My son has followed a similar time line since being on clozapine for 6 months. I hope he continues to improve. I completely understand what a huge step it is to be in public with his case manager and to go to the zoo with others. Good luck to you and I look forward to hearing how he continues to heal.
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My grandson has three years on Clozapine and it’s been a miracle drug for him. He is now working 2 jobs making friends and wants to move out. He had gained over 100 pounds but has now taken off 75. They did give him metformin for insulin resistance which seemed to help. And he is driving again. It really was a miracle. Getting his first job really helped also.
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Hi Everybody
It is always been so encouraging to read the posts on this site. My son started clozapine outpatient in dec and is now on 200/day total split in 2 doses of 100 mg each. He is improving. Doctor took off his 20mg zyprexa. But he is still on a lot other meds like depakote, haldol, klonopin and invega highest dose of monthly injection. I think as he goes up on clozapine, at some point dr will start lowering invega dosage. My lives in a group home and is doing a lot better. But still is not able to take care of his hygeine, smokes all day, carries a big pitcher of coffee all day etc etc. But I am hopeful for better times ahead. May God bless everybody’s loved ones. Thank you all for all the support.
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Smoking gets rid of clozapine. He can vape but not smoke. My grandson was also on a lot of meds he now takes 350mg clozapine which is a pretty normal dose they go by the level in his blood, and lamictal. Got him off of everything else he lost 75 pounds and he vapes instead of smokes. Life is much better for him he has a social life and fulltome job. Good luck
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Yes, a scary thought if Clozapine stops working or that it would have to be discontinued for medical reasons. I think the hope, in part, is that Clozapine will help our loved ones gain more insight (if they did not already have it), into their need for medication.
My son who’s 35 started on clozapine In January during a hospitalization for psychosis. He was med compliant but got a my card for tbi and started taking high thc products which psychiatrists say blocked haldol injections from working. So still gets haldol injections and oral clozapine. He’s able to go out with us to dinner again and was ok at a family get together.
Doctors have told him no thc or he with get psychotic but we found out he is trying to get his legal mj card back.
My husband and I agree if he does and winds up back in hospital with psychosis we will not take him back to live with us. The hospital will need to put him in an immediate care faculty. Can’t keep going on this merry go round.
Just needed to vent to people who understand.
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I do understand. Sometimes people with SMI who are given the option to be med-compliant (or drug-free in this case) or go to a homeless shelter choose compliance. I have seen this work and have heard testimonies of it eventually working with others. But you have to be willing to follow-through with whichever the person chooses. Then do what you can to keep the door open for future communication and healing in an environment that keeps you safe. This illness can change over time. So can their psychoses. But there are no guarantees.
NAMI just hosted a webinar today on Supporting a Loved One with Psychosis. It gave helpful tips for the family. I understand it will be posted soon on the NAMI.org website under their “Ask the Expert” section.
Clozapine brought my grandson back. He was doing heroin and Meth and pot. He has been clean now for 4 years. Working fulltime making friends it really did wonders for him but it took time to see all the results.
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Sorry can you explain how caping differs from smoking? My son takes 450 mg clozapine but smokes a sick a day sadly
It has something to do with the smoke from cigarettes. Vaping is smokeless.
It’s the tar that blocks the psychiatric meds - not the nicotine. That’s why vaping is better.
There are cases where people go into the hospital as heavy smokers, get put on a nicotine patch, then they have to back down other drugs because their levels spike without the cigarettes.
Two year update.
They’ve upped his dosage to 300 mg/day of clozapine and added prozac for an anti-depressant and continue with gabapentin as an anti-anxiety/mood stabilizer, and he’s doing well.
He’s transitioning away from the intensive case management - it was a little too intense for him. They needed him to interact with the staff for 3-4 hours per week and it was just too much. I guess if he wasn’t living at home and needed transportation & other help, it would have been a better fit.
So, he’ll go to regular case management where he sees someone about once a month unless he has some problems.
However, he has started going to the psychosocial clubhouse they run here and he really likes it. He goes twice a week for about 5 hours a day. They have morning and afternoon groups. Most days, everyone has a chore or two that they choose from a list. He has lunch, goes to the snack room for coffee and chips, has helped them plant a spring vegetable garden, and he plays scrabble with some of the other members.
I always wanted him to do something like that, but never thought he’d manage it.
Things aren’t perfect. He still has a lot of anxiety and some delusions that don’t seem to go away completely, but it’s dramatically better than before he took this drug. Even as good as I thought Zyprexa was when he was on that for years, it didn’t come close to this. I wish they’d have started him on this from the start. I think his old doctor mentioned it once, then changed his mind saying that no one wanted to go get the blood work done so often.
Hope everyone I remember is doing well. I’ll have a look around to see before I leave.
