Persecution: Dangerous Liaisons

January, 22, 2015 | 26 Comments

Comments

  1. I was placed on Paxil. Then, for lack of insurance, could no longer afford. This was 2004. This, and other Psychoactive drugs put me in a “failure to thrive” mode. Could not eat, sleep, bathe. My Cats were given for adoption. I made 3 trips to E.R., only one ending up in an overnight hospitalization. My Psych Doc of over 30 years, who had given me diagnosis of Major Depression, Severe and Recurrent, would not see me as I wasn’t insured. Not even a courtesy visit to say why. Finally ended up in Public Psych Hospital, where I stayed about 3 weeks, till stabilized on still more drugs. Fast forward to 2010, when I was finally told that based on my multiple SSRI, SNRI, Tricyclic sensitivities over the years, and they were legend, I was re-diagnosed as Bipolor-Depressed. Had my 1st full blown Mania in 11/14. I had been a Psych RN, cruel irony. I am now on Lamotrigine. A trial of lowest dose, Cymbalta had left me in a condition of SIADH-essentially low Sodium levels. Found in older women, now just being linked to Antidepressant use in older (I am now 64y/o) women. I am left with no alternatives when depressed, but Lamotrigine seems to be helping with both. However, I am still at the mercy of not knowing long term effects. Was at NIH, in Bethesda, Maryland when earliest Clinical trials with Ketamine were being conducted. This demanded another controlled withdrawal from all Psychoactive medications. I learned that Paxil, at that time was awful to come off of. I had been there 3 months, when with BP’s at over 200 systolic, and well over 100 diastolic, Tachycardia, unable to eat, sleep, or otherwise function, I told the Doctor I needed to withdraw from the study. He was not happy. Tried to get me to reconsider. I refused. Later, before discharge, Psych RN’s there confided they were glad I had withdrawn, as they were increasingly alarmed. I was discharged on Cymbalta. Recognized when about 5 weeks later was Hypomanic. This was approximately 2011. A long trek indeed.

  2. Finally found this online, in a dictionary (Collins) marked British — is #15 the sort of “bottom” you’re referring to? It’s a new one on me — not in the American dictionaries at all.

    It’s sad how many good puns can run aground on this rock. I was thirty before I had the foggiest idea that John Lennon’s “a Spaniard in the works” was some sort of pun (had never heard of a spanner, it’s a WRENCH, people!)

    So, is medicine a bottomless pit these days? Sure seems that way.

    1. the lowest, deepest, or farthest removed part of a thing: the bottom of a hill.
    2. the least important or successful position: the bottom of a class.
    3. the ground underneath a sea, lake, or river
    4. (Nautical Terms) touch bottom to run aground
    5. the inner depths of a person’s true feelings (esp in the phrase from the bottom of one’s heart)
    6. the underneath part of a thing
    7. (Nautical Terms) nautical the parts of a vessel’s hull that are under water
    8. (Literary & Literary Critical Terms) (in literary or commercial contexts) a boat or ship
    9. (Commerce) (in literary or commercial contexts) a boat or ship
    10. (Billiards & Snooker) billiards snooker a strike in the centre of the cue ball
    11. (Physical Geography) a dry valley or hollow
    12. (Physical Geography) (often plural) US and Canadian the low land bordering a river
    13. (Mining & Quarrying) the lowest level worked in a mine
    14. (esp of horses) staying power; stamina
    15. importance, seriousness, or influence: his views all have weight and bottom.
    16. (Anatomy) the buttocks

    (Whatever you think of his political views (#15), you can’t deny Winston Churchill had a substantial bottom (#16))

  3. The “learned intermediary” doctrine is a shameful, anachronistic relic of a mid-Twentieth Century American TV model of medicine that has not existed for many a year. It is premised on the notion that modern consumers of medicines are simply too stupid to make wise and informed decisions for themselves. Oh, forget that. They CAN make a decision to ASK FOR a drug, or to take a drug. BUT, they are too naive to decide when NOT to take the drug. Judges and lawyers should be ashamed that this anomaly, and the miscarriage of justice that it frequently spawns, has allowed to exist this long. Our firm is fighting hard to eliminate it. … And we will!

