I was pointed here by someone else, who told me that there were a few people with Clozapine experience on this forum.

Barring something unusual, I'll be starting on Clozapine within a couple of months. I was wondering if anyone had any experience with this med? What side effects did you experience? Pdoc has told me a little (he'll be telling me more when I actually start taking it ) but I'm wondering about people's actual experiences.

[Moogieotter]

Hey,

Welcome to Bipolar. Here is cashart10's thread:

http://forums.psychcentral.com/bipol...l-day-1-a.html

Here's BtR's:

http://forums.psychcentral.com/bipol...-clozaril.html

Seems you are all starting this treatment about the same time! We're here to support!

moogs

[BeyondtheRainbow]

Yeah, as Moogs pointed out I'm going to be starting it in about 2 weeks after months of excuses to delay it. I have to go off Seroquel first so will be hospitalized to allow a rapid taper of that to get the bad stuff over with.

It is supposed to be a highly effective drug for many people, and if you haven't responded well to other treatments it is more likely to work for you. There is a risk of your white blood cell count dropping so for the first 6 months you have to get blood drawn weekly, then evey other week for 6 months then every month long-term. They will not dispense the meds unless you've had the bloodwork and you only get enough to get from one blood draw to the next. This is supposed to be strictly monitored through a registry the dr and pharmacist must be part of and which your dr enrolls you in at the start.

Dosing starts very low and works up fairly rapidly but it is generally 2-3 weeks to get to a target dose I think.

Side effects vary. My pdoc says they are usually pretty mild. She has not seen weight gain although that can happen. A lot of people have drooling at night and looking on the internet quite a few have had troulbe with nighttime incontinence. My pdoc has not had anyone complain of that one.

It can't be taken with Seroquel and possibly other APs (don't know) because of a high risk of a cardiac problem. One reason I'm going IP to do this is so that they can do EKGs while I still have Seroquel in my system to be sure I'm not having that interaction.

If you want to know more please ask. I've been researching it and asking my pdoc questions or months so I feel like I'm pretty familiar with it. And I'm sure I'll be psoting on here about it once I'm home from the hospital where there isn't the privacy o check PC, much less wrie on it.

Thanks. I'm currently slowly tapering off Zyprexa (Olanzapine). Unless I suddenly improve I'll be starting on Clozapine during the taper (if I worsen) or after the taper (if things go well). Or not at all if the taper makes me improve (which is a very small possibility.. the depression can theoretically be a result of the olanzapine, and if that lifts, I might not need clozapine).
I was wondering about the weight gain. Pdoc didn't mention it besides once saying that just about all AP's have weight gain of some sort. The information on internet about clozapine said it might happen, but they also say that for abilify (aripiprazole), and that's considered to be weight-neutral. So it made me wonder how big the 'might' was.
Pdoc mentioned constipation, and that it can be severe to the point it makes your intestines shut down fully. Given that I've always been constipation-sensitive, I'll be taking Macrogol sachets every morning and evening when I start.
Pdoc also mentioned drooling - said I might want to put a towel on my pillow.
Pdoc also said that the white blood cell thing wasn't necessarily more risky than with other AP's - only with clozapine it had been researched. But yeah, the blood draws. Luckily those have never bothered me.
Nighttime incontinence - I hope I can pass on that. A couple of years ago I did two stints of lorazepam (Ativan) for sleep and I had nighttime incontinence the first two or three days both times I took it. But when I recently took it, I didn't have any of that. So maybe I've outgrown that?

Again, thanks for your information, both of you.

[cashart10]

I have only been on this med for about 2 weeks. I've been on 100MG for about half of that as I was too sedated to function (and now that sedation has improved, I'm still on 100MG as I am waiting on the results of a blood test that labcorp lost). I've been stable for about week. i think it is too soon to claim that this med is causing the wellness but I hope it is; I see my pdoc on Mon.

When do you take it? If you take it in the evenings, how long does the sedation last?

[kennyc]

Originally Posted by cashart10

I have only been on this med for about 2 weeks. I've been on 100MG for about half of that as I was too sedated to function (and now that sedation has improved, I'm still on 100MG as I am waiting on the results of a blood test that labcorp lost). I've been stable for about week. i think it is too soon to claim that this med is causing the wellness but I hope it is; I see my pdoc on Mon.

Excellent! Good to hear!

[kennyc]

Originally Posted by Breadfish

I was pointed here by someone else, who told me that there were a few people with Clozapine experience on this forum.

Barring something unusual, I'll be starting on Clozapine within a couple of months. I was wondering if anyone had any experience with this med? What side effects did you experience? Pdoc has told me a little (he'll be telling me more when I actually start taking it ) but I'm wondering about people's actual experiences.

Good Luck! It has helped in our case significantly. Hope it works for you!

[BeyondtheRainbow]

I know it is taken AM and PM. I don't know about how long the sedation lasts.

[kennyc]

Originally Posted by BeyondtheRainbow

I know it is taken AM and PM. I don't know about how long the sedation lasts.

Depends. Daughter was initially taking it mostly (bigger dose) at night, smaller in morning but is now taking it equally 3x a day. As far as tiredness I would guess it is going vary with each patient according to reports but was stronger each time the dosage was increased for several days and gradually got better (more alert) now it seems to be ever-present at lower levels but still making her always tired.

