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Does anyone have any first hand experience of clozapine?

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Schizophrenic Dave

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Feb 14, 2021
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Does anyone have any first hand experience of clozapine? Due to start on this medication in the next month or so but i'm worried about the common side effects including weight gain, sedation and drooling. I'm currently taking aripiprazole and suffer no side effects whatsoever but i still experience some positive symptoms including delusional thoughts, i always maintain insight into these, and hearing voices which i try to ignore and carry on as though they don't exist. My biggest issue is the negative symptoms i suffer with, they completely destroy my quality of life and i'm hoping clozapine will help with these but i'm struggling to find any decent literature on clozapine and the effect on the negative symptoms of psychosis, any help or advice would be greatly appreciated.
 
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lilly01

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Feb 6, 2021
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from what i heard, there's weight gain, in the past my psychiatrist told me there's lots of weight gain and then after I asked her again how much and she said 50 lbs and that she has seen people blow up but I'm not sure if it's because they weren't on a good enough diet. i know a man who's on Clozapine and he's not fat and I told him that and he said he used to be skinnier. My psychiatrist told me she knows someone who didn't gain weight and goes swimming (exercise) the psychiatrist also said that you get more motivation on this drug but you have to do check-ups on your blood test like every three months to check white blood cells and it's usually fine but if it's not then they'll give you a dose to up your white blood cells again and it's not permanent and you can become diabetic. I hope you have a good, caring psychiatrist (hug)
 
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Schizophrenic Dave

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Feb 14, 2021
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UK
Thanks for your reply, i've read about the diabetes and weight gain quite a bit, those side effects do worry me a lot if i'm honest but what price do you put on your sanity and gaining your life back? I'm really hoping the clozapine will help with my motivation as the lack of it is the worst symptom i have, if i gain my motivation back there will be no stopping me, i'll be able to function like a normal human being again and maybe be able to re-join society as a working member of it. If i do gain a lot of weight whilst on it then my self-esteem is gonna go through the floor, it's low enough as it is due to a bit of weight gain from risperidone, so even if my motivation increases i could still want to isolate myself due to how i'll look but there's also the chance that my motivation levels will be back at their previous levels before becoming unwell where i was working out every day multiple times a day so then the weight gain wouldn't be a problem. The blood tests don't bother me, not really worried about the serious side effects as they're quite rare, just really hoping it's the miracle drug i've been led to believe it is. My psychiatrist is amazing, she's helped me massively in the time i've been seeing her. I was quite surprised that she suggested clozapine though considering my level of insight but i think she's not just trying to get me better but completely symptom free which would be life changing for me. She told me that other antipsychotics only have a 60% chance of working whereas clozapine has an 80% chance, that's a big jump in numbers so it has to be worth a try, i'm not losing anything even if it doesn't work as she has said if it doesn't work for me or if i'm not tolerating side effects then she'll change me back onto aripiprazole
 
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lilly01

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if I'm honest, weight gain does bother me too but right now I'm focused on getting better and relying on God and hopefully I won't gain that much weight like we're both thinking like :low:
 
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Lab rat

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I have no personal experience of clozapine, I’ve been refusing it for years, I would rather the illness. I’m currently on olanzapine and aripriprazole, polypharmacy works 99% of the time with me. For me, it’s the blood tests! I told them that I would take the meds but they won’t get blood without fighting every time
 
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Nate

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Oct 20, 2019
Messages
183
Location
Augusta, Maine
Does anyone have any first hand experience of clozapine? Due to start on this medication in the next month or so but i'm worried about the common side effects including weight gain, sedation and drooling. I'm currently taking aripiprazole and suffer no side effects whatsoever but i still experience some positive symptoms including delusional thoughts, i always maintain insight into these, and hearing voices which i try to ignore and carry on as though they don't exist. My biggest issue is the negative symptoms i suffer with, they completely destroy my quality of life and i'm hoping clozapine will help with these but i'm struggling to find any decent literature on clozapine and the effect on the negative symptoms of psychosis, any help or advice would be greatly appreciated.
I have been on clozapine and it made me fat! I also lost alot of desire to read, pray or do anything, I don't recommend this drug.
 
