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There seems to only be really old information on this, so hopefully this isn’t a duplicate post.

what are people’s experiences on fanapt? My pdoc is concerned about the weight gain I’ve had with zyprexa and thinks it’s time to try something different. 

My past attempts are in my signature, but in case you are on a phone - risperdal (pseudoparkinsonian syndrome), abilify (akathisia), seroquelXR (dystonia and dyskenisia), seroquel (weight gain), geodon (don’t remember but it was bad), latuda (went manic), invega (balance and listing issues).  Cogentin gives me blurry vision and I can’t take propranolol because of being on prazosin.

zyprexa has been good to me minus the weight gain and seroquel was as well.  Risperdal had a great brain quieting effect. We discussed what remains and she thinks fanapt makes the most sense of what’s left, so I’m curious about any experiences.

im not good at understanding the affinity/receptor/etc stuff.

 

shes also halving the titration schedule, so it will go more slowly than in the kits.  

Edited by dancesintherain
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2 hours ago, dancesintherain said:

There seems to only be really old information on this, so hopefully this isn’t a duplicate post.

what are people’s experiences on fanapt? My pdoc is concerned about the weight gain I’ve had with zyprexa and thinks it’s time to try something different. 

My past attempts are in my signature, but in case you are on a phone - risperdal (pseudoparkinsonian syndrome), abilify (akathisia), seroquelXR (dystonia and dyskenisia), seroquel (weight gain), geodon (don’t remember but it was bad), latuda (went manic), invega (balance and listing issues).  Cogentin gives me blurry vision and I can’t take propranolol because of being on prazosin.

zyprexa has been good to me minus the weight gain and seroquel was as well.  Risperdal had a great brain quieting effect. We discussed what remains and she thinks fanapt makes the most sense of what’s left, so I’m curious about any experiences.

im not good at understanding the affinity/receptor/etc stuff.

 

shes also halving the titration schedule, so it will go more slowly than in the kits.  

I took fanapt back in the day when it first came out. I was not on it very long. Maybe a month or two? But I recall it not working for me at all. I got up to the highest dose. I was so freaking crazy I needed to switch meds ASAP. I think I tried  saphris or Seroquel again at that point. I was placed temporarily in the group home also.

I simply lost it. It was probably just me but I just got no relief and kept getting worse. I was even more batshit then though. So take what I say with a huge grain of salt. Also that was my only AAP at the time and I don't fare well with only one. 

I don't think I gave it a fair shot either. It probably needed longer to work as the titration if I remember correctly was slow going up. Something to do with the fainting or low blood pressure it can cause? 

Just looking at your list, ever tried saphris or a typical AP or Clozapine or re trying Seroquel at a lower dose? Just ideas. 

Good luck with the fanapt! I hope it treats you better than it treated me. It's a shame that zyprexa is a no go. It seemed to help you, at least from what I saw. Ever try metformin with zyprexa? Or adding topiramate?

Sorry. Just thinking out loud. Please ignore if you want. 

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If you're taking prazosin, you may have to stop taking it if you start taking Fanpat because they are both potent α1 adrenergic antagonists. Also, the up-titration for Fanapt is kinda slow if I remember correctly. (I've not taken it before, I just remember reading about it.)

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Hi! Thank you both.

cheese, I think I remember your fanapt trial.  That was not good.  I haven’t tried the topicals because I’ve hit so many movement disorders with the newer ones that I don’t even want to risk it.  Saphris I can’t dp because I can’t handle ODT meds...I gag and/or throw up.  I tried it for about a week and couldn’t get it down.  I think we are down to fanapt, rexulti, and vraylar.  I gained 50 pounds on seroquel, so it’s not on the table.  I’ve gone the metformin/topamax route and it didn’t do much.  I’m also a little wary of adding another med to take away the side effects.  One benefit of the most recent hospitalization (November 2017) was reducing the total pill count.  If I can swap AAPs I’ll be a lot happier.  I am scared though.

mikl_pls thanks for letting me know.  I’ve left a call for my psychiatrist.  I’d honestly rather try a different AAP than go off prazosin.  I’ve only had two nightmares in the past month and I was having them daily before I started taking it.  That said, it may be that I’ve done enough trauma work that it wouldn’t be as big of a problem.  I don’t know how you tell if you’re ready to go off it.  I didn’t realize it would be a problem.  I’ll see what she says.

Edited by dancesintherain
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1 hour ago, dancesintherain said:

mikl_pls thanks for letting me know.  I’ve left a call for my psychiatrist.  I’d honestly rather try a different AAP than go off prazosin.  I’ve only had two nightmares in the past month and I was having them daily before I started taking it.  That said, it may be that I’ve done enough trauma work that it wouldn’t be as big of a problem.  I don’t know how you tell if you’re ready to go off it.  I didn’t realize it would be a problem.  I’ll see what she says.

