My son just started Clozapine. Prior to this he has tried Haldol, Risperidone, Invega Sustena, and Abilify but none of them alleviated his psychosis. Also, he has gone long periods when he was not meds compliant. He’s had SMI since he was 19 and is now 51. In those 32 years he’s had periods when he has done well. For example, while on Risperidone depo he got a BA and MA in social work. Unfortunately, he shortly thereafter couldn’t find a job, lost his girlfriend and, subsequently, decompensated. That was about seven years ago, and he hasn’t done well since. We are desperate for Clozapine with lithium to help. We aren’t happy about his taking pills instead of a shot and the bloodwork but even he now seems willing to try anything.
Our son has been evicted from apartments and motels because he scares (his appearance) and disturbs others and we fear that, without improvement, he will wind-up homeless. We are elderly and can’t live with him because he makes awful messes and can be verbally abusive.
Would appreciate knowing you loved one’s experience with Clozapine?
Clozapine is an under-used medication in the US. Many professionals…those that understand it…consider it the gold standard for anti-psychotics. It was a life changer for my LO. He went from not being med-compliant to being med-compliant on Clozapine (other factors helped with that, also) and has been for almost 5 years now. He went from living in a group home to working full time and having an active and healthy social life. He says it helps him think more clearly. I highly recommend three resources on this topic:
(1) the book https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X,
(2) a recorded webinar sponsored by NAMI: Support & Education | NAMI: National Alliance on Mental Illness
(3) believe it or not, a private Facebook group “Team Daniel and the Clozapine Community” EXCELLENT RESOURCE!!!
Hello, I have written a lot on this forum about my son’s experiences with clozapine. He also was on just about all the meds your son was on prior to clozapine. I feel like it saved his life. He has successfully been on it for well over 10 years. My son was never college bound, looking back I believe he started out on the autism spectrum but was never officially diagnosed and now he has an unspecified seizure disorder which thankfully is under control for now. So, I always stress every patient is different and unique. If you have time to read some of my entries on clozapine I go into greater detail on some things. I can honestly say the drug requires a lot of patience, but with patience it has a really good record of really helping people significantly especially with reducing or completely eradicating voices and major delusions. It took about 6 months of being on the drug when my son commented he wasn’t hearing the same voices and that there weren’t very many like before. After a year of steady use, he no longer heard any voices at all, and his paranoia was reduced by at least 70%. Initially he did sleep a whole lot, and he gained a lot of weight but during the second year he and I started walking daily (he is my roommate) and his sleep leveled out and his weight started to normalize. He still benefits from redirection, (from me) it is still difficult for him to get motivated but if I suggest something or join him in some outside activity, he will sometimes go for it. Overall, he is 1000 times better than prior to clozapine. He still has the less severe symptoms of schizophrenia, and he benefits greatly from living with me. I remain his legal guardian even though he is very agreeable about anything needed for his wellbeing, I worry “what if” something quit working even after this many years. Today he is fine, we have a great relationship, he still has trouble with finances, cooking and shopping, he can do a good bit of those things, but he does better if he can ask me questions often. He cannot work. We tried many variations, and he has too much anxiety when left alone to his own devices in unfamiliar surroundings. He stays busy at home and he and I have activities we do when they come available like festivals, car shows, the state fair and exploring all of our great parks and hiking trails (I am retired). Anyway, my only wish is that my son could have started with clozapine instead of it being the last choice. Being able to laugh and converse with my son every day and trust him to act pretty normal in most situations in the home, is priceless to me and wouldn’t have happened without the clozapine. Good luck to you and your son. 
Hi, my heart goes out to you, you have been dealing with this terrible illness for so many years. I am glad you son had some decent years. My son is 28 and I have been his sole caregiver for 12 years. He is on Abilify orally and is not med compliant, even tho he claims he is, I can tell by his bazaar behavior that he does not. I keep my son afloat in his own place,but barely. He never cleans his place, doesn’t t shower, and doesn’t t drive and literally seems angry and delusional half the time. He constantly begs me to give him money for food, alcohol, junk on Amazon and I get so worn out form it that I give him way too much. Anyways I pray your son finds his right meds from clozapine. I have heard so many good things about it and it is really good your son is willing to try it.in I would love my son to try it , but he wants nothing to do with changing his meds, hopefully someday. My heart goes out to all of us dealing with the constant heartbreak and worry and burden this disease causes. Good luck and many prayers.
