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I originally posted this in a thread in the AAP section but thought it might get more of a response if it was moved to the schizophrenia and psychosis section as this is where people who know about such matters hang out.

Its a long post:

Will doctors only give clozaril to long term chronically disabled schizophrenic patients where treatment of 2 atypical APs has failed? The reason I ask is because I am on 30mgs of Abilify for psychotic disorder NOS/ schizotypal disorder. My psychiatrist has told me I fit the diagnostic criteria for schizophrenia but he is reluctant to put it down on my medical records due to the stigma the disease carries. He thinks I have a lot of potential and this diagnosis would hinder rather than help me. He also likes to do things by the book and is a very conservative prescriber of meds. He asked me once if I would consider clozapine and I said yes. However when I asked him if he would put me on it after I had a second opinion from another pdoc, he said "no, you need a diagnosis of schizophrenia and you are far too functional to get that diagnosis"

I don't feel that abilify is doing all that it could be doing for me and I have not responded to Risperdal in the past (or Amisulpride and Seroquel because of intolerable side effects). The only APs left for me are olanzapine and clozapine. I would actually rather try clozapine before olanzapine because it seems to be less sedating and leaves its users less prone to weight gain (I am very sensitive to weight gain from AAPs). I also had a friend commit suicide while on olanzapine and I am very frightened of it. I have attached a lot more stigma to olanzapine than clozapine becuase so many desperately ill people I met in hospital were on olanzapine.

I have been doing everything positive in my life - stopped drinking, stopped SI, stopped bulimia and after a brief blip I am fully med-compliant and resolved to stay that way. Abilify (to use the words of another CBer) stops me from "yelling at total strangers on the street to leave me alone" and makes the psychosis more bearable but does not stop it. I want my life back. I have been off work sick since September and I am desperate to go back. I want to go to the cinema and not think people in the back row are commentating on my thoughts. I want to stop thinking my thoughts are being transmitted over the television and radio. I just want it all to go away. Clozapine could be my best chance of this but I think my psychiatrist will that as I tolerate abilify very well (no side effects) and I am behaving myself (not cluttering up his precious psychiatric ward) that I should just learn to cope with the psychosis and go away. I on the other hand, have come to the realisation that to spend your life walking around in a state of psychosis and paranoia is not acceptable, no matter how well you can tolerate it. How can I explain this to him?

Sorry for the long post

Feedback would be much appreciated  ;)

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Sounds you have a truly wonderful doctor, Blackbird.  I am happy for you and admire him from a distance. He sounds like a careful diagnostician, up on the med literature and  (very important) aware of the broader picture which so many are NOT. In your case, I

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  • 1 month later...

I originally posted this in a thread in the AAP section but thought it might get more of a response if it was moved to the schizophrenia and psychosis section as this is where people who know about such matters hang out.

Its a long post:

Will doctors only give clozaril to long term chronically disabled schizophrenic patients where treatment of 2 atypical APs has failed? The reason I ask is because I am on 30mgs of Abilify for psychotic disorder NOS/ schizotypal disorder. My psychiatrist has told me I fit the diagnostic criteria for schizophrenia but he is reluctant to put it down on my medical records due to the stigma the disease carries. He thinks I have a lot of potential and this diagnosis would hinder rather than help me. He also likes to do things by the book and is a very conservative prescriber of meds. He asked me once if I would consider clozapine and I said yes. However when I asked him if he would put me on it after I had a second opinion from another pdoc, he said "no, you need a diagnosis of schizophrenia and you are far too functional to get that diagnosis"

I don't feel that abilify is doing all that it could be doing for me and I have not responded to Risperdal in the past (or Amisulpride and Seroquel because of intolerable side effects). The only APs left for me are olanzapine and clozapine. I would actually rather try clozapine before olanzapine because it seems to be less sedating and leaves its users less prone to weight gain (I am very sensitive to weight gain from AAPs). I also had a friend commit suicide while on olanzapine and I am very frightened of it. I have attached a lot more stigma to olanzapine than clozapine becuase so many desperately ill people I met in hospital were on olanzapine.