It has been said that Fanapt can be useful for those with PTSD itself because of its affinity for the α1 receptor. So theoretically you could probably replace the prazosin with Fanapt. I don't know exactly how the binding affinity compares for Fanapt vs. prazosin for the α1 receptor. But here's an article about using Fanapt for PTSD.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4140622/

I hope that gives some insight into using Fanapt.

There are also a few other SGAs you haven't tried, I believe, by looking at your OP and your signature: clozapine (last resort, of course... Has pretty potent α1A antagonism anyway...), Rexulti (has potent α1B antagonism, even more potent than Fanapt's α1 antagonism, so might interact with prazosin...), Saphris (has potent α1 antagonism, so might interact with prazosin), and Vraylar (not much α1 antagonism really to speak of...).

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thanks!  interesting, hadn't heard of that one.  makes me a little more open to dropping the prazosin if that's what my psychiatrist recommends.  I have a message in to her and she's looking into it more currently.  I'm running out of options, but there are a few more out there (like what you named, though I can't handle the ODT aspect of Saphris...I'd throw it up...which is a shame because it seems like a good fit).  I guess I'll just see what she says. 

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so my psychiatrist's initial response to my message was "we'll check the lithium level in 10 days."  I thought I had left a fairly clear message about what the actual concern was.  I let her assistant know that that wasn't what my concern was--that it was related to blood pressure dropping on both medications, so I was worried about the combined effect.  When I got my doctor on the phone, she asked if I'd ever had trouble with low blood pressure.  I explained that there were a few times when I was hospitalized that it was too low for them to be comfortable giving me the prazosin, so yes.  Her response was "but that's a blood pressure medication."  I let her know that I knew that, but that the concern was the same.

She ended up deciding that because we're starting on a low dose and slowly, she'll just watch and see.  I'm a little worried.  She mentioned buying a blood pressure cuff to see what the readings are.  I don't know how to use one, but I might do that and find out. 

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so far not awful.  not fun, but manageable level of not fun.  The first night at each dose I was unable to sleep.  Got about 4 hours each time during a 10 hour window of time.  Absolutely exhausted the next day and no other symptoms, so not a manic problem.  (However, it did trigger anxiety related to going manic--but that's a story for another day.) Fortunately it only happened on the first night of each dose.  The second night was fine--a regular 8-9 hours.  It's still a little less than my normal, but it was pretty manageable.  

I know four days isn't too much to draw a pattern from, but it seems like it's probably the case because of how much the two day intervals mirrored each other.

I've had a few more headaches than normal.  I'm guessing that's probably dehydration, however, and I've bought some large water bottles to handle that issue.

I also had some abdominal pain last night, but I think it's either lithium or a coincidence.  

 

when i type it all out, it looks worse than it feels.  I can live with it so far.  And although it's probably too soon to know that the effects are linked to it, my head has felt quieter (not in terms of hearing voices--I have a history of that, but not present--but just a bit clearer in a good way).   

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did you get a blood pressure monitor? we have a wrist one that is easily operated and gives reliable readings (our primary doctor recommended it). we find keeping an eye on the numbers we can self-monitor (weight, blood sugar, blood pressure) very helpful.

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interesting--I didn't know that that's a thing.  I hadn't been monitoring it so far.  My psychiatrist said that she'd check it at this appointment.  But I should probably get something on my own also.  I know that one time I woke up in the middle of the night and got out of bed too quickly, but I've had that happen without the medication too. 

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thanks iceberg...I realized there was a risk (after mikl_pls pointed it out), but that makes sense...I realized it was potentially drug-related, but didn't put two and two together.  My doctor's going really low and slow...she cut the dosage for the titration pack in half.  I've read online horror stories (since not too many people here took it) and they all involved people who started around 3mg or 4mg twice daily.  i started at 0.5mg twice daily, so she seems to know what she's doing!  now I just have to hope that the crap sleep and then better sleep trend continues. 

Edited by dancesintherain
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3 hours ago, dancesintherain said:

thanks iceberg...I realized there was a risk (after mikl_pls pointed it out), but that makes sense...I realized it was potentially drug-related, but didn't put two and two together.  My doctor's going really low and slow...she cut the dosage for the titration pack in half.  I've read online horror stories (since not too many people here took it) and they all involved people who started around 3mg or 4mg twice daily.  i started at 0.5mg twice daily, so she seems to know what she's doing!  now I just have to hope that the crap sleep and then better sleep trend continues. 

