Starting up on Clozapine

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I didn’t want to hijack the other thread, so I’m starting a new one.

They started my son last Saturday (today’s Friday, so 6 days) on Clozapine.
His Invega Sustena shot should still be active, not that it’s doing all that much for him.
They’re also giving him Neurontin, Trileptal & Trazodone.

They started low & went up 25 mg/day of Clozapine as recommended.
He’ll come home today on 150 mg, split between morning & night.
I’ve been told he’ll hold steady on that until his outpatient doctor looks at his blood work on Monday & makes a decision about how to titrate up (I read that 300 mg is the lowest therapeutic does, although I see here that some people do OK a little lower than that, but not as low as 150 mg).

I’m a little nervous because I don’t completely trust the outpatient doctor to take him up as quickly as he needs to go up on anything. But, I am happy to have him off the shot because they can make more frequent adjustments - if they’ll do it.

Can anyone share how their experiences with titrating up to the maintenance dose?

He is calmer, I see no evidence of voices or hallucinations, he says he’s sleeping - he’s definitely eating again.
He’s still delusional, but not as delusional as he went in, so that’s back to what has been his baseline for the last year - although I’m still not accepting it as his permanent baseline.

But, I’m also worried because he is craving a cigarette so he’ll be smoking all weekend, and I know that will make him metabolize the Clozapine faster. I’d have been happier if they told me to keep upping it by 25 mg/day through the weekend, but I also know how careful they have to be with this med.

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I don’t have any experience with this drug but I’m very grateful your son is doing better as is mine!!

Hugs of support sent your way!! :hugs:

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With my son they titrated him up very slowly. If I am remembering right, they had him up to 200mg when he left the hospital. Then over the next 6-7 months, brought him up to 600 mg eventually. Each time he went up it was only by 25 mg increments, to make sure that he wasn’t having any of the adverse reactions that might have happened such as low white blood cell count. He has been at 600 now for almost 6 months and I still see improvements. To be honest, at this point, I’m not sure if its the drug still improving or, if his brain is healing. I read that for people who have major psychosis, that it can take up to or over a full year before their brain even starts to heal from it. The question for all of us is…how much can heal and what is left as permanent. Either way, I am told that it is not too likely that they will raise his dosage past this amount as the risks of seizure get much higher after this amount.

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I don’t recall the exact dosages all I can say is it took my son 2 weeks to get titrated up to 150 mg twice a day in the beginning and he was in the hospital at the time. He couldn’t smoke then, but they gave him patches and the little plastic nicotine inhalers when he was in. His doctor said, that with clozapine and nicotine it is better if the levels of each are kept as steady as possible. The reason is (if you haven’t already heard or read about it) is clozapine and nicotine become somewhat chemically intertwined (for lack of a better explanation) what I read was that too much nicotine can lower the effects of the clozapine and too little can increase the effects…based on whatever the smoker’s average is, for my son it is roughly a pack a day maybe a little less…I was told if they were to cut back on smoking with clozapine it was better to do it slowly. I do recall a time when my son got a hold of some cigars and smoked them in addition to his cigarettes without me knowing and his behavior became erratic for a day or so. Maybe you could discuss that with the doctor and also let him know in no uncertain terms that you want him to titrate up to a very definitely therapeutic level for your son. If he is not willing to treat your son how you wish, maybe there is another doctor available to talk to? I sure wish the best for both of you.

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To change doctors, I have to remove him from the ICT program - we worked hard to get him in & I’m not ready to do that yet. If he goes in the hospital one more time, I will be changing.

I read that about the nicotine too, and they’ve been giving him a patch. But, he stopped wearing it - he said he wants that first one out of the hospital to be awesome.

I also read a study that says it’s a chemical in the smoke rather than the nicotine itself. There was a patient who went into the hospital on a nicotine patch. His Clozapine was held steady at his current dosage but the blood levels went up to toxic levels because the nicotine alone wasn’t increasing the speed that he metabolized the Clozapine. So, I think it’s complicated.

The nurse at the outpatient office said that most of their patients smoked, so they’d definitely keep it in mind. I’ll keep reminding them.

And, I guess I’ll have to keep track of whether he’s smoking regular cigarettes or switches to his e-cig.

I’m very hopeful about the Clozapine, but still a little scared it won’t work, or the outpatient doctor won’t increase enough - or fast enough. I guess we do have the advantage of the blood tests though. They measure how much Clozapine is in their blood as well as their white blood cell count?

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Yes, they check both. Then the do an ECG every few months to check their hearts in case of heart damage. The blood work results gets sent to your Dr. and to your pharmacist. I believe this is how they keep an eye on how the nicotine is affecting them as well. We were just told that we were to inform the Dr. if my son cut back or increased his smoking drastically. Hope this helps and that things are going ok with your son coming home today!

