Family and Caregiver Schizophrenia Discussion Forum

No Good Reason Not To Try Clozapine When All Else Fails

I found this article, and I thought I’d post it. Most everyone here knows I am a big advocate of clozapine because of the positive influence it had on my son’s sz when his prognosis was deemed untreatable.

The thing I was not fully aware of is the biggest reason that clozapine is not prescribed as one of the first drugs in a hard to treat case is because studies show that a mere 8 out of 1000 patients “may” develop a reduction in white blood cells (neutropenia) …and while that is a very serious condition, 8 patients out of 1000 is not an enormous negative outcome from any study. Although it can be serious for those 8 patients that is still 992 patients that see good results. I think those odds seem to favor the majority of patients,

My son has been on it for 10 years without any major issues or any bad lab results, even the significant initial weight gain and sleepiness subsided and improved in the first 2 years. Clozapine was my son’s 8th prescription and it took him almost 4 years and 3 doctors and 2 suicide attempts and 4 hospitalizations from his day of diagnosis to get to it. Looking back that was just too long. I believe his last doctor was aggressive in trying to treat my son, some of the final delay was the last couple months before he prescribed the clozapine I drug my heels in saying yes to it just because I knew nothing of the drug at that time and all of the drugs and their side effects scared me anyway and I had to read and ask questions until I felt satisfied with the information. It was my sons’s doctor saying to me finally, “if your boy was my son I would have him on this drug right now”. Then I said okay.

Within 6 months of my son being on the drug and with the amazing improvements I was seeing I was immediately sorry I had taken so long to think it over. I would recommend caretakers to strongly advocate for a doctor using this medication as soon as they can when it is deemed that the patient is very difficult to treat and is not responding well to other drugs.

If a drug is prescribed (any drug) and it doesn’t noticeably reduce the voices or the delusions in a reasonable amount of time then it is NOT WORKING. In addition. if the patient is seeing his doctor alone, he may not be able to accurately express to the doctor (because of his ongoing condition) that the medicine is not working, he or she may say when asked “how the medicine is working?” They may just find it easier to say “it’s fine” and this the doctor makes no changes unless the doctor hears everything that’s actually going on from a reliable source (the caregiver) ~~Just my two cents. https://www.treatmentadvocacycenter.org/clozapine-for-schizophrenia

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Unfortunately, Clozapine did not work for my son and while he was on it, he began the never-ending laughter for which there is no “cure” - for hours on end. My son is 39 and he became more and more a recluse on Clozapine, to the point that he rarely carries on a conversation, much less sees anyone during the course of his day. He has been on numerous medications for the past 25+ years. Clozapine is supposed to be the “last ditch effort” drug but as his doctor says, it just doesn’t always work for everyone. While his violence has subsided, there are still glimpses of it here and there. It’s good to hear that your son responded well to Clozapine but I’ve not given up yet - am still searching.

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PS - He lives with me, because there are truly no places where he could be safely placed here in Florida.

I understand that not everyone can benefit from it. I am sorry about that though, at least you tried. I hope something better becomes available in the near future to benefit those that clozapine could not help. Take care.

I too believe in Clozapine. It gave my grandson his life back. He now works fulltime and has friends. Its has been a miracle med for him. I begged the doctors for 2 years to give it to him.

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