• Share. Be Supported. Recover.

    We are a friendly, safe community supporting each other's mental health. We are open 24 hours a day, 365 days a year.

Has anyone else continuously refused Clozapine?

FadeToBlack

FadeToBlack

Well-known member
Joined
Nov 26, 2018
Messages
135
Location
UK
My current pdoc tried to get me to take Clozapine, but I refused. He also wanted me to have a first generation AP via depot which I also said no too.

In the past I have been on roughly 7 AP's, and now he decides that I am suffering from Psychosis and not anxiety on top of psychosis - which they all thought was under control

This was my first 1 2 1 appointment f2f for over a year....

Now I need my heart tested, as I will be on 3 AP's from the end of next week should the heart testing go ok

Not sure what to think about all of this?

My current meds are

1200mg Amisulpride
5mg Aripiprazole
20mg Diazepam
375mg Pregabalin
50mg Promethazine

Now he wants to try Queitiapine in addition to all of the above, and I am not sure how I feel about it to be honest

It has to be better than Clozapine right? I told him we're many steps away from that scenario
 
S

singsongfun

Well-known member
Joined
Jun 28, 2021
Messages
651
Location
London
Why don't you want Clozapine?
Also 5mg is a very low dosage of Aripiprazole, so I don't know why they don't increase that instead of starting you on a third antipsychotic, Quetiapine.
 
FadeToBlack

FadeToBlack

Well-known member
Joined
Nov 26, 2018
Messages
135
Location
UK
Why don't you want Clozapine?
Also 5mg is a very low dosage of Aripiprazole, so I don't know why they don't increase that instead of starting you on a third antipsychotic, Quetiapine.
Because of the weight gain, tiredness and blood tests. I was on Olanzapine for a couple of years, and Clozapine seems to be a very similar side effect profile. I put on 35 kg's on Olanzapine, and was a zombie for two years....

The 5mg Aripiprazole is to control prolactin, but he said nonetheless I am and will be above the recommended thresholds of AP regime he said

It might not be Quetiapine as the pharmacist is going to look at my med history and see what they recommend before we start a new treatment, so this might all change anyways

At the moment, they have no grounds to force medication on me or treatment, and I am going to keep it that way as best as I can
 
D

danmarkok89

Well-known member
Joined
Mar 14, 2021
Messages
409
Location
Norwich
Why don't you want Clozapine?
Also 5mg is a very low dosage of Aripiprazole, so I don't know why they don't increase that instead of starting you on a third antipsychotic, Quetiapine.
I was just about to mention sometimes aripiprazole can be prescribed alongside high prolactin inducing AP's like sulpride and risperidone and some FGA's to reduce prolactin

Because of the weight gain, tiredness and blood tests. I was on Olanzapine for a couple of years, and Clozapine seems to be a very similar side effect profile. I put on 35 kg's on Olanzapine, and was a zombie for two years....

The 5mg Aripiprazole is to control prolactin, but he said nonetheless I am and will be above the recommended thresholds of AP regime he said

It might not be Quetiapine as the pharmacist is going to look at my med history and see what they recommend before we start a new treatment, so this might all change anyways

At the moment, they have no grounds to force medication on me or treatment, and I am going to keep it that way as best as I can
You raise excellent points, and whilst I might add that some get lucky with some meds, for others it can have life altering consequences that I think everyone should be more sensitive to, especially mental health professionals as we're the ones who have to live with it after all...

What's your thinking and behaviour like? how bad are your symptoms? you sound like you're still kind of with it by the sounds of things and I think psychosis / positive symptoms of schizophrenia in and of itself is a poor indicator of how someone is doing and is at times a poor metric to assess everyone by...

Part of the problem is each and every psychiatrist has their own standard for clinical practise that they hold everyone to and I think that is a massive issue in the NHS and psychiatry in general. I've had psychiatrists who said that I need to be on meds for life and if I smoke weed then I'll end up back in secure services, probably after injuring someone or something silly like that and I've had other psychiatrists say that I can come off my meds if I want and weed aint that big of a deal, it's so hit and miss with it all and it's always a worry what kind of a psychiatrist we get lumbered with

I've also had repeated encounters with other mental health professionals who said that med's aren't always right for everyone and that a lot of people with schizophrenia just learn to cope better with the symptoms after a while, even without meds which is food for thought although I'll no doubt get a warning or a strike from the admins for saying it but I'm only relaying what qualified mental health professionals have said to me over the years so sorry if nobody wants to hear it but I'm just being honest.

