update on Seroquel/FDA committee hearings April 9, 2009

I’ve been so busy today I’m just now reading about the updates on the Seroquel hearings with the FDA. Surprising considering I’ve been following this story very closely.

Here is a snippet from the Reuters story:

AstraZeneca PLC (AZN.L) won partial support from U.S. advisers on Wednesday for its bid to expand the approved uses of a blockbuster schizophrenia drug.

A committee of Food and Drug Administration advisers said Seroquel XR was safe enough for treating some patients with depression but opposed use of the drug for fighting anxiety given the serious side effects.

The panel voted 6-3 that Seroquel XR had acceptable risks if it was added to other medicines to find a workable combination to alleviate depression. Several panel members stressed that doctors should try other treatments for depression first before deciding to add Seroquel XR.

“I think this represents a second-line therapy,” said panel member Frank Greenway, an endocrinologist at Pennington Biomedical Research Center in Louisiana.

The panel split 4-4, with one abstention, when asked if it was safe enough to use Seroquel XR as the only treatment for depression in some cases. Panelists said there were safer medicines that should be tried if only one medicine was going to be used.

The FDA will consider the panel’s input as it decides whether to approve the expanded use for Seroquel XR. The agency usually follows panel recommendations.

Seroquel is AstraZeneca’s second-best-selling drug with $4.5 billion in 2008 sales. Seroquel XR is an extended release version of the medicine with a longer patent life than the original formula.

Doctors are free to prescribe approved medicines for any use they see fit, but winning FDA approval for wider use would allow AstraZeneca to promote Seroquel XR more widely.

It’s always bothered me that doctors are free to prescribe Seroquel (and other psych meds) when they see fit. If they really cared about their patient’s health…they would not be doing this, knowing the dangers of the drug(s). But it’s all about the money and the quick fix. Seroquel brought in sales of $4.5 billion last year. And most doctors want to get patients out of their office as quickly as possible. Some are getting kick-backs from Big Pharma. You get the picture.

AstraZeneca, you’re back! March 18, 2009

Dear AstraZeneca,

So, you’ve decided to visit three times between and 10:40am and 11:35am. And that was before I posted the link on the story at the Washington Post airing your dirty laundry. Here’s another link, just for fun, from the LA Times where they too have the WP story. You guys can’t buy your way out of this press. It also looks like you noticed the link explaining how patients (we are human beings, not guinea pigs) can now testify in regards to your hearings on applications to have your antipsychotic Seroquel approved by the FDA for depression, anxiety and whatnot. Did you not like the Bob Dylan video in my previous post to you? Well, here’s another version, enjoy it while you can!!!

Domain Name (Unknown)
IP Address 156.70.222.# (Astra Zeneca)
ISP Astra Zeneca
Location
Continent : North America
Country : United States (Facts)
State : Pennsylvania
City : Concordville
Lat/Long : 39.8886, -75.5143 (Map)
Language unknown
Operating System Microsoft Win2000
Browser Internet Explorer 6.0
Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0; SV1; @; .NET CLR 1.0.3705; .NET CLR 1.1.4322; .NET CLR 2.0.50727)
Javascript disabled
Time of Visit Mar 18 2009 11:34:15 am
Last Page View Mar 18 2009 11:35:29 am
Visit Length 1 minute 14 seconds
Page Views 2
Referring URL unknown
Visit Entry Page http://invinciblesum…you-johnson-johnson/
Visit Exit Page http://invinciblesum…seroquel-experience/
Out Click
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Visitor’s Time Unknown

how to testify to the FDA on Seroquel March 17, 2009

Folks, this is so very important. If you have been on Seroquel or you’re taking Seroquel, you know the dangers and side effects of this drug.

Personally, I wish I had the money to go and testify in person. I also wish I had the money to rent a bus (or several) and head to AstraZeneca’s headquarters. We need to be heard. We must at least send a message to the FDA by testifying, this is our chance! If our voices are not heard, this drug will be most likely be approved for depression, anxiety, etc. We cannot let this happen. This is our chance to stop the cycle and save lives.

Please click HERE to find out how to testify.

side effects and stockings hung by the fireplace December 6, 2008

those bloody side effects. (sorry, i recently worked with an actress from england and i love saying bloody) oh, according to The American’s guide to speaking British we should never say bloody!

