Your voice only added to mine in that wilderness of trying to drive home to docs for 7 years.

Of course my writing is all throughout this blog re: each one of those APs, especially Zyprexa.

My daughter was never a raging child, up to age 11, until she went on Zyprexa. For years I tried to convince docs to look at zyprexa's own fact sheet per the side effects being exactly the symtoms she was having, and it has been documented in their files, that doses higher than 7.5 mg of zyprexa agitated her.

Sent home from Western State on a whopping 30mg a day. Need not to say more about the events happening on that.

Yes, keep pushing the docs, I am.

I also have pushed since May 2005 to about 9 pdocs, that she may not be able to come off of APs at all, and that thinking outside of the box, the antipsychotics could be creating and did create psychosis, and now her brain can't live without them.

No one wants to talk that talk.

Yes, also, everyone read the fine print of Philip's post here: autistic kids are being medicated with risperdal among other meds, for one sole reason: agitation. Guess what? I have seen it get worse, when they trial these meds, and they are as young as 10 years old.

Hey Phil- great piece. I was happy to see the atypicals so openly submitted to criticism. Have you noticed how quick journalists and doctors are to discuss the side effects of drugs when they aren't used to treat a mentally ill population? Because the elderly aren't considered the "threat" to society that the mentally ill are, I think PC journalists and docs are more willing to discuss the negative aspects of the drugs used to treat them (not that the elderly aren't terribly mistreated and marginalized in our society). It's part of the whole acceptable discourse: "yeah there are minor side effects to psych drugs but nothing is worse than mental illness."

It makes me sad when people with mental illnesses internalize that rhetoric: "oh I used to be creative or thin or healthy or sexual or energetic but now I'm not but i'm properly medicated and it's a small price to pay." On the one hand it's completely understandable. But nobody deserves to lose their health or personality at the expense of drugs one is to take for life-sustaining "maintenance" forever. I think we should be demanding drugs that don't have life-nullifying side effects along with more holistic approaches to treatment. you know, treatment "plans", not just drugsdrugsdrugs.

i remember sitting in this group therapy session once. about half of us were on seroquel, among other drugs. we were complaining about how we were having a hard time as some of us were sleeping 14 hours a night and having trouble being productive during the day because we were so sedated all of the time. there was a psychiatrist there, a bp expert. he admonished us, "you guys have to think about why you're feeling so 'sedated' all the time. is there a relationship you're trying to avoid by staying in bed? is it homework? what avoidant purpose does it serve for you to blame these meds?" this stuck with me because it's a perfect example of a doctor-an "expert"-advocating for pharma and not for patients. there's a severe disconnect there. that's why i don't venerate medicine like i did before. also because my friends who are in medical school did worse in science classes than i did and struggle with material or flunk the occasional exam the way anybody else in professional school does.

i agree completely with john mcmanamy about knowledge being your best weapon, sometimes even against your own doctor.

Recent studies have found that atypical antipsychotics used to control agitation in aggressive Alzheimer patients (chemical straight-jacket) have unacceptable risk.

At 5 to ten times the cost of the old standby thorazine,recent comparative studies show the diabetes inducing zyprexa class of drugs are only borderline better in controlling symptoms.

WOW zyprexa is a WORSE offender for causing diabetes than risperidone.

My clinical contacts in the mental health field right here in Bangor Maine tell me that they have stopped prescribing zyprexa altogether.

This is interesting,as i thought that all drugs of a certain class had the same molecular makeup (eg asprin) and were just the same drug family marketed to get around patents.

This must be wrong as zyprexa is being reported as more dangerous than than the other atypicals.

WOW

Daniel Haszard Bangor Maine http://www.zyprexa-victims.com ~ zyprexa caused my diabetes

Wierd!!! Are any of you bisexual? I just told someone that I was and she's like, "you should come up to my room." I'm not bisexual though.

We DO have market power.

The best way to get in the face of big pharma, is to befriend it/them.

The way you start, is simple. With the drug reps. They are not just found at conventions. They walk into the docs offices on a daily basis, and if you catch one on their way out the door, it's an easy conversation to have while going down the stairs, in an elevator or on the way to the car....

TELL them how YOU feel on X medication.

Trust me, they may be sharks, but what stops the consumer from being one too?

Change cannot happen without movement.

I am one of those people who looks for opportunities, and who better to hear the Seroquel fog stories, than the drug rep handing out samples?

A consumer can take action, or a consumer can sit and wait for someone else to do it for them.

If one chooses to sit on the sidelines, then the wait will be that much longer for a quality of life on medication that we dream about; this stuff is not accomplished by dreaming.

If every person reading this website today, reported every fine print detail to the FDA medwatch site (regarding side effects large and trivial sounding)that gives the people doing the studies more detailed information to start.

Then, if every person reading this website took some sort of real action:
Such as:
Write a letter to your Governor. Write a letter to your psychiatrist. Tell friends what it takes to get up every day and exist on these meds. Meet a pharma rep (they aren't hard to miss, they were suits and carry free notepads and pens! get some! then you can take notes and get something for free, gotta make it win/win)..

and speak up. Speak up to anyone who will listen.

I am just wondering if you have ever been lying in bed completely unstable, and your beautiful 3 year old child climbs in bed, lays down, snuggles into the crook of your neck and whispers "Mommy, please make the voices go away"?
We all need to work together. None of the meds are perfect. But the alternative certainly is not either. - S

Sadie,

My daughter was 11 when she said that to me.
Hang in there. Your daughter will be one that I think of now when I fight the fight.
Take care,

Stephany

Patient/Consumer
Mother/Advocate

I acutally really like having schizophrenia. If I didn't have it, I wouldn't be friends with Philip, I woulnd't see my doctor, I wouldn't have met some really nice people throughout the years, and I wouldn't be the writer that I am. I know not everyone likes having schizophrenia, but for me, it has really made my life a lot better.

My nephew is autistic and the idea of him taking Risperdal makes my skin crawl. It is on my list of "I will not take this" drugs. When I get a new doctor they always get upset with me because I come prepared with a list of drugs I have taken and why I stopped and a list of side-effects I refuse to put up with.

Drugs like Zyprexa and Seroquel turned me into a zombie - I was either asleep or on the edge of sleep 24 hours a day. I was in the mindset of "the cure is worse than the disease" because I had no life.

Thanks for a very frank and informative post.

I am a professional who works with autistic kids. Hang in there 'chick', and thank you for watching out for your nephew.

It is very hard to see children I teach change, and become agitated, and find out that 'change' also went hand -in-hand with a risperdal addition.

Risperdal especially, is becoming a 'favorite' to 'settle down' autistic kids, who are basically just growing up.

Best,
Stephany

I have taken Zyprexa since 1997. Unfortunately, it is the only atypical antipsychotic that works for me (stops agitation and psychosis.) Also unfortunately my weight zoomed from 93 lbs to 180 lbs in record time. I now have high cholesterol and high blood pressure and my pdoc says the cholesterol level will not come down (even with modified diet and exercise) as long as I take Zyprexa. He will not try typical antipsychotics.