How did it take to see dhe benefits?
Itâs been a year and I have to say it was gradual. Weâve seen no violence toward us or the walls in our house. He still has voices but can manage the better. He still puts out food and water for fairies. We go to the store together and I take him wherever I can. We started helping an elderly couple with a garden and the benefits have been most rewarding. Donât give up!
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It really did take a while to see improvement with my son. Gradually I realized he wasnât punching the wall, throwing things or breaking his computer equipment. Things can still be challenging but 18 months after his starting Clozapine, we can look back and see Ă real difference.
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Hey Momdad, donât feel alone. Clozapine didnât work for my son either but while he was taking it, he began laughing like a hyena and years later, it still hasnât stopped. He is highly resistant to medications and allergic to others. We believe that his SZ may have been triggered by a head injury when he was young but its progressively getting worse. Iâve also noticed that when he gets overheated, or his blood pressure goes up, that his hallucinations and/or delusions skyrocket.
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Hi all- this is a really interesting discussion- thanks for sharing your experiences.
Clozapine has been a God-send for my son. He had been on Zyprexa, Saphris, Seroquel, Lamotrigine and others before that. The zyprexa helped some, but my son hated it and it was only partially effective. Starting the clozapine was a big deal because the doc wanted to titrate the dose up very slowly. It took about 6 months before he got to a dose that was high enough (500 mg 
) but it has been about 2 years since then and he says that the voices are mostly silent. He is afraid to lower the dose because he doesnât want to go back to the torment that he was dealing with prior.
On the downside he sleeps at least 12 hours a day and has gained a lot of weight. His CBC show elevated WBC at times but this is the opposite of what is most feared about the drug and I have read that it is benign. I am also afraid that lowering the dose will also make it stop working. Any shift to the delicate brain can really throw off the hard-won equilibrium.
We really are flying blind with these drugs but I am so grateful for them just the same!
Zyprexa was useless for my son and Seroquel had him hallucinating giant spiders. He also slept 12+ hours while on Clozapine and had a huge weight gain. He smoked quite a bit and that can affect the appropriate dosage, especially when he is 6â8". TD then kicked in but I was fortunate in that he was in a mental hospital while they had to up the dosages. Only problem was that they discharged him before the level he needed was reached. He was OK with the monthly lab draws but there was little change other than the incessant laughter. Also, there are meds that they cannot take when head injuries are part of his record and I had to stop the doctors from prescribing one. Here is the link to the Clozapine REMS page with a phone number at the very bottom if anyone needs to report side affects. They were very nice each time I contacted them. Clozapine REMS
Improvement was gradual over many months and more. You have to titrate up very slowly and get off other AP meds very slowly. I am learning more and more how complicated the best administration of this drug is. I strongly encourage reading the book on Clozapine by Dr. Laitman and becoming a member of the private Facebook group Team Daniel and the Clozapine Community. Excellent resources I wish I had utilized sooner.
My son had been started on clozapine 4.5 yrs back. It took 2 yrs for the dr to titrate the dosage to 400mg/day. Then around the time the pandemic started, the dr got changed. Even though my son still had symptoms, the new dr never tried to add to his dosage in spite of me sending letters to the dr , case manager as well as to conservator. Almost 3 yrs passed by. Now my son himself has reported that he has been hearing disturbing voices and his case manager has setup a dr appointment for him. I am keeping my fingers crossed and hoping that he will express himself properly to the dr and dr will make some beneficial change to his meds!!
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Is your son living with you so that you are sure he isnât accidentally missing doses?
My son was missing doses without realizing it and started complaining of symptoms.
When I moved him home I found that he had missed quite a lot of his medication.
I know clozapine accesses multiple receptors in the brain but isnât a strong dopamine antagonist.
Iâm not an expert but I think that may be why my son also takes saphris. My son says it helps although it is hard to really isolate the variables to figure out if saphris is really needed .
I just thought Iâd share our experience in case it helps
Thanks for sharing your opinion. My son lives in a group home and all meds are dispensed there by a technician. My son had never gotten free from symptoms. The doctor was still in the process of raising his dosage when she got transferred. The new doctor never changed anything because my son never complained about anything. I tried to point the things out to him and other relevant people but nobody listened. But now my son has complained on his own and hopefully the doctor will pay attention to. He is on 400mg/day and hopefully he has scope and can go up.
As you probably know caffeine and cigarette smoking can affect the levels of clozapine in the blood quite a lot which means the dose may need to change if one of those factors changes.
My son was at 500 but has recently been taken down (stepwise) to 400.
I hope the doctor listens to you son if not to you!
Using medication to control what is called âschizophreniaâ is a complete lottery. Itâs a game of chance. The recipient is a âguinea pigâ a living medical experiment. Blood tests were introduced monthly because clozapine is an extremely dangerous toxic substance. It is known as a last resort drug, used when the patient isnât responding favourably to any other drugs. I would suggest joining groups who specialise in dialogue.