My son 26…right now a bit out of it and abusibe new doctor lowered meds and changed he was dping better prior…his first doctor at 16 tried to do clozapine…by his dad took custody and refused to get treatment…instead thinks hard work is only think needed…im brunt of all anger and craziness…if he doesnt get hoapjtalized this weekend…maybe i will suggest the clozapine to doctor…he was stable 4 awhile on olanzapine, oxcarbazine, trintillex…
Would be good to habe a site where they caN go to talk and meet to do computer games and such
So tjey arent isolated as much…mine spemding too much on online gold for video games…
For my daughter, it is the wonder drug. It is slow to take full effect, but nothing else has worked. She was 14 when the mood swings and psychosis started. Disgnosed schizoaffective at 15. We tried risperidone, abilify, quetiapine, and latuda, along with an array of mood stabilizers. Nothing touched her psychosis. She was completely unable to function. With clozapine, she has slowly built a life for herself. She got her GED, a job, a license, and friends. She willingly does chores in the house. She takes part in decision making. She has always accepted treatment. Deep down, she knew things werent right and she trusted us. The blood tests are an inconvenience, but she goes willingly. She knows that’s the only she can get the clozapine - the linchpin of her progress.
The founder of SZCurez is Bethany Yeizer, she takes Clozapine herself and a few days ago has sent a letter from Angry Mom’s in which they’re looking for support to end up the REMS (Risk Evaluation Monitoring Systems) for Clozapine, which is the ending of blood draws.
Here’s the link to that letter and they’re urging caregivers to contact our State representative to sign the letter and join their colleague Brad Sherman (D-CA) in his efforts to help the serious mentally unstable to continue their intake of Clozapine without interruption to stay well. I might be late to pass along this petition for support, it took me a while to figure out how to share it.
I’m glad your daughter was helped by having access to Clozapine after taking a few others and that she recognized the difference in taking it voluntarily and that she could trust you.
https://mailchi.mp/947a8ff64919/curesz-foundation-spring-newsletter-13553915?e=ce59025e05
An update from the "Angry Moms’ group is that the US Congressional “Sign On” letter gained enough signatures from other legislators and the letter requesting changes to the Clozapine REMS was sent to the FDA on 8/9/23. Now we are waiting to see what the FDA’s response will be.
My son (38), first got sick at 28 and has been taking Clozapine for 4 years, after being designated “treatment resistant”. He has taken all the meds you mention, plus a few more. Clozapine started working after a few months, but he still had voices some of the time and had periodic episodes of severe psychosis. I would estimate he was 65-70% better.
For the last 3 years he’s been on 400 to 500mg Clozapine, an injectable antipsychotic (fluphenizine), lithium, Depakote plus a number of vitamins which were recommended after genetic testing.
He was manageable but still not very stable. He did however have significant weight gain, involuntary tongue movement, OCD, etc as side effects from the meds. Voices told him to reach out and tap people, sometimes complete strangers, on the cheek.
He recently decided the meds don’t work and stopped taking them. He is now in a psychiatric clinic where after a month he has slowly agreed to take meds and has gotten a little better.
One big problem I have experienced that I haven’t’ heard anyone refer to is smoking. My son is obsessed with cigarettes and has gotten aggressive when he is blocked from getting them. Cigarettes, as I understand, reduce the effectiveness of Clozapine by 50%. So, even if he is taking high doses the actual med reaching his system is much less.
Anyone have experience with this intense addiction to cigarettes?
Thank you so much for this information, @hope4us ! And thank you so much for this post, @stp .
My son’s psychiatrist just recommended Clozapine while talking to her this morning. My son hasn’t shown improvement on Risperidal or Zyprexa, and she thinks Clozapine is the way to go. I’m not looking forward to weekly blood draws, but at least he’s used to having his blood drawn because of his Crohn’s.
I’ve ordered the book off amazon that you recommened @hope4us , and I’ll definitely watch that webinar, too.
Have you heard of Athelas home finger stick program for Clozapine? (I heard it mentioned in a youtube talk by Dr. Laitman.) My loved one is considering Clozapine currently but really doesn’t want venous blood sticks so we are looking into this. You can see info here Athelas Home - At Home Blood Diagnostics in Minutes for Neutrophil & White Blood Cell Counts I believe (but am not positive ) that it sends the results to the the REM system. We were told to put info in here Clozaril – Golden Gate Pharmacy Services Inc to determine eligibility.
Wow, thanks,
Im going to continue to ask for this.
They ignore me when I do.
The private Facebook group “Team Daniel and the Clozapine Community” has a lot of factual information about cigarettes and Clozapine and all other aspects of being on, or wanting to be on, Clozapine. I have found it to be surprisingly helpful. This is a journey (It is a marathon and not a sprint!)…sometimes two steps forward and one step backward, but you are doing the best you can to continue to advocate for your loved one! My very best to you.
Thank you, that means a lot.
The first psychiatrist my son went to at 16 yrs was suggesting Clozpine, but his dad scared him from all the doctors.
The doctor said that his brother is schitzophrenic, and that almost all
schitxophrenics start smoking, thus his brother had a business making $2
a pack for cigarettes in his group home.
Thank you so much for the encouraging response. My son has now been on clozapine for four months but his doctor just started increasing the dosage because blood tests show he isn’t at a therapeutic level yet. Continued good things for you and your son.
stp
@hope4us … Thank you for sharing this information on the Clozapine Community Facebook group, it has been so helpful, have also purchased the book you recommended on ‘Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine’ by Dr Laitman and his wife.