I already realize that this drug does not work for every person who tries it, I am also aware many people are turned off by the monthly blood draw requirements and that few have the patience to give this drug a full year before deciding that it is no longer worth the effort. I can only speak from my own personal experiences with my adult sz son…it took a full year or more before all of the worst sz symptoms (voices, visions, delusions) went away completely…I am so grateful that it has worked so well for him and continues to work well to this day and it has been at least 6 or 7 years now. If I could advise anything it would be to be patient and tenacious with this medication, it can pay off handsomely in time-also the side effects that occur during the first year will go away too, or at least they have for my son. . (NAMI article link below-)
Catherine, did you see slow, steady improvements?
or was it up & down?
or no real results, then improvements?
The Invega shot my son is on is a struggle for me - and if he realized what was going on, it would be a struggle for him.
At my request, they supplemented his shot with 6 mg pills to start this month, then stopped them right before the shot gives out on him anyway. The doctor was so sure that because he got the shot in his glutes instead of his arm that it would work better.
Since we stopped then last Thursday, it’s been a gradual decline and he has to go until next Monday to get the next shot.
He’s went from barely mentioning his delusions & acting fairly normal except for his social anxiety to lots of pacing, laughing to himself often & pretty much talking about nothing but his delusions. He’s up when I go to bed & up when I get up, but he says he’s sleeping. I guess I’ll spend a fairly sleepless night tonight trying to figure out if he’s telling me the truth or not - not that I sleep well anyway.
It’s only been 4 days & he has 7 to go … I’ll wait for 48 hours awake, then call them to see what they want to do.
His new case manager asked me if he had ever tried clozapine, so I guess that might be where they go next if the Invega is a no go.
@slw Not a lot of differences the first couple of months, just adjusting to the drug…real tired at first-sleeping a lot, hungry, drooling at night etc…then gradual positive changes, always improving, little by little, very slowly, by 6 months almost all of the voices were gone, and no more visions…By one year there were no more voices at all, delusions were very brief if there at all…I have even seen additional improvements cognitively speaking in the 2nd, 3rd and 4th years…very slight but always better…the negative effects remain, the lethargy, apathy and lack of motivation but I have found ways to get him busy and they work…not every single day but more often than not. His hunger is more manageable now …he sleeps steady at night and the problem with some slight drooling during sleep which bothered him was stopped by adding 1 mg of benzotropine (commonly used to ward off side effects anyway) Before my son used the clozapine he had tried, Geodon, Risperidol, Abilify, Invega and had very little if any improvements, not enough to mention really. His doctor gave most of the drugs 6 months before changing except the Abilify which was gone within 2 weeks because it made him violent. My son’s doctor called clozapine the last resort drug…he also told me that if his child had my son’s illness it would be the drug he would want to use to help his own child. That was what made me decide to try it. I am so glad I did. I hope that everything works out for you and your son. Oddly enough in spite of the fact that things are so much better now…I still have trouble sleeping and relaxing…but I am working on it. My best to you.
Thanks Catherine.
I’d be willing to try it, but I don’t know how I’d keep him on it since he’s so determined not to take anything.
A few weeks ago, he agreed to take the extra Invega orally, and I thought he actually did for one night before refusing.
We rearranged some things in his room yesterday & what did I find on the floor? The one pill he acted like he took.
Was your son willing to take the Clozapine at first?
He did what I told him because I promised to cut off his cigarettes and I controlled his money After he saw that the voices went away entirely- he was ecstatically happy and said he never wanted to stop taking the medicine. He is 100% compliant now. I find that a set routine helps… I have his pills sitting by his chair each morning, he takes them without even thinking. In the beginning I told him each day that the medicine was taken without any arguments he got a pack of cigarettes. He tried me a few times but he had no other alternatives but to comply. Smoking was critical for him. ( I hate it and I don’t smoke but I choose my battles) I would never except no for an answer when it came to the medicine…might not work for everyone, but it worked for me. His doctor said it was rare to have such compliance as my son has but I am just grateful.
This med worked right away with my son, amazing really. Then it just stopped and was increased. He had seizures then anticonvulsant was added but it never worked again, he later had a low ANC and it was stopped abruptly and his psychosis became even worse. One of his DRs has suggested maybe trying it again.
What side effects other than drooling has your son experienced? My son had atropine drops under the tongue for drooling as well as Cogentin. The worst side effect was vomiting. It was anywhere at anytime. And he doesn’t have that thing that tells you to run to the toilet either, not fun. Its happened at restaurants, Drs appointments, all over the house. It was really exhausting. It would happen often but not all day, maybe every 5 days most of the time. No warning no nausea.
