The mental health news blog, Furious Seasons has an article about the Finnish study published in The Lancet claiming Clozaril (anti psychotic) is safer than other atypical antipsychotics and based on my daughter's 3 year run on this drug, I left the following comment:
My opinion
"The restrictions of use of Clozaril in the U.S. does inhibit use based on the dangerous side effect (besides heart exploding or cardiac arrest or death)of drug-induced leukemia.
Patients are required by law to have weekly blood work done the first entire year they take it, and after one year if the doctor approves and the lab work has not shown dangerous low white blood cell count and, the pharmacy that dispenses the drug approves, then the patient can go to blood draws once a month. Forever.
The pharmacy has to fill out paperwork and apply to be a pharmacy approved to dispenses Clozaril and therefore not many dispense the drug for prescriptions.
Leaving the patient to find a tricky set up:
1. A doctor to actually prescribe the drug
2. A pharmacy that dispenses the drug
3. A blood work lab that will FAX results to the pharmacy which has professionals review the results (are there normal low white blood cell count)
The results are then FAXed to the doctor, but it is the lab and pharmacy that are difficult to find.
So, with those restrictive laws in place it makes the drug not so easy to work with logistically, and then the side effects are SO bad, that I am doubtful any doctor will ever agree that Clozaril should be first line treatment for Schizophrenia. That's what it's used for and it's one drug that is only used for that, you don't see much 'off-label' use of Clozaril for good reason. (compared to Seroquel for example for insomnia)
The drug is often a doctor's last choice based on all of the others failing efficacy and frankly, Clozaril doesn't work either. Not unless you consider quality of life stuck in a limbo of a drugged up state of mind with dulled senses so that the symptoms of SZ are lessened (dulled) yet the person is still not functioning, (working, living a so-called 'normal' life).
I base all of what I wrote on a 3 year run of my 21 year old using this drug, and if anyone wants to promote its use for efficacy and greatness and use it first-line treatment, go ahead, and I'll show you a few dozen ppl I see just about every day using it, all disabled, most sitting in a stupefied state of mind, still battling the demons of mental illness, and not quite all back, so in essence, it's like being trapped in a world no one wants to be in.
I wouldn't call it a miracle, like the doctor who put my daughter on it, and told me to watch the movie Awakenings for a glimpse of what could happen when he started my daughter on it.
He is the one who also told me then, his infamous words that ended up being sickeningly correct:
"Be prepared to never see the girl you once knew again".
Sadly, 3 years later he was right, the only difference is she isn't locked up in an institution like he wanted her to be in--she's 'free' to come and go, in a world in limbo, with me on outings, and it truly is a sad sight to see a once vibrant young woman--like this.
I've not seen one patient on Clozaril truly live a life 100% "back". That's a lot of drug-risk for so little in return.
Death is imminent on that drug, gold standard for a shortened life span. "-stephany
~~
Click here to read the article at Furious Seasons, where Philip Dawdy,the blog's author (an investigative journalist)writes:
"The FDA adverse events database shows 3,257 reports of death from Clozapine (most of the database information for that drug is under its generic name) and that database only goes back to the fourth quarter of 1997. There other deaths connected with Clozaril that occurred before late-2007, but I don't know how many there were even though from about 1990 through 1995 was when Clozaril was being used the most in this country. It's probably a safe bet that 1,000 or more people died before late-1997. So figure 4,200 or so deaths."-Dawdy
My opinion
"The restrictions of use of Clozaril in the U.S. does inhibit use based on the dangerous side effect (besides heart exploding or cardiac arrest or death)of drug-induced leukemia.
Patients are required by law to have weekly blood work done the first entire year they take it, and after one year if the doctor approves and the lab work has not shown dangerous low white blood cell count and, the pharmacy that dispenses the drug approves, then the patient can go to blood draws once a month. Forever.
The pharmacy has to fill out paperwork and apply to be a pharmacy approved to dispenses Clozaril and therefore not many dispense the drug for prescriptions.
Leaving the patient to find a tricky set up:
1. A doctor to actually prescribe the drug
2. A pharmacy that dispenses the drug
3. A blood work lab that will FAX results to the pharmacy which has professionals review the results (are there normal low white blood cell count)
The results are then FAXed to the doctor, but it is the lab and pharmacy that are difficult to find.
