Starting up on Clozapine


It took a long while but I find that getting my son in the habit of having the same amount of coffee or caffeine and cigarettes daily was the best recipe. Today he has one over sized mug of coffee in the morning and one Pepsi in the evening…over time I’ve got him down to 24 packs of cigarettes per month. Less than a pack a day. When he was first diagnosed he could put away 3 or 4 pots of coffee a day and or a case of pop and as much as 3 packs of cigarettes a day…he got none of that from me unless he stole something from but he would run off and panhandle and even smoke dirty cigarette butts off the ground, ugh-so glad those days are gone…sorry memory trigger… anyway…slow and steady for everything is best…I think… routine and habit… sounds like you’re making good progress though.


Slw and Catherine, I get the impression that your sons are not battling with mental health and substance abuse, which is a good thing. If they are struggling with substance abuse, how is it interacting with Clozapine? Just curious. My son is back and forth with marijuana but he is on Invega Sustenna.


@treece29 - my son is dual diagnosis.

He wants to drink - I’ve watered down his alcohol until there’s just a trace of flavor. Luckily, he likes vodka. He doesn’t say anything about it being weaker.
If he wants wine, he can have a glass - that’s got some health values so as long as he’s not drinking an entire bottle.
However, it’s better than when he was on the Invega Sustenna or before.
Then, he craved it - now, it’s more like he enjoys a drink.

As far as marijuana goes, he knows it’s not always good for him and can make his psychosis worse, so he will only have a small amount if he’s around it. I’ve got that pretty well controlled right now.

His drug of choice is opiates. He has no access, but is looking forward to some dental work thinking he might get some. If he could get a steady supply, whether or not his mental illness was under control, he’d be back in addiction territory - whether it was pills or straight-up heroin. About a year ago, he ended 4 or 5 years of Suboxone therapy by quitting it cold turkey - he was already spiraling downward, but that was kind of the last straw for him. Within a week, he was in the hospital. He didn’t have any physical issues, but he hadn’t slept for over a week.


Things are still pretty much the same day by day here.

We did pass a several places with help wanted or now hiring signs up & he said he should apply to a couple places that appealed to him. It shows the thoughts are there even if he has a hard time even going into a store for more than a few minutes right now.

The delusional thoughts he has are fairly stable - I don’t see them increasing any more. I did tell his treatment team - they talked to the doctor & she said she’d decide whether or not to go up again when she sees him again in a little over a week.

So, not much to report which is a very good thing. The temps are cooling down here so hopefully we’ll both start walking in the evenings soon to get some exercise. That’s the big thing we need to work on now.


Sounding good, it seems to have levelled out and is stable. Its good that your son at least mentions the signs about work, shows its it his mind as you say .


@slw, @Catherine, @hope

My son has decided to stop taking his Clozapine. Buckle up.


Why did he decide that?

And, is he stopping cold turkey or tapering down? Is it safe to just stop?

I guess this is exactly why the doctor doesn’t want to raise my son’s dosage. Right now, he’s much improved, but still a little delusional and very socially anxious, but he says he doesn’t even notice he’s taking it. He has gained some weight, but I’m making sure he has healthy food that he will eat in addition to the Captain Crunch he’s suddenly craving.


I hear you, the ride is about to start up.


I can only guess - I think his symptoms havent been controlled enough, and his delusions and voices are forcing him on this path. The doctor hasn’t been willing to increase his dosage.

I think he is stopping cold turkey. I advised him not to do that.


Saphris Sublingual Tablet


Early on out of the hospital (only a couple months ago), my son said something about not taking them because they didn’t do anything.

I got him that time by implying I wouldn’t get him any cigarettes. That did the trick that time and he hasn’t brought it up again - although I do get varying responses to taking them.

From, no comment at all - to jokes about give me my brain pills - to being totally annoyed that he has to be bothered with it all.

Keep us posted about what happens - that could be what he does at any point.


I don’t have anything like cigarettes to use as leverage, other than reducing his allowance, which I will do. But he hasn’t been spending much.


I wish it was as simple as that. But I would then have to be there when he takes it to verify.


I’m really sorry to hear that. As unrealistic as I sound saying this, I hope he will be okay in spite of his decision.


So sorry for you all. We recently started back on that road again, not with Clozapine but with another AP. It’s so heart breaking to see the progress washed away. My thoughts are with you.


We may have gotten thru this okay. My son skipped his meds Thursday night. I spent some time researching withdrawal from clozapine, and see that sudden withdrawal can be pretty difficult. I let my son know that I was quite worried about him suffering with the withdrawal, and:

I told him that I would not confront him about this decision, but that if he decompensates, I would make sure he got admitted to the hospital;

I told him about what I had learned about withdrawal, and that I was very worried about him. I said, if it was his decision to stop his meds, he at least needed to do it the correct way, by tapering off VERY slowly.

I could see on Friday that he was not feeling great. I didn’t discuss it with him at all, but just did my normal stuff. I went back on Saturday, and it looked like he had taking his meds. We went out and did normal things.
I swung by his house this morning (to drop off eclipse glasses, tho he hadn’t expressed interest, and also, it is storming here, so they are probably not necessary) and it looks like he took Saturday and Sunday meds too. Either that, or he is tossing them.

I have decided to just do what I said - not confront him, but only make sure he gets hospitalized if it becomes necessary


Please keep us posted.

I read that if you skip your Clozapine for two days in a row, they have to titrate you up again, so I hope it was just the single day. They also said you could titrate up faster than when you first started, but it still sounded like a pain.

I hope he just decides to keep taking them.


Yeah, I also told him blood work might have to start at square one again.


That’s a big one too. My son is about halfway through the weekly tests.
It’ll be nice to get to every two weeks so we can fit something else into his schedule.

Besides the cigarettes, I’ve somewhat implied strongly that he needs to be in treatment for the disability too. I don’t think that’s strictly true, but I think it helps. It at least gives you some doctors to back you up.


How much Clozapine is he on? How long did it take for the Clozapine to work well enough to get him to such high function?