Is my Generic Pristiq inferior to name brand? CVS came thru….thank Goodness!

Some people might call this manipulation of the system, but I regard this as a tactfully maneuvered agreement.

Because of all my medical conditions (bipolar disorder, psoriasis, chronic pain, prediabetic, etc.) and side effects (Including chronic dry eye, high cholesterol, constipation, Tardive Dyskinesia), …I’m on a long list of medications, most of which I have to fight my insurance company for. I’m a worthy adversary, just in case you’re wondering…they probably hate me. I cost them money and eat up their time with grievances and expedited appeals…..reminds me of the Nirvana Song “Heart Shaped Box” that goes, “Hey,Wait, I’ve got a new Complaint” LOL.

Right this second, I’m on hold for forty minutes now, as I blog this, with my Medicare Part D prescription drug plan, Silverscript/Caremark/CVS.

I have what some people call “Tardive Dysphoria,” also called “Prozac Poopout,” (poor Eli Lilly and their Green and Off White Giant, it was so spectacularly successful, when the pendulum swung the other way, Prozac ended up with this moniker, in a classic case of branding in reverse)…

Anyway, I took Prozac for 8 great years and then….it stopped working for me. This has been the normal course of my illness since 1997. My antidepressants burn out and it’s severe, dramatic. Does this sound familiar? I’m functional, but barely breathing until I find a new antidepressant….basically, we rotate them, and sometimes, I have to take an entire month off of them to allow my brain to ‘reset.’

Antidepressant burnout is actually more common than not…they even have a rating scale for it. However, it’s not discussed…due to doctors and drug companies not wanting to set off the reverse placebo effect….plus, it does nothing for brand loyalty.

Anyway, I take the generic Pristiq for three weeks, and I start having notions of hanging myself…vivid and articulate like.

So I’m asking myself: What’s changed???  Luckily, I’m a Squirrel, and stash handfuls of RX drugs for just such an occasion. I pulled all the generic Pristiq out of my trays and replaced it with expired Pristiq 100 mg samples, some of which are cut up. (They tell you never to cut up meds, but I like to stretch them, especially right about now)  Within two days, I bounced right back. No more wondering whether a belt or a rope would be better to dangle from.

I hustled in to see my psychiatrist of 21 years, who did a ‘formulary exception request,’ which was immediately approved. The problem was, I couldn’t get any new Pristiq because I’d just gotten the generic junk two weeks ago.

My 45 minutes on hold with CVS was rewarded, I didn’t even have to ask for a supervisor. They did an override and I can pick some more up tomorrow. I wish I could tell you that was my only medical encounter this week…..far from it.

But still….today, tonight especially, I won.  I’m still alive, propelled by my expired Pristiq, and I’m grateful for my fortitude. The skills of a former drug addict came in handy tonight. You can take the dope out of the fiend, but not the fiend out of the dope.

Patient Activists Re Schizophrenia and Tardive Dyskinesia

It’s not the “Allison Strong Show:”

One of the things I’m learning about this work is that I need to be more of a leader. Other people want to ‘talk shop’ and compare notes, which can lead to gossip and comparisons. I hate it when I compare myself to others, I always come up short.

 

That being said, there is this incredible lady who is running a foundation for Schizophrenia research, treatment and recovery. Lots of the content on the site is holistic, or functional, nutritional psychological….it’s not ALL about medicine.

If you are interested in any of this you can find Bethany Yeiser at Curesz Foundation. She also wrote an incredible book, called “Mind Estranged” about her recovery from Schizophrenia.

 

This particular video is about a drug that I take, it does not aggravate my neurology the way the newer drugs did, I had less weight gain than I did on Seroquel, and in my humble opinion, this drug is woefully underused. Why? It’s not a new drug, not on patent, and therefore, no money going into marketing. Second reason: Monthly blood work to guard against a very rare, but fatal side effect.

 

But also, Clozaril almost never causes Tardive Dyskinesia. I wish I’d been on it from the  beginning. So worth it. My life is better today because of it.

About being a ‘Professional Patient’

 

Re: Finding work as a Patient Advocate, or Ambassador, or “Patient Influencer” paid or unpaid.

Last time I posted it was about drumming up some extra dollars by promoting what’s called ‘disease awareness’ or speaking on behalf a drug that’s benefiting you personally. I  promised you a series on this subject. I’m delivering, starting now.

As you probably know, Doctors often work for drug companies or manufacturers of patented medical devices, as recently reported by the New York Times and other major media outlets regarding Memorial Sloane-Kettering’s chief medical officer (CMO), Oncologist Dr. Jose Baselga, who failed to thoroughly and completely disclose his financial ties to industry, particularly in the arena of research. The public outcry regarding the financial pressures brought to bear on the Medical field, something called ‘Institutional Corruption,’ is well-documented in Robert Whitaker and Lisa Cosgrove’s book, “Psychiatry Under the Influence.” (Whitaker wrote “Anatomy of An Epidemic” and “Mad In America,” and crusades for social justice in the treatment of mental illness. His blog, Mad In America, or MIA, is easily findable online. Also, if you’re curious about a medical professional, everything you need to know down to the catered lunches is ‘supposed’ to be on Pro Publica’s “Dollars for Docs.” Dr. Baselga forgot to mention a few arrangements he had, more than a few times, it’s said.

My point? Doctors aren’t perceived as trustworthy as they were in the fifties and sixties, when they did commercials telling people of studies proving cigarettes weren’t harmful. Back then, a white lab coat could sell anything.