So, with those restrictive laws in place it makes the drug not so easy to work with logistically, and then the side effects are SO bad, that I am doubtful any doctor will ever agree that Clozaril should be first line treatment for Schizophrenia. That's what it's used for and it's one drug that is only used for that, you don't see much 'off-label' use of Clozaril for good reason. (compared to Seroquel for example for insomnia)
The drug is often a doctor's last choice based on all of the others failing efficacy and frankly, Clozaril doesn't work either. Not unless you consider quality of life stuck in a limbo of a drugged up state of mind with dulled senses so that the symptoms of SZ are lessened (dulled) yet the person is still not functioning, (working, living a so-called 'normal' life).
I base all of what I wrote on a 3 year run of my 21 year old using this drug, and if anyone wants to promote its use for efficacy and greatness and use it first-line treatment, go ahead, and I'll show you a few dozen ppl I see just about every day using it, all disabled, most sitting in a stupefied state of mind, still battling the demons of mental illness, and not quite all back, so in essence, it's like being trapped in a world no one wants to be in.
I wouldn't call it a miracle, like the doctor who put my daughter on it, and told me to watch the movie Awakenings for a glimpse of what could happen when he started my daughter on it.
He is the one who also told me then, his infamous words that ended up being sickeningly correct:
"Be prepared to never see the girl you once knew again".
Sadly, 3 years later he was right, the only difference is she isn't locked up in an institution like he wanted her to be in--she's 'free' to come and go, in a world in limbo, with me on outings, and it truly is a sad sight to see a once vibrant young woman--like this.
I've not seen one patient on Clozaril truly live a life 100% "back". That's a lot of drug-risk for so little in return.
Death is imminent on that drug, gold standard for a shortened life span. "-stephany
~~
Click here to read the article at Furious Seasons, where Philip Dawdy,the blog's author (an investigative journalist)writes:
"The FDA adverse events database shows 3,257 reports of death from Clozapine (most of the database information for that drug is under its generic name) and that database only goes back to the fourth quarter of 1997. There other deaths connected with Clozaril that occurred before late-2007, but I don't know how many there were even though from about 1990 through 1995 was when Clozaril was being used the most in this country. It's probably a safe bet that 1,000 or more people died before late-1997. So figure 4,200 or so deaths."-Dawdy
~
One of my articles about Clozaril:
Monday, August 04, 2008,Clozaril : the dangers : the blood work: the risk : leukemia or heart explodes or death:
"Health professionals are being warned of potentially fatal myocarditis, cardiomyopathy and heart failure associated with the antipsychotic drug clozapine.1 Clozapine-associated myocarditis has been previously estimated to occur at rates ranging from 1 in 10 0002 to 1 in 5003 patients. The drug's manufacturer has reported 213 international cases of myocarditis (including 50 deaths), 85% of which developed in the first 2 months of therapy.1 Most of the patients were prescribed the drug in recommended doses. Forty percent were under 30 years of age (64% under 49)." (link to the NIH article in that post)
"Health professionals are being warned of potentially fatal myocarditis, cardiomyopathy and heart failure associated with the antipsychotic drug clozapine.1 Clozapine-associated myocarditis has been previously estimated to occur at rates ranging from 1 in 10 0002 to 1 in 5003 patients. The drug's manufacturer has reported 213 international cases of myocarditis (including 50 deaths), 85% of which developed in the first 2 months of therapy.1 Most of the patients were prescribed the drug in recommended doses. Forty percent were under 30 years of age (64% under 49)." (link to the NIH article in that post)
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2 comments:
I am the mother of a schizophrenic son who regained his sanity with clozaril, clozapine. I am sorry that others have not had the same result. For years all of us suffered watching his suffering with the disease. He decided he would rather end his life than to go on living in the schizophrenic state, with the medicines the doctors had been giving him until then.
When he was put on Clozapine, he did experience an "Awakenings" change in his life. He drives, lives alone, and has made straight A's for the second semester in a row. He has his personality back. I hope chronic schizophrenics will be given the option to try it if nothing else has worked for them. It has been THE MIRACLE for him.
Glad it worked for your son, I wish a long and happy future for him.
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