Bloody – One of the most useful swear words in English. Mostly used as an exclamation of surprise i.e. “bloody hell” or “bloody nora”. Something may be “bloody marvellous” or “bloody awful”. It is also used to emphasise almost anything, “you’re bloody mad”, “not bloody likely” and can also be used in the middle of other words to emphasise them. E.g. “Abso-bloody-lutely”! Americans should avoid saying “bloody” as they sound silly.

sorry, made me laugh…which is a good thing! anyway, back to those…horrific… side effects. i’m not sure what is going on. definite slurred speech from the Abilify. my swain has been sad and told me he doesn’t like seeing me this way. the only way i can describe what i assume he means is…i am not myself, just a shell of myself. physically my body is here but emotionally i am somewhere else, actually not somewhere else. just emotionally NUMB. and that is precisely the problem i have with antipsychotics. if a low dose of Seroquel or Abilify can turn me into a zombie, imagine the thousands of children taking them…horrific…and who knows the long term effects.

the xanax works just fine i suppose. it knocks down any anxiety but they are certainly the addictive little pills. the celexa…i’m not so sure about. might be messing with my sleep schedule. for example, we started watching a movie last night (a movie i have wanted to see for a long time and was excited or as excited as a zombie can be) and i fell asleep before the opening credits finished running. woke up at 10:30pm and then to bed around 2am. woke up at 6am with severe pain in both arms/wrists/hands. took a few ibuprofen and fell asleep on the couch around 830a only to awake at 1050am and haven’t been able to sleep since. i googled carpal tunnel thinking maybe that’s what is wrong with my hands. or it could be one of the medications.

here’s what i hope. well, first, i hope the pain goes away. if it doesn’t in a few days-i don’t know what to do, i can’t afford to see a doctor. but, i hope when my 3 week supply of Abilify and Celexa are finished, I am done with them and I hope I won’t fall back into that dark hole. I will hang onto the Xanax (2 month supply) and deal with its nasty withdrawal symptoms later. I’m not exactly going against my doctor’s orders. She only wanted me on the Abilify for 3 weeks partially due to the fact I told her quite bluntly…I’m not stupid, I’ve been researching mental illness and their medications for nearly 10 years now…i know for a fact there is very little research and many unknowns on the short and long term effects of the pharmaceutical company’s hot, new, fancy drug (Abilify) used to treat all sorts of things from depression to bipolar to schizophrenia. I am sure there will soon be lawsuits similar to the other atypical antipsychotic (Seroquel, Zyprexa) lawsuits. and then, well…we’ll start seeing another hot, new, fancy drug advertised and doctors will be passing them out like Halloween candy.

Ok, I lied. Maybe not totally following doctor’s orders. I have been tempted to stop taking the Celexa (weight gain and loss of libido are big side effects) but I will give it a few more days and see what happens. I would also like to quit the Abilify. Before taking this I was already depressed and running to the store was a huge chore. But now, in my zombie state I can hardly function. you try working or looking for work, playing, enjoying life on any antipsychotic…trust me. I am positive when I see my doctor in 3 weeks she will want me to continue taking the Celexa and Xanax. But I hate SSRIs almost as much as I hate antipsychotics! I don’t know how I’ll continue that medication…but I’ll cross that bridge when I get there.

Here’s the good and bad news. Suicidal thoughts-gone. Anxiety-gone. Depression-um, hard to say. But I’m so drugged up I can’t seem to focus on anything but just GETTING THROUGH THIS and getting better!!!! I called my parents because i miss them terribly and i wanted to begin repairing the damage because I love them so very much. I was immediately bombarded with questions about work. Have you found a job yet, etc… and i wanted to scream….LAST WEEK I WAS PLANNING A SUICIDE. well, not technically but i was thinking of how to do it, planning to write a list on how to distribute my belongings (i only got as far as my “C” diamond necklace to go to my niece and our dear sweet buddy to whomever could care for him the best) and then thoughts like, dear god…who will pay for my funeral. and more importantly…how selfish. and most importantly…there are so many people in this world i love SO dearly—I could not leave them. However, I have to realize my sister and my parents can’t talk about or understand any of the above. Instead I was told MSNBC is poisoning me! like that is really a concern of mine right now. I must figure out HOW to ignore and love no matter what. Oddly enough I have always loved people, all people i have met in this world and people i don’t even know…i have loved them unconditionally.

isn’t that what life is about…love? i think so.

Odd, reading through this “blog” I don’t sound like a zombie and I don’t feel like one right now. Maybe it’s the coffee. maybe i’m manic. maybe for the moment i’m just so darn happy the suicidal thoughts are gone. or maybe i’m getting better, again, for the 1,188th time in my life.

