Anyone on (or has been on) clozapine?

My pdoc is going to switch me to clozapine from saphris, and I’m not sure what to expect. The internet provides information about what it treats and possible side effects, but I’d like to hear from people who are or have been on it.

Did it work well for you? Did it do anything for your paranoia? What other symptoms did it help for you? How does getting the blood draws and subsequent meds work? Do you really have to get a refill every single week for the first 6 months? Any insight would be appreciated.

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Here’s a post from last month. It’s pretty long. Give you some more questions to ask maybe.

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A few of my friends take it

I am happy you have friends

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Took me a while, I never use to be able to go out much I was over medicated and had social problems

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I’m on it, 100mg a day, for about 1 year now, been on it for other periods of time before too,
Nortryptyline reduces side effects like drooling or always being hungry, ( its a discovery by myself, thank God)
Best ap I’ve ever known for sure,

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I can’t take Nortryptyline because it will aggravate the TD.

Just have it in mind,
If you can tolerate side effects then there’s no need to it,
I didn’t see TD in side effects of nortriptyline in drugs.com and TD is not sth so dangerous, in my opinion it releases and decreases anxiety, I have it sometimes and its not uncontrollabe, it gives me a sense of security and pleasure,
Not a problem for me,
Side effects like always being hungry and its result which is getting fat and also drooling at nights and dilated anus resulting to having dirty panties was more irritant than having a come and go TD,
Also you said you haven’t tried clozapine yet, and as you are aware combination of meds causes different results than using one med alone so if you were under pressure by side effects have this name in mind; “nortriptyline”

Its funny I went from Clozapine to Saphris back a while ago.’=

Edit: they are in the same class of drugs, so work similarly

I took it for many years. I gained a crapton of weight. When i took it at night I was overwhelmingly hungry and sleepy at the same time. I was always still in a state of sedation the following day. I think the strong sedation contributed to my lack of motivation and to my having at various times during that period either no or few friends.

It didn’t seem to help anything, but keep in mind, my schizoaffective is super medication resistant. Even the Rexulti that I’m on now doesn’t do too much for my hallucinations.

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Why are you changing from saphris?

Tardive dyskinesia

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Yeah Clozapine does help tardive dyskinesia. It’s not supposed to cause tardive dyskinesia, and at the same time it treats it.

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One of my biggest concerns is the regular blood tests. I’m not very reliable about getting out of the house, so I’m worried that I won’t get my blood checked like I’m supposed to and therefore will end up without a prescription.

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Yes you have to get regular blood tests. After being on it for a while the blood tests can become a bit less frequent. Clozapine can drop white blood cells which could be fatal if nothing was done about it. That’s the main problem with it unfortunately. There are other side effects certainly, but that is what the blood tests are for.

If someone has troublesome tardive dyskinesia, and I have seen you mention that, then taking clozapine would make sense.

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This thread has me scared to death to get on this medication. The Saphris leaves me groggy in the morning, enough so that I don’t feel safe driving. Clozapine sounds like it would be much worse. I want to live life again, and I can’t do that if I’m heavily sedated all the time. I used to take a med that made me so drowsy I would fall asleep in Sunday school- and snore! It was a very small class, so it was quite noticeable. I stopped going places because of things like that. I don’t want to live a life like that again, and I certainly don’t want to be stuck on disability forever because my meds prevent me from functioning. As it is, if I wanted to work, I think I’d have to skip my morning meds. And I certainly don’t want problems with bed wetting!

I feel like I’m backed into a corner. I can’t stay on the Saphris since it’s causing my TD, and other APs will likely agitate the condition as well. I don’t want to be the person I was before I took Saphris, and I’m tempted to see how I would do without an AP (under my pdoc’s supervision, of course). I can’t work if I’m psychotic, though, so I don’t know how well that would go over.

This just plain stinks.

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Sorry about that. Yes clozapine is a harsh antipsychotic. I guess some people kind of like it though. I wouldn’t want to take it. Only as a last resort. Seroquel which I take also has a reduced risk of tardive dyskinesia, 2nd probably only to clozapine. You don’t have to take clozapine if you don’t want to.

I don’t think everyone with tardive dyskinesia takes clozapine, certainly they do not. I’m not a doctor. There is a new medication approved for TD called Ingrezza (valbenazine). It is supposed to be available now I think.

Just try to keep your spirits up and I hope things get better for you.

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Since you respond well to Saphris (asena-pine) perhaps you would respond to other -pine class drugs like: Olanzapine, Quetiapine, Carbamazepine, Oxcarbazepine, Mirtazapine, Reserpine

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