Greetings, I have not posted in awhile but continue to follow various discussions. I want to take this time to sing the praises of Clozaril. (No, I have no financial connection with its maker). We went through two years of hell on earth with our daughter when she developed scizophrenia at 17 years old. She went through Risperadol, Abilify, Invega, and one other. None of them allowed her to live a life where she could enjoy books, movies, tv, outdoor activities etc. and not have suicidal thoughts and attempts. She has been on Clozaril for a year and a half now and goes to University and has redeveloped her interests. As a side effect she no longer has suicidal thoughts, and can travel independently, and drive again. The monthly blood tests are not fun, but she is happy and we are over the moon. Is she 100 percent symptom free? No, she still needs support when she gets anxious, and can get fixated on something. Yet most importantly she actually has quality of life. I hesitate to say there is any such thing as a miracle drug, but this sure comes close.
I couldn’t agree with you more! My son has been on it for 10+ years best results of any drug ever tried and he tried them all. I am so happy for you and your daughter!
Didn’t work for my son…still looking for something else
My daughter has been on clozaril for 4 years and her quality of life has vastly improved. She too had been through multiple antipsychotics that did not work. It was 3 years of hell before we started her on clozaril (she became psychotic at age 14). It has been a miracle drug for her.
My son aged 27 has not quite completed the titration stage and improvements are already very evident. He’s been unwell since 2013, diagnosed 2015, and was sectioned just prior to diagnosis and again earlier this year. He has been up and down since 2015. Lots of meds have been tried but none worked like Clozapine seems to be doing. He says voices are now so far away he can hardly hear them, Very hopeful at the moment
What kind of side effects are you seeing on this one?
Clozapine is becoming (slowly) a game changer for my son, he has finished Titration but may have incremental increases over time. He has room for this as his latest blood tests are all good - green. And he just had a plasma test which showed him within range with room for increasing his dose if needed. he is up to 400mg per day now.
The past few weeks he is more settled, actually sitting down stairs watching movies with me. Something he has not done in 3 years since he started to get sick with his schizophrenia. He laughs and hides his face under his hoodie at times still. Was doing it tonight. But he can hold eye contact and does ask me a few questions sometimes. Such as if I want a cup of tea. Or whats for dinner. It may sound nothing to many but to those whose loved ones struggle with SZ these are major steps.
He like many here and elsewhere has been through sheer hell! But now day by day is calmer. I found also routine is becoming more and more important to him. Such as needing dinner at the same time each night. And then after his night meds he is usually asleep within an hour and nothing can get in the way of that.
He tried all kinds of meds before this none of them worked really. Abilify, risperidone, and a few others whos names I cant recall. He was treatment resistant. Although with Risperidone it did have some affect enough for me to get him of section and fly him back to the UK to live with me. But then he started to slide and the voices were returning. So it was decided to go Clozapine. Best thing so far he has had! And its only around 2 and half months since he started this treatment.
I am slowly being converted to the positive benefits of Clozapine. We are lucky as in the UK in my area the crises and interverntion teams supporting him have been amazing. He is checked weekly with his bloods, and we have 24 hour access to call the team when they are problems. Its a hard drug in that some of the side effects can be both nasty and scary. But over time these are becoming less.
I know it cant work for everyone but I think it is worth a try for sure especially if other meds have failed. Its great to read the success storys here of others on this drug. And for those not I hope they can find what works for them and there loved one.
My wife was put on it 5 or 6 years ago, at the time they said it was the last hope (she had been on haliperadol and risperadol previously, and probably others I have forgotten about). She has treatment-resistant schizophrenia, so this was the last chance of seeing come improvement.
I can honestly say that barring a few moments of clarity (soon after she started taking it), there was no real improvement. Overall, I think all it did was mask the worse effects of her illness, infact earlier this year she had to come off it when her blood results came back red (something that never happens, the clozopine nurse told me!), within a week of that, she was sectioned for her own safety. You could argue that yes it was working as it kept a lid on her psycotic thoughts, and as soon as that was removed, they came pouring out, maybe that’s true but I guess I expected more.
They won’t put her back on clozopine now because of the red blood test results (we use a ‘traffic light’ system in the UK: green is good, amber take bloods again, red stop immediately) - there is a real concern for her physical health.
Glad it worked for your daughter though, maybe being young when she started taking it helped?
Those small improvements you are seeing are everything! I remember those early days well, when you finally got a glimpse of your “real” loved one. Your story sounds very similar to mine with my son. For us, we are at about 3 1\2 years on clozaril and I still see improvements. My son went from totally psychotic back then, to now laughing with me, making jokes, going on errands etc. He still has many symptoms such as isolating from everyone but his immediate family, poor hygiene at times, obsessing about minor things but I remember that it’s not a cure (at least for him). But, now he no longer is yelling all day at people only he can hear. He has peace most of the time. He can eat and sleep in a more normal way. With no relief with other meds or treatments, compared to life for them before Clozaril, I will take this any day. I wish you and you son continued improvement.