@hope4us So glad that worked. Doesn’t he play the piano?
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Clozapine is the only thing that is working for my son. He has shown a lot of improvement. He was on 800 mg Seroquel when they started him on Clozapine. They titrated the seroquel down as they titrated the Clozapine up. Go on facebook to a page called “clozapine” . There is a book you can order there that tells why Clozapine should be the first line of defense and its vast superiority over anything else. The side effects aren’t great. But there are things to take for that too. It’s not good when they started piling meds on top of another. One thing at a time is best to see what’s working and what’s not. Anyway, after 3 other drugs, he went to a psychiatrist who said immediately that he needed to be on Clozapine. It takes a good while to see improvements from Clozapine. You will see some slowly each month but it just gets better and better. He’s been on it for over a year and is improved even more every time I see him. My son was in a treatment program when they started him on it and most doctors probably prefer that for initial start. It is just important to find a dr. who is very comfortable using clozapine. That is the key.
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Yes, he can play the piano but I think the Formal Thought Disorder part of his illness has affected his ability to do much in that regard…He certainly can’t read music right now…I hope he can again someday. I’ve taken his guitar to him but I think that is also not possible for him right now. He played another instrument several years ago (small music scholarship, too!) and gave that up cold turkey. I was surprised he was so adamant that he would never play it again but I figured out it was the illness.
Invega Sustenna is the only AP our son had been on prior to Clozapine. We always felt like he responded well to Invega but it did not prevent repeated catatonia as the illness progressed. The longest he was on it consecutively was 3 months of injections and then 6 months over a year later. I think because of the severity of catatonia, Clozapine was chosen. This was the second doctor to suggest it but I was not ready for it a few months ago. I needed to learn more about it. And when our son developed Formal Thought Disorder and we saw how terrible that was for him, we embraced Clozapine. And we continue to read of quite a few success stories with it.
He was due for next Invega injection when doctor started Clozapine, I think increasing 50 mg. each day to 200 mg. but I’m really not certain because it was administered by staff at personal care home. That was in August and he reached 400 mg. after of 2 months, now going on 3 months. Invega Sustenna just stopped abruptly. A doctor once told me it takes several months for Invega Sustenna to be completely out of your system, but the internet says it has a half-life of 25 - 49 days.
I am reading the book on Clozapine mentioned by @rosie94 and yes, the authors believe Clozapine should be a first-choice AP…certainly that it is underused. Our son is med-compliant while at the personal care home and they take him for weekly labs. He has a long way to go but his speech and disordered behavior have improved dramatically. Vision is still a big problem but we are getting other medical tests to try to determine the cause. We are hoping Clozapine also helps him gain some insight to understand the need to take it. He can’t stay at this personal care home forever and I am hopeful he will not need to. Staying med-compliant after that is our biggest worry.
Hi Everybody,
I am really convinced that my son’s doctor should consider clozaril as an alternate for invega sustenna. For my son they started with risperdal consta continued till they reached the highest dosage of invega sustenna. But my son hardly improved. Then they did not stop invega sustenna but added mood stabilizer. With that addition my son got a little better but not a lot. They they added additional antipsychotics zyprexa and haldol and that is when he showed some improvement. Even after having so much med piling on top of each other my son hardly has any functionality. He can barely get out to get cigarettes. But how do I tell all this to the doctor. The doctor may feel offended and tell me that it is she who the doctor is and not I who is suggesting the med change. Please suggest.
You won’t know until you ask. If you meet resistance, just ask why. You have a right to understand the treatment being offered (or not offered). There may be a good reason. If you don’t like the answer, ask what it would take for that doctor to prescribe it. And if you still don’t like the answer, consider a different doctor. Also, I just learned that not every psychiatrist can prescribe Clozaril. The doctor has to have a certification to prescribe it.
My suggestion is to be informed and ready to go toe to toe over your child. I have insisted on consulting with doctors at each program and I have been relentless in advocating for him. I have been married to 2 doctors so I would not worry about offending them. I would recommend that you explain that you are upset that your son has so many medications on board. That should not have to be the case. The fact that he can hardly function should make it obvious that it is not working and he is overmedicated ON DRUGS THAT AREN’T WORKING! Tell the dr. that you want him on Clozapine and if dr. is uncomfortable working with Clozapine or doesn’t want to prescribe it, switch to another doctor. Clozapine stands way out from all of the other AP’s but all drs. are not used to working with it. You are paying the dr. so it is ok to insist that you want your son to try Clozapine.