    • I have come to believe myself a partner in my healthcare, and the proactive word “Client” rather than the submissive term “Patient” In this day and age, it is after all a “Business Relationship.” Managed Care has taken care of that! Also, Physicians give you more respect if you make your designation clear, and not up for negotiation. I do quite a bit of Research now, especially regarding drugs that a Physician prescribes. I can not count on them to know everything about every drug out there, and few demonstrate interest in Supplements as they should. Also about Procedures before they take place, not after. Gone are the days when your Primary Physician, who knew all about you was the leader in your health care. Now their are Hospitalists managing your care, and one rarely sees the same one twice. One needs to take a Proactive approach to their own health care.

    • Regarding Andy Vickey’s comment, yes, “a patient can ask for the drug, but are too naive NOT to take the drug” begs the question, since when does a patient dictate to a physician, hopefully a Psychiatrist, not an internist, or other Physcian/General Practioner, who should NOT be prescribing Antidepressants of any sort, or Benzodiazepines, as are not qualified? Either the Psychiatrist/other prescriber, is woefully uninformed, or allowing patient(s) to dictate care. But to suggest patient NOT take a drug he/she has asked for, is not what I would expect. Other parts of his post are appreciated, and taken as Andy’s intent. Particularly, his comment regarding his”firm’s intent to work hard. Yet he does not specifically state which firm he is with. Still, I am gratified that his firm is taking a stand. Perhaps it is I that is uninformed, as may have missed Mr./Dr. Vickery’s in the past.

  4. Bravo Mr. Vickery! Just one thing to add:

    GSK has a special kind of nerve to say that the patients’ right to **know their own diagnosis** is subject to their doctors’ discretion as to what they ought to know for their own good. In most of the world, that’s regarded as an antiquated, patronizing and even dangerous doctrine which belonged on the scrap heap a long, long time ago. Even when the patient’s a child, or considered incompetent for some reason, the parent or guardian has a right to know. And these “Paxil kids” grew up a long time ago.

    Not knowing puts them at risk for taking SSRI’s again, which they should clearly be warned not to do. Not knowing also increases their risk for suicide, and that of their children as well. Nothing makes the act come so naturally to mind, as having that bleak precedent in your own life or your family’s. GSK saddled them with an inaccurate and potentially damaging life story which they should get the chance to rewrite.

  5. A lot of patients feel that they have been left in a bottomless pit quite apt then that they were left there by a bottomless shit.

  6. Thank goodness you guys make me laugh, don’t want another day sinking into the custard…my doctors did not tell me one joke…it might have cheered me up…po- faced and humourless. Is Andrew Witty a laugh a minute person around his dinner table…I wonder how he does entertain his dinner guests…………?

    I am still tittering about Snoopy in Furs……

  7. Let’s call today Fun Friday..

    Have you heard the one about when Clare and Gisela met David?

    IAI – Docs in the Doc

    http://iai.tv/video/docs-in-the-dock?utm_source=Institute+of+Art+and+Ideas&utm_campaign=5998b1fef5-IAI+Weekly+Newsletter+22%2F01%2F15&utm_medium=email&utm_term=0_33593fe9fa-5998b1fef5-47027401

    Loved the Sunflowers – in the vase…

    She said “the patient has to take some responsibility for taking the pill as they are the ones swallowing it”……..that takes the ‘proverbial’ biscuit.

    • What was missing in that debate was the patient! Shame they weren’t there. Annie point’s out one of them as saying “patients have to take some responsibility”,That’s very easy and convenient for a qualified Dr to say who’s studied medicine for over 7 years but very hard for someone with no knowledge at all let alone someone who is drugged up to the eyeballs in a daze of confusion not knowing what the hell is going on.

  8. I wrestle with my outrage, disgust and heart wrenching grief for the behavior and attitudes of GSK, AACAP journal editor Mina Dulcan, Dr.Keller– ALL connected with the scandal of study 329 exhibit *depraved indifference for human life*. – No prosecution –forget retractions and apologies, is another scourge.

    As I continue my crusade- speaking out and trying to educate former colleagues, I am grateful for the mood altering experiences I have with my grandchildren– and the prospect of impacting the sensibilities of a generation (mine) of *bad doctors* who have sequestered themselves behind a wall of silence– and like a predatory pack have no conscience for the loss of life that sustains their survival.

