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Any input is GREATLY appreciated!!!

So I've been tapering my 10mg dose of Zyprexa for the past 3 weeks or so, so that I can start Caplyta.  For the first 2 weeks, I tapered down to 5mg with no problems, however about 9 days ago, I stepped down to 2.5mg.  Since that step down I've felt awful.  My sleep is broken, and I end up waking up between 4-5am filled w/ anxious and restless energy.  My days are filled with more of that restless energy.  I've felt nauseated through the mornings, my body aches, had diarrhea for a few days and I'm tired but can't sleep.  10mg diazepam takes some of the edge off, but not by much and trazodone puts me to sleep but doesn't keep me asleep.  My pdoc rx'ed some intuniv to help with some of the edginess but I swear it does nothing but make my body feel heavy and nothing for the edginess.  I've been on the Caplyta since all this started but I don't think it's the problem, because I'd been on it for about 10 days before the shit hit the fan.

I'm so tempted to take a full dose of Zyprexa to just get some relief but I also don't want to start over again.  Am I doomed to spend the rest of my life on this shit?  When does the agitation stop?  Would Klonopin be better than Valium?  And would clonidine be better than intuniv?

I don't know what to do.

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56 minutes ago, Arj72 said:

Any input is GREATLY appreciated!!!

So I've been tapering my 10mg dose of Zyprexa for the past 3 weeks or so, so that I can start Caplyta.  For the first 2 weeks, I tapered down to 5mg with no problems, however about 9 days ago, I stepped down to 2.5mg.  Since that step down I've felt awful.  My sleep is broken, and I end up waking up between 4-5am filled w/ anxious and restless energy.  My days are filled with more of that restless energy.  I've felt nauseated through the mornings, my body aches, had diarrhea for a few days and I'm tired but can't sleep.  10mg diazepam takes some of the edge off, but not by much and trazodone puts me to sleep but doesn't keep me asleep.  My pdoc rx'ed some intuniv to help with some of the edginess but I swear it does nothing but make my body feel heavy and nothing for the edginess.  I've been on the Caplyta since all this started but I don't think it's the problem, because I'd been on it for about 10 days before the shit hit the fan.

I'm so tempted to take a full dose of Zyprexa to just get some relief but I also don't want to start over again.  Am I doomed to spend the rest of my life on this shit?  When does the agitation stop?  Would Klonopin be better than Valium?  And would clonidine be better than intuniv?

I don't know what to do.

Why are you titrating off the zyprexa? like, was there a major problem? Only asking because caplyta and zyprexa are very different, with different effects so maybe your brain chemicals arent liking the switch and thats part of it? YMMV, that is not anything evidence based just an outloud thought that could very well not apply? Did you call the pdoc with these questions? Maybe they could slow or otherwise modify the taper. Also, caplyta is (I believe) pretty slow to fully kick in... maybe this is a delayed effect? being on the med and in tune with pharmacology, @mikl_pls might be able to help here 

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7 minutes ago, Iceberg said:

Why are you titrating off the zyprexa? like, was there a major problem? Only asking because caplyta and zyprexa are very different, with different effects so maybe your brain chemicals arent liking the switch and thats part of it? YMMV, that is not anything evidence based just an outloud thought that could very well not apply? Did you call the pdoc with these questions? Maybe they could slow or otherwise modify the taper. Also, caplyta is (I believe) pretty slow to fully kick in... maybe this is a delayed effect? being on the med and in tune with pharmacology, @mikl_pls might be able to help here 

I'm titrating due to a common complaint... weight gain.  While it made me a little flat it was good for my anxiety and sleep.  I was hoping I could maintain those benefits and reduce the weight gain and flatness with a switch to Caplyta.  The fact that these meds are so different is a plausible reason for my current distress and something I'll take into consideration.  I have emailed my pdoc and let him know I'm struggling.  I also asked about klonopin and conidine as replacements to help with the agitation.  I hesitate to blame the Caplyta as the PI sheet doesn't list anxiety/agitation as a side effect, but who knows?  Thanks for tagging @mikl_pls

You always seem to respond to my posts.  Thank you for that.