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My son gets a standard CBC every month and then he gets his liver enzymes and A1C checked every 6 months. The main reason for the blood test is to watch the white blood cell count and to make sure it isn’t adversely affected. Looking back on my son’s early days on clozapine, I did not know how well it was working until around the 6 month mark, I saw glimpses but I think the big event was when he said " lots of the voices have gone away" I have high hopes for your son @slw and I do agree the nicotine/cigarette thing is very complicated. I hope it works out well in the long term,

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Slw, I hope he continues to improve. My son is still in the hospital and might be coming home next week. He hasn’t gained any insight that I can tell. We’ll see. Take care

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My son doesn’t have any insight either.

He’s not laughing to himself and he talks to me & listens when I talk, plus the case manager at the hospital said they had stopped seeing him have any signs of inner dialog days ago - so I’m hoping the voices & hallucinations are gone for now. They were never constant, but showed up as he would go manic & stop sleeping, or when meds gave out.

Of course, it could come back at any time.

His bad delusion hasn’t reared it’s ugly head. The milder ones, although bizarre enough, are easy to deal with. So, I feel like I can wait those out as long as he gets some sleep.

They had given him his morning meds and it’s not yet time for his nightly meds. I’m already nervous he won’t take them, although I’m not going to try to give him a choice. That’s why I wanted the injection to work so badly.

And, technically, the injection is still in his system - he won’t hit the 28 day mark until next Thursday & this stuff is supposed to have an incredibly long half-life. I’m also worried that it is helping more than I thought.

I’ll just pretend to be calm & hopefully the next couple months will be smooth sailing.

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He took his meds last night and this morning. He said they were part of making him a slave - or something to that effect - but he took them.

He slept good, but he’s not oversleeping. He’s eating well, but he kept saying the hospital food there wasn’t always up to his standards & sometimes, it wasn’t enough, so I’ll watch for that to calm down. He had a bowl of cereal before I got up, then I made him scrambled eggs & toast - he only ate half a piece of toast & about 3/4 of the eggs, so that was encouraging that he doesn’t have an uncontrollable appetite.

Still no signs of hallucinations or voices, but the delusions are all there for the most part. I’m very thankful that none of the ones that upset him are there. I’m sure that’s all to be expected as he’s only been on the med for a week and he’s only at 150 mg/day.

I’ll watch to see if the 75 mg in the morning makes him take a nap. If not, I’ll have to guess that the Trazadone at night is what’s helping him sleep.

So far, so good, but I think I’m going to worry he’ll say no every time I bring out him pills. I’m going to get him to take them one way or another whether it’s guilt or bribery because if he misses them for 2 days in a row, he has to start over from the lowest dosage again.

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I’m hoping and praying that your son continues to take his meds. My son has been on this med for over a year and I still worry every night if this will be the night he refuses. Not worrying as much as I was before though. Everyone is so different on how they react to this med. For my son, he still has delusions, and the voices are still there, just more quiet and I think less negative. He seems to be in on some joke with them. Unfortunately, he will not discuss any of what’s going on inside his head as I believe he thinks that will be a one way ticket back into the hospital. Negative symptoms are somewhat better. I wish you nothing but the best @slw

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My son went up to 200 mg in 2 wks when it was trialed before. It was adjusted up and down due to seizures and then discontinued abruptly due to the low ANC. At this point it wasn’t doing much for him anyhow, or so we thought. When it was stopped suddenly this is when things got to another level for him. All day battles with his delusions, acting them out etc. Cowering at things flying overhead that weren’t there etc. As I write this I’m starting to recollect it all and growing more nervous about the fact they want to start it again but they want to go up real slow and hold at 150 for maybe up to a year. So we are right behind you in starting this. He’s Titrating off of Haldol now first.

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We go see his outpatient doctor on Monday, and his last bloodwork was from last Wed. in the hospital.

I have no idea what she’ll do, but if I had to guess, I’d say she’s going to hold him where he is until we go get fresh bloodwork. I’m kind of OK with that since he’s went back to smoking about the same as he was before. I’m sure that’s going to make a big difference.

For now, he’s sleeping well and not having any delusions that are troubling.

We’ll have to compare notes as we go through the process.

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This drug requires weekly blood draws for a time then every two weeks and if no allergic reaction then monthly as long as they are on the drug. But it does work. My son has been on it for nearly two years and has made really good progress. He only takes 250 mg per day and has been stable at that does though his doctor had stated that they could go as high as 600 mg. Good luck on this journey

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Thanks for the response.

He came out of the hospital on Friday at 150 mg, and has been smoking pretty consistently since. I think I can already see a change, so hopefully, the doctor will increase a little bit to compensate tomorrow.

He scared me in the middle of the day by saying he wasn’t going to take anything anymore. Then, after some discussion, he said he’d take them for me. We compromised - I told him as long as he took the Clozapine on schedule, he could take or not take the rest.

The only other things he’s on right now are Trazadone, which is supposed to be as needed, and Neurontin. He likes the Neurontin, but it doesn’t do all that much for him. I liked the Trileptal as a mood stabilizer better, but I think it’s not recommended with the Clozapine. I’m sure it’ll make him feel better to have some control.

