Q: Death and Clozaril: how common?
Hi Moonlight,
I understand your concern.
I went on the link you provided. Rosy's comment was the one I favored although the others painted a grim picture.
I have a different experience: I have a friend, she was a hopeless case, at the bottom of the barrel with her SZ symptoms, totally symptomatic.
She was put on Clozaril, within three days she had no symptoms.
Today she has a Masters degree and works in a professional job.
To top it off, and this could be rare, she didn't gain any weight when she was put on Clozaril, she's actually maintained her weight. In fact, she has a normal weight.
The key to remember is to get your CBC and white blood cells monitored regularly before a problem starts.
Zyprexa, Clozaril and the like cause weight gain leading often to diabetes and this weight gain can cause metabolic syndrome that results in heart problems.
All I know is, I'm on Geodon, there's something funky going on with my heart rate, Geodon can cause a certain heart problem, and I take the Geodon anyway because it's been a miracle drug for me.
I know one other person taking Clozaril who also experienced a miraculous turnaround. You have to do a cost-benefit analysis to decide if the risk of side effects outweighs the benefit of taking the drug, or if taking the Clozaril is worth the risk of death.
Newer drugs have come on the market too: Saphris, Fanapt and Latuda. Latuda has a less risky metabolic profile from what I hear.
I would go to your local public library or a medical research library if your city has one and ask their reference librarian to help you find information about Clozaril and the risk of death. In New York City the New York Academy of Medicine might be a good resource if you live there. I don't know what they'd have in their collection of magazines, it's worth a look.
Also you can go on Medline to research this possibly.
Your local pharmacist will also be able to tell you about the risk of death from Clozaril.
I don't mean to sugar coat this. I don't mean to suggest you should take this lightly. I want you to arm yourself with facts in addition to the 25 user posts on a web site forum. That's only 25 people responding.
I will urge more of our community members here to log in with their experiences with Clozaril. My own personal experience is that I know two people on Clozaril, the woman I mentioned and a guy, whose lives dramatically changed for the better when they went on Clozaril.
I've been accused of being an elitist because most of the people I know who are diagnosed with schizophrenia are working full-time and doing well.
I don't know why this is. I don't know why I have a Masters degree and a professional job and everyone else I know is also doing well. Is it a coincidence? I have no idea why the people I know who take SZ drugs have all recovered to a great degree.
I would say you can't argue with success.
Were I not taking the Geodon, my life would be in the toilet. And like I said I live with the knowledge that my heart rate is funky and Geodon could cause heart problems. Do I flirt with danger? Maybe. I must also fully disclose that I'm skinny.
The bottom line: I wouldn't use 25 users on an Internet forum as the barometer for whether your son should take Clozaril or not. Do the research.
In the interim, I will do my own research and get back to you on the statistics about the frequency of death as a risk of taking Clozaril.
It's your decision in the end: you might feel that even 10 deaths in 250,000 users is 10 deaths too many, or whatever the statistics tell you that you discover about the number of deaths.
It is unforgivable that in today's modern world most of the SZ drugs have unlivable side effects that cause health problems.
Regards,
Christina
Moonlight,
I was on Clozaril for a number of years. It worked really well. I had to stop taking it because it lowered my white blood cell count. This side effect affects 1% of those taking the med. I don't know that stats on any deaths or if anyone died on it.
Talk to your son's pdoc. Tell him your concerns and work with the pdoc and yor son.
Take care. I wish the best for you and your son.
David
Hi moonlight,
A Google search Clozaril deaths gives this info from the personal injury lawyer web site:
3,277 deaths and 4,300 adverse drug events.
Myocarditis or sudden fatal heart attacks are possible on this drug.
Which is why before going on Clozaril a person should be tested to see if he or she has heart problems or a family history of heart problems.
I do not take your worry lightly. The decision is yours about how to continue. I do wish there were a better solution than to take any drug that had side effects. The trade-off for our sanity, as I mentioned in my original response to you yesterday, is often unlivable.
Regards,
Christina
dear moonlight, i have recently lost my beautiful son who lost his life due to clozaril he died from heart failure he was having regular toxicity blood level checks but it was,nt picked up that this drug was slowly damaging his heart he was only on the drug for three months prior to this apart from his mental health he was a fit and physically healthy young man,he was only thirty years old please consider that this drug is potentionally fatal i can never bring my son home and would warn everyone on this drug to make themselves aware of the dangers i would not want another mother to suffer the loss of there child i hope you find another way god bless you and your child angel
Hi....our son died on July 5, 2009, after being on Clozaril for a few months. He was tested once a week for agranulocitosis. He was doing much better on clozaril, when he suffered a sudden cardiac arrest. He had previously experienced two episodes of neuroleptic malignant syndrome which required intensive care treatment, yet was prescribed clozaril as a medication of last resort. We were told that this medication would not cause as many side-effects as other anti-psychotic drugs he had been prescribed, such as Abilify and Prolixin. Unfortunately, this was not the case, and Paul paid the ultimate price. Please know that we feel anyone prescibed Clozaril should be given at the very least an annual EKG to evaluate heart function. Maybe Paul's death could have been prevented. Hope this information helps. Thanks.
hi, my name is jimmy, and i almost died from clozaril related complications, i made it through by the skin of my teeth, and what really irks me is the whole ignorance of the psychiatric hospital system to how dangerous alot of these drugs are, they kept me locked up for a good 7 months after this incident and i was never properly diagnosed for any condition, however, i know what happened, it was either a serious allergic reaction or a heart related problem, i still have to deal with all these assholes from the hospital coming to my house, im so fed up with this shit, people are so ignorant, and yes this is real, clozaril is dangerous, any substance you put in your body can be dangerous, this psychiatrists think theri playing god or something, i barely made it to the hospital alive, i guess i have some willpower in me, not the first time ive brushed with death
Dear All:
My boyfriend has been dealing with his "voices" for over 8 months now. I too want to have him put on Clozaril as I was told by many professionals that it can change his life for the better. I know this may sound horrible, but if he could live 10 years as the way he is vs. 30 years as he is now. I would be a lucky person. I plan to have his EKG checked(which I think was a awesome recommendation) and hope and pray for the best.
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