    Over xmas *school break* I introduced my grand children to another of my own survival tactics- music, dance, film. Ironic , I think ,that my 8 year old grandson was drawn to a song by the band “Queen” that was number one in 1980, because this song, “Another One bites the Dust” is described as “dancing a line between gun fights and failed relationships”– to me, it speaks to the truth of the myriad ways psychiatry and Pharma have targeted and destroyed children. When my grandson began to sing and then perform it, I was at first gratified that he was internalizing the essence of my favorite *rock star– the ultimate show man, Freddie Mercury*– but as regular reader of Dr. Healy’s posts and comments here, I began to see 8 year old Cae’s performance as a symbol of what his generation is facing for what my generation has not *put right* .

    I am sharing the video, which is posted on You Tube, here– dedicated to the aforementioned criminals involved with Paxil Study 329– and ALL who believe this *scandal* will just go away—

    http://youtu.be/tXd92scpmXc

    Cheers!
    Sinead

  9. in the spirit of Annie’s *Fun Friday* 🙂

    “It’s all about Bottom”–DH

    -” Bottom”?– this term is bound to conjure up more evidence of the medical practice- cultural divide between the US and the UK– as Johanna points out, the reference to leadership/judgment is not in American dictionaries– and though I have no data on the likelihood of misunderstandings, I can offer an apt anecdote to support this point.

    Some 34 years ago, I worked briefly, as a temporary replacement/ RN in the private office of a doctor who owned and operated the first for profit hospital in the area where I grew up. One afternoon, while waiting for the doctor to arrive to see patients I had been appeasing and placating for over an hour, I slipped into the back office and passed the time with the office secretary, and office manager– both women, older than me– and the only employees who could maintain employment and civil relations with this particular doctor. They were *experts* whose advice and counsel was entertaining, but not information I wanted, since I couldn’t wait for my temporary assignment to end. The secretary was fuming in a half hearted manner , having just received another call from a patient whose message she had placed on *doctor’s* desk the day before. *Doctor* routinely ignored her meticulous efforts to communicate requests from patients.

    “What do I have to do to get *doctor* to read my messages?”, pleaded the overly dramatic secretary–

    The office manager replied,
    “Tape them to *Sinead’s Bottom*.”

    And there you have it–

    😉

  10. The Picture that Healy paints is not a very pretty one. Doctors who are but a one way instrument of the pharmaceutical companies. The doctor gets told what to say and what to prescribe, not by experience or knowledge, but from keen sales representatives from Pharma.
    It takes alot to bite the hand that feeds you, so the doctor hesitates or just refuses to alert Pharma when he suspects an adverse event.

    The more videos I Watch and the more blogs I read the more dumbfunded I get.
    How can so many GP’s, Psychiatrists, Medical Scientists or other Health care workers go along with a system that is fundamentally flawed?

    All the ties to Big Pharma are in plain sight, but still they press on as if their “science” is conducted ethically or morally correct!

    To lie and deceive is the standard.

  11. Thanks for posting that link Annie. I really enjoyed watching it. I thought it was a very good debate.

    I have to say I think DH is good at interviews and debates.

    I love his common sense attitude and how he gets the truth across in such a calm, dignified and humorous way that everyone can understand.

    He doesn’t blind with science and gobbledygook.

    He’s got bottom.

  12. Adverse reactions are in fact recognised by my GPs’ but they never get reported or added to my notes, which I feel should be done automatically. There is a gap within the system which I feel should be filled in the administrative side of medical practice:) It is quite awkward to complete a RXisk form and take it along to the Doctor – who has actually acknowledged an adverse effect – it is just there is nowhere for him to record it – or is there? Confused:)

  13. You would hope that all doctors were meticulous about record-keeping and more, importantly, reading thoroughly every scrap on information that came their way.
    I don’t know if I was an isolated case, in this respect, but, nothing was read when vital letters arrived concerning me, from, hospitals, and certainly never discussed with me.

    The RXisk report will be filed in medical records, awkward, or, not, and there it will sit.

    In an ideal world each surgery should have a RXisk Data Sharing Facility…ie each doctor have a RXisk Report flagged up to other doctors in the practice when it arrives.

    Perhaps, use it as a Yellow Card Reporting system to the MHRA?

    If you always see the same doctor, and, your RXisk Report is filed away, the chances are it might gather dust….

    I think one of the most important parts of a modern surgery should be the sharing of vital information, as, one, doctor, could be behaving badly and this behaviour should definitely be flagged up…it is very dangerous that one doctor can be accountable to no-one…..

