Family and Caregiver Schizophrenia Discussion Forum

My son wants to discontinue Clozapine due to side effects: breathing problems, coughing and choking - need help please!

Hi everyone! Sad day today as my son is experiencing side effects (headaches, breathing problems and choking) to the only medication that has helped him and is adamant about trying a new medication. According to the internet, these are serious side effects and could possible be a sign of overdosing, sigh! We have a doctor’s appointment on 9/8 to discuss titrating and implementing a long acting injectable. I’m super stressed because we all know the nightmare that’s coming our way. He has tried many medications previously - none worked well. He’s currently on 425mg of Clozapine - maybe this is too high. I know that we have to titrate slowly and maybe he won’t experience these side effects on a lower dose? Has anyone experienced these side effects? Is there a medication that can counteract these side effects?

Another question: It seems that the 2nd generation LAI have less EPS side effects than the 1st generation. So, that means there are only 4 medications that he can try: Abilify, Zyprexa, Invega and Risperdone. Looks like with Zyprexa you have to wait 3 hours for observation - not the most ideal and Risperdone is every 2 weeks - also not the most ideal. So, there are 2 to choose from, sigh! Does anyone have any preference over Invega or Abilify.

I hate this equation going on right now, but my son is very stressed with these side effects and I have to support him because they are serious. We are seeing yet another new doctor and you know what a nightmare that can be. So stressed, ugh!

Help please!!!

While you are waiting for someone who is more med-knowledgeable than me to respond. I was wondering if perhaps you should take your son to the ER as breathing problems and choking are dangerous.

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My son has been on clozapine 450 mg fir 6 yrs. now he’s convinced he has Akathisia despite lack of medical support and has decreased med o his own and says he’s done with drs poisoning him with neuroleptic. I’m terrified.He is manic super skinny and obsessed with researching every med and medical symptom. I believe he could be having EPS symptoms but going off meds willing only make things worse. He says he cannot work anymore due to pain so he is applying g for disability but I doubt they’ll grant it.

Yes, we might just end up there, waiting for the doctor to call back. Thank you!

Oh man! I’m so sorry, hang in there! Get a lawyer to help you with disability. They get paid only if the case is approved and it’s a very small amount - look into it, it worked for us! He has the diagnose for it, just need to build a good case which the lawyer did for my son. I’m so scared as well! He’s been so good and we tried everything else that was no where near as effective, sigh! At least he knows that he needs meds, but if he becomes unstable, his insight is shot and we’re at square one - scary square one! Sending strength Xo :heart:

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@skyler.hayden I’ve heard of some people being prescribed both Invega and Abilify. I Vega can also help stabilize mood and just needs 1 week of pills. I’m not as familiar with Abilify.

How are things going for your son?

Thanks for responding. I’m working with his brand new case manager to talk him into staying on the Clozapine - prayers needed!

There’s also Vraylar and Rexulti - both relatively new with no generic option yet and like Abilify, used for depression/bipolar/schizophrenia.

My husband has been on Vraylar since January. Seems to be working better for him in terms of psychotic symptoms than Abilify but he is struggling more with weight gain than he did on Abilify. No other side effects that we are aware of.

I’m so sorry about your son and the clozapine plus the new doctor. That is a lot.

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My son (schizoaffective disorder ) is on Abilify pills 25mg , he still has no insight , still isolated , not working ,still has paranoia , responds to stimuli from time to time , paces a lot , gets agitated very quickly , delusional at times , He complains a lot about his health , always believing that something is wrong with him , for example he said to me today ,’’ i dont feel good , my heart has shrunk and other parts of my body’’ Having said all that i do get glimpses of my son back , he tells me he loves me every day , he cooks for himself from time to time and has good days and bad days and its kept him out of hospital . He had one break at age 19 and that was 3 years ago .

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Oh, today I found out that the drooling is caused by Clozapine producing too much saliva and it’s a very common side effect. There is a simple solution that he puts under his tongue that solves this problem. So many doctor’s, obviously my son’t included are not educated on Clozapine and I had to reach out to the CURESZ Foundation for answers! I think he’s going to be staying on Clozapine and I’m beyond thrilled!

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It’s just SO much for us! I have good news: Oh, today I found out that the drooling is caused by Clozapine producing too much saliva and it’s a very common side effect. There is a simple solution that he puts under his tongue that solves this problem. So many doctor’s, obviously my son’t included are not educated on Clozapine and I had to reach out to the CURESZ Foundation for answers! I think he’s going to be staying on Clozapine and I’m beyond thrilled!

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My son has been on clozapine successfully for 10+ years and he has never had those side effects. While I know every patient is very different. I would want a regular doctor to check my son out and rule out any regular physical ailments that could be causing these symptoms. Sudden onset allergies or environmental asthma, panic attacks generalized stress, reactions to foods or caffeine or cigarettes if he smokes.

After all of these years with my son on this medicine I learned early on that he had to be very “steady and regular” in his daily routine for the medicine to work the best. Same amount of caffeine, cigarettes, sleep, regular meals, etc…as well as a very calm and stable and predictable environment.

It took the better part of 6 months to almost a year for my son and I to see the full benefits of this medication which I consider to be my son’s salvation. He started out at about 400 a day but over these years he has been able to reduce to 300 and does just as well. He is very stable with no persistent delusions or voices whatsoever.

I recommend seeing a family doctor and getting a check up just to rule out anything physical and to also consider if he is not stable yet that sometimes “bad feelings” themselves are sometimes a form of delusion.