I have been doing everything positive in my life - stopped drinking, stopped SI, stopped bulimia and after a brief blip I am fully med-compliant and resolved to stay that way. Abilify (to use the words of another CBer) stops me from "yelling at total strangers on the street to leave me alone" and makes the psychosis more bearable but does not stop it. I want my life back. I have been off work sick since September and I am desperate to go back. I want to go to the cinema and not think people in the back row are commentating on my thoughts. I want to stop thinking my thoughts are being transmitted over the television and radio. I just want it all to go away. Clozapine could be my best chance of this but I think my psychiatrist will that as I tolerate abilify very well (no side effects) and I am behaving myself (not cluttering up his precious psychiatric ward) that I should just learn to cope with the psychosis and go away. I on the other hand, have come to the realisation that to spend your life walking around in a state of psychosis and paranoia is not acceptable, no matter how well you can tolerate it. How can I explain this to him?

Sorry for the long post

Feedback would be much appreciated ;)

I was on clozaril for over 10 yrs, would have put on approx 12-15 kgs, but think that was due more to cfs and resultant inactivity than cloz. Found it very sedating, had to take it at night, would sleep for 11-13 hrs and take a long time to get moving. Had to change to solian because of diabetes as a side-effect, but then perhaps diabetes is a side-effect of weight gain rather than the clozaril. I was fully compliant on clozaril, only needed a very minimal dose - gradually dropped down to 50mg. Found coming off clozaril very difficult, also if I missed a dose I couldn't sleep and became very unstable. Relapsed when finally coming off it, but am ok now the solian has kicked in. Also relapsed while reducing the dose, but other acute stress factors were involved as well. Blood tests go to 4-weekly after a couple of months here in Oz - not sure if it would be the same for you, also cost is not so much an issue due to PBS - clinic paid the balance. With admissions, I've managed to be discharged after 4-6 wks maximum, when I'm psychotic I can't even use my mobile and I use piano playing and Qi Gong to get my brain and body functioning again. The rest of the ongoing symptoms, voices etc I manage and come to terms with through belief systems (new age - shamanic etc), I believe the voices come from astral and lower nuisance entities, and can use various strategies to get rid of them and/or connect with higher beings if I need to.

Lots of best wishes :)

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  • 4 years later...
Guest scheherezade

I originally posted this in a thread in the AAP section but thought it might get more of a response if it was moved to the schizophrenia and psychosis section as this is where people who know about such matters hang out.

Its a long post:

Will doctors only give clozaril to long term chronically disabled schizophrenic patients where treatment of 2 atypical APs has failed? The reason I ask is because I am on 30mgs of Abilify for psychotic disorder NOS/ schizotypal disorder. My psychiatrist has told me I fit the diagnostic criteria for schizophrenia but he is reluctant to put it down on my medical records due to the stigma the disease carries. He thinks I have a lot of potential and this diagnosis would hinder rather than help me. He also likes to do things by the book and is a very conservative prescriber of meds. He asked me once if I would consider clozapine and I said yes. However when I asked him if he would put me on it after I had a second opinion from another pdoc, he said "no, you need a diagnosis of schizophrenia and you are far too functional to get that diagnosis"

I don't feel that abilify is doing all that it could be doing for me and I have not responded to Risperdal in the past (or Amisulpride and Seroquel because of intolerable side effects). The only APs left for me are olanzapine and clozapine. I would actually rather try clozapine before olanzapine because it seems to be less sedating and leaves its users less prone to weight gain (I am very sensitive to weight gain from AAPs). I also had a friend commit suicide while on olanzapine and I am very frightened of it. I have attached a lot more stigma to olanzapine than clozapine becuase so many desperately ill people I met in hospital were on olanzapine.

I have been doing everything positive in my life - stopped drinking, stopped SI, stopped bulimia and after a brief blip I am fully med-compliant and resolved to stay that way. Abilify (to use the words of another CBer) stops me from "yelling at total strangers on the street to leave me alone" and makes the psychosis more bearable but does not stop it. I want my life back. I have been off work sick since September and I am desperate to go back. I want to go to the cinema and not think people in the back row are commentating on my thoughts. I want to stop thinking my thoughts are being transmitted over the television and radio. I just want it all to go away. Clozapine could be my best chance of this but I think my psychiatrist will that as I tolerate abilify very well (no side effects) and I am behaving myself (not cluttering up his precious psychiatric ward) that I should just learn to cope with the psychosis and go away. I on the other hand, have come to the realisation that to spend your life walking around in a state of psychosis and paranoia is not acceptable, no matter how well you can tolerate it. How can I explain this to him?

Sorry for the long post

Feedback would be much appreciated  ;)

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