Honestly though, be careful because if you refuse meds then they can force you back to hospital and then you're more likely to get stuck on a CTO or something, it's all so backward at times and it's weird because what might for some won't work or might cause absolute misery for others. I know a guy who was slim going into hospital and put on 50+kg from depakote (AKA depabloat) and quetiapine although they eventually switched the quetiapine for olanzapine and he was not in a good way and relatively reasonable doctors just made him stay on them and then they put him on a CTO saying he had to take his meds. It was really cruel as well because even the staff at the hospital used to take the piss out of him and he had to find clothes to wear and all he could find was this giant 't-shirt' which was basically a dress and it just didn't look right on him, it was so sad and he still wasn't well after all that and that was one of the things that made me think critically of psychiatry in a serious way. Again, what works for some doesn't work for others but the NHS will die trying to force you to do as they want even if you end up totally messed up from it all and the meds don't work, especially if you're an inpatient as you've got bugger all say against it all, it makes me really sad...
 
Last edited by a moderator:
D

danmarkok89

Well-known member
Joined
Mar 14, 2021
Messages
409
Location
Norwich
I was just about to mention sometimes aripiprazole can be prescribed alongside high prolactin inducing AP's like sulpride and risperidone and some FGA's to reduce prolactin


You raise excellent points, and whilst I might add that some get lucky with some meds, for others it can have life altering consequences that I think everyone should be more sensitive to, especially mental health professionals as we're the ones who have to live with it after all...

What's your thinking and behaviour like? how bad are your symptoms? you sound like you're still kind of with it by the sounds of things and I think psychosis / positive symptoms of schizophrenia in and of itself is a poor indicator of how someone is doing and is at times a poor metric to assess everyone by...

Part of the problem is each and every psychiatrist has their own standard for clinical practise that they hold everyone to and I think that is a massive issue in the NHS and psychiatry in general. I've had psychiatrists who said that I need to be on meds for life and if I smoke weed then I'll end up back in secure services, probably after injuring someone or something silly like that and I've had other psychiatrists say that I can come off my meds if I want and weed aint that big of a deal, it's so hit and miss with it all and it's always a worry what kind of a psychiatrist we get lumbered with

I've also had repeated encounters with other mental health professionals who said that med's aren't always right for everyone and that a lot of people with schizophrenia just learn to cope better with the symptoms after a while, even without meds which is food for thought although I'll no doubt get a warning or a strike from the admins for saying it but I'm only relaying what qualified mental health professionals have said to me over the years so sorry if nobody wants to hear it but I'm just being honest.

Honestly though, be careful because if you refuse meds then they can force you back to hospital and then you're more likely to get stuck on a CTO or something, it's all so backward at times and it's weird because what might for some won't work or might cause absolute misery for others. I know a guy who was slim going into hospital and put on 50+kg from depakote (AKA depabloat) and quetiapine although they eventually switched the quetiapine for olanzapine and he was not in a good way and relatively reasonable doctors just made him stay on them and then they put him on a CTO saying he had to take his meds. It was really cruel as well because even the staff at the hospital used to take the piss out of him and he had to find clothes to wear and all he could find was this giant 't-shirt' which was basically a dress and it just didn't look right on him, it was so sad and he still wasn't well after all that and that was one of the things that made me think critically of psychiatry in a serious way. Again, what works for some doesn't work for others but the NHS will die trying to force you to do as they want even if you end up totally messed up from it all and the meds don't work, especially if you're an inpatient as you've got bugger all say against it all, it makes me really sad...
that guy I mentioned, he couldn't really walk anywhere, everyone used to joke he needed a plus sized mobility scooter just to go on leave...
 
D

danmarkok89

Well-known member
Joined
Mar 14, 2021
Messages
409
Location
Norwich
My current pdoc tried to get me to take Clozapine, but I refused. He also wanted me to have a first generation AP via depot which I also said no too.

In the past I have been on roughly 7 AP's, and now he decides that I am suffering from Psychosis and not anxiety on top of psychosis - which they all thought was under control

This was my first 1 2 1 appointment f2f for over a year....

Now I need my heart tested, as I will be on 3 AP's from the end of next week should the heart testing go ok

Not sure what to think about all of this?

My current meds are

1200mg Amisulpride
5mg Aripiprazole
20mg Diazepam
375mg Pregabalin
50mg Promethazine

Now he wants to try Queitiapine in addition to all of the above, and I am not sure how I feel about it to be honest

It has to be better than Clozapine right? I told him we're many steps away from that scenario
PS how do you even stay awake on the meds you're on? I'd be in a coma on all that!
 
FadeToBlack

FadeToBlack

Well-known member
Joined
Nov 26, 2018
Messages
135
Location
UK
Sorry @danmarkok89 I can't seem to quote your posts.

My thinking is pretty messed up and my behaviour can be challenging, but it's not consistent at all

I had the crisis team before Christmas, but they were useless so I got rid

The psychiatrist seemed to take a lot of notes, and he did offer up doing nothing as a suggestion as well, which confused me

The meds don't make me that tired. Only first thing in the morning it takes an hour to wake up, but I am up at 5am every day
 
D

danmarkok89

Well-known member
Joined
Mar 14, 2021
Messages
409
Location
Norwich
Sorry @danmarkok89 I can't seem to quote your posts.

