Starting up on Clozapine

hope · June 25, 2017, 3:51pm

Even with mine not ever having made in into a hospital for treatment - I can see the humor in this.

A young woman I worked with attempted suicide years ago. When you work with teenagers for many years, you end up having to deal with about everything. Her parents wanted me to visit her in the mental health unit, to see if I could get her to say what was going on in her life that had triggered the event.

She walked me out after our visit because she was concerned for my safety. She insisted because “some of the people in here, are actually crazy”.

Wendyggent · June 25, 2017, 9:14pm

After trying about 6 different meds, clozapine is the only one that works. At first he disliked the blood tests as he used to faint, but now he goes regularly every 2 weeks. He did at first get dizzy spells as well as sleeping a lot, but now made a great improvement. He has gained a lot of weight, which is one of the draw backs, but he has started to go out to visit a friend or go to the cinema. He is fortunately in very good supported accommodation, as I found it too stressful for both of us to be living together. A few months ago, he said that he no longer wanted me in his life. So, I respected his wish and just kept out of the way. Las t week, he messaged me a couple of times, and I went to visit him, just for an hour. We talked about everything but Schitzophrenia, as he still has no insight, it was good. He seems to have no side effects now, as well.

rosie94 · June 27, 2017, 4:32pm

How long should someone be in a higher care program when starting on clozapine?

slw · June 27, 2017, 5:51pm

What do you mean by higher care program?

In the US, you legally have to get blood tests every week for 6 months, then every 2 weeks for the next 6 months, then monthly for as long as you’re on the drug.

But, I don’t think that’s what you mean.

rosie94 · June 27, 2017, 9:57pm

My son’s psychiatrist and counselor want to put my son on Clozapine but they would like to get him back into a more structured, monitored situation before starting the med change. His sz is very treatment resistant and is compounded by the fact that he keeps relapsing on weed. He does not live at home. He is 22 and has spent the last year in residential programs. However, he is in a sober living program right now and in jeopardy of being dismissed due to relapse. He will then be couch surfing with no financial support with increasing psychosis. So there is a lack of confidence that he will follow up with appointments, medication compliance, lab tests, etc. Therefore, there is reluctance to change his med to clozapine until he agrees to go to a residential care program that he has been in before to start him on the clozapine. I am just trying to get an idea as to how long changes can be seen and risk factors decrease so that he can leave mental health residential program to go back to sober living program. This is hypothetical at this point because right now he refuses to maintain sobriety and so is not willing to return to higher level of care just now.

slw · June 27, 2017, 10:27pm

My son started Clozapine in the hospital. I don’t think it would have worked outside the hospital because we would have had to go up so slow without medical supervision for it to start to work.

He spent 8 days inpatient & went up from 25 mg/day to 150 mg/day.
When he came out, he took his meds (I give them to him) and only had a few smart alek things to say about it.
On his own, he just wouldn’t have taken them.

After he was out of the hospital a week, they moved him up to 200 mg/day, but the next increase won’t be until the next monthly appt, if they increase him then. They’ll just go really slow.

If they don’t take their meds for 2 days in a row, they have to start over at 25 mg/day. They can go up faster, but they still have to start at the bottom.

On the plus side, Clozapine is supposed to also help with substance abuse.

My understanding, and you can read those posts in this thread, is that you see slow improvements for a long time. I think my son is much better, but if he wasn’t somewhere like home where he was given his meds twice a day, I don’t think it would have worked.

I don’t know that the risk factors ever disappear completely. My son’s blood work has came back good each time with very steady levels, but he still has to go to the lab every week or the drugstore won’t fill his script for the next week.

rosie94 · June 28, 2017, 3:25am

Thank you. That gives me some idea of what to expect. I hope that we can get him started soon,

slw · July 1, 2017, 2:28pm

It’s become very consistent & stable here, so unless something changes dramatically, I’ll update this thread once a week.

He’s been on Clozapine for 4 weeks, on 200 mg/day for now and he seems to be tolerating it pretty well. The blood work is pretty much the same every week, his appetite is good but no higher that it is when any antipsychotic is working, sleeping good but not too much.