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lilly01

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Messages
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Location
CA
I have been on clozapine and it made me fat! I also lost alot of desire to read, pray or do anything, I don't recommend this drug.
thanks for telling the truth. My psychiatrist told me differently but i guess she really did see that in at least 1 patient. i feel drugs like these can cause a lot of weight gain to the point you lose your self-esteem, you can or might get better but you will feel ugly, unfit, and your health is at stake: diabetes so you need diabetes medication, cholesterol so you need cholesterol medication, death from too much weight, that is harsh, i am a christian but i do not feel god with me right now, when i do i will say so for sure on here. i feel i am mostly good, i hardly have any sins and i don't think god should expect so much from me since i recall medication causing me to lose motivation so i don't have the motivation for things. I'm sorry that happened to you too Nate, i'm feeling discouraged and waiting on god to help me
 
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itsmeagain

Well-known member
Joined
Dec 25, 2010
Messages
803
Location
england
Does anyone have any first hand experience of clozapine? Due to start on this medication in the next month or so but i'm worried about the common side effects including weight gain, sedation and drooling. I'm currently taking aripiprazole and suffer no side effects whatsoever but i still experience some positive symptoms including delusional thoughts, i always maintain insight into these, and hearing voices which i try to ignore and carry on as though they don't exist. My biggest issue is the negative symptoms i suffer with, they completely destroy my quality of life and i'm hoping clozapine will help with these but i'm struggling to find any decent literature on clozapine and the effect on the negative symptoms of psychosis, any help or advice would be greatly appreciated.
Clozapine is way better at deleting positive symptoms.
Terrible with negative symptoms mostly.
You will be having bloods taken a lot for a year or so, and once a month permanently in order to monitor the white blood cell depletion it may cause.
 
boudreauj4

boudreauj4

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Jan 6, 2017
Messages
866
I was on risperidone and got very fat and my prediabetes was getting worse. I also had terrible negative symptoms but the risperidone worked pretty well for me on the positive symptoms. My psychiatrist suggested I take Clozapine but I refused because I don't have good veins for drawing blood and it is very painful for them to hunt around for a vein with the needle. Instead we tried Geodon because it is supposedly weight neutral and she said it also tends to give you more energy. I tried it and it has worked well for me for the last 5 years. It gave me more energy. I started getting things done that I had put off for years. It has not helped with any of the other negative symptoms I have though, and also some of my positive symptoms have come back. But I can live with that. I am much happier now. I also lost weight and my A1Cdiabetes tests are better than when on risperidone. The main bad thing about taking Geodon for me is I sometimes start to get unpleasant withdrawal symptoms, like as if my medication is wearing off, when it is getting close to the time to take my next dose. These withdrawal symptoms are chills, anxiety, and an overall sick feeling. I was on 60mg twice a day, so we tried me taking 40mg three times a day instead and most of these withdrawal symptoms went away. I know this is not a post about clozapine, but it is an example of my somewhat successful alternative to clozapine.
 
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Schizophrenic Dave

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Joined
Feb 14, 2021
Messages
5
Location
UK
Thanks for the replies, I'm still going to go ahead with the clozapine as some of the professionals I have spoken to are claiming that it can work well on negative symptoms and in some cases it can change peoples lives dramatically. The positive symptoms I suffer with are manageable to an extent, it's the negative ones that completely destroy my quality of life. I was originally asking to be started on lurasidone to see if I benefitted from that but my psychiatrist recommended clozapine instead for reasons unknown to me, should probably have asked really, it does seem a bit extreme considering my level of insight but I trust her as she genuinely seems to care about her patients and there has been plenty of other professionals from different teams I have spoken to that say nothing but good things about her so my trust seems well placed. After speaking to one of the nurses from the EIT I'm currently under the care of she's arranged for a support worker to start coming out to see me to take me shopping and to help with healthy eating in order to lose some weight and to mitigate the possible weight gain from the clozapine when I start it in the next couple of weeks, hopefully everything goes to plan and I can get back down to a healthy weight and maintain it throughout my life on clozapine, my self-esteem is low enough as it is, if I gained more weight I'd never leave the house. I'm taking a risk in trying clozapine but I'm at the point where I'm sick of my life the way it is and no matter how hard I try I can't motivate myself to any extent to do anything beyond sit around and watch TV or play video games all day so I need something that could potentially help motivate me and clozapine could be the answer, I refuse to live the rest of my life the way I am doing so I need to try clozapine even if there's only a small chance it could work well on those negative symptoms, if it doesn't go to plan then I'll either ask to be changed back onto aripiprazole or ask to be changed onto lurasidone as was originally planned.
 
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