Who here is on Clozaril and what are your opinions of it? Is it the cure all a lot of people hail it as? What are your experiences with it? I am being put on it soon, and would like some feedback.
Don’t do it.
Just don’t. Seriously. It was a last resort drug for me in 2001 when it was an actual last resort. There are other options now. Clozaril will kick your ass big time. It’s sedating. I slept 16 hours a day for the entire 10 years I took it. I drooled so much at night I soaked through a towel every night. Even when you’re awake your brain is 1000 miles away. I gained 120 pounds and had my entire metabolism jacked up. The bloodwork becomes a HUGE inconvenience. It’s just a nightmare to deal with when there are now other options. I was viciously psychotic on it but I was too dulled down to communicate anything. I waited for new drugs to be released which took me 10 years. I have heard others lured to Clozaril with the promise of not having voices yet I haven’t heard anyone experience the benefit. It just kicks things back in your brain and you are a zombie.
I put on70 pounds with it. You have to be very careful with it.
Clozaril is the only antipsychotic that ever did anything for me, in my experience the side effects were much less than most of the other drugs. It’s not miraculous but it has kept me out of the hospital. It tends to work for non-responders to the other drugs which was me.
Jesusfuck dude. Are you telling me facts or opinions? Now you’ve got me wondering. What you said gives me reason for pause.
Cloziril is the only anitpsychotic that has worked for me. Yeah, I sleep a lot and I’m groggy most of the day, and the blood work is a drag but, it’s nothing compared to zyprexa which I’ve been on before. I’m talking with my doctor to add latuda so I can have a lower dose of cloziril so I have less side effects while I’m on it. It is a last resort drug though.
These are my two cents. I also feel like I’m lucky because all I’ve read of cloziril are horror stories. Hope the best for you if you do end up taking it!
Clozapine has done well for me. It is the only med that really worked for my symptoms. I don’t hear voices like I used to and there are no racing thoughts like before.
I’m telling you my experience. There is a lot more too. Even the doctors will tell you the side effects are more pronounced on Clozaril than most other drugs. That being said, your goal is to find a drug that works. Clozaril is a last resort drug for a reason. There must be people who can tolerate it and find it effective, but it will most likely hit you hard regardless of any benefits you get. I would tread very lightly and consider all other alternatives before you commit to it. It’s not easy to manage at all.
Thanks for the reply @nodrugs. I am weighing this heavily, and I do not take this decision lightly. My pdoc was supposed to call me with more info, but that didn’t happen. You know how doctors are.
Yeah. When I took it I had been cycling on and off things for a while - 8 things in less than 3 years. I was in a position where I needed something and Clozaril was the only other atypical I could take - I was also blacked out from NMS at the time which is another story, so I didn’t get to ask what I was being put on. Typicals are not an option for me due to the side effects. I know of several drugs that have come on the market since I discontinued Clozaril.
It is a very intense drug. Even if you just give it a try it can be a huge drag to get off of it. It’s not an easy one to titrate, especially because of the blood work, you have to be monitored super carefully. I knew someone who had the cardiomyopathy and had to be life flighted. You have to watch it and really commit - which is why if there are other options I’d try them first.
There is also an issue with increased risk of NMS if you skip doses for just a couple of days. So trying it is more of a commitment than most drugs. I know there are people who love it, but I also know people who feel they were robbed of the time they were on it. My friend’s partner said “Hey, you’re back” when he got off of it after a year. So keep exploring and see what’s best for you.
Daggone @nodrugs. The NMS thing is probably the most disconcerting thing in your post. I’ve been through a lot of med changes without NMS, but I’m always worried about getting it. The whole thing about your acquaintance being air lifted is scary too. I think maybe I’ll give Zyprexa a shot first. I need something sedating to quell my always brewing agitation, so I’m considering going the Thorazine route with my pdoc too. Feel free to PM me, I’d like to know more aout your experiences with Clozapine.
I’m forced to say (from observation) that you may be focusing on a special case. Not knocking @nodrugs experience with Cloz at all. Just saying that she may have genetics and/or epigenetics that just don’t fit the profile for Cloz. Others here have used it successfully. If it works, it works. If it doesn’t, there are other alternatives. I would stay as open-minded as possible, even though I definitely understand your fears and frustrations. (Been there; done that.)
Yeah, I’ll be the first to admit that I am a tough case when it comes to drug reactions. I try not to discourage anyone here from taking things because I know many people benefit from things that messed me up. I also have had the experience of not being told the possible side effects for things by doctors. I don’t know if it would have made any difference in my case, but if you have to put something in your body you need to be informed of what can possibly happen once you are doing so.
NMS is extremely, extremely rare. In the case of Clozaril the issue arises if you have issues with compliance. If you take your meds then you should have no increased risk, but it’s something to be aware of before you start something new. Weight gain is very common on Clozaril as is the sedation. I know others who have had the drooling issue. Doctors don’t want to scare us away from taking drugs, but they also need to be more forthcoming with negative outcomes of treatment. It doesn’t mean that we will always refuse, it should mean that we are making informed decisions that will heavily impact our lives. It may scare us away from some things, but in the end we need to know what we’re putting in our bodies. There are so many people who take things willingly because they need relief, yet still suffer a multitude of clinical symptoms and drug side effects. It becomes a lifelong management, on and off different things. If more effort were put towards clinical intervention and stabilization, following by controlled medication discontinuation, I believe our overall outcomes would be more positive. The catch is that it takes actual time for a doctor to do, training doctors properly, and the list goes on. If they can write us a script and send us off their job can be done, yet we still suffer.
I also was severely sedated and drooled a lot, it was a difficult experience for me. When I switched to Risperdal I was much better, but the switch was hard and I ended up in hospital for a few days, before making a good recovery.
Gained the most weight on this med clozaril
Bed wetting and drooling at night
Still troubled by breakthrough symptoms
For me it is certainly no wonder drug as I cannot do paid work and cannot socialise
If I had to say something good about it I would say when I am without breakthrough symptoms this medication makes me more well balanced
It has been a miracle drug for my grandson. He says he is 95% better. The voices and delusional thinking are pretty much gone. He is able to sleep at night. He does drool at night. And he seems to be getting better every day. He is on 300mg.
A “threshold therapeutic” dose. Glad to hear he gets relief at that low level.
It has been over a year now that he has been on Clozapine. No more hospitalizations but has gained over 60 pounds and is now on 400 mg. He says he is hearing voices vety rately anymore usually about once a week but he can ignore them now. He still sleeps a lot and drools. But it is nice to see him geeling better