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hope4us is right. Psychiatrists have to be trained to prescribe Clozapine and pharmacies have to be certified to work with it.
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Thank you hope4us and Rosie94! I feel empowered with your support. I am suspecting that may be this doctor does not have the certification to prescibe clozapine. I remember about a year back also I had discussed the same thing and she did not give me a clear cut answer. Also my son is on a community treatment program and under conservatorship. So it is not very easy to change the doctor. But I will definitely discuss it with little more assertiveness and try to figure out what she says. Thank you very much.
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They did this to my grandson. When he got out of the hospital he was on seroquel, resperidal, depakote, artane, clozapine and lithium(to increase his white blood count). He was a zombie i worked with his pdoc and he now only takes clozapine and lamictal
My brother had frequent seizures every 10 minutes on the worst day lasting around 10 seconds. He’s a heavy smoker and of course had to stop smoking on his latest admission to the psych ward his sixth episode in 15 years. I find your story very interesting in its resemblance. The doctors did not mention anything about a link between clozapine and smoking. I wonder how common this is? My brother at his worst became in continent and in a wheel chair in case of falls. Yet before being admitted was living independently. Still we have no answers and he’s been in hospital 1 month now. Symptoms have improved and no seizures for two days but we need to know why this happened as this level of deterioration was unprecedented and extremely debilitating.
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I have never heard of anything quite like that. I am so sorry for your brother. My son’s doctor explained early on about the link between clozapine and smoking and explained that as a smoker his smoking had to be pretty steady as in if he smokes a pack a day it had to stay close to that or if it was lowered or increased it would have to go slowly if not the more nicotine in the bloodstream, the less effective the clozapine and of course the less nicotine the more potent the clozapine. My son was fortunate enough that when they hospitalized him they at least gave him patches and gum and on one occasion the hospital he was in had a smoking room.
He started off when he was first diagnosed being an incredibly heavy smoker, so much so that he would pick through butts in public ash cans to get more than the maybe 2 or 3 packs was going through in a day…often he would come down with upper respiratory infections or strep I am sure due in part to the bacteria of the garbage he was smoking. Today he smokes less than a pack a day and the reduction was extremely gradual.
My son had 2 grand mal seizures 2 months apart and in each case he went into a deep enough sleep as to be called a coma and didn’t wake up until 20 hours later the first time and 16 hours later the second time. It was after that second time that they prescribed depakote for him and now he has been seizure free for almost 5 years. His neurologist said he could have a slight scarring on his brain for any number of reasons, even a childhood sports injury or his previous drug abuse, or the seizures could be from any number of reasons, he said very seldom do they know the precise reason for seizures in anyone (not very reassuring) His psychiatrist said and showed me the studies that said that the chance for a seizure in clozapine patients on 350 mg per day or less was less than 1%. I am just glad he has had no more since. He is doing well on the clozapine and takes 125 mg twice a day along with the depakote. He has been med compliant though for going on 9 years. He will be 35 in April.
Just a thought about your brother, maybe he needs to be seen by a regular doctor or neurologist to rule out other complications before proceeding with his psychiatric protocol. Maybe the physical doctor and the psych doctor could work together to find answers. I am glad that for now he is showing signs of improvement. I wish him and you the very best going forward.
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I just finished reading the book recommended by @rosie94 titled “Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine”. I learned a lot and there is some very practical advice on how to manage the administration of Clozapine and on adjunct medications and treatments from the doctor who co-authored the book along with the doctor-parents of a young man with SZ and the young man himself. I plan to discuss some of this with our son’s psychiatrist.
Our son is better than he has been in over 2 years, with glasses he can see (and read) again(!) but he is at the very beginning of realizing his losses, facing the painful memories and reality of past illness, holding on to good memories, letting go of lost memories (perhaps they will return eventually?), and hopefully rebuilding his life. I can’t predict the future but we are hopeful.