Early on my son would tell me his stomach hurt because he drank bleach. I knew this wasn’t true but I still had to take him to get him checked and a doctor say that had he actually drank bleach he would have much worse symptoms than a stomach ache. Also my son had to take Zoloft for the first couple of years in addition to his clozapine because his pdoc thought he may have an underlying combination of depression and anxiety. After a couple of years he seemed different more like himself and happier and the doc dropped the Zoloft. He also takes Cogentin for the side effect of drooling and helps.

I’d hate to see anybody miss out on the long term good effects of a complicated but highly effective medication because of possibly misinterpreting certain symptoms as side effects.

I hope everything improves for your son and that you find the answers you need.

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Oh Catherine, Thank you so much! I reached out to the CURESZ Foundation, (which is an absolutely amazing resource https://curesz.org/ - I hope that you are familiar with them) and Bethany, the founder forwarded my concerns to the Clinical Professor of Psychology at San Diego State University and also the author of a 300 comprehensive Clozapine handbook published through Cambridge University Press for psychiatrists and he responded stating that drooling is a very common side effect of Clozapine. He gave me the antidote, which is a simple solution dropped under the tongue daily which I forwarded to his doctor. I’m just horrified that he has been complaining about these side effects for quite some time with 2 different psychiatrists that couldn’t figure this out. I’m so upset that my son almost discontinued a life saving medication for a common side effect that is easily managed. I can forward you the emails from the doctor if you would like, just send me your email as I’m not savvy with the cut and paste on this site yet. I’m so glad that I reached out to the CURESZ Foundation and will never hesitate with any future questions, they are GOLD! My son hates the doctor office and it has been very difficult to get him in for follow up’s - I know that we have to improve on this. He takes Cogentin daily, but that hasn’t helped with the drooling at all. He’s been on Clozapine for 1.6 years and I still see improvements to this day. I know how this story will unfold if he has to discontinue Clozapine and it’s not pretty. I hope we are here in 10 years telling the same story, congratulations! Intresting that he was able to lower the dose over the years and does just as well. I’m so happy that tears are streaming down my face as I type this. This is quite the emotional journey and my son’s story almost took a turn for the worse and it was so preventable. I will never stop researching and advocate as proven time after time to be the most effective, but this one was almost too late, sigh! Have an awesome Saturday, Jen :heart:

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I think that I forgot to tag you on my comment below, so I’m doing it now. I’ll figure this all out one day, lol!

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As Hope mentioned, trouble breathing can be pretty serious and might warrant a trip to the ER… and not to be ‘that guy’, but let’s not forget about Covid…
I fully appreciated the link you posted Skyler. Thank you for your tireless research and outreach! You sharing has been valuable for me.
My understanding is as yours is, that second generation AP meds tend to have fewer or more mild side effects, which I have always (obviously) tended to advocate for. However, I agree with you, having found clozapine to be effective that’s a big win and if it works it works I’d stick with it and adjust levels accordingly. My ex paranoid sz managed quite well from a younger age in clozapine (full insight) well into our thirties. As long as he was taking it… There was some weight gain later when he became more consistent with it, but he was able to stay active and finally finished getting a work license he’d been working on for 15 yrs… Hopefully things go well at your son’s appointment and things are going well at the moment and until then…

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My son started out with a much higher dose of Clozapine and also experienced the choking, coughing, & gasping so significantly that the residential home he was living in recommended a sleep study and they advised him to get a device for sleep apnea. He also drooled so much at night that his pillow was soaked. He was prescribed the drops to help check that. After he returned home to live, I asked his doctor if he could titrate down. He now takes 200mg. at night only and does not have nearly as much difficulty breathing. Drooling has stopped also. I bought a bed/mattress that can be elevated as needed and I put a firm pillow under him to sleep on nightly. Occasionally, he coughs some after first falling asleep, but not nearly as bad as when he was on the higher dose. The lower dose does not seem to be any less effective in helping combat the symptoms of schizophrenia. Clozapine is the only medication that has helped and he tried every medicine I know of over the last seven years. In fact, he’s been good now for the past year. It truly was a game changer for us. He’s a heavy smoker and that keeps me worried, but we are working through this and I stay hopeful that he can continue to progress on the 200 mg. dose. Hope your son can have success as well.

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My brother takes Clozapine 350mg, last visit the doctor wanted to increase the dosage to 400, but my mom asked him if there’s anything else we can do rather than increasing, so the doctor increased his Zyprexa dose to 20mg, hope it’s work with him😕 tell your doctor about taking both meds they might work together.

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Thank you Wisdom! Every symptom he is having is due to the drooling, so we will get this straightened out with the drops on Tuesday when he sees his new psych. I wrote them a letter with the back story and they were thankful, thank God! We’re off to a good start! I will do everything in my power to keep him on Clozapine as I know it’s the only medication that works for him. My son hasn’t gained any weight and he was huge on all other anti-psychotics 15 years on the work licensy, what an accomplishment! yep, we good for now and I have a good feeling about his future. Xo :heart:

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Yes, my son’s pillow is soaked as well! I’m so glad the the drops helped, I’m really counting on them to work! yes, elevation and a firm pillow are great ideas. Clozapine has been a game changer as well - he tried every. single. medication with no improvement prior. My son is a heavy smoker as well and on his GeneSight it states that he is a slower metabolizer if he smokes - so I always point this out to his psychiatrists. I will do everything in my power, and I’m pretty relentless, to keep him on this miracle drug! Thank you takingachance and happy Sunday! :heart:

Interesting, I will definitely talk with the doctors about this and keep this in mind. Happy Sunday :heart: