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What do I need to know?

I work as a Senior Policy Consultant, I need my brain.  This is my biggest concern though I believe @aura has continued to function cognitively.

Pdoc wants me to consider Clozapine and I see him in two weeks to discuss.  Haldol was a wash so I'm restabilizing on Loxapine for right now.  

I know that:

-WBC, myocarditis, constipation, bed wetting (yikes!)

I have called pharmacies and found some that understand how to dispense it and the whole patient registry thing (is that just in Canada?).  I know weekly blood tests for the first six months, then every two weeks, then after a year monthly.  It's a pain but if it works I'm willing to do it.

Re:  weight gain and diabetes...so Clozapine changes the metabolism to burn fat, meaning carbs just sorta stick around and cause insulin resistance, correct?  I was thinking of trying to eat keto for this reason.  If I eat lots of greens etc. is this the wrong type of fibre or as long as I'm on the proactive laxitive, I'm okay?  

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haven't taken it personally, but i've picked up from around here that drooling can be a common side effect as well, as well as sedation. also, i've heard plenty of people say that it's important to go up slowly. i know @Wonderful.Cheese had a tough time with side effects after a relatively fast taper up. i think @Iceberg also takes cloz and has done well on it.

it's definitely not an easy decision to make. keep us updated.

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Clozapine saved my life. I'm not exaggerating. I'm back in school full time able to think and work with ease. I still have issues (see blog) but they are intermittent and don't last long.

The only two side effects i don't like are weight gain and drooling. But for me it's worth it. PM me if you want to know more!

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I don't want to chime in negatively, but I was on clozapine briefly and had a bad experience. I wet the bed every night, drooled all over my pillows, and gained an excessive amount of weight. I also was taken off all my other meds cold turkey when I was transitioned (I moved up fast too) and had a lot of issues with my mood going wild. It was a bad experience, but I think I'd be willing to try it again if nothing else worked. This time around I'd demand to go up slower in dosage, not be taken off every other med cold turkey, and I'd go on a low carb diet when taking it. There are a lot of other meds I'd try first before going back on clozapine though. It would be an absolute last resort. I reached the bottom of the barrel of what was offered in New Zealand, so clozapine was my last option there. The US has a lot more options in drug choice, though, so I still have a lot of things I can try out before I have to think about clozapine again.

Edited by saintalto
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2 hours ago, echolocation said:

haven't taken it personally, but i've picked up from around here that drooling can be a common side effect as well, as well as sedation. also, i've heard plenty of people say that it's important to go up slowly. i know @Wonderful.Cheese had a tough time with side effects after a relatively fast taper up. i think @Iceberg also takes cloz and has done well on it.

it's definitely not an easy decision to make. keep us updated.

Yes I’ve done well at relatively low doses. My family describes me as a “totally different person” since getting on the right dose

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3 hours ago, jarn said:

What do I need to know?

I work as a Senior Policy Consultant, I need my brain.  This is my biggest concern though I believe @aura has continued to function cognitively.

Pdoc wants me to consider Clozapine and I see him in two weeks to discuss.  Haldol was a wash so I'm restabilizing on Loxapine for right now.  

I know that:

-WBC, myocarditis, constipation, bed wetting (yikes!)

I have called pharmacies and found some that understand how to dispense it and the whole patient registry thing (is that just in Canada?).  I know weekly blood tests for the first six months, then every two weeks, then after a year monthly.  It's a pain but if it works I'm willing to do it.

Re:  weight gain and diabetes...so Clozapine changes the metabolism to burn fat, meaning carbs just sorta stick around and cause insulin resistance, correct?  I was thinking of trying to eat keto for this reason.  If I eat lots of greens etc. is this the wrong type of fibre or as long as I'm on the proactive laxitive, I'm okay?  

Pdoc suggested something similar for me on diet. Also, the us also has a system so it’s not just Canada. And the really scary side effects get lots of attention but are pretty rare. My pdoc is like 60 and Has never had a patient develop the wbc thing. Not that it never happens, but it maybe shouldn’t be a dealbreaker 

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4 hours ago, jarn said:

I need my brain.

We need your brain too, jarn.

I heard a shrink from Mayo touting it's efficacy at a bipolar biobank thing I'm involved in.  I've mentioned clozapine to my pdoc and she talked about the side effects, weekly testing, etc.  I'm not sure I'm ready to go that route.

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4 minutes ago, Will said:

We need your brain too, jarn.

I heard a shrink from Mayo touting it's efficacy at a bipolar biobank thing I'm involved in.  I've mentioned clozapine to my pdoc and she talked about the side effects, weekly testing, etc.  I'm not sure I'm ready to go that route.

