March 17, 2009

Seroquel User Testimony

As many of you know the FDA's psychopharmacology advisory committee is holding hearings on AstraZeneca's request to have the agency approve Seroquel for three depression indications and generalized anxiety disorder. The committee wants to hear from the public and here's some written testimony submitted to the committee that was passed along to me.

"I was prescribed 300 mg.seroquel in 2000 for sleep problems. I gained 75 pounds in 6 months. I developed diabetes. I went through profound withdrawals when I inadvertently missed a dose and had to be hospitalized. The withdrawal caused psychosis which was attributed to a new diagnosis rather than to the drug. I lost all my teeth due to dry mouth. I developed cataracts. I had constant intrusive suicidal ideation. I had akathisia, difficulty swallowing and severe muscle cramps. I lost my critical thinking ability, the ability to make decisions and generally access my 'executive functioning.' Because the medical establishment refused to accept that their "therapy" could be poisonous they continued me on this drug for 8 years and added new drugs to cover up the symptoms of massive endocrine dysregulation.

"The use of these classes of drugs must be sharply curtailed. These drugs must not expand the wealth of shareholders as they destroy the bodies and brains of the most vulnerable classes of people in our society. Psychoactive chemicals 'work' by disabling nerves, not by restoring their normal function. Emotions cause chemical changes in the brain not the other way around. No-one knows how the staggeringly complex interactions of neurons actually work. The neurotransmitter theory is based on observing the brain damage caused by psychoactive chemicals, not on any understanding of how a normal brain operates. Time and human support are the safest and most effective means for getting through difficult emotional challenges."

I'll have more later today on how you can submit testimony or testify in person.

Posted by Philip Dawdy at March 17, 2009 12:01 AM
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Comments

My doctor has me on Seroquel for bipolar disorder and I'm really concerned about having this crap in my body. I'm not aware of any side effects except the usual loss of energy that I get from any psych med.

Posted by: Francesca Allan at March 17, 2009 07:48 AM

Excellent testimony. Many thanks to the brave soul who wrote this and to others who will come forward.

Posted by: Lilly NC at March 17, 2009 10:08 AM

I'm looking forward to hearing how one can submit testimony without appearing in person. I am assuming you can submit even if you did not become diabetic after taking Seroquel. 40 pounds of weight gain in a couple of months, 12-18 hours a day sleeping, slurred speech, constant zombie state, etc is sufficient enough I would hope.

Posted by: kim at March 17, 2009 11:51 AM

"Emotions cause chemical changes in the brain not the other way around."
Great!
I'm always puzzled by cause-effect in what the brain function is concerned.
They only see it one way-road.
I would really like to have evidences that the brain is the responsible for all.
I would also want to know if the mind is a product of the brain.

Posted by: Ana at March 17, 2009 12:15 PM

PS: Please, I would like to hear new theories to explain it all.
There is no evidence whatsoever in what science has explained till now.
Thank you.

Posted by: Ana at March 17, 2009 12:16 PM

I haven't followed your story ... I'm wondering if you'd tried any other medications for insomnia before starting Seroquel? Also, what dose did you start on? Quetiapine is generally considered to have more "sedative-hypnotic"-like properties at lower doses and so doses of 25-75 mg are usually the most efficacious when using it for insomnia; higher doses tend to be less sedating. Did you develop tolerance to lower doses? How long before your dose escalated to 300 mg? This seems like completely irresponsible prescribing by your physician; if you were taking Seroquel solely for sleep difficulties and had no comorbid psychiatric condition, then 300 mg is an entirely inappropriate dose. Was this a psychiatrist or a general practitioner?

It still surprises me how often Seroquel is touted as a "safe" sleeping medication when compared to (for example) Ambien or Lunesta or Klonopin ... simply because it doesn't carry a "controlled substances" sticker on the side of the bottle. But abuse liability is only a very very very small part of drug safety. Consider MAOIs - not at all addictive and quite effective for very specific treatment-resistant conditions but not to be prescribed lightly! And just look at the new Celebrex commercials - remember back when they just sang "Celebrate! Celebrate!"? I do. Celebrex isn't addictive. Does anyone at this point believe that it's safer than, for example, Vicodin ... just because it's not a narcotic drug? I'd take my chances with the narcotics.

Anyway, you can privately message me or maybe respond publicly if you're comfortable. I'm also wondering whether or not you use any medication for your insomnia presently (whether prescription or OTC or herbal)? And how the drug impacted your sleep in the long term? Maybe you can point me to a post where you address this?

Posted by: Kat at March 20, 2009 09:38 PM

That's an unfortunate story, but I on the other hand have had a very good experience with Seroquel. I started off at 25mg, and like Kat has mentioned, it is on those lower doses where the drug is (most ) effective as a sleeping agent. I was on a 300mg daily dosage myself, and I would say that once I reached the ~150mg mark ( I started off at 25mg, and it was at 300mg where I found the drug to be effective in treating my symptoms), Seroquel no longer made me groggy during the daytime. At 300mg it didn't make me tired and I was certainly not an insomoniac, so I don't see why that individual would be at such a high dosage level. 25mg would have been just right (and WOW it was amazing at putting me to sleep then!)

