Family and Caregiver Schizophrenia Discussion Forum

Clozaril isn't helping much

Hello,
My son has been taking Clozapine since late November. I was so excited for him to try it, but I am starting to wonder if it really does much for him. He stills sees and hear scary things daily.

It is so frustrating! He is so cooperative about trying medication, getting the bloodwork and (somewhat) talking to his pdoc.

He is on 250 mg of clozapine, and still taking Thorazine and Haldol. He has tried so many things! I feel like he did better on Geodon, even though it is supposedly weaker.

Sorry to vent. On s positive note, I’m getting my first Moderna shot tomorrow.

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Clozaril works very slowly (like a snail) and it is affected by the amount of nicotine and or caffeine the person takes. (If that is even a factor) My son used both and we had to pick a level so to speak so he ended up with taking 150 mg twice a day and 1 large cup of coffee in the morning and no more than 10-12 cigarettes a day…with that it took about 8+ months and then one day he said “I don’t hear the voices anymore”

-Everyone is different in their response and speed of response but I applaud the ultimate effectiveness of this drug because without it my son would not be as well as he is today. He has been on it since 2009 or 2010 or thereabouts. It took a full year to see the full effects. Still year after year I see something else that’s better…maybe a perception or a way of thinking that seems improved.

Please if you take any advice from a mom with a son that has been on the drug for more than 10 years, be patient. It’s hard but please give it enough time at least a whole year. To help it along try to keep stress for your son extra low. And again if caffeine or nicotine is involved it has to be a stable amount every day. too much makes the clozapine less effective and little increases the strength in the body by a little bit. Somehow those chemicals are intertwined with how the clozapine works. They actually have a somewhat symbiotic relationship.

If those things are not a factor for your son then just make sure he takes the correct dosage every day and that his doctor has him on an effective therapeutic dose. My son was on 150 twice a day for many years and a couple of years ago the doctor tried reducing it to 125 mg twice a day to see if he could tolerate it and he did great so he stays on that now. Make sure to discuss all your findings with your son’s doctor and if that’s not possible write him or her a letter so they have a second perspective on your son’s progress. I am so happy to hear your son is compliant because that is half the battle…sounds like the pdoc may need to make some tweaks on the dosage. I wish you and your son the very best.

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To add to your positive note I got my first pfizer shot a couple days ago and the next one will be in April.

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@Catherine , thank you so much for your thoughtful reply. Even more than the encouragement to stick with Clozapine, I am so grateful for your reminder about keeping stress low!
My son came seem okay for blocks of time, and I start thinking that I should push him to do more. That usually backfires, but it is hard to remember. Right now he has very simple jobs taking care of his own pets and sometimes a neighbor’s dog. That is actually enough for him at this point.

He is sticking with Clozapine, and even going up to 300 this week. I am so glad to have found a great Psychiatric Nurse Practitioner, who consults with a Psychiatrist who also seems very experienced.

Got to remember to look at the big picture. We are inching in the right direction.

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You are on the right track! As hard as it is we have to kind of let our kids lead the way. When I see the beginning signs of stress on my son’s face I back way up and go for as much calm and reassurance as possible. It has worked well so far. We can never measure our kids quality of life or progress in life to that of others, they are different and that is okay. I asked my son recently and point blank, “are you happy?” and he looked at me surprised and said “Of course I am! why wouldn’t I be?!” (different people-different perceptions) stay well my friend. :heart: write anytime

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Thank you and best wishes to you and your son!

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