It seems to sometimes be love/hate among different pdocs. I had one never even mention it, one not like it, one suggest it but literally only to avoid ECT and one who likes it a lot for really treatment resistant cases

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Thanks everyone!  Lots to think about.  

...perhaps I need to invest in some adult diapers.  Sigh.  

I am seriously considering this.  

My pdoc will cross-taper me I believe and I will ask him to take me up slowly.  

I've tried most AAPs and honestly don't believe they work for me.  I know Clozapine is an AAP but it seems different somehow in efficacy so I'm more hopeful it would actually work properly.  

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Hey @jarn! Yes my pdoc did try me on clozapine. She said it would really really help me out.

She went up super fast on the dose. Like too fast for me. I was up to 600 mg I believe all of a sudden it was like. I had bad drooling and my WBC was high for some reason. It went back to normal after I got off clozapine. Odd. I didn’t have any weight gain. I seriously believe seroquel was the worst weight gain offender for me. I don’t want to go on that again.

If I got desperate, I’d try clozapine again. But go low and slow with dosing. 

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Clozapine has cured my psychosis like 90%. The only pain in the ass I get from it is weight gain. I wouldn't worry too much about the low white blood cent count. My current doc has never had it happen to one of her patients. All I can say is I was terrified of taking clozapine before but now I'm glad. I think it should actually be more aggressively pushed for people with psychotic disorders. 

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You:  "Voices say I'm the shit"

Me:  "Manic psychosis says I'm the nazz"

I've got to really consider clozaril.  I absolutely cannot have another episode like this recent one.  At least for a couple of years to stabilize my life a bit

Edited by Will
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49 minutes ago, Will said:

You:  "Voices say I'm the shit"

Me:  "Manic psychosis says I'm the nazz"

I've got to really consider clozaril.  I absolutely cannot have another episode like this recent one.  At least for a couple of years to stabilize my life a bit

My quote is just a joke from an Eels song. My voices are nasty too.

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I can't say that clozapine has given me a "normal" life, but I am no longer in a continuous nightmare...it is a very high maintenance medication, especially in the beginning, at least in my experience...the weekly blood draws, the frequent visits to pdoc, and being patient when titrating up. Also getting used to the drooling, the severe constipation, the fact that I need at LEAST 12 hours of sleep or I cannot function AT ALL. My symptoms were so severe, without clozapine I don't think I would make it. It really is my life-line...

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6 hours ago, Wonderful.Cheese said:

Hey @jarn! Yes my pdoc did try me on clozapine. She said it would really really help me out.

She went up super fast on the dose. Like too fast for me. I was up to 600 mg I believe all of a sudden it was like. I had bad drooling and my WBC was high for some reason. It went back to normal after I got off clozapine. Odd. I didn’t have any weight gain. I seriously believe seroquel was the worst weight gain offender for me. I don’t want to go on that again.

If I got desperate, I’d try clozapine again. But go low and slow with dosing. 

Oh I thought it dropped WBC!  Odd!

6 hours ago, Will said:

Can you take clozapine when episodic and then get off in remission ??

I won't be in remission if I'm not on meds, in my experience - it'd be a nightmare.  Going on to a non-therapeutic dose of Haldol spiralled me into psychosis in a day.  I NEED to be regularly on an antipsychotic.  

@CeremonyNewOrder this is very good to hear - thanks.  I'm more concerned about bed wetting, and sedation like @Butterflykisses has experienced - I need to be able to get up for work!  But I am very glad it's worked so well for you guys!!!!!  This is good to hear.

Edited by jarn
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I've been on clozapine for 9 and 1/2 years.  I've been doing well.  I've not had any issues with my wbc.  I've not developed myocarditis.  I can't judge the constipation aspect because I have IBS-C (dxed before clozapine, but I don't think it made it worse).

In the US,  you do once week for 6 months,  then every other week for 6 months.  Then after a year it's once a month.  Since I've been on clozapine for so long,  I go once a month.  It's worth it IMO.

I've been fortunate not to have gained weight from clozapine.  As far as the diabetes goes,  I've not had any issues with my blood sugar.  I get fasting blood work done once every 6 months to continually check for that.  I do make sure to watch what I eat for general health anyways.

When I was started on clozapine,  I was started on 25mg every night for the first week.  It was then increased in 25mg increments every week till I got to 300mg.  I take my clozapine all at bedtime to reduce daytime sedation.  I don't get sleepy during the day from clozapine.

I don't find that I have any cognitive issues from clozapine.

I don't get the drooling side effect.

I don't get eps, akathisia or tremors from clozapine.

I think I covered everything.  If you have further questions, please ask.

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