In my other post I mentioned that in the beginning he slept all the time, then was hungry all the time and he gained weight and the drooling, he might have thrown up once or twice…but rarely…he also had 2 seizures (about 4 years into taking the medicine) but the neurologist could not say for sure it was the clozapine, he said seizures can happen to anyone at anytime for many reasons (and clozapine only carries a -1% chance of a seizure as a side effect)…did not make me feel better but he does take depakote now regularly just in case…he also takes the benzotropine (1mg) which is generic Cogentin…after the seizures the dose of the clozapine was reduced by 50 mg per day…he did fine with it after that…he has not had another seizure since Jan 2014…and I think the last unexplained vomiting was once last year sometime (could have also been something he ate) …another factor that plays into the effectiveness of clozapine is whether or not the patient smokes which my son does, the doctor explained to me that with clozapine it is intricately entwined with the nicotine in the cigarettes (chemically) and for smokers on clozapine they have to stay steady on the number of cigarettes they smoke or if the reduce or increase them it has to be gradual (like if they needed to quit it would need to be very slowly) The problem is too much nicotine on any given day decreases the effectiveness of the clozapine and too little nicotine (or a sudden drop) increases the potency of the clozapine which could appear like too much in the body and in behavior…my son smokes 16-18 cigarettes a day…which is a great improvement from the 3 packs a day he attempted to smoke in his 20’s. It seems to be the right balance in conjunction with the 250 mg of clozapine he takes (125 mg twice a day) If the doctor suggesting that your son tries the clozapine again can present a valid reason why your son may not have the exact same problems the second time around…then I would take his advice, if there are no other better options to fall back on. I am so sorry for all the effects your son (and you) have had to go through, finding what works long term for our sons is no picnic but I would do it again if it gave me the results I have today. My best to you and your son.
That’s very interesting about the nicotine. I’ve heard of keeping caffeine levels steady and sodium for the Lithium but regarding the nicotine is news to me. My son doesn’t smoke but does consume copious amounts of caffeine if given the opportunity.
I would honestly give Clozopine another try. However, we had already retrialed it after the seizures and went up to 250mg with the seizure meds on board and it didn’t work at all so I wasn’t too upset that we had to stop. I was mainly concerned about his low ANC at that point. I’m kind of wondering if instead of Thorazine as prn maybe trying to go up and see if it can help him would work. It’s one he hasn’t tried yet.
Yes caffeine plays a role too but I think it affects mood more than the actual medication levels…In the beginning my son drank pots of coffee as much as he could get his hands on and today he has a 1 large mug in the morning and then 1 pepsi later in the day and that is it…I have been working with my son for 11 years with the sz and all the years of his adolescence were me trying to drag him to school or to rehab or to a counselor…I thought drugs (mainly pot and alcohol) were the issues then but in retrospect I think the sz started then also I just didn’t know what I was seeing at the time.
My son has never had thorazine so I don’t know anything about it, How long did you try the clozapine before serious problems arose? After you had your son try it again, how long did you give it before you decided it didn’t work. Just curious. Thanks for sharing.
Hi Catherine. He was taking Clozopine for about 3 months, it worked almost right away once he got to 200mg. After about 3 months it was no longer effective so was increased to 250. 4 days at 250 he had a seizure. Not just the big seizure that he went to the ER for but also myoclonic jerks, sudden falling and dropping things. He wouldn’t use stairs or shower without a chair and would often hold onto me when walking. Clozopine was reduced. He was diagnosed with generalized epilepsy and myoclonus after 3 day EEG. He does have a history prior to this of staring type seizures when he was much younger. After increasing the Trileptal he was already on and also adding Lamotrigine he was retrialed back up to 250 for not very long, maybe a few weeks or a month. It was not working and he had low ANC and was forced to stop right away. His labs went back to normal right away.
Wow…that’s a lot to contend with. My son’s 2 grand mal seizures he had-- put him in a coma each time…the first one lasted for a full day and the second one was about 12 hours of no stimulus response. The doctor called his condition atypical epilepsy, which I think means “I don’t know what kind it is” I am just glad he hasn’t had anymore since they gave him the depakote. I am convinced that brain chemistry is like walking a very thin tight rope with no net beneath, always a risk. I hope your next protocol works very well for your son, stay in touch. 
My son is also doing better on clozapine than on any other AP that has been tried with him. Invega worked somewhat, but his weight gain was so extreme, the pdoc decided it wasn’t work it.
My son was initially discharged from the hospital with a daily dose of 250mg clozapine. He stopped taking the 50 mg in the mornings and slowly declined, and returned to the hospital after several months. At that time, the pdoc told him to take the entire dose at the same time, at bedtime.
His bloodwork has always been fine. He still has strong delusions and episodes of hearing voices - sometimes I think that is due to a high intake of caffeine on some days. He is not well - but he is better.
