Jump to content

Recommended Posts

I tried searching and didn't see anything.

I have a video call with pdoc this afternoon.  Zyprexa has raised my lipids (a LOT) despite lowering zyprexa dosagle from 30mg.  To the point that both my GP and pdoc are concerned.  Right now I take 10mg zyprexa and 20mg loxapine.  Psychosis is stable (I have seen a few things move, but I think that's just being tired - I don't tend to visual hallucinations).  I have been 'high' at most nights and even some mornings.  So I may have some hypomania going on.

I had emailed pdoc about this, and said I do NOT want a zyprexa increase.  It was my last gasp before clozapine, which I also do NOT want from a lipids perspective.

I am trying to eat a whole foods plant based diet as much as possible (vegan anyways) in the hopes that helps with my lipids.  I've been losing weight slowly but steadily - sort of stalled around 12lbs - I had wanted to lose 25lbs by my lipids retest August 4th, but I'll take 20lbs or whatever now.  I'm running out of time.  

ANYWAYS

I was wondering about trying another medium potency AP, as loxapine monotherapy has worked well in the past (though I went hypo, dose got raised to 70mg, got high prolactin, and for some ungodly reason pdoc doesn't think meds to lower prolactin are good long-term - I will also press him about this today).  So I was wondering about Trifalon, if anyone has any experience with it.

I have tried most of the (oldish) AAPs, and for APs, Haldol (what a fuck up that was) and loxapine.  I'm not particularly interested in a new AAP, as they never work that well - zyprexa has been the best, but to me, the side effects are becoming intolerable.  Especially since one reason people with schizophrenia and severe bipolar die 15 years earlier (from a life expectancy perspective) is cardiovascular disease...hello lipids.

Link to comment
Share on other sites

Hmm.

First, he said perphenazine is very similar to loxapine, so there's not a lot of utility of that over loxapine.

He said with low doses of both loxapine and zyprexa, we're trying to manage loxapine side effects like elevated prolactin.  He feels meds like bromocriptine have side effects long-term that should be avoided.

He's raising rybelsus (when I'm done this box) and I am to stay on zyprexa at the low 10mg dose for now and we'll see what difference rybelsus makes to my weight and lipids.

Which I suppose is reasonable - August 4th is THE date - but I also want to be off of zyprexa dammit.  I know what he's saying makes sense, but I'm not happy.

I feel trapped in a corner, med-wise.  AAPs cause bad metabolic issues for me mostly and/or don't work, and typicals raise prolactin and have either been amazing (loxapine) or a complete disaster (haldol...because who doesn't want to end up in p-emerg on Thanksgiving).  So what option do I have.  I know that's why he's doing this, because realistically clozapine is next.  FML

 

Oh and for my brief ups I can take an extra 10mg of loxapine if I need.

  • Like 1
Link to comment
Share on other sites

4 hours ago, jarn said:

Hmm.

First, he said perphenazine is very similar to loxapine, so there's not a lot of utility of that over loxapine.

He said with low doses of both loxapine and zyprexa, we're trying to manage loxapine side effects like elevated prolactin.  He feels meds like bromocriptine have side effects long-term that should be avoided.

He's raising rybelsus (when I'm done this box) and I am to stay on zyprexa at the low 10mg dose for now and we'll see what difference rybelsus makes to my weight and lipids.

Which I suppose is reasonable - August 4th is THE date - but I also want to be off of zyprexa dammit.  I know what he's saying makes sense, but I'm not happy.

I feel trapped in a corner, med-wise.  AAPs cause bad metabolic issues for me mostly and/or don't work, and typicals raise prolactin and have either been amazing (loxapine) or a complete disaster (haldol...because who doesn't want to end up in p-emerg on Thanksgiving).  So what option do I have.  I know that's why he's doing this, because realistically clozapine is next.  FML

 

Oh and for my brief ups I can take an extra 10mg of loxapine if I need.

Trilafon was a sugar pill for me - no good no bad, even at stupid doses. Fwiw (and obviously this may not mean much) I’ve never heard one perphenazine success story 

Link to comment
Share on other sites

Good to know @Iceberg - I was reading some reviews online and they were for sure mixed.  But I'm sure that's true of all meds.  I was just looking for something that had some sort of comparator with loxapine after my awful experience with Haldol.  

I really do feel frustrated.

And thanks @dancesintherain - totally

Link to comment
Share on other sites

3 hours ago, jarn said:

Good to know @Iceberg - I was reading some reviews online and they were for sure mixed.  But I'm sure that's true of all meds.  I was just looking for something that had some sort of comparator with loxapine after my awful experience with Haldol.  

I really do feel frustrated.

And thanks @dancesintherain - totally

its always frustrating when you feel like your provider isnt fully acknowledging the impact of adverse effects. Are there any AAPs that you havent tried? maybe any of the newer ones? 

Link to comment
Share on other sites

@Iceberg I can't remember all the ones I've taken.  I know for sure I haven't taken risperdal (but I took Invega, meh, plus, I lactated), rexulti (but I took abilify, ended up hospitalized for a little while til I lied my way out), and vraylar (the anxiety sounds so bad I refuse).  Not sure if there any other newer ones available in Canada.  But every AAP I've taken I've had (eventual) bad results on, plus metabolic stuff.  I mean, I spent a night in p-emerg on loxapine, after years of stability (something never achieved on an AAP), but I was between doctors (I think if I'd had a pdoc I wouldn't have ended up in p-emerg - my GP asked me to go there because she thought a pdoc would need to help me), and once my dosage was raised I was fine.  