This is what I do know.
I was able to put up the Christmas decorations even though for the first time in 35 years I really didn’t want to. But I’m enjoying those Christmas lights and stockings hung by the fireplace. I know we can’t afford to buy christmas gifts and we mailed leftover christmas cards from last year even though one of my favorite things is buying christmas cards every year. And since I usually send personalized cards to family and cannot afford 10 or so at 4.99ish a piece we will be doing something different this year for the family cards.

I know that it is cold here and i’ve had a fire burning for nearly 20 hours.
And I know our cat is happier than he’s ever been.

a familiar road December 3, 2008

things in my life have taken a turn for the worse. call it anxiety. call it depression. call it bipolar. and yes some suicidal thoughts thrown in the mix. call it whatever you want but it’s not fun. at all.

the past 12 or so months have been unusual and quite difficult. in no particular order dealing with:

-loss of health insurance for the first time in my life
-the 20 year anniversary of my rape which has flooded my mind more than usual
-the diagnosis of sciatica and adenomyosis
-choosing a road without medication for my mental illness
-the economy failing and finding it incredibly difficult to secure a job-especially when the last ten years of my “occupation experience” fall in the film industry, which nobody seems to understand. when you can’t get hired at the new whole foods or trader joe’s in town-things are bad.
-two newborn nieces i have never met
-difficulties with my family over numerous issues have brought much sadness

where have the above left me? in a deep, dark hole. and for the first time (in a long time) i have not been able to see the light and that fact frightens me.

it could be worse. i know this. we all do. i especially know this considering a family member was killed in Kuwait, he was 19 and had his whole life ahead of him. another cousin just happened to be at the Alfred P. Murray building on the same day Timothy McVeigh “visited”, Thomas died that day. A girl I worked with was shot during last week’s Mumbai attacks.

however, I have a mental illness and have come to realize that sometimes you must take drastic measures to get out of the “hole” and that (sometimes) requires taking medications you absolutely despise. (this would not be the case if i could afford acupuncture)

i paid a visit to my internist since i cannot afford to see a psychiatrist without insurance. yesterday morning i sat in her office taking deep breaths, trying to avoid a full blown panic attack. i stared outside her window, watching small snowflakes slowly fall to the ground. grey skies. ugly buildings. but beautiful snow. and my mind kept going back to the same place—when will this end? it was there that i decided, probably never. i will be fighting this illness my entire life. it’s like an incurable cancer that you are born with and forced to live with…until the end of your days. and i say that because…

my internist walked in and asked what was going on…i broke down…and three crumpled tissues later she was handing me 3 sample boxes of Abilify (the heavily advertised antipsychotic), a prescription for xanax and celexa. Wow. I fought the Abilify choice-I am 100% against antipsychotics after my Seroquel experiences. However, she basically told me i am in a very bad place and need something strong to get me out of it. She promised it would be short term-hence only a 3 week supply. During our visit I was reminded of something a nurse at a Vanderbilt psychiatric study told me. and i told the story to my doctor. basically, a few years ago i signed up for a paid depression study— after i listed the medications i had taken over the past 15 years, the nurse denied my participation in their study by simply stating, we have deemed you untreatable.

yesterday my doctor laughed at the idea of participating in such a study and my response was a bit harsh, and from the look in her eyes, I don’t think she liked it…..i said, “why not…i’ve been a guinea pig for the pharmaceutical companies for YEARS and i might as well get paid for it!”

untreatable. and that’s where i’m going with this. i am convinced the medications on the market for depression, bipolar, etc either a) don’t work b) work short term or c) make us sicker. and although a lot of my “symptoms” revolve around situational experiences, i do believe i was born with a mental illness and i have to figure out how to live with it and survive it…in a world full of stigma and companies that do not seem to give a damn about the medications they are pumping into our bodies. the studies are flawed and fixed. it’s all about the money. doctors are influenced/bribed. the hippocratic oath is a rare thing these days and that is very sad.

and so i stare at these and cringe:

as much as these medications disgust me it was the printout i received from my pharmacist that truly disturbed me, it was titled:

Antidepressant Medicines, Depression and other Serious Mental Illnesses, and Suicidal Thoughts or actions.

the printout goes on about how loved ones should pay close attention to any sudden changes in mood, behaviors, thoughts, or feelings. they list possible symptoms like…thoughts about suicide or dying, new or worse depression, new or worse anxiety, panic attacks, trouble sleeping, new or worse irritability, acting aggressive, being angry or violent, acting on dangerous impulses, an extreme increase in activity and talking (mania), feeling very agitated, other unusual changes in behavior.