Oh, that's a bit of a disappointment. I'm already tired and lethargic all the time and I'd rather that's not increased.

[kennyc]

May be different with you! Depends on dosage as well I would think....

[BeyondtheRainbow]

I think it has a lot to do with dosage and also just how you process meds. My pdoc is hoping that 200 mgs will do it for me, keeping my additional meds as is (not sure about lithium) to help do what they do. She doesn't expect a lot of sedation. My AD is very stimulating so that will affect how sedated I am probably though. She told me has someone else on 800 mg who isn't sedated during the day by it although that person also takes another med that can be activating.

It sounds like if you have someone willing to work with you on avoiding side effects they sometimes can be reduced.

I'm not doing well and I'm starting the clozapine asap - meaning my mum is on her way to the pharmacy right now. Hoping it'll help..

[kennyc]

Originally Posted by Breadfish

I'm not doing well and I'm starting the clozapine asap - meaning my mum is on her way to the pharmacy right now. Hoping it'll help..

Excellent! I'm sending good vibes. Hopefully it will help in short order! Good Luck! Please take care and let us know how you are doing!

The tapering off of the other med and changing can be quite tough. Hang in there!

Best Wishes!

Thanks. I'll keep you posted.

[BeyondtheRainbow]

Good luck!

Thank you!

[cashart10]

Good luck!

I've been on it for a while and I've still been very paranoid but my t says it's because we stopped haldol and cut my abilify in half at the same time. Human Guinea Pig!

Please let us know how it works for you!

[BeyondtheRainbow]

Cash, your pdoc really needs to learn that one thing at a time rule! How on earth he ever knows what is going on is beyond me. Psychiatry is so much educated guessing anyway; it's like he LOVES to guess so he gave up educated a while back and just does whatever might cause chaos.

I'm sorry for that.

Originally Posted by cashart10

Good luck!

I've been on it for a while and I've still been very paranoid but my t says it's because we stopped haldol and cut my abilify in half at the same time. Human Guinea Pig!

Please let us know how it works for you!

[kennyc]

Originally Posted by BeyondtheRainbow

Cash, your pdoc really needs to learn that one thing at a time rule! How on earth he ever knows what is going on is beyond me. Psychiatry is so much educated guessing anyway; it's like he LOVES to guess so he gave up educated a while back and just does whatever might cause chaos.

I'm sorry for that.

True. I've had to fight that with our pdocs as well for years now....not only that I to keep yelling, 'consistency of care' they never check or discuss history with previous docs. I swear the primary reason for our crisis last year was due to doctors just switching meds because they knew better than the previous docs. They jerked the rug out from under us.....I swore then I'd never let that happen again and I've been involved as closely as possible and making sure that things/changes happen for a reason and there is always a backout/backup plan or it's going to be me jerking the rug out from under someone else next time.

[BeyondtheRainbow]

Gotta say, I'm really jealous. I so wish I could just start this stuff. I don't care how but it would be nice to not be on the med that you can't mix with it and being held up for weeks and weeks. My pdoc has yet to get back to me. I was sure she would today since I haven't heard from her since Sunday. She was supposed to email the hospital dr about admitting me then. I somehow don't think that takes a whole week; I think she forgot me. Again. I love my pdoc but I'm getting really frustrated with her. I'm going to wind up having my therapist call and tell her that I am coming apart at the seams to get this kick-started and I hate doing that.

I also hate being mad at someone who has repeatedly gone way above and beyond but who is failing me in a bad way right now. She didn't even get back to me to approve valium for sleep so I'll go on not sleeping until 4-5 AM.

I am out of patience and I so wish I could just start it and move on.

I hope tonight goes well for you.

I'm sorry it's all taking so long, BtR.

Well, sleeping was a bit of a disappointment. Not that I slept terribly- it's just that, based on what I'd been told and thus what I expected, clozapine would make me so drowsy I'd only have to worry about getting out of bed on time. Instead, yesterday evening it took a couple of hours to fall asleep and I woke 3 times this night.

I'm not complaining or anything - it isn't complainworthy, it's not that bad - just a little disappointed.
But who knows, maybe tonight - when I take a higher dose - it will.

Well, so far: I fall asleep at a decent hour, but wake on average 3 times a night. (Luckily, I fall asleep again soon) I have a lot of saliva and drool a bit at night, so there's a towel covering my pillow.

I also arranged with school I can go to the hospital for the blood works every Friday when I have two consecutive free periods (and a break before as well as after the free periods). That's good - a cab drives me to school (as I can't take public transportation, the county provides 9-person cabs that pick up Special Education kids at home and drive them to school. Means a long commute, but it works) so I can't do the blood drawing in the morning in my home village, because then I'll miss the cab. If I were to go to the hospital after school for the blood drawing, I'd miss the cab home. And there is no blood drawing done in my village in the afternoons, only in the mornings. So this is the best option, and luckily, school agreed.

I see my pdoc tomorrow.

[raspberrytorte]

breadfish - I'm happy things are going okay so far. I hope it continues!