So I dunno.  My pdoc said he thought I'd need clozapine, but agreed to try zyprexa first.  

Thanks to both of you ( @Juniper29 too) - it is frustrating.  I know he's trying to manage my side effects with my stability.

I feel really blank today.  I've tried working but I just try to read emails and nothing makes any sense to me.  I am having trouble.  My mind feels blank but I get little sudden 'WHEE's so I've taken an extra loxapine.  Probably just make me more out of it.  Have my second shot today though, yay to that.

Link to comment
Share on other sites

That's good to know @Iceberg - that encourages me a bit.

I bitch about metabolic stuff but I just got my 2nd shot at the local mental hospital and unlike the first time, there were NO SKITTLES!  So I got a big bag of chips.

Link to comment
Share on other sites

9 minutes ago, Iceberg said:

I think The other thing to consider is lots of people can get away with doses of cloz at the lower end. There is some evidence that lower doses may be “less bad” for metabolic issues 

Oh good.  When I was walking to the subway to go to my 2nd shot today - and even at home before it - I'll see stationary or moving things (like fluff, leaves etc) and think they're something else - see them as that.  It's like my brain is screwing up the recognition signals or whatever.  I'm not sure it's psych related or not.  Gonna monitor.

 

Link to comment
Share on other sites

39 minutes ago, jarn said:

Oh good.  When I was walking to the subway to go to my 2nd shot today - and even at home before it - I'll see stationary or moving things (like fluff, leaves etc) and think they're something else - see them as that.  It's like my brain is screwing up the recognition signals or whatever.  I'm not sure it's psych related or not.  Gonna monitor.

 

I've had that happen and it's only when I had other psych symptoms going on so I think it is related although not super concerning in itself.

Link to comment
Share on other sites

14 minutes ago, Juniper29 said:

I've had that happen and it's only when I had other psych symptoms going on so I think it is related although not super concerning in itself.

I think I've had them before too - but aren't sure.  Don't think they developed into much if I did.  But, I don't tend to visual hallucinations - once I saw someone at work turn into a demon, but I think it was more of a paranoid delusion?  I think there's overlap too.

Link to comment
Share on other sites

I don't know very much at all about the pharmacology of loxapine. In my professional work experience, I honestly can't remember when I've seen loxapine used clinically, even when I worked on a chronic psychotic disorders unit with psychiatrists who were more likely to prescribe old-school first gen AP's. 

With just a cursory google search, Wikipedia says that loxapine is listed as a typical AP, but structurally similar to clozapine, and some researchers argue that it works more like an AAP than AP. So not sure what to think about that. 

I've also not seen a lot of use of perphenazine (Trilafon). The few times I have as an AP, it was either because they were on it prior to admission, had been working but stopped taking it, and the doc planned on restarting it or was used off-label as a PRN for anxiety (4mg at a time) on an anxiety/depression disorders unit with mixed results. I was also personally prescribed it OP to try off-label as a PRN for anxiety; PRN doses in the 4-8mg range did nothing and when I impulsively decided to try 16mg one weekend, I didn't experience anything positive, only negative (low-grade taedive dyskinesia and akathisia). 

Have you and your prescriber tried or ever considered adding metformin to the Zyprexa? Where I work the psychiatrists try that sometimes with Zyprexa or Clozaril to help manage weight gain and other metabolic side effects. Not sure if the decision making process is based more on scientifically controlled studies or anecdotal evidence from other prescribers or case studies. 

If your prescriber is open to clozapine, it might be an okay alternative to Zyprexa, obviously keeping in mind you'd have to be okay with (initially) weekly blood draws to monitor clozapine level and more important WBC count. 

Link to comment
Share on other sites

Loxapine has been a god send for me @psychwardjesus - when I was on it monotherapy, it's reduced psychotic agitation, helped stop psychotic episodes for years longer (most other meds last 3-6 months), I think I went something like 30 months.

I was on Metformin almost immediately after starting zyprexa, had huge upset tummy, even after reducing dose - you've never really lived until you've shit yourself in your sleep and not woken up - and nothing like trying to walk the dogs, getting 150m and then being like 'We need to go home NOW OH GOD OH GOD OH GOD'.  

I don't have it on my meds list, that's my bad, but I was but on Saxenda after Metformin, it worked well but my insurance changed to need a prior authorization.  Now I take Rybelsus and am doing well on it.  7mg going up to 14mg next week sometime I believe it is.

My pdoc agreed to try zyprexa as a last shot before clozapine, so he's definitely open to it.  I've been doing better with zyprexa side effects since lowering to 10mg from 30mg (why we added the loxapine back in since the zyprexa dose is so low now - I used to be on loxapine monotherapy), but my lipids are still likely bad, they were in April and I think I'd dropped to 15 or 20mg of zyprexa by then.  Retesting in August to give time for lifestyle changes (diet/weight loss) to try to help.  Since the end of April, I've lost 14.3lbs.  Slower than I'd like, but it's coming off, and I haven't been eating perfectly (speaking of lipids).  I am nervous about clozapine weight stuff, but then, with meds and determination I'm dropping the zyprexa weight (8lbs more to go; though, I was already overweight).

My pdoc asked to see me sooner because I told him I'm lactating a bit again (on a measly 20mg of loxapine, ugh) and that I've started (rarely) sleepwalking.  So I dunno what's gonna happen.  

Link to comment
Share on other sites

 Share

×
×
  • Create New...