How unbelievably ironic and SAD. medications prescribed to stop these very things can lead to any of the above. So much for progress. I have fought this illness since I was thirteen, that would be 22 very long years.

and this is where we are?!

but…i’m not back at square one. i’m just on a very familiar road. a road that is very bumpy, curvy and unpredictable. luckily i’m smart enough to know when that road leads me to a cliff, i do whatever is necessary to avoid jumping off.

maybe someday i will not be deemed untreatable. maybe someday my illness will be understood by the people i hold close to my heart. and hopefully someday that road will never lead to a cliff.

peace. love. understanding. October 17, 2008

tonight i will fight to stay awake. all night. for a purpose.

a purpose so many people might not understand. and if they do understand, it is something they will probably rarely, if ever, do. it might seem silly or trite but it is not if you are mentally ill.

it is so very big. it is a reminder that you are sick. that you are different. that you might never get better.

tonight i will fight to stay awake so that my husband (or i) do not oversleep in the morning. i left him minutes ago, at 3am. he was restless and panic stricken with thoughts of his new job tomorrow. i was restless right along with him, afraid we would both sleep through our alarms and then…there would be no job. we would not be able to pay our rent. and we would be on the streets. along with the thousands of other uninsured and forgotten mentally ill men and women. and so i chose to stay awake. in a few hours i will wake him and pray he makes it through the day.

tomorrow his job is simple. he is driving a u-haul truck 3 hours away, picking up items for a reality show and driving back home to unload the unknown items. i fear that if he does not sleep tonight, he will fall asleep at the wheel. his fear is: it’s a big world and sometimes he has a hard time living in it. he has been mentally ill as long as i been. twenty plus years. when my depression would overwhelm me, his anxieties overwhelmed him. there have been many times in his life when he could not leave his home. to this day, he still struggles. the medications he has taken over the years have worked well enough to get him out of the house but he doesn’t really live. neither one of us live like most people do. that is, unless, you have a mental illness and know exactly what i’m talking about.

when a mentally ill couple travel to a nearby city for a weekend getaway, disaster occurs. we didn’t walk the streets, holding hands, people watching. we didn’t enjoy dinner in a nice restaurant full of people. instead we spent our time frozen, in the hotel room watching movies and ordering room service. some might prefer the latter. but for us, we crave to live amongst the living. we try and we rarely succeed.

we also know the reality right around the corner. in this case, we really couldn’t afford that weekend getaway. the medical bills and student loans overwhelm us. the bill collectors never stop calling, even as wall street crashes. we borrow money. we sell items near and dear to us on eBay. we just barely get by. all along dreaming of a better life. an easier life (we’ve paid our dues for far too long). and wondering if this life we dream of will ever become a reality.

i do have hope and love. those coupled together, only make me stronger and keep me dreaming.

my sister and i haven’t spoken in almost two months. she is my only sibling and she also lives with an illness. there is no cure. most people have never heard of it. but unlike mine, there is no stigma attached to it. and so people send their wishes and pray for her recovery. ten years ago she was diagnosed with RRP and she’s had over sixty throat surgeries since. she is a fighter. you would never know she was sick if you met her. she doesn’t talk about it. she sells insurance and lives in a very large home that could sleep ten families. she has one child, a girl, and one more on the way. another girl. tuesday was her due date. my mother told me she has not yet had the baby. i was there for her first child’s birth. i will not be there for this one and it saddens me terribly. the reason behind it is something that pains me and has left me feeling incomplete.

scary September 5, 2008

from WebMD:

Seroquel XR, an antipsychotic drug approved to treat schizophrenia and bipolar disorder, may ease generalized anxiety disorder, new research shows.

Seroquel XR (the “XR” stands for “extended-release”) is approved to treat schizophrenia and bipolar disorder. Its maker, the drug company AstraZeneca, is seeking FDA approval for Seroquel XR as a generalized anxiety disorder treatment.

In the new study, 854 generalized anxiety disorder patients were given either Seroquel XR, Lexapro (a prescription drug approved to treat generalized anxiety disorder and depression), or a placebo without knowing which pill they were receiving.

For eight weeks, the patients took their assigned pills daily. During that time, Seroquel XR and Lexapro beat the placebo at reducing anxiety, according to surveys completed by the patients.

Those improvements started on the fourth day of taking Seroquel XR. Lexapro was “also effective, but improvement was not seen by Day 4,” write the researchers. They included Charles Merideth, MD, of the Affiliated Research Institute Inc., a San Diego company that conducts medication studies for drug companies.

The most common side effects reported in the study were dry mouth, sleepiness, sedation, nausea, dizziness, and headache (with all pills). Constipation and insomnia were also on the list for Seroquel XR; fatigue and diarrhea were common side effects in the Lexapro group.

click here to read the full story.