Glad to hear your son is doing better. My son gained most of his 100 lbs over on clozapine but he is finally starting to lose now and his health is good so far…he also takes 250 mg but he takes 125 mg both am and pm…everybody is so different when it comes to meds…but my sons blood work has always been good too so as always I am very grateful. I had to cut back my son’s caffeine intake or he would have caffeine running through his veins…now he does just one good sized mug of coffee in the morning and then 1 pepsi later in the evening and that is all…and he does well…How long has your son been on the clozapine? If it has been less than a year I suspect you have many more improvements to see ahead…or so go my hopes for you and your son…take care
I wish my son would split his dose, but he was very rigid about the time he took it, and would skip the morning dose if he overslept - which he usually did. And then he convinced himself he didn’t need that dose. So for him, the best solution was to move all to one dose.
It has been over a year now, so I think we are pretty much at ‘baseline’. Either that, or he needs a higher dose, but his pdoc is very conservative and I think is unlikely to change it as long as my son is living safely on the current dose. Mostly I worry about 1) the negative symptoms, which are pretty significant, and 2) the breakthrough psychosis, which I suspect is linked to caffeine consumption.
I am certain my son could be doing better with insight into his illness. Without that, making progress is hard.
My son was on Clozapine for almost 20 years. It deleted all of the hallucinations and voices, but the side effects were so hard for him to live with. He drooled excessively, slept most of the days, and put on about 100 pounds over the years. But even worse, was the OCD he developed, which made his life almost unbearable for him and those around him. It was also very constipating. Blood tests were always normal. About 3 years ago, he started missing his pills some days, and was not living with us as he got married. His behaviour became erratic which was a warning sign. After checking his meds in the blister packs, and seeing multiple times they were missed, we contacted his doctor who suggested the injection once per month. His whole life turned around within a month. No drooling, slept normal 8 hours, weight started to decrease due to his energy level going way up, and the OCD completely disappeared! He was and is thrilled and never misses a dose now. Sadly, his ex-wife introduced him to drugs, so we are dealing with a different problem now. He’s living in a residence and coping.
Good to hear…my adult son 29 has just started on clozapine…had been ill for 13 years…I am his SDM… We are aware of all the side affects and blood work required. He has no insight to his illness what so ever…hopefully clozapine in time will allow him to live somewhat of a normal life…
Oh my! Coma? That must have been so terribly hard. Yes, everything is a risk. I asked the Dr today about going up on Thorazine to see if it helps with the psychosis. My son has been alot less agitated since coming home from hosp. I suspect the Klonopin is helping with that. He is still laughing and pacing and silent most of the day. He told me he is interacting with angels and demons though right now they are funny. His Dr seems unsure to do anything more. He doesn’t want to rock the boat I guess. Maybe that is best for now to see how things shake out for a bit. I am not however ok with accepting this as being as good as it gets for him.
Just a friendly word of warning about the klonopin, very addictive and unpleasant withdrawal symptoms, it is actually meant as a temporary (up to 2 weeks) use for severe anxiety. I know this because my sister who is schizo-affective was given it for 5 years and was so addicted to it-she developed every horrible side effect that is listed for the drug and getting off of it was close to being the death of her, her family doctor helped her by getting her on Buspar which also helps with anxiety and can be taken long term and has less side effects. She is doing better now but it was touch and go for awhile. It kills me that doctors prescribe and are seldom willing to give us the full story (or full options) on the drugs. We have to practically reeducate ourselves in everything, drugs, psychiatry, the brain…you name it…it’s frustrating…if you are dissatisfied with your son’s progress or how his doctor is approaching the treatment, definitely consider seeking another doctor if at all possible. Your son is fortunate to have you in his corner fighting for him.
Hi Catherine, thanks so much. I was glad for him to take something longer acting than the Ativan. The thought was that since he doesn’t touch any meds himself it would be ok. I’m certainly concerned about it being habit forming and didn’t know he was on it until I picked him up from the hospital despite thinking I was being informed. He doesn’t ever remember to take his meds and we even have to hand it to him with water because he’s just that distracted that he’d set it down and go on. Im not at all worried about him abusing them. It does seem to help with the agitation and with him being less afraid. I really love his Dr. he has been so responsive. I could email him 10 times a day and he’s usually quick to reply but I feel like he’s having a " this is as good as it gets" approach right now. I don’t know what to do. I do see his point but also I know my son can be better. It’s like doing nothing more is like leaving him abandoned on another planet and not even trying anymore to bring him back.
My son had been taking about 5 klonopin a day for a long time - along with a fairly high dosage of Suboxone for an opiate addiction. He would take his Zyprexa sometimes, but the klonopin & suboxone was his go-to drug cocktail.
He wanted off it pretty bad, so stopped cold turkey at the end of last August & has been in & out of the hospital every since because they can’t get his psychosis under control. Clozapine is being mentioned now if something else doesn’t work in the next few months.
He did not have any physical withdrawal symptoms that we could tell, but either those drugs were masking his symptoms or the mental withdrawal pushed him into a full psychotic break.
The doctors don’t think it caused his break, but it had to contribute. I’ve spoken to both the suboxone doctors (who are psychiatrists) and everyone else he’s seen. No real answers, but wanted to mention it.