My thinking is pretty messed up and my behaviour can be challenging, but it's not consistent at all

I had the crisis team before Christmas, but they were useless so I got rid

The psychiatrist seemed to take a lot of notes, and he did offer up doing nothing as a suggestion as well, which confused me

The meds don't make me that tired. Only first thing in the morning it takes an hour to wake up, but I am up at 5am every day
Hmmmm ok...

well I can sort of imagine why they might be worried, as mental health professionals often are, regardless of how warranted it might always be. Do you personally feel you can cope with it or do you feel at risk, either to yourself or others? might as well be honest about it, I won't think any less of you...

so many mental health teams are incompetent so I can imagine your frustration...

well it sounds like the offer to do nothing is there, if you feel like you can cope with it then go for it, at this rate it sounds like you got nothing to lose by trying, sometimes you just got to be brave and stand your ground...

wow ok, yes I suppose we can get used to anything after a while, although it does sound like you're on quite a few meds though. I only take 1 pill a day for my mental health, for now at least...
 
FadeToBlack

FadeToBlack

Well-known member
Joined
Nov 26, 2018
Messages
135
Location
UK
I am fine at the moment, but I do feel desperate as I am screwing up my job big time, as I was off sick for a month in December

Have just gone back but now I am going off again. So frustrating!
 
D

danmarkok89

Well-known member
Joined
Mar 14, 2021
Messages
409
Location
Norwich
I am fine at the moment, but I do feel desperate as I am screwing up my job big time, as I was off sick for a month in December

Have just gone back but now I am going off again. So frustrating!
I'm sure it would be ok if you had to go onto benefits, besides you won't have to go to the jobcentre so you won't have to put up with tory boy driving past with his megaphone blaring out "workshy, scroungers, lay abouts, vote conservative" :p

Maybe think more about being ok than having to work, if you think you'll be ok then you might just be ok, even if you have to work at it a bit, worst comes to worst then you'll only be forced to take the medication you were going to end up on had you just taken the meds. And not being funny or crude but whilst I totally respect you for working and think highly of it, it is an issue for so many people with schizophrenia that I'm surprised you managed it all to be honest, for so many it is totally unrealistic and sets so many of us up to fail as we just can't work, especially full time when we're seriously mentally unwell so I wouldn't feel guilty for thinking about not working now, even if you have been able to in the past...
 
Ocean Blue

Ocean Blue

Well-known member
Joined
Oct 23, 2018
Messages
111
Location
England
I refused clozapine several times when I was on a pyschiatric wards. The doctors repsonse was to move me to another hospital which I didin't want so I agreed to take clozapine. Luckily it repeatedly failed the blood test to see if my white cell count was high enough, it wasn't.
 
Passionflower

Passionflower

Well-known member
Joined
Jul 15, 2011
Messages
2,361
Location
UK
I have refused to take Clozapine many times and now they have given up asking me to go on it thank goodness.
 
M

Misssad1111

Well-known member
Joined
Oct 14, 2021
Messages
1,138
Location
Miserable
Why don't you guys try it? if it can get your mind back, it might be worth the side effects
 
Cabra

Cabra

Well-known member
Joined
Apr 18, 2020
Messages
73
Location
UK
Honestly though, be careful because if you refuse meds then they can force you back to hospital and then you're more likely to get stuck on a CTO or something, it's all so backward at times and it's weird because what might for some won't work or might cause absolute misery for others. I know a guy who was slim going into hospital and put on 50+kg from depakote (AKA depabloat) and quetiapine although they eventually switched the quetiapine for olanzapine and he was not in a good way and relatively reasonable doctors just made him stay on them and then they put him on a CTO saying he had to take his meds. It was really cruel as well because even the staff at the hospital used to take the piss out of him and he had to find clothes to wear and all he could find was this giant 't-shirt' which was basically a dress and it just didn't look right on him, it was so sad and he still wasn't well after all that and that was one of the things that made me think critically of psychiatry in a serious way. Again, what works for some doesn't work for others but the NHS will die trying to force you to do as they want even if you end up totally messed up from it all and the meds don't work, especially if you're an inpatient as you've got bugger all say against it all, it makes me really sad...

That's a good point. There is no such thing as a fair trial at a mental health tribunal, such is the power imbalance between patient and psychiatrist, which means someone can be unlawfully forced high doses of antipsychotics on a whim. I have experienced tribunals in the past and it's quite literally a witch trial, human rights are not upheld. Being put on a huge dose for not wanting to take drugs I never needed was punishment and torture, not "treatment." I read studies that show no decreased hospitalisations with CTO'S and no evidence of efficiency, only negative effects on patients. Which means they are only used as a form of social control and punishment. That's so sad about that guy you knew. It's horrible how staff can have a complete indifference to the suffering and destruction they induce and even enjoy it, how do they sleep.
 
Top