

More details in my blog if anyone is interested. 

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I have a problem doing well on AP monotherapy as well. In my opinion, I would try add on Rexulti, as it brought me out of deep depression and kept me euthymic for the entire time I was on it. However, when I cold turkey'd it, it was awful and I didn't leave bed for almost a week; will never cold turkey an AP again. I've never been on Seroquel XR, but most times I am on an AP that isn't sedating, like Rexulti and Vraylar, I use Seroquel at night to sleep only at 100mg though. Hope all is going well for you, but if you really can't stand the sedation from the Seroquel XR, understandably, I would speak up and really ask about a newer med like Rexulti or Vraylar. I only favor Rexulti right now because it was amazingly awesome for depression and I've only been on Vraylar for almost a month now. Good luck and keep us updated

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