    It is already dangerous that important information received from other parties, in any medical situation, may not be Flagged Up.

    It surely should be a legal requirement for doctors to Flag Up…not use outdated human error filing systems which can be the difference between life and death for the unwitting patient…..

    The point of RXisk is data sharing and no patient should be embarrassed, apologetic or humbled in to daring to, perhaps, bring in a more qualified account of adverse events than any doctor is aware of…..or, even, aware of……

    No one should have to resort to telephoning The Samaritans when doctors have nearly killed them…..it is a much better idea to fill in a RXisk Report.

    Middle of the night – August 2002

    Samaritan
    “Are you suicidal?”

    I have never been suicidal…

    Shirty Samaritan
    “But, you just said you were suicidal”

    I don’t know why I was suicidal.

    Vexed Samaritan
    “I can’t help you if you don’t know why you were suicidal”

    I have just told you I have never been suicidal.

    Exasperated Samaritan
    “Samaritans are here to help suicidal people, if you don’t know why you were suicidal it is impossible for us to help”

    Just forget I called, ok, just forget it……..

    Thank you, Samaritan…really, really helpful……….I guess waking up a Samaritan wasn’t my best idea………..

    Waking up a doctor, with a RXisk Report seems a better exposé.

  14. It is a funny thing but my GP acknowledged a side effect caused by a drug I was on and set about weaning me off it to great effect. The funny thing is I don’t think it was ever recorded and now I know for sure my side effect was definitely caused by the drug because the symptoms have disappeared! But – a big but – who will ever remember UNLESS I mention it again to the GP? It hasn’t been placed in my notes – this is a loophole that could have consequences If I don’t remember to mention it to A Doctor when the drug I took is ever tried to be prescribed for me again:) Yes I suppose a Rxisk report should be given to the Doctor – will it ever be looked at again I wonder?:) Rxisk reports should be automatically completed by Doctors instead of just the nod of the head which Is what you are inclined to get at present:) Rxisk is attempting to fill the loophole system but it should really become compulsory for Doctors to record side effects in a prominent place::)

    • Totally agree. However, somewhere along the line I missed how one files a Rxisk Report is filed, and then obtained to give to my Healthcare Providers. If anyone could enlighten me, I would certainly appreciate. I have very pronounced effects to certain medications, such as recent high dose Steroids over prolonged period of time, resulted in Mania due to my Bipolar Diagnosis. There are others, too, I should never be placed on. Docs do not pay much heed, indeed seem to resent my proactive approach. My Psych doc excluded, as he seems to be impressed with my knowledge, and research ability, and follow through. But please tell me where to go, and how to obtain one of these reports. Thank you

      • Donna

        Thanks for asking. A key point behind Rxisk is RxISK reports. You go into report a problem on a drug and work through the questions, coding what has happened to you as you go and taking the algorithm that generates a score to tell you and your doctor how likely it is that the drug contributed to the problem. When you get to the end you have an option to generate a RxISK report – this is a 3 page letter to take to your doctor outlining the problem and its timeline relative to treatment.

        The hope is s/he will work with you on this and will either agree about the link or disagree – you can send her/him a link to your report and they can add their point of view. If two people both think the drug is linked to the problem this is very strong evidence it is. If s/he disagrees, s/he might be able to give you and us some useful novel angels. But ultimately the fact that this report exists at all hopefully means s/he will engage with you more – compared with simply verbalizing the problem there is less chance hopefully of being blown away – or powered over. If a record like this exists and you are injured in part because you weren’t listened to,…..

        David

  15. May be a slip of the keyboard, but, novel angels is first-class!

    This is tricky for me as to what I do with a ‘historical’ Rxisk Report.
    It won’t be going to my doctor, as she is deceased.
    The Clinical Director, of a nearly hospital, was quite jocular about my deceitful gp being deceased as if that was the end of the matter…..as far as I am concerned this is not the end of the matter….Jimmy Savile remains dead.
    The CD was guilty of covering the back of his incompetent associate who made too many mistakes to be credible.

    It might go elsewhere.

    My Rxisk Report, when I log in is visible as a summary and I was wondering what happens to it now and do I receive a report from a Rxisk doctor?

    Thank you from a near miss novel angel…………….and I apologise if I have failed in some way with the reporting system.

