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Isn't Clozapine supposed to be the cure all?


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My mom takes me to get lab work for Clozapine or else I wouldn't get it done. The receptionist and the lab people know me now by name. I'm sick of labs. My poor arm. I'm just about done with it all (Clozapine). I don't know if I can stand another blood draw.

Anyway, I take Clozapine like I'm supposed to every night.

Maybe I need a higher dose or something? But isn't Clozapine supposed to be the cure all med that works when nothing else works?

I'm on 200 mg currently all at bedtime. I'm beginning to wonder if this is worth it. The labs, the drooling, the pill added for the drooling, the change of CPAP mask needed, etc.

I'm panicked like what happens if Clozapine doesn't work?! Where does that leave me?!!!?? No options! What do I do then?!? 

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1) yeah...200 is still a low dose 

2) no med is a cure all...-and unfortunately full effect and correct titration of it is slow...really slow for me...but ended up worth it

3) freaking yourself out that you have no options left just makes it all shittier. The good thing about psych meds is docs can be super creative in inventing new options. I have used clozaril in various combos depending on situations. But to call it a failure would mean increasing the dose (albeit very slowly) to find the highest point before the side effects prevent anything more. And if that doesn't work you can back off the dose a bit and try to get improvement by manipulating other meds, either by dose change or overall new med addition/subtraction. Yeah cloz treats resistant symptoms but it won't always fix what other things didn't. But don't let that steal all your hope. The fight isn't over

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When I was on clozapine for 1.5 years it really truly helped my psychosis. However, looking back now I was very numb. I became emotionless, to the point that now, being on the right medications (I am in PHP and it has virtually saved my life), I now get ready, clean, fix myself up, and can actually cry, feel things, it can be hard at times, but it feels good, to feel. You may have a completely different experience. It may take awhile to see a difference, you might not be on the right dose. It's all up in the air. But what I found that works is always being honest with your treatment team. They usually have good judgement and can decide if the medication is working for you or if you need a different dose or be off of it completely and on to something else. I found that not being honest about the reality of my symptoms, because I am a people pleaser hurt me in the long run. My apartment was filthy, I wasn't bathing, I slept all the time...yes I was psychosis free (mostly) but I paid a high price. Now I am psychosis free (mostly) and have good hygiene. Wellness if possible with this illness. Sometimes it just takes time. Message me if you need to, I am always wanting to help <3

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10 hours ago, Iceberg said:

1) yeah...200 is still a low dose 

2) no med is a cure all...-and unfortunately full effect and correct titration of it is slow...really slow for me...but ended up worth it

3) freaking yourself out that you have no options left just makes it all shittier. The good thing about psych meds is docs can be super creative in inventing new options. I have used clozaril in various combos depending on situations. But to call it a failure would mean increasing the dose (albeit very slowly) to find the highest point before the side effects prevent anything more. And if that doesn't work you can back off the dose a bit and try to get improvement by manipulating other meds, either by dose change or overall new med addition/subtraction. Yeah cloz treats resistant symptoms but it won't always fix what other things didn't. But don't let that steal all your hope. The fight isn't over

You’re right. I shouldn’t freak myself out. I have a good pdoc who is willing to try new things. She just became the medical director, so I hope she will continue to see patients. 

I’m just having trouble seeing or feeling if clozapine is helping me more than anything else or not. That could be because of the low dose. And it’s all muddled by the fact that I’m still on 3 other AAP’s. I’m really going to push her today to drop at least one of the other AAP’s, she said invega would be the first to go. That one helped my psychosis but maybe higher clozapine will too.

8 hours ago, BrianOCD said:

A cure all would be a dream...

But maybe it is or isn't perfect for you...like Iceberg said they can tinker with other things maybe to find a sweet spot

Wouldnt it though? It would be such a dream. 

You're right. My pdoc is willing to tinker with doses and meds. Unlike other pdocs I’ve had in the past. I hope I get to keep seeing her. She is now the medical director. 

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8 hours ago, Velvet Elvis said:

Have you tried Haldol?  Some of the older APs have a better track record but can be even worse when it comes to side effects.  