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Youre Welcome! I have had anxiety/agitation between med changes of two meds not known for anxiety, but like I said I am not an expert on caplyta 

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@Arj72

I recently tried to go off zyprexa due to being pre diabetic. My pdoc didn’t even titrate me off of it. Just cold turkey stopped taking it. I lasted not long. I was batshit crazy. It was bad. I also had a throbbing headache most days. And I never really get headaches. I slept horribly too. I also felt this restless drive but I couldn’t do anything but lay in bed I felt so tortured by voices and more. I had some diarrhea but I have IBS D so that is normal for me.

No other med gives me the clarity and stabilization like zyprexa does. I’m scared of becoming diabetic but scared of being institutionalized or worse (dead). So I need to stay on it. I am exercising so I hope I can get out of the pre diabetic zone. I was exercising before COVID and I was not pre diabetic. So I hope this can be reversed. I oddly am losing weight very slowly on zyprexa.

I wish you all the best. I hope you can find mental wellness. Things aren’t perfect for me but it’s quite miraculous how fast things got better once I restarted my zyprexa dose.

I was interested in the capytla (sp?) too. Until I heard it was activating. I need a good strong sedating med on board. At least one. Good luck with that new med. I hear it has a good side effect profile for people with schizophrenia disorders. Just rumors I’ve heard. So take it with a grain of salt. 

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On 9/9/2020 at 6:17 PM, Arj72 said:

Any input is GREATLY appreciated!!!

So I've been tapering my 10mg dose of Zyprexa for the past 3 weeks or so, so that I can start Caplyta.  For the first 2 weeks, I tapered down to 5mg with no problems, however about 9 days ago, I stepped down to 2.5mg.  Since that step down I've felt awful.  My sleep is broken, and I end up waking up between 4-5am filled w/ anxious and restless energy.  My days are filled with more of that restless energy.  I've felt nauseated through the mornings, my body aches, had diarrhea for a few days and I'm tired but can't sleep.  10mg diazepam takes some of the edge off, but not by much and trazodone puts me to sleep but doesn't keep me asleep.  My pdoc rx'ed some intuniv to help with some of the edginess but I swear it does nothing but make my body feel heavy and nothing for the edginess.  I've been on the Caplyta since all this started but I don't think it's the problem, because I'd been on it for about 10 days before the shit hit the fan.

I'm so tempted to take a full dose of Zyprexa to just get some relief but I also don't want to start over again.  Am I doomed to spend the rest of my life on this shit?  When does the agitation stop?  Would Klonopin be better than Valium?  And would clonidine be better than intuniv?

I don't know what to do.

  • What you're describing sounds more like a combination of Zyprexa withdrawal and Caplyta startup effects at the same time actually. Most commonly for the "-pines" like olanzapine and clozapine is the issue of cholinergic and adrenergic rebound upon discontinuation. Olanzapine is a potent anticholinergic, which has calming properties. It can also reduce gut motility. Coming off an anticholinergic not to mention an antiserotonergic (serotonin is also responsible for gut motility) could explain the diarrhea. Olanzapine potently blocks alpha adrenergic receptors (both auto-receptors and hetero-receptors). So you might be experiencing some adrenergic sensitivity that may come across like an overly sensitive fight-or-flight response.
  • Nausea is listed is one of the most common side effects of Caplyta next to somnolence. I've never taken Caplyta but have heard from one other person that the nausea starting up on Caplyta was no joke but they adjusted to it.
  • Intuniv (guanfacine) is an alpha-2 receptor agonist. The alpha-2 recepors act as auto-receptors for norepinephrine and epinephrine/adrenaline. When activated, they slow adrenergic output, when blocked or inactivated, they increase output. It's a feedback loop. Olanzapine has been blocking those receptors thus increasing the amount of signaling norepinephrine. Olanzapine also blocks alpha-1 receptors, so you don't feel that increase in adrenergic flow. Now all the stops are pulled out and your adrenergic system is responding in a sensitive way. Guanfacine will work by activating alpha-2 receptors to reduce norepinephrine output which should help to calm the over activated alpha-1 receptors. To answer your second question, yes clonidine is generally regarded as somewhat more potent than guanfacine and works in the same way.
  • Klonopin is more potent by dose than Valium, but Valium is probably broader spectrum. Can't say for certain though. 10mg of diazepam is roughly equivalent to 0.5mg of clonazepam. When I'm having anxiety/activation like what you're describing, I usually need 1mg clonazepam.
  • Caplyta supposedly takes 5 days to reach steady state. And you can reasonably expect adjustment for 2 weeks beyond that point, and further adjustment with each decrease of Zyprexa. Remember that Zyprexa and Caplyta work very differently though, and it's possible you may be incompatible. Just be sure you give it enough time and be patient. Keep your pdoc in the loop. If he gave you the okay to manage these breakthrough symptoms with Valium and Intuniv then definitely do it. If there's a chance that Caplyta will work for you, it can apparently REALLY work.