    • Annie

      There are lots of sites that give information about Drugs, like Drugs.com. RxISK is about challenging the power of a system that declares itself to be working for us – and revealing that its not – and in the process helping doctors get back to where they wanted to be when they entered medical school – but most importantly changing a culture so that we and our families and our wider communities are less at risk from a system that feeds on us.

      A nice phrase to catch what happens to lots of us visiting doctors is we are powered out – its about reversing this. This is what RxISK is about.

      There is your historic report but also when you or anyone goes on some new drug now and has a new problem we are hoping you will generate a report, take it to a doctor and help us all pick out the doctors who listen from those who don’t – and give feed us back accounts of the interaction with doctors as Sara Bostock did in Fear of Falling and Laurie Oakley did recently

      David

  16. Sorry but I have a bee in my bonnet about this – what happens to the Rxisk report when it is handed to the Doctor please? I noticed my GP seems to record things on his computer more than having paper files – so – will s/he record about the Rxisk report onto my file or do I have to ask for him/her to do it? Every Doctor has their own individual way of doing things which is why I think it should be compulsory for all Doctors to record side effects in a place where they can be viewed quickly, otherwise you are relying on the patient to mention previous side effects to their Doctors because any previous concerns have disappeared into the ether.

    • The key thing with a rxisk report is does your doctor do something. Fifty years ago when a mother mentioned her baby – child didn’t seem right the system often brushed her off – we doctors know best. Now all books on these issues stress listen to a mother if she thinks something is wrong even if you can see nothing.

      At the moment the system brushes off people when they try to say things don’t seem right. We figure in 20 years time the books will all say – listen to someone if they try to tell you things aren’t quite right.

      In the meantime, if your doctor doesn’t listen to you, you might need to change doctor. Having a RxISK report that you’ve at least tried to give him puts him into a Russian roulette position – he is gambling on things not going wrong rather than doing the sensible thing and working with you

      JLN

  17. Yes Dr Healy -Thank you – I see entirely what you are saying The Rxisk report does place you as a patient in a much stronger position . I am fortunate that My GPs are listening and work with me. I need to check with them next time I see them to find out if my records have been updated with the side effects I have experienced:)

  18. Dear Dr. Healy,

    Over 70% of paroxetine studies registered at ClinicalTrials.gov (completion date before January 1st, 2011) remain unpublished.(1)

    After reading this and other posts in your blog, I also became curious about GSK unpublished studies, here is some preliminary data:

    ClinicalTrials.gov – advanced search terms (search date: May 2, 2015): Closed Studies, GlaxoSmithKline.

    Number of study registries (n) = 3426

    Filter: ‘Completion Date’ (*) before January 2014.

    Number of study registries (n) = 2889

    (*) ‘Primary Completion Date’ if ‘Completion Date’ is not available.


    PubMed expert search query – GSK study records:

    – Records not found (i.e., unpublished – require confirmation in other databases – ) = 2111 / 2889

    Records found (i.e., published) = 778 / 2889

    Number of articles = 944 per 778 ClinicalTrials.gov study registries (more than 1 paper per published study registry)

    Other search queries are necessary for a more precise estimate of unpublished studies (e.g., Embase, Google Scholar, EBSCO, others). In addition, more records can be identified in different registries (e.g., EudraCT, Chi-CTR, others) and platforms (i.e., WHO ICTRP).

    About (I will quote a paragraph from your post):

    “The information in controlled trials has two components. One component is the data that is collected and should always be public or else medicine is a tyranny. The second is the interpretation put on that data – the spin if you will.”

    Comments:

    – I think that these two information components can be also applied to the understanding of other types of studies (e.g., cohort studies, analysis of registry databases, cross-sectional studies, others).

    – About open data: I agree (“…should always be public or else medicine is a tyranny.”)
    http://chaoticpharmacology.com/2015/03/16/question-should-scientists-share-their-data-a-yes-b-no-via-epmonthly-figshare/

    – “The second is the interpretation put on that data – the spin if you will.”
    Re: I think that numbers should speak for themselves (example above with the GSK ClinicalTrials.gov data).

    Sincerely,

    Jorge

    References

    1. Re: Putting GlaxoSmithKline to the test over paroxetine (Dec 11, 2014)
    http://www.bmj.com/content/347/bmj.f6754/rr/816737

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