For a while Drug companies used celebrity spokespeople to push their products, like Sally Field, Blythe Danner (Gwyneth Paltrow’s Mom), Professional Golfer Phil Mickelson, (Enbrel for his Psoriatic Arthritis), but research shows an inverse relationship between fame and relatability. Just because someone is well-known doesn’t mean you’ll go out on a limb and ‘Ask Your Doctor if Drug X is Right for You.’ What they’re looking for these days is the real patient, the everyday person, doing every day things, and the depth of their story.

 

Patients with otherwise unremarkable lives, like me, or you, are the last bastion of credibility.

The Drug Companies, Ad Agencies, PR Firms, Patient Advocacy Groups, they all want to hear our stories, whether they are stories of success or stories about our struggle. My next post will tell you where to find a few people who are constantly looking for us.

Cat- Astrophe Solved!

She was missing. She is mute. We couldn’t find her. We used DBT to think, “Ok, what’s the worst case scenario?” Mike thought she had gotten out. She’s cute enough (a delicate calico kitten) someone might want to keep her for their own. I was pretty sure she was either hiding or trapped in the house. Mike was SURE she was NOT in the house. In the end, we opened one of his sock drawers and she jumped out. God were we ever relieved!!!!

 

Tardive Dyskinesia Videos

I did these videos three years ago, underneath crappy indoor overhead lighting and with no makeup on to cover my considerable sun spots from all the tennis and volleyball and running in South Florida. Still, their message resonates. No matter how hard they try to squelch us and our ungainly side effects, Tardive Dyskinesia happens (our population has grown three-fold in the last ten years) there are ways to prevent or delay its’ onset, and there is finally FDA-Approved first ever ‘first line’ TREATMENT!!!  Ladies, Tardive hits women 2-4x more than men, so you might want to see if you’re on one of the medications that cause it. The problematic medicines are in the ‘Dopamine Receptor Blocker’ category and they include products in wonderfully conceived, expansive mindstyle ads promising happy days ahead. The drugs are great, but they have regrettable fallout. Sometimes they are used for anxiety, sleep disorders, dementia-related agitation, cancer anorexia and aids (to stimulate appetite) and gastrointestinel disorders.

These are located on IBPF’s Youtube channel.

or you can Google Tardive Dyskinesia or Allison Strong if the link doesn’t get you there. from what I understand, these videos might be taken down shortly, so watch them while you still can.

 

An example of ‘Dialectical’ (in DBT) 1st Hollywood SuperAgent Sue Mengers

This was the late Sue Menger’s favorite picture of herself, smoking up a storm at her desk. She smoked other stuff, too. 

With all the hype around DBT, alot of people wonder….what is dialectical? It’s hard to explain. It sorta means two opposite things can both be true, and to learn to walk the middle path while accepting the opposites or dichotomy.

A recent Vanity Fair Hollywood Edition there were quite a few examples of ‘Dialectical’ Types…but let’s start with Sue. It’s said she was the first person who could have all the talent packaged in a film and work a deal to give the actors a part of the back in…the box office receipts in percentage points.

Sue Mengers was all women. Like the boys in the boys club, she was from the East Coast, came up from the William Morris Mail Room but later went out on her own. She was tough like a Man.

She had to deal with male directors of the old school, however.  She knew just how to work them.

This was during the 70’s. When Otto Preminger, who directed “Gone with the Wind” objected to an actor on the basis that he ‘was a fairy,’ she looked the old man straight in the eye and said, “No he isn’t. I slept with him myself.”

Mengers had fabulous parties. Everyone who was anyone was there. She launched the career of Richard Gere. Candice Bergen. Gene Hackman and tons of other examples.  She saw something in talent others didn’t see and fought tooth and nail to get them work.

That’s what an agent is for. I’ve begun my agent search for my books. I have at least two I want to write. I gather names, find out all about them and then send out a stealth attack …hoping what I offer is what they’re looking for. But sometimes, agents don’t know what they’re looking for until they’ve been hit over the head with a two by four.

Anyone else looking for a literary agent?

Punk Rock ‘Three Chords and The Truth?’

I heard about an artist, Colleen Green, who says her work is ‘Ramonesque’…i.e., The Ramones. I find stuff like this in the New York Times on the stairmaster at the Y.

Last week, on Sirius’ ‘Guns and Roses Channel,’ I heard all kinds of good stuff that I want to purchase and record. Also heard really good stuff on Jonathan L’s “The Lopsided World of L” Mersey Radio, Liverpool, England.

Jonathan is a former employer of mine at Radio station KFMA and ‘The Q’ both Phoenix, Arizona. You gotta know when someone hires you twice, you have worth in their eyes. This has nothing to do with Bipolar Disorder or Tardive Dyskinesia….it’s what I do to get out of depressive phases, like the one I’m in right now.

Actually doing the work (writing)

anglemegyn

I’m working on a book that’s before its’ time. Tardive Dyskinesia, (soon to be ACRONYZED as TD) It’s centrist and slightly comic as the subject matter is really heavy stuff.

I want it to be an ebook that can be updated when new resources (charities) or new meds or clinical trials become available.

My first 6 chapters are done but there’s a lot of repetition because of memory issues. The truth is I want to get this over with so I can write my ‘main’ story. Or maybe this should be folded into my main story? I just don’t know what I’ve got until I do the work.

Can you just put something like this on your blog? So people can find it when they need to?

Apple’s ITunes Stole 3009 of my songs and I can’t get ’em back!

applworm2

 

Case #100049365971

Ongoing for 8 mos.

Number of times called customer service: 9

Times I had computer nerds come to the house to help (and payed them): 5

Time spent on hold or talking to inept people who can’t fix it: 40

Tears shed over not being able to purchase new music either: 9

Anger over big, faceless corporations taking over matters close to the heart such as health care and music, for starters…big time.

This is theft of 3000 dollars.

Who else sells music?

What recourse do I have, call the FTC?