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I just got a higher dose of guanfacine today along with a change from Valium 10mg 2x/day to Klonopin .5mg 3x/day.  Doc wants to keep with the Caplyta (I even mentioned going back to Zyprexa) and preferred long term benzo over long term Zyprexa - probably due to my weight over the last year.  We'll see.  I pick up the Klonopin tonight and will do a loading dose of 2 pills before bedtime (per Doc's instructions), then 3x daily following that.  Hope this works.

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2 minutes ago, Arj72 said:

I just got a higher dose of guanfacine today along with a change from Valium 10mg 2x/day to Klonopin .5mg 3x/day.  Doc wants to keep with the Caplyta (I even mentioned going back to Zyprexa) and preferred long term benzo over long term Zyprexa - probably due to my weight over the last year.  We'll see.  I pick up the Klonopin tonight and will do a loading dose of 2 pills before bedtime (per Doc's instructions), then 3x daily following that.  Hope this works.

This sounds like a good plan of attack to me. I'm not surprised your pdoc would prefer you on Caplyta + long-term benzo if needed over Zyprexa because the metabolic safety issues with Zyprexa are a serious concern, whereas Caplyta so far seems to show very little metabolic impact, at least when compared to Risperdal. Theoretically you should be less likely to develop tolerance to Klonopin with consistent dosing as well unlike Valium which does have tolerance issues.

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Yeah, I'm just looking forward to feeling less anxious.  My mood has been good considering the circumstances.  I figure I'll be groggy for a week or two while I adjust to klonopin, huh?  Thanks for all of your input.

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1 minute ago, Arj72 said:

Yeah, I'm just looking forward to feeling less anxious.  My mood has been good considering the circumstances.  I figure I'll be groggy for a week or two while I adjust to klonopin, huh?  Thanks for all of your input.

Yeah when I first get back on Klonopin, I sometimes feel grogginess for the first 3-5 days. After that, I usually do okay. But it can linger for up to two weeks.

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16 minutes ago, Arj72 said:

I just got a higher dose of guanfacine today along with a change from Valium 10mg 2x/day to Klonopin .5mg 3x/day.  Doc wants to keep with the Caplyta (I even mentioned going back to Zyprexa) and preferred long term benzo over long term Zyprexa - probably due to my weight over the last year.  We'll see.  I pick up the Klonopin tonight and will do a loading dose of 2 pills before bedtime (per Doc's instructions), then 3x daily following that.  Hope this works.

agree with @browri that it sounds like your pdoc is on top of things. Good luck with the caplyta, keep us updated. I thought my pdoc would never consider it but lots of positive feedback here so who knows 

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2 minutes ago, Iceberg said:

agree with @browri that it sounds like your pdoc is on top of things. Good luck with the caplyta, keep us updated. I thought my pdoc would never consider it but lots of positive feedback here so who knows 

Will do.  I'll give another update in 2 weeks.

Thanks all.

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11 hours ago, browri said:

@Arj72 How do you feel now that you're 2 weeks further in?

Funny you ask the same day I check back in.  I can’t remember how long I’ve been in the caplyta now.  The good?  I have no depression.  The bad?  I’m still agitated even after a course of klonopin to get me through the start up phase and am now on 100mg seroquel XR for all day anxiety coverage.  Life is okay for now.  Sure I wish I feel better but I need to take a break from changes for at least a couple more weeks.  Will update again.

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