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Thankyou for taking time to reply that was my first post. This must be one of the only places we can go and feel understood and I’m thankful for that. No more seizures for a week now but still no answers and while the psychotic symptoms have decreased almost to baseline the ward won’t let him home. We call to ask for an update and they just say they don’t know and to wait for the doctor. When we visit the ward we just get either ignored or our bags searched with an unfriendly look of suspicion. The hardest part about visiting the ward is dealing with staff that make you feel like you are nothing and that your family member is just another number. It’s hard to support family members to recover when you have to fight daily to avoid being excluded from the process. The mental health system is as big a hurdle as the illness itself 
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Hello, So I am here with an update about my son. He has been started on clozapin and today is 4th day. He has been started on 25mg with increments of 25mg/day. He is still on all the other meds ie invega injection (due in 2 weeks), depakote, zyprexa and haldol. I guess these will be taken off gradually one by one depending upon how the clozapine performs for him. He is outpatient in a residential facility. I met with him yesterday. He gave me a much nicer hug this time which felt like coming from inside of him. He told me ,“Things have calmed down”. Then he started talking about the past 4-5 years , his travels during his psychotic states that he does not talk about otherwise. So keeping my fingers crossed and I am afraid to say that I am feeling hopeful. Thanks tons for your support.
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Pally & others
“need to understand how do they switch him from sustenna to clozapine.”
The two can go together. Our daughter was on the oral Invega at 9 mf and Clozapine (Clozaril) 300 mg.
As some additional information though, I would like everyone to know that clozaril has a 1 in 1000 chance of creating water around the heart. Whether it was the slight pneumonia that caused the water in the lining if the heart or the clozaril…we will never know. But Clozaril (Clozapine) was stopped immediately.
Please, if your loved one complains of chest pains, tighness of the chest, or troubled breathing/labored breathing…seek medical attention. Only an echocardiogram can show this fluid. We also believe her elevated pulse was a missed indicator as well.
Clozapine does have many benefits, but so many potential side effects.
Daughter healed from the physical effects (water around the heart) but very soon after was instutionalized to get restabalized. (I mean, they abruptly stopped a MAJOR AP…like right now) After a week at the Mental Hospital, they just increased oral invega to 12 mg, added Cogentin 3x a day, and upped the as-needed 1mg Ativan to 2x a day.
Its been a tough road since stopping the Clozapine, but honestlty clarity has come, emotions are being expressed (flatness is gone), she swings her arms when she walks, mouth isn’t hanging open anymore …all sounds good right? Except she’s an emotional roller coaster.
Not real sure things are where they ought to be with her medicine, but here we are.
Truly don’t mean to scare others with the news on clozapine…just wouldn’t feel right with myself if I didn’t share this important info.
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Well they keep him on all they gradually increase clozapine and decrease other meds. My grandson was in the hospital so yhey brought him up quick on clozapine and never reduced his others. The minute he came home from the hospital i stopped the seroquel because he was a zombie we worked with his doc to stop resperidal and changed from depakote to lamictal. He quit lithium on his own. We also weaned him off artane. He currently only takes 300mg clozapine and 75mg lamictal. He works he has friends and his life is back again
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Sounds like he is doing well. That’s all we ever hope for.
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Good news for you! I think there is a tremendous amount of hope for many person with this medication! We remain hopeful for our loved one on Clozapine since August. Last year he was missing for 3 months and living out of a car and semi-catatonic or worse much of that time and eventually hospitalized. The first half of this year he was in and out of several different hospitals and residential programs. He has been hospital-free since July and even after a few months in which he had Formal Thought Disorder, he started improving in October/November and we have had a wonderful Christmas with him home with us (from a group home) for several days! He is as normal as we have ever seen him except for we believe he still does not accept that he has an illness that requires meds. He has been med-compliant since July (required at the group home) and we have a very skilled counselor who will begin meeting with him soon. We are hopeful the counselor, along with the group home for now, and his family, can help him rebuild his life and also become med-compliant.
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This is great to hear. So glad he is getting clearer. My son joined for a dinner out on Christmas Eve and he did great!