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Old 17-08-2021, 11:30 PM   #1
HildaOgden
 
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Clozapine

Just wondering about people's experiences with Clozapine.
My psych says that's the next step for me if things don't improve as I've been on a number of different anti psychotics

I'm resistant to going on Clozapine because of the side effects and having to have regular blood tests

But then may be it's worth it if it makes all the **** go away

I know different people have different side effects am just interested to hear people's experiences
thanks

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Old 18-08-2021, 01:57 AM   #2
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I cannot speak from personal experience of taking it. But if you’d like to know more about how it would be initiated and how it’s managed, feel free to PM me.

Regarding its efficacy- it often has amazing results for people who have not been helped by other antipsychotics. I think it’s also worth noting that people do not suggest clozapine lightly because professionals are aware of the ball ache of regular bloods etc and potential side effects. The most common ones being sedation and weight gain. Both CAN be managed with the right support, so they don’t have too much of a significant impact on your life. And they will try to keep you on the very lowest dose that makes things more bearable for you.

I’ve read your r&v for several years now and it’s clear this is really affecting your life. The anxiety around the Germans, the vortexes and the RVs never really seems to disappear and that must be exhausting for you.

I think it’s worth considering and I’m really glad you made this thread.





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Old 18-08-2021, 09:40 AM   #3
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Clozapine is the best med I've ever been on
I can't take it anymore because my body is stupid but I wish I could be on it again



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Old 18-08-2021, 10:42 AM   #4
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I was on clozapine. I’d suggest seriously researching the side effects and requesting close monitoring and support. My side effects were brushed aside until they got so unbearable I took myself off the medication (dangerous, do not recommend).

It did help with what it was supposed to help with very effectively but I just wasn’t offered any support to cope with side effects.



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Old 18-08-2021, 06:34 PM   #5
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I was put on clozapine as a last resort and honestly its the best thing that could have happened, it allowed me to engage in my recovery and subdued the intrusive thoughts and urges. yes it has toi be monitored and can have side effects but honesstly mental illness is worse than that




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Old 18-08-2021, 10:30 PM   #6
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thanks Pomegranate for your kind response. I'll PM you.

Quote:
Originally Posted by Pomegranate View Post
I cannot speak from personal experience of taking it. But if you’d like to know more about how it would be initiated and how it’s managed, feel free to PM me.

Regarding its efficacy- it often has amazing results for people who have not been helped by other antipsychotics. I think it’s also worth noting that people do not suggest clozapine lightly because professionals are aware of the ball ache of regular bloods etc and potential side effects. The most common ones being sedation and weight gain. Both CAN be managed with the right support, so they don’t have too much of a significant impact on your life. And they will try to keep you on the very lowest dose that makes things more bearable for you.

I’ve read your r&v for several years now and it’s clear this is really affecting your life. The anxiety around the Germans, the vortexes and the RVs never really seems to disappear and that must be exhausting for you.

I think it’s worth considering and I’m really glad you made this thread.

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Old 18-08-2021, 10:33 PM   #7
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Cacoethes; thanks for your reply, sorry you're unable to take it anymore
Elmer; thanks for your response and advice about getting support with side effects
Susu; I'm inclined to agree with you... surely Clozapine can't be worse than mental illness

Thank you for your replies

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Old 19-08-2021, 12:03 AM   #8
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Quote:
Originally Posted by Cacoethes View Post
Clozapine is the best med I've ever been on
I can't take it anymore because my body is stupid but I wish I could be on it again
Becky, wasn’t there also an element of you tending to stop it at random intervals etc? I know they tried you on it again this year and you got two red results, but prior to that and the random taking or not taking, it had been ok hadn’t it?





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Old 19-08-2021, 12:39 AM   #9
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Yes there was an element of that.
I deeply regret taking myself off it all those times!



I'm fine! Totally fine. I don't know why it's coming out all loud and squeaky, 'cause really, I'm fine!


Who else is fine?!?!?


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Old 19-08-2021, 01:18 AM   #10
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Sorry for asking Becky, it wasn’t a dig! I just wanted to clarify in case OP thought you’d has some awful reaction or something that meant you had to stop! X





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Old 19-08-2021, 08:47 AM   #11
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No worries!

I didn't have an awful reaction. Just to clarify!
My white blood cells were low but they picked it up immediately and I didn't even feel unwell with it.



I'm fine! Totally fine. I don't know why it's coming out all loud and squeaky, 'cause really, I'm fine!


Who else is fine?!?!?


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Old 19-08-2021, 07:20 PM   #12
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thanks for clarifying Beckie!!

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Old 31-08-2021, 01:59 AM   #13
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I'm meeting my new CPN tomorrow and I'm nervous as hell about it
I spoke to her briefly on Thursday last week on the phone
She asked what helps when things are tough
I said usually staying with my Mum and having meds looked at
well, tbh, my old cpn was quite meds focused so she'd speak to my psych when I was struggling, hence my psych suggesting clozapine early March this year after an episode.

I don't know whether to mention clozapine to my new cpn
everything's a bit up in the air as I had to get my GP involved to get me a new cpn as my old when went on mat leave and left me without a named care coordinator.

I guess I'm just nervous
things still aren't that great
I'm taking my meds although I'm finding it increasingly hard to take them

sorry, I don't know what I want from this post
it's just late, I can't sleep and I've got this meeting tomorrow and I'm nervous about it

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Old 31-08-2021, 11:35 AM   #14
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Things aren't perfect on clozapine for me but preclozapine things were much worse.



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Old 31-08-2021, 10:28 PM   #15
HildaOgden
 
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met my new cpn and she seems nice
she spoke to my psych and he again said clozapine was the next step
i've done some research and discussed it with my Mum and I think I'm going to go for it
My cpn is phoning me on Friday and I can tell her then

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Old 16-09-2021, 07:34 PM   #16
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Hiya
Just wondering if you made a decision about clozapine and how you’re doing? xx




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Old 06-10-2021, 03:18 PM   #17
HildaOgden
 
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I’m on the 2nd week of clozapine titration.
It’s going slowly as I still have some of clopixol depot in my system.
So far it’s going ok thanks.

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Old 06-10-2021, 05:58 PM   #18
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Glad to hear it's going okay so far! I hope it works for you. :)



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