I was on Seroquel for almost 2 years, and unlike this individual, I did not experience weight gain of any sort. Initially I'd say I gained about 5 pounds, but that simply caused me to eat more sensibly and work out more. What stopped this person from eating salad, or simply exercising more to balance out their increased intake of calories? The drug doesn't magically change your metabolism or otherwise "make" you fat-- it's sedative properties (i.e. you want to lie down instead of take a walk) and preference to do nothing (causing you to eat) make you gain weight.

The latter of that person's testimony I cannot relate to- I actually went off Seroquel out of my own choice, and I did experience a withdrawal (only because I went off cold turkey-- this is a bad idea, but I only did to avoid those extremely sedative properties of the drug at lower doses!) but it was nothing like this individual's-- I had typically nausea, chills, etc, for about a week or so. Nothing worse than a stubborn cold to be honest. If this person developed CATARACTS and actually lost their teeth... well, I think that's merely a correlation, not causation, with Seroquel. We don't know this person's medical history to sufficiently say, yes it was Seroquel that caused these things to occur...

This drug may not have been successful for this person, but I have a problem with them calling for the outright 'curtailing' or "these classes of drugs". Frankly, Seroquel has been a very good drug for me, and I am not sure I would be alive today if it wasn't for this drug (my only regret is not being put on this drug sooner; perhaps I would have had some semblance to a "normal teenage life"). I have a lot of sympathy for this person who is obviously going through a very difficult experience, but it is their doctor who they should focus their anger toward, not the drug. By the time they gained 20 pounds they should have had a serious discussion with their doctor seeking an alternative, and otherwise noting their decision to get off the drug, with the doctor's "approval" or not...

Posted by: Jenny at March 21, 2009 03:51 PM

I take resperidone of two miligrams daily at night because my doctor prescribed me to take this. But after some periods, I developed amnesia and still going on. I have a habit of forgetfulness and my doctor doesn't pay attention to my words. He suggested that I not discontinue the drugs without his permission. I can't sleep without it and nowadays i gained weight and my hair is ripen very fast.
I want to say that how long do I have to go on drugs? Is it forever? My doctor told me that I developed Schizophrenia and it must be treated with drugs. I am on a job in Bangladesh and my office knows that I have mental stress. My family is a bitter place bercause my mom is schizophrenic and my elder brother and sister are also schizophrenic. They do nothing but taking drugs and developed some side effects e.g my sister has blurred vision, forgetfulness, muscle cramps, inability to speak before audience, indecisive, food craving, inertia etc. tell me what to do in this circumstance. I can not improve their habits and can't even do a bit to help them enjoy their life. So to what extent shall i do to improve their skill to be socially acceptable?

Posted by: rezwana salam at March 22, 2009 02:12 AM

Jenny said, "it's sedative properties (i.e. you want to lie down instead of take a walk) and preference to do nothing (causing you to eat) make you gain weight." Yep, and that's one of the reasons I wish docs would quit giving this to people who are depressed & already don't feel like doing anything. Why make a bad situation worse? The last thing I needed was to be even more sleepy & unmotivated.

Telling someone who is given a sedative to just resist the effects of the sedative is idiotic. That's like telling someone who is given ambien, just don't go to sleep. That makes no sense. How many people who take seroquel suddenly have the energy to start an exercise program & weight loss plan? Give me a break.

Posted by: Lisa at March 22, 2009 10:40 AM

In response to Lisa's post, I totally agree regarding taking Seroquel and suddenly having any energy to start an exercise or weight loss plan. In another life (before Seroquel), I used to LOVE to exercise and would feel guilty if I didn't hit the gym at least 5 days a week. Today after being on it (400mg) for 7 months I've gained over 60 pounds, my blood pressure is up, I have low thyroid, and I am ALWAYS exhausted. All I want to do is sleep and eat. When I wake up in the morning I can barely get out of bed. Every day I feel as if I'm very sleep deprived (even after 11 hours) and every night I go to bed feeling like I'm nutrionally deprived or something and starving. It's hard to explain... I'm in the process of attempting to wean myself off of this drug

Posted by: Leslie at April 7, 2009 03:14 PM

hi everyone i just started seroquel 3 days ago for acute bipolar the first night i took it and woke up with restless legs so i got up to take an ambien walked to my closet and completely passed out for maybe a minute not very long but i still passed out. i usually go to sleep around 10:30 and wake up around 8 am , but now i wake up around 11:30 and im really shakey and starving after i eat it feels like i have to lay down and sleep for another couple hours today my boyfriend noticed that my body mostly my hands were twitching .just wondering is this forever with seroquel or will this pass

Posted by: cassandra at May 17, 2009 12:39 PM
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