He is still delusional, but there has been a decrease in how often he talks about them & how many different things he talks about. None of the delusions are troubling to him now. Of course, I’d like them all to go away, but if they don’t, it wouldn’t be a huge deal.

When I give him his meds, he takes them. Sometimes, he’ll give me a little look, but he doesn’t say anything.

All in all, this has been really good.

He’s not going out too much, but he doesn’t seem overly anxious if he rides out with me. He hasn’t been wanting to go into any stores, and I haven’t pushed the idea. He did go in DMV to renew his driver’s license (we picked the main branch at a quiet time, so it took about 30 minutes), and he’s doing OK with going in for labwork (again, I picked a quiet office & a quiet time of the day to go an it’s always the same lady.).

He also met with his new case manager/therapist- a real pretty, young-ish lady that looks and sounds a lot like one of his old case managers that he liked a lot, just younger. He liked her OK, so we’ll gradually get him working with her a little bit.

I think he’s doing well enough that I’ll get him into the dentist soon & he wants to see a plastic surgeon to see if they can give him some laser treatment for a small scar on his face that he’s self-conscious about.

He’s also said maybe he’d like to go fishing or go out & ride the ATV’s on our property out in the country - but he’s not pushing the issue. It’s so hot here now that I may just let some of that rest until the fall, but it’s nice that he mentions doing things every now & then.

He said something funny the other day about the plastic surgeon. I have a habit of saying yes to things, then putting them off until I find the time to do a lot of research. I’m a bit of a procrastinator, but I also like a certain comfort level when I go into things. He told me, “You can’t just say you’re going to do it and let it go. Just talking doesn’t make things happen.” It wasn’t funny in itself, but it was like he had a bright moment of clarity and maturity.

Leiann · July 1, 2017, 3:48pm

That is such great news! So happy that things have stabilized somewhat for both of you! I remember with my son that it was a few months on the clozapine before he started coming into stores with me and now he always does, no matter how busy the store. Flash forward over a year on the meds and though things are pretty much stable here, the delusions continue. Just not as prevalent. He is still very angry at his Father for being “a part of the conspiracy”, but it only comes up once in a while, and not as passionate about it. I wonder if they will always carry these delusions with them? I’ve heard that many do, that it has been a fixed memory instead of a delusion. Either way, I am thrilled that there is some peace in your home again. You are a great Mom!

Catherine · July 1, 2017, 5:22pm

So very happy to hear this news. Onward and upward.

hope · July 1, 2017, 7:55pm

This is such good news!

Mom2 · July 3, 2017, 12:44am

That is so wonderful to hear. It sounds like his negative symptoms might be decreasing. Breathe it in real deep.

Jane57 · July 3, 2017, 8:07am

So good to hear this slw.

slw · July 3, 2017, 1:38pm

Just when I thought the delusions might be dropping a little, I think I’m seeing a slight tick upward, although it’s not nearly as bad as it was.

You guys warned me there would be some ups & downs, so I’m trying to feel prepared. And, since they want to wait so long between dosage increases that I think it would be normal too. He’s been on the 200 mg for 2 1/2 weeks now & hasn’t complained anymore about dizzy spells and no other side effects, so he looks like he’s adjusting nicely.

Because the dr is taking vacation later this month, I won’t know if they’ll bump his dosage up again until July 25th, but at least I’m feeling pretty good about him staying out of the hospital for now. But, he was averaging 45 days out of the hospital before he would go totally manic & have to go back in. We’re at 23 days with no sign of mania, so knock on wood that it continues.

Leiann · July 3, 2017, 4:19pm

Oh ya, many ups and downs. I think two months into it, I was thinking that maybe the meds weren’t working anymore. In the end, I equated it to a roller coaster ride. When they are in psychosis there are no ups and you spend most of your time in the lowest part of the ride. As the drug is in their system longer and longer, the dips on the ride become less deep and they start going up quicker. At this point now, in comparison, those dips are so minor. Does that make sense?
The hard part is that each time they seem to go backwards, it’s so difficult to not panic, or at the very least become disheartened. I still do it. I also noticed that at the year mark, it seemed to me that my son’s brain actually was healing itself, on top of the meds continuing to work.
That does seem like a long time between increases though.

slw · July 3, 2017, 5:31pm

It does to me too, but they like to go slow, and he’s doing well enough that I can be OK with that.
I did start letting him have some regular coffee, so maybe it’s that too.

