Family and Caregiver Schizophrenia Discussion Forum

Taking Another Look at Clozapine

How long on Clozapine? It can take weeks or more to start showing improvement. And I have been told that typically 7-12 months for full efficacy, and some that report continued improvement even years later. I don’t have experience with Abilify. There is a new medical study on the long-term effectiveness of second-generation anti-psychotics. It largely excludes long-term injectables and the study explains the challenges in comparing what I will call “apples to apples”. But I found it interesting.
https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20632

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I completely understand…it is hard to wait. Can you contact the doctor by phone or email in the meantime? Perhaps he/she would be willing to up the dose before you next meet. 250 mg is a fairly low dose given the “average”. If you have to wait for the appointment, and even as you are hopeful and awaiting eventual good results, we have to remember that this is a journey, not a marathon! I find it helpful to look back to where we once were, to be thankful that today is a better day.

My suggestion is that you make sure the doctor has a clozapine level check done with his next bloodwork. When checked, my son’s level was low enough at 250mg / day to suggest an increase to 300mg could be beneficial. Average doses can range much higher than what your son currently takes, and it should be guided by the blood level.

Thank you for the advice. He has been on clozapine for 5 months now. I really am trying to be patient with everything concerning my son’s mental illness. I dont think any parent wants their child or loved one on more and more meds, but at the same time he’s not functioning all that well. The bar seems to so low now. I am trying to think of the positives…he is not in the hospital (last year at this time he was), he is not angry. He is showering regularly, although he doesn’t necessarily use soap, he is med compliant (he wasn’t last year), sometimes he makes sense. I think i will text the doctor and see what he does. Thanks everybody.

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That really does sound like improvement. Having similar experience, I know those things may not seem like much to others, but they are significant changes!

The years before my son was started on clozapine, he had multiple hospital stays each year - he was a “frequent flyer”. He had a brief hospitalization about 1 year after he started clozapine, and none since.

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After 4 drug failures, my daughter tried Clozapine and had great results after 1 month- no paranoia, no voices- BUT, now dealing with the negative symptoms, massive eating, lethargy, cognitive issues, reverse sleep cycle… She started a new therapy program, so hoping we learn something on this journey.

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What is low ANC?

Thanks

Terry
M

Only love can be the reason we put up with the unreasonable behaviors of our loved ones. No one would do this for money or fame. It is too much of a PIA and too unpredictable as to the future.

Stay strong

:heart:

Believe it or not the negative symptoms do improve or so they did with my son but it takes a long time a lot of patience. Initially he gained 100 pounds but after a few years he started exercising by walking daily and he eats healthier and has lost 45 so far. He still doesn’t have a whole lot of self motivation but he always wants to do things with me if I ask him to come along. He has his own personal hobbies but really prefers to be alone than with others. If I ask him if he is happy he will say “of course I am”. Just knowing he is not having the voices and delusions is the best part of the clozapine in my opinion. Best of luck on your journey.

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ANC is absolute neurophil count

My grandson was started on Clozapine in the hospital. They were able to bring him up quickly so withing 2 weeks he was at 300mg he went up to 500mg but now back down to 350mg. Its been great for him. He works fulltime now and has madea few friends

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Perhaps the new therapy will be helpful. You might want to read a book titled “Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine”. It is available on Amazon. One of the chapters discusses adjunct medications that can be used for various reasons, which might be helpful.

My son’s negative symptoms are better now too - he’s two years on Clozapine now.

He smiles, laughs, makes jokes, is starting to be a little social.
He still has some mild delusions, but they don’t seem to bother him too much. He does catastrophize some, but that’s his personality. Like, every little ache or pain, he worries it’s cancer.

His hygiene is better, but not perfect. He shaves almost too much (shaves his head and face), but sometimes I have to remind him to take a shower. He’s getting better about showers and clean clothes if he’s going out. I think he actually showers with soap now without me telling him he should do that. And, he got worried the other day because he thought he forgot to use deodorant.

The fatigue left him quickly. He did gain a lot of weight, but it’s started to drop now. Last weigh in, he had lost 18 lbs without really trying. He’s slightly more active now, but not a lot. We have tried to reduce the amount of junk we’re eating as a family, but he’s free to eat whatever he wants that he has access to.

He’s more comfortable than he was before if we go to a store. If it’s not busy, he can ask a few questions if he needs to. He still doesn’t like the act of paying for things, so I usually do that for him. He can tolerate his father a little better, and actually comes in to talk to him now & then. It’s still rare but better.

Lots of tiny, gradual progress very little slips. It seems very sustainable.

His dosage went from 0 to 150 mg in the hospital. Then the doctor put him up to 200 mg in the next month. He stayed there for about a year, maybe a little more, then started having some breakthrough symptoms and they increased it to 300 mg, which seems like it might be the right place.

He also takes 20 mg of Prozac for depression, which works like a charm for him, and 300 mg of gabapentin up to 3X/day for nerves/anxiety. He’s supposed to take 100 mg of clozapine in the morning and 200 mg at night, but he prefers to just take it all at night. I give it to him early if he wants to go to his clubhouse program the next day.

All of his blood tests have came back fine. Sometimes, they say the clozapine levels are a little low, but I think that’s because he gets them done late in the afternoon and he doesn’t like to split the doses.

I’m happy to hear so many are doing so well on this med. It’s a good one.

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I know this is an old post but am hoping for an update on how he did weaning off of Clozapine, and the result of being off the med? So hoping it went well for him when he has done so well on it.

Well he is not off. Down from 500mg to 350 and still doing well

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i agree 100%. Wished we had started with this first instead of the slew of others that came before!