I “kind of” tried haldol. I was prescribed it by my current pdoc and I took it maybe a week. I got too freaked out because I fear TD so much. That’s one thing I don’t think I could live with personally. I’m sorry if that’s vain or stubborn or whatever, but it freaks me out so much. That’s one side effect I’m not willing to get. And I realize that sounds ridiculous coming from someone who’s on 4 AAP’s currently. But they just feel safer to me for some reason in my head. 

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5 hours ago, Gatorgirl said:

I read a study about a person or people who were treatment-resistant even to Clozapine. They were then put on high doses of Zyprexa (between 20 to 60 mg) and they got better. I’ll link the study if I can find it again.

Thanks for the info. I took 20 mg zyprexa zydis for years and gained roughly 100 lbs. I have been able to lose a little bit of that weight by switching to seroquel XR but not a whole lot. It did work for me in the past. But seroquel XR works too. I know my pdoc would be willing to try a higher dose zyprexa if I fail on clozapine. She isn’t afraid to step outside the box. But I do fear gaining weight if I took zyprexa again. Why do all the good or decent meds for me cause such bad weight gain? 

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41 minutes ago, Butterflykisses said:

When I was on clozapine for 1.5 years it really truly helped my psychosis. However, looking back now I was very numb. I became emotionless, to the point that now, being on the right medications (I am in PHP and it has virtually saved my life), I now get ready, clean, fix myself up, and can actually cry, feel things, it can be hard at times, but it feels good, to feel. You may have a completely different experience. It may take awhile to see a difference, you might not be on the right dose. It's all up in the air. But what I found that works is always being honest with your treatment team. They usually have good judgement and can decide if the medication is working for you or if you need a different dose or be off of it completely and on to something else. I found that not being honest about the reality of my symptoms, because I am a people pleaser hurt me in the long run. My apartment was filthy, I wasn't bathing, I slept all the time...yes I was psychosis free (mostly) but I paid a high price. Now I am psychosis free (mostly) and have good hygiene. Wellness if possible with this illness. Sometimes it just takes time. Message me if you need to, I am always wanting to help <3

Oh boy. Can I ever relate. I am a people pleaser too. I will try to be honest today butterfly. Thanks for the inspiration. My home is filthy, I’m not really showering, I sleep a lot or lay around listening to the voices, etc. just like you were doing. 

How is PHP? I am thinking of asking my pdoc for a referral to start one. Do you feel out of place? Are you the only one with a SZ disorder? Did they try to send you IP right away? That has been my experience.

Also a major hurdle is if we can afford it. I’d have to sit down with someone and see if that were even possible. Why is getting proper health care so expensive? It’s ridiculous! I just worry that PHP will cost us into the thousands of dollars. Which is highway robbery. We can’t afford that. Geez I’m better off going IP because at least Medicare part A should cover that. Which is ridiculous.   Because Medicare probably ends up paying more money for me to go IP than for me to go PHP. Ugh. 

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13 hours ago, Wonderful.Cheese said:

My mom takes me to get lab work for Clozapine or else I wouldn't get it done. The receptionist and the lab people know me now by name. I'm sick of labs. My poor arm. I'm just about done with it all (Clozapine). I don't know if I can stand another blood draw.

Anyway, I take Clozapine like I'm supposed to every night.

Maybe I need a higher dose or something? But isn't Clozapine supposed to be the cure all med that works when nothing else works?

I'm on 200 mg currently all at bedtime. I'm beginning to wonder if this is worth it. The labs, the drooling, the pill added for the drooling, the change of CPAP mask needed, etc.

I'm panicked like what happens if Clozapine doesn't work?! Where does that leave me?!!!?? No options! What do I do then?!? 

Don’t give up so early in the game for this one! You’re still on a low dose, and if it ends up stopping the voices, and relieves the death sensor issue, it will be so worth the blood draws. Hold on!

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6 hours ago, Wonderful.Cheese said:

Oh boy. Can I ever relate. I am a people pleaser too. I will try to be honest today butterfly. Thanks for the inspiration. My home is filthy, I’m not really showering, I sleep a lot or lay around listening to the voices, etc. just like you were doing. 