Although, I read that caffeine can increase the amount of Clozapine in the blood for most people & decrease it for a few, so it’s hard to say what it’s doing.

He’s sleeping well & he hasn’t complained about going to the labs every week since we stop afterwards at Starbucks - or rather I stop. He doesn’t want to go in.

Tomorrow is his birthday, so I went out to get a few things. I got him 15 or so mylar helium balloons at Dollar Tree that I thought he’d tell me were silly, but he said it’s not a party without balloons & took them all into his room. That was a nice surprise.

The menu for tomorrow, at his request, is going to be BBQ ribs, asian chicken wings (like buffalo wings, but with asian sweet chili sauce), collard greens, cake & sourcream/blueberry pie. I’ll make some garlic potato wedges or something else so we have another vegetable, but I’ll be cutting up greens for an hour or so in a little while. At least the pie & cake were ready made.

Hopefully, it’s a good day. We’ll keep it as low key as possible.

Jane57 · July 4, 2017, 12:22pm

Hope your son has a wonderful birthday , happy 4th July also ,

slw · July 6, 2017, 12:08am

My son just started questioning 3 of his delusions.

And, now I’m scared of what’s going to happen now that the bottom’s fell out of these grandiose delusions.

He figured out he must not have influenced someone’s death because the person died when he was still a baby.
That must mean he didn’t meet another famous person or star on his talk show.
And, that must mean he doesn’t have children running around.

So, he says he hasn’t achieved anything with his life.
I asked him what he’d like to achieve & he said there was nothing he could help me with.

I’m scared he’ll tip out of mania into a deep depression & that could be even worse - because things can always be worse.

Ideas? or thoughts?

(I posted this on the wrong thread earlier, so moving it. He seems OK for now, but he’s also went back to saying he has a faint memory that confirms his #2 delusion. I have a friend who assures me that his mind will only release as much as he can handle at one time, so hopefully they’re right and I’m overreacting like I normally do. I think I’m so traumatized by it all myself that any sudden change puts me on high alert.)

Leiann · July 6, 2017, 12:43am

I totally get that fear. I equate it with PTSD. I only have my own experience to share with you. My son did have things slowly start to dawn on him too, and would come out in bits at a time. Some of those things, I think he believes again and some he just let go of. He scared me a couple of times, looking like he was going into a deep depression when he came out and said to me that he knew that he was never going to get married or have kids because of “how he is”. This was at the same time as some of the delusions were coming to light for him. I found that he doesn’t seem to be able to hold on to these thoughts (or most any thoughts) for long though, which I think saves him. The sadness doesn’t last. He still has lots of delusions that he still believes to be true. I know everyone is different, and this may not be the same for your son, just wanted to share our experience in case it helps at all.

slw · July 6, 2017, 12:58am

Thanks @Leiann - it helps a lot because even though it’s been 12 years going on 13 that we’ve been dealing with this, it seems to constantly evolve. And, as soon as I get comfortable with how something is, it changes, so I never know what to expect.

Hopefully, he will follow your son’s pattern. So, I’ll try to not worry so much & just go with it.

I think it’s a good sign though, as long as it goes slowly and he doesn’t get overwhelmed with a sudden flood of reality.

There was a funny part though. I told him that if his memories were more like dreams, and they weren’t true, it was good if he figured that out because that kind of thing could hold him back from achieving real things in life - and that he had plenty of time to do anything he wanted in life.

He said, how could that hold me back? I told him it might be hard to keep a job or go to school if he was telling people all that stuff and it wasn’t true - people would think he was lying to them. (Because, haven’t we all, in hindsight, known some people who like to tell some whoppers?) He replied, without a pause, - “Like I’d go to work & tell people all that stuff.”.

This, after he’s had an urge to tell everyone who would listen & some who wouldn’t about all this stuff. He would start yelling it sometimes if I was on the phone. He didn’t want to tell the hospital staff, but he couldn’t help himself. Even the lady at DMV got a dose of it when he had to renew his driver’s license.