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Thanks for the update @slw. I’m really glad the Clozapine is continuing to make a difference for your son. I remember just how ill he was.
My son has been on Invega Sustenna for a year and a half now. He’s generally at peace, but he still has symptoms and he doesn’t have a life outside our house. I’m really hoping he’ll again try the Clubhouse near us. Last time he tried it, he was too sick and he developed delusions about it.
Thank you for clarifying
I think my son would have developed delusions about it before the Clozapine. The improvement has been slow & steady with only minimal setbacks, so I’m very happy with it.
I think his participation at the clubhouse is helping him more than anything. Of course, the baby steps that his case manager walked him through got him there. He started off by just being able to walk into a Starbucks and get a coffee with her - I’d even order off the mobile app so he wouldn’t have to interact with the counter staff with an order then have to pay.
Recently, he was able to go into the local vape shop and talk to the person working there about a new e-cigarette. It was quick, and I paid because he hates the cash register part - but it was something.
Oh - and, I’ve been sick for the past week. He wanted Chinese, so I told him I’d order it, but he’d have to walk out and meet the delivery person. It was all paid for, but he signed the credit slip and seemed comfortable speaking to her for a minute and taking the food.
Those are such small, small things, but really big in our world.
And … he still will sometimes go a week without a shower if I don’t remind him. But, the other day when I was driving him to the clubhouse, he suddenly remembered he didn’t use deodorant. He had showered, so I told him I thought he’d be OK until we got home and I’d get some travel-sized deodorant for the car for next time.
So, it’s very true that the improvements just keep happening, very slowly, with this drug.
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Nice! I want to suggest my son try a clubhouse, but I feel he will resist. I don’t know how to get him past that resistance - I think it is mostly stigma.
Yes, your son’s little improvements are definitely big. I’m wishing him continued success.
I would feel so much better if my son had any kind of activity, outside our home, that didn’t involve me. The Clubhouse would be so good.
Hopefully someday we’ll get our shot at a true Clozapine trial. We were all set to start it up, but our son refused it after taking just one dose. I was crushed.
At least we still have the Invega injection going. I cant even imagine what life would be like without it. Maybe, over time, the really hard set delusions will fade for both our kids. That would really be something.
My son said no a dozen or more times. The case manager and psychiatrist just kept gently suggesting it and one day he agreed to take a little tour. Then, it took a little longer for him to say he’d go.
I made it very clear that if he tried it a few times and didn’t like it, he didn’t have to keep going. It was all his choice.
The first day, they had a sign language group. He liked that.
They gave him a little job the first day too. I think he handed out spoons and forks for lunch. He seemed to like that.
He did call me to pick him up early, so I was worried he didn’t like it, but he said it was fine - just a lot. He hasn’t called me to get him early since, although it’s always an option.
He also likes the architecture of the building. It has high ceilings, big open doorways, lots of windows - so it doesn’t feel closed in. He likes that you can get up and go outside to smoke whenever you want. If things get to be too much, you can just go outside or sign yourself out for an hour or two. It’s very low pressure.
He likes that he can pick and choose the days that he goes.
When he decided to go, he said it would be like being in the hospital, but just the good parts and not the bad ones. As in, he’d have people to talk to, he could go outside to smoke, they have decent food and then he could come home. I don’t think he’d have been as receptive to going if he hadn’t had some good experiences in the hospital.
He’s been going for a few months now and seems to have settled in. He talks about more people by name now than he used to and everyone (staff and other members) seems very accepting and kind.
I hope it helps him to see that there are a lot of other people with similar problems - some worse off than him, some who’ve recovered a little more.
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I think my son was so far gone in the hospital that he wasn’t able to refuse. Then, he didn’t think to do it.
He’s said a few times maybe he should switch to something else. I point out that I’d hate to see him in and out of the hospital again. A few months ago, he said he guessed he should just stay on what’s working and hasn’t mentioned it again.
In the middle of all that, he had also said that taking the Clozapine was like taking nothing at all. I don’t think it dulls his emotions like the Zyprexa did - that was his big complaint about that one.
It was very sedating to start, and when they increased his dosage, it took about a week for him to adjust again. He did gain some weight, but it’s slowly starting to drop without too much effort on his part. He gained quickly and now he’s losing 2 to 3 lbs a month. The only change we’ve made is that I’m not buying as much junk food and I think he’s slightly more active because he’s going out more.
We (meaning me and the medical staff) have also let him believe that his disability & going to programs like Chester House are dependent on him being consistent with his meds. That’s not exactly true, but it’s helped keep him compliant. He’s doing so good now that I’m hoping compliance will not be an issue going forward.
I hope your son gets a chance to try it one day - and get into a clubhouse program.
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Often think of you and your son . Nice to hear he’s doing well.
Wow two years has flown past . Take care of yourself too.
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