More doc's should follow her lead

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I agree.  We decided together to try to stick it out and to see if getting to a set dose (3 mg twice daily) would eliminate the problem.  She hadn’t heard of it happening and pulled up a few journal articles that actually saw the opposite (hypersomnia).  She didn’t doubt that it was happening though.

im supposed to do 1.5 mg twice daily for two days and then 2 mg twice daily and 3 mg twice daily.  Two weeks after getting to the 3 mg twice daily I’m supposed to cut the zyprexa back from 10 mg to 7.5 mg...and then if all that goes well, I cut it by another 2.5 mg each two weeks.

i don’t see her for a bit because she will be on vacation, but the plan makes sense to me.

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So apparently it’ll require “step therapy” and a PA.  I meet the step therapy requirements pretty easily.  I have a year on one of the meds and nine months on another and they only require thirty days of two.  But it’s an unnecessary stressor because I don’t know how long the process will take.  I have about a month’s worth of samples, so hopefully that’ll be long enough and I won’t have any issues with getting it approved.  

Ick.

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Curious if anyone has suggestions for the sleep issues.  So far, it's better than it was, but that doesn't say much because the former insomnia was 4-5 hours per night total, despite trying for 10 (i.e. go to bed at 10am and wake up at 8am, but only be asleep for 4-5 hours out of that window).  These days, I'll sleep in 1.5-2 hour chunks at the beginning and then I can usually get a little longer chunks of time toward the end.  The problem is it ends up being not restorative because it's so scattered and because the wake-ups are so long (30-45 minutes usually).  It's also hard because I'm usually wanting to go to bed at 9pm-ish, but my body isn't anywhere near ready.  I've resorted to benadryl and/or seroquel sometimes, but neither sustains sleep.

I'd ideally like to avoid a drug-based solution...I hate treating side effects with more medications. 

My psych and I debated taking it all at once in the morning.  It's not ideal, because the half-life is only 18-26 hours.  But it has been done before (though strangely all at night because of people having issues with daytime sleepiness---apparently I'm the exception to the norm).  She also recommended just taking it earlier in the evening, but I'm afraid that I'd start forgetting it if I did that.  I'm good at remembering morning and evening, but I don't think I'd consistently remember a mid-afternoon dose. 

Am I missing any ideas other than those two?  Or should I give in and take something for sleep?  I'd rather not switch drugs this soon because so far I like the impact it's having on my brain.  My thoughts are much clearer than they are with zyprexa and my head seems "quieter" and a little "slowed down" (not in the sense of voices, just in the sense of different trains of thought). 

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1 hour ago, dancesintherain said:

Curious if anyone has suggestions for the sleep issues.  So far, it's better than it was, but that doesn't say much because the former insomnia was 4-5 hours per night total, despite trying for 10 (i.e. go to bed at 10am and wake up at 8am, but only be asleep for 4-5 hours out of that window).  These days, I'll sleep in 1.5-2 hour chunks at the beginning and then I can usually get a little longer chunks of time toward the end.  The problem is it ends up being not restorative because it's so scattered and because the wake-ups are so long (30-45 minutes usually).  It's also hard because I'm usually wanting to go to bed at 9pm-ish, but my body isn't anywhere near ready.  I've resorted to benadryl and/or seroquel sometimes, but neither sustains sleep.

I'd ideally like to avoid a drug-based solution...I hate treating side effects with more medications. 

My psych and I debated taking it all at once in the morning.  It's not ideal, because the half-life is only 18-26 hours.  But it has been done before (though strangely all at night because of people having issues with daytime sleepiness---apparently I'm the exception to the norm).  She also recommended just taking it earlier in the evening, but I'm afraid that I'd start forgetting it if I did that.  I'm good at remembering morning and evening, but I don't think I'd consistently remember a mid-afternoon dose. 

Am I missing any ideas other than those two?  Or should I give in and take something for sleep?  I'd rather not switch drugs this soon because so far I like the impact it's having on my brain.  My thoughts are much clearer than they are with zyprexa and my head seems "quieter" and a little "slowed down" (not in the sense of voices, just in the sense of different trains of thought). 

Just a non med thought suggestion, would setting a recurring alarm on your phone help? That's the only way I don't miss meds. I have mid afternoon and evening ones too.

They have tons of apps designed to do just this as well. I have one too. It's schizophrenia health storylines I believe (I have an Android phone with Google play store). Very helpful. I can "snooze" the alarm for 15 mins, 30 mins, or one hour too. So if it's not convenient I can snooze the alarm and take it like half hour later. But there are other great apps out there I'm quite sure. 

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