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Q: Treatment Resistance Schizophrenia - Medications??
asked by: RBH on July 1st, 2006
New User
Hi - this is my first post and I would really like to hear other peoples experiences related to this topic and what medication eventually helped

my son - 19 years has an official diagnosis of schizo - affective disorder, however most of his dr's treat him more akin to schizophrenia without enough attention to the mood problem even after very lengthy consultations and documented evidence provided by his primary carers - us
his condition is complicated by epilepsy - absence seizures

he has spent nearly 2 of the last 3, 1/2 years in hospital, firstly in an adolescent ward and now an adult ward .
He got partially well about a year ago on zuclopenthixal & tegretol but huge dozes for over 6 months before it even began to show signs of working and then the side affects were just terrible and so he eventually became non compliant . He said his life was not worth living as the amount of medication required to control the psychosis was destroying any quality of life he could have
he has tried zyprexa 30mg (olanzapine) - no response, abilify - partial response and then mania at 30 mg which lead to a psychotic episode

he is currently on 8mg risperdone with a minor amount of 400 mg tergretol as a mood stabilizer but this, whilst it makes him sleep more does little for the positive symptoms of voices, thought disorder and agitation etc.

In the past 6 month they have found little to help him and I am beginning to think maybe they never will !

The next step is clozaril (clozapine) however he knows the side effects and is refusing to take it - his peer group in the rehab place unfortunately gave him a run down on the side effects and frightened the life out of him; also past experience has shown us that unless he has some say in the medication he will definitely become non compliant as his insight into his illness is severely limited and becoming less and less as time marches on.
He also has a minor heart problem and so this medication may accerbate this already existing problem and then there is that white blood cell problem which may occur with this medication!
It seems to me that every medication he has taken almost always gives him very bad side effects but does not work on the illness! So his dr's keep increasing the dose up to try and get a desired effect and all they suceed in doing is making him more unwell from the side effects and making him very very negative towards medication and eventually noncompliant

he is a very big lad 6ft 3' and solid & staff in both hospital and the psycho-social rehab place he has just returned to after another lengthy hospitalization period react very negatively to him when unwell and I feel are intimidated by his imposing size when he become verbally disorientated or frustrated when unwell

i am very concerned that various medications just dont have the desired effect on him and he is not showing any signs of becoming well again - not even close to partial wellness and I just dont get it how no medication will have an impact on the psychosis even in high doses but will still have the bad side effects

i hope someone out there can give me some hope because I am beginning to think that the way his life is in regard to the agony he goes through is making hanging on to life less of an option in his mind and whilst my head can see why he feels this way, my heart wants to help him and hold onto him with all my might!


Anyone who can give me any information or their experience with trs and also on clozapine or any other medication that worked I would be very eager to hear from you - thanks
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sandyallen
replied on July 1st, 2006
Extremely eHealthy
I am not a dr but I do have several medical situations and I feel that he needs a type of a dr that will listen to his needs, a more understanding dr, instead of one that will keep on changing his meds, odds are he may have this disease the rest of his life, just like myself and they must find something that will make him to live comfortable, this is not your fault and do not blame yourself for it! Side effects can be soo bad, it totally makes the medication itself bad, I do understand this.
I do wish you and your son the best as I do understand on what it is like trying to find the right medication as we are all different, what helps one may not help someone else. Please keep us posted on what you both find out.
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PageR760yo
replied on August 22nd, 2006
New User
Hey
Reading what you have wrote makes me wish I never have to change medicine again and stick with the one I have now.. All of my medicines never fix what I think is wrong with me but give me new things to think about.. New problems.. I think im just gunna have to tell the doctors im fine with the medicine I have and keep it at a low dose because im afraid I will be changed more than I already have been changed due to medicine.. Im gunna stick it out and just deal with myself cause thats my specialty. Nothing fixes my problems and I have tons of them. I took abilify and fealt brite as day but saw all my problems with people and speaking and blah just stuff , then I took genodome and it sucked alot. Then I took zyprexa and got more deep into my schizoness just like genodome.. Then I took risperdol and I feel normal at first but still had all the things medicine gave me.. But I fealt better with my normal thoughts between having bad ones.. Risperdol is for me and I take 4mg.'s hope I can help
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