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We saw his outpatient doctor today for his first visit after hospitalization.
He was clearly delusional & fairly vocal about it in her office, so she was concerned because he seemed worse than the last visit. I did let him get a real cup of coffee on the way as a treat, so that was probably a mistake.

I wish she could see him at his worst so she could see that he went so far downhill in the past 3 1/2 weeks & is climbing back up, although the smoking does seem to be making the Clozapine less effective.

We got a long discussion about how dangerous the Clozapine is, how careful we need to be about watching for side effects, and how we’ll have to give this drug more time and for me not to add anything extra. She seemed even more concerned about weight gain and constipation than the white blood cell problem, although that was talked about too. So, I need to lose some weight too, so I’ll use that as an excuse for evening walks.

She did not increase the meds today, but said she’d take him from 150 mg/day to 200 mg/day this Friday after he gets fresh bloodwork, and that he’s probably stay there until she sees him again next time - that’ll be 5 weeks instead of 4 this time because she’ll be on vacation.

I really liked that his old doctor would see him weekly after a med change until he was stable - I don’t like this once a month thing at all, and I really don’t like 5 weeks. If he would also meet with the case manager, that would work well, but he won’t, so we’re kind of stuck for now.

He’s already told me he wasn’t going to take his meds, then he says he’ll take them just because they make me happy.

One minute he’ll say they do nothing anyway, and the next he’ll say they’re meant to take away all his emotions, like a chemical lobotomy.

So, I guess I’m in for a fun few months until everything is adjusted right - if it gets adjusted right, fast enough.

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I do have one very specific question.

I thought that when they do blood work, they check both the white blood cell count & Clozapine levels in the blood.
Is that the case? or am I not remembering correctly?

His doctor is telling me most of the time they will only check for the white blood cell count because some insurances don’t pay to check Clozapine levels.

Because of his smoking, it’s very important to me that they check both.

I know it’s making a difference because he came home Friday & went to sleep that night.
Saturday, he was up before me, but took 2 naps then went to sleep at a normal time.
Sunday, he got up about 9 am, no naps, then didn’t think he’d be able to sleep when he went to bed at 11.
He slept, but he also got up to eat at least once & went outside for awhile because he left the backdoor cracked open. Then, he was up when I went to wake him up at 9 to go to the dr.
I don’t want him to sleep around the clock, but I’m seeing him smoke more & sleep less every day.

I said I could check to see what my insurance would cover, but she said it still wasn’t necessary. Does anyone know the codes they use when they bill both blood tests? That would make it easy for me to check to see if it’s covered, and how much it would be if it’s not.

My insurance paid for them to check to see how much Suboxone was in his blood when he was in that treatment program - it’s to make sure they’re taking the drug & not selling it. If they can pay for something for drug abuse, you’d think they wouldn’t have any problems paying for something like this. And, if they didn’t want to, I’d appeal it & throw a major fight about it since he’s been in the hospital 5X in 10 months.

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They might have been checking blood levels in the hospital, but the longterm bloodwork is only the WBC.

My son has lost a SIGNIFICANT amount of weight since starting Clozapine, I think it is generally weight-neutral.

I do sometimes wish the doctor had taken my son to a higher dose to see if he could get some further improvement on his symptoms. While most of the voices are gone, there is some breakthrough, and delusions continue.

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He’s eating a lot.

Some of it is that he spent a week eating hospital food that he said wasn’t terrible, but wasn’t great either.
The other hospital he goes to is psychiatric only, and he thinks the food there is wonderful - philly cheese steaks, chicken fried steak with gravy, fried chicken, biscuits and gravy. There’s some healthier stuff in there too, but it’s good, southern comfort food for the most part.

Some of it that he has a healthy appetite anyway when he’s not psychotic - if I wasn’t even around him, all I’d have to know is what he ate & how many hours he slept day by day to tell you how he was doing.

And, I’m sure the rest is the meds.

His weight is up a little at 178 lbs, but we’ll manage it. I’ll have to mix in some healthy, filling foods with lots of fiber in with the cereal & peanut butter he’s craving right now. At least he likes soy milk, so that’s a big drop in calories & fat compared to whole cow’s milk.

My son was kind of the opposite of yours- he didn’t gain hardly any weight on the Invega. And, the weight he did gain, he needed. He was probably only about 140 lbs the first time he went in the hospital & that’s about 20 lbs too light for him. 160 is good - 180 isn’t bad - once he hits 200, he’s carrying too much. The Invega would have been awesome if it just worked.

The doctor even mentioned today it must have been doing something because he seemed better last office visit.
He’s not even due for the next shot for 3 more days, and he went into the hospital 2 weeks into the last shot. If it was doing something, it certainly wasn’t much.

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It does take a while to get everything adjusted but I have a good feeling about this protocol for your son or maybe just really high hopes, either way I follow your posts faithfully because I know a real breakthrough (or a few of them) is on the horizon, I pray that I am not wrong,

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