Lets do the AbbVie again.

July, 15, 2013 | 11 Comments

Comments

  1. janet williams (@JanetWilliams99)
    15/07/2013 10:22

    @DrDavidHealy The guilt experienced by mums on #epilim when their child has #facssyndrome is traumatic. Women need informed choice.

    Epilim is Depakote – an AbbVie drug – all women who have children with fetal-anticonvulsant syndrome should make their voices heard – there are thousands of children who have been affectedpingr

    • Jane

      You go to RxISK.org and fill up a form outlining any side effects you had on the treatment you are on. This will give you a RxISK report that you can take to your doctor or pharmacist if your problem is a current one to help them help you minimise or stop the problem. If its a past problem, you might encourage them to report also – to add their voice to confirm yours.

      While on RxISK you can also research any drugs you are on and see what problems have been reported to FDA on your drug and where the reports have come from. You might be surprised what has been reported and might in fact find you have been having things happen to you that you weren’t aware stem from the treatment

      DH

  2. From: lesley.kay@newcastle.ac.uk
    Date: 16 July 2013 21:50
    To: EVIDENCE-BASED-HEALTH@jiscmail.ac.uk

    I agree that these side effects can happen. They are uncommon, though, and the benefits are not to be belittled. In the uk it can only be used where other drugs have failed, and we have registers (one for RA, one for psoriasis and one for ankylosing spondylitis) where doctors, nurses and patients (independently) can report side effects.

    I share your scepticism about the behaviour of drug companies in reporting all of their trial results, but honestly we have seen some patients really helped by these drugs when nothing else has worked.

    Declaration: I am a rheumatologist, am involved in the Bsr biologics register for AS and have in the distant past (>3y) been paid to give educational talks by Abbott. And I really care about being able to treat patients with the most appropriate drugs, and helping them to judge risks and benefits of treatments.

    Lesley

  3. I realize there are patients out there with truly severe symptoms and no easy choices, for whom these drugs may be their best bet. But patients have a right to know what risks we are taking, and make decisions on that basis. And AbbVie in effect is fighting to keep us in the dark. At best they want to give vague advisories to our doctors, who will be left to puzzle out when “the benefits exceed the risks” without knowing exactly what the risks are – and will be left to take the blame when things go wrong.

    Meanwhile they are aggressively pushing Humira as a first-line treatment option for AS and RA, and even urging people with “nagging backache” to ask their doctor if it could be AS. I took the AS quiz they posted on http://www.faceyourbackpain.com and passed with flying colors – even though my back pain is mild and there’s not a snowball’s chance in hell I have AS. Young patients in particular are lured to consider these drugs for frustrating symptoms that are “holding you back” even if they’re nowhere near disabling. Some are told that taking these drugs early on (rather than trying other drugs first) can prevent future joint damage. Young Crohn’s patients are being counseled to take these drugs for life, although nobody seems to know how that will pan out. And fit young people with embarrassing psoriasis lesions are beckoned with ads that promise “Clearer Skin Is Possible.”

    It’s good to know the NHS imposes some restraints on prescribing these drugs. I only wish that were true in the US. I hope you’ll stay vigilant – and don’t let the free-market zombies devour your health care system! They are out there licking their chops for sure.

  4. “but honestly we have seen some patients really helped by these drugs when nothing else has worked”

    From what I have read this is a common misunderstanding with healthcare professionals when it comes to subjects like AbbVie vs EMA or antidepressants, or or even the purpose of rxisk. I hear this ‘some people are really helped” argument time and time again as if its relevant. As if asking for all the data will somehow harm these people.

    Even a drug that normally does much more harm than good can be of great help to some people in certain circumstances, but for that to happen effectively then surely the more data the better? Isn’t that the point this whole transparency debate? Isn’t that the point of rxisk?

    Some people being helped does not wipe out the harm caused to others or make the lack of transparency and resulting dodging of responsibility ok.

    Even if it looks like the drug is helping everyone you treat the situation highlighted here should not be ok with you. It should not be ok if you care about giving the best possible care to patients and it should not be ok if you are trying to decide how to spend taxpayer money. The only place it seems to be ok is in the boardroom which says it all really.

    My wife’s CPN to this day would say that Effexor really helped us, even though it nearly destroyed our lives and put my wife on a course of self-destruction. I am certain she fully believes what she is saying, she seems utterly blinkered when it comes to the real risk of harm that comes with these chemicals. When I told her that my wife had a major change in personality she said something very similar to Lesley above…”that side effect can happen but it is very uncommon” followed by…”and I doubt that’s what is happening in this case”.

  5. “…but honestly we have seen some patients really helped by these drugs when nothing else has worked.”

    “some patients”. Good for them. These drugs are supposed to have one and only effect: heal diseases.

    Isn’t it what we are being told?
    It is amazing that expensive drugs that are on the market to, ok. “help” people have to have doctors, some payed buy the labs, claiming that “they help people”.

    I have already read numerous times: “These drugs have been helping millions of people….” back in 2007, 2008-2010 when I was participating in discussions on blogs and sites that are raising awareness about the other millions of people who have been suffering the hell on these drugs.

    The side effects reaches areas that people feel ashame to talk: “I almost killed myself”; “I’m sexually castrated.” and so on…

    These are crimes against humanity and this will be in history as the darkest age of medicine, especially psychiatry which already has on it’s curriculum helping torturing people in totalitarian regimes and other crimes.

    How can a psychiatrist prescribe a drug that induce suicide without alerting the patient? “You will lose your sexual function if you take this drug for a long time.”
    Do they say it?

    “No. This is not a side effect! My other patients do NOT have this problem.” “It’s all in your head.”

    This is what psychiatrist tell their patients.
    Psychiatrists have been prescribing these drugs for more than twenty years and few are reporting the truth.

    I lost all respect for medicine and psychiatry in particular. The mental institution in front of my building is a source of constant horror stories.
    Is it because I live in a third world country? No. This hospital receives researches from Europe because it is considered a center of excellence.
    Of course they are not informed that there are drug dealers that sell cocaine for people who are there treating the addiction.
    They get out of the hospital with Zyprexa at one pocket and cocaine at the other.
    The Zyprexa is being used to easy the down when the cocaine stop working.
    They do clinical trials without informing the patient.
    There are stories told by former employees of… rape. Patients are being rape by… guess who?

    Is it an isolated case? NO! Mental institutions are the same all over the world.
    And psychiatrists remain… silent.

  6. “My wife’s CPN to this day would say that Effexor really helped us, even though it nearly destroyed our lives and put my wife on a course of self-destruction…”

    I have read it numerous times. “This drug destroyed my body, mind and soul.”
    “This drug destroyed my life.”

    I also have the experience with Effexor. It destroyed my life.
    I know exactly what you mean.
    But we are the exceptions.
    “This drug has been helping billions of people.”

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