How is PHP? I am thinking of asking my pdoc for a referral to start one. Do you feel out of place? Are you the only one with a SZ disorder? Did they try to send you IP right away? That has been my experience.

Also a major hurdle is if we can afford it. I’d have to sit down with someone and see if that were even possible. Why is getting proper health care so expensive? It’s ridiculous! I just worry that PHP will cost us into the thousands of dollars. Which is highway robbery. We can’t afford that. Geez I’m better off going IP because at least Medicare part A should cover that. Which is ridiculous.   Because Medicare probably ends up paying more money for me to go IP than for me to go PHP. Ugh. 

PHP is amazing. Yes, most people suffer from depression and anxiety, however there are quite a few who have have bipolar w/ psychosis. I also have severe OCD, and talking about my compulsions and having group therapy is so helpful. I also talk about my psychosis. Everyone treats me great and respects me. The only way my PHP can admit you to IP is if you are a danger to yourself or others. Typical laws. Also, we don't really talk about diagnoses we talk about symptoms, family situations, relationships, careers, struggles, coping skills, DBT/CBT, etc. I also see a psychiatrist weekly. I am fortunate that I am on my dads insurance as a disabled adult child so its reasonable. 

I wish you the best of luck in your journey. Clozapine might be the answer to helping your SZA, or it might not. Talk to your treatment team, and give it time.

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11 minutes ago, Wonderful.Cheese said:

My pdoc increased my clozapine to 300 mg without listening to my request to get off one of the other 3 AAP’s I’m on! I’m worried. 

It sounds like your doc probably wants you to get stable on clozapine before you get off the others. 

At my appointment I asked to switch my mood stabilizer to lamictal.  It was based on what I've read about it helping treatment resistant depression.  But she increased vraylar and told me she wanted me to get stable first on that.  She did switch me from pristiq to trintellix, which was nice. 

I know we all want to be better quicker, but it makes sense to wait and try to be patient.  Don't give up till you get what you want.  It will come. 

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I was on 550mg, but my serum levels were toxic, so I've gone down to 450mg - to start with.

Clozapine is a dirty drug, the most powerful antipsychotic available and a damn good antidepressant, sedative and anxiety med.

Unfortunately it will knock you for six, make you drool and will make you have monthly blood tests to safeguard against lethal side effects.

It's one of the last drugs to try. But damn it, it works.

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No clozapine did not work for me. I got through to monthly bloods but on my second month I went red so had to stop.

According to the doctor I have treatment resistant schizophrenia but I dissagree.

Back now on a haldol depot but struggling mentally

Good luck with your treatment I hope it works for you

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19 hours ago, Simba Cub said:

I was on 550mg, but my serum levels were toxic, so I've gone down to 450mg - to start with.

Clozapine is a dirty drug, the most powerful antipsychotic available and a damn good antidepressant, sedative and anxiety med.

Unfortunately it will knock you for six, make you drool and will make you have monthly blood tests to safeguard against lethal side effects.

It's one of the last drugs to try. But damn it, it works.

At what dose did you notice an antidepressant effect? When I first titrated to 300mg, for a few months my mood improved majorly but now my depression and anxiety is coming back and I'm cycling through antidepressants again :( 

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It's so ymmv. 

2 hours ago, CeremonyNewOrder said:

At what dose did you notice an antidepressant effect? When I first titrated to 300mg, for a few months my mood improved majorly but now my depression and anxiety is coming back and I'm cycling through antidepressants again :( 

I get toxic above 300. But for me clozaril has more of a stabilizing anti-manic effect that turns into prophylactic depression action after a certain point. Will say tho that at higher doses, while technically toxic, it almost erased my Suicidality...an effect that I still feel today on 150mgs- low end of the therapeutic system but I don't need a super high dose with my other meds 

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Also, I rarely ever at "upswing" on clozaril and if I do we up the dose and that typically handles it. However, if I get severe breakthrough depression I have needed an add on in the past. Successful options- rexulti, Vraylar(ish) definetly adderall, and I think the best was ketamine but that is pain in the ass and expensive 

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