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  • pharmicists wanted for research


    Launching the RxISK Prize

    Posted: 12 Sep 2017 01:48 AM PDT

    This Prize is part of a two-pronged attack on the unwillingness of the medical and regulatory establishments to listen to people with adverse events in general – not just the sexual dysfunctions mentioned here. The second front in the attack will be unveiled in a few weeks’ time.
    The problem

    The idea for a RxISK Prize began with our involvement with sufferers from Post-SSRI Sexual Dysfunction (PSSD) some years ago, and soon after people with comparable problems following Accutane and Finasteride. The motivation and endurance of those affected has been inspiring.
    A complete and permanent wipe-out of your ability to make love is among the most debilitating side effects of a drug imaginable. In the case of all these drugs when it happens it affects men and women, young and old, can appear after a few days on the drug or only after treatment stops. It can last for decades, perhaps longer. It leads to suicides, the break-up of relationships and job losses. There is no upside to it.
    PSSD shares many common features and looks like it is closely related to Post-Finasteride Syndrome (PFS), and Post-Retinoid Sexual Dysfunction (PRSD) triggered primarily by isotretinoin (Accutane). Isotretinoin is both a serotonin reuptake inhibitor and a 5-alpha reductase inhibitor (5ARI), so it could give rise to PSSD or PFS, or all three conditions may have something else in common.
    We have recently submitted a paper for review describing 300 cases of PSSD, PFS and PRSD, and we are aware of many more cases and comparable phenomena happening on some other drugs. There may be tens of thousands affected as some evidence suggests that less than half of those who have been on SSRIs for months will regain full and normal function.
    There are communities online and linked to universities researching these conditions as vigorously as the AIDS community once got involved in the search of a cure for AIDS. The most successful of these so far have been linked to PFS, with sufferers having created a Foundation to promote research on this condition. The research done by these groups have followed up all of the obvious treatment leads but nothing so far has worked.
    A pharmacological mystery

    The problems need more thinking out of the box. While serotonin and 5-alpha reductase may be where these problems start, they seem to go beyond this.
    The fact that these conditions can appear after treatment stops and endure in the absence of any drug in the body for years is tremendously important to pharmacological science. This is not simple damage in that many sufferers report having temporary restorations to normal. It’s only temporary, but the fact that it happens is both a source of hope and something that in its own right needs explaining. These conditions are one of the central mysteries of pharmacology.
    It is important to crack what’s going on because many doctors were inclined to dismiss PSSD, PRSD and to a lesser extent PFS, especially when it began after the person stopped treatment or when it persisted for so long in the absence of the drug. After an antidepressant, it’s very easy to claim that the problem is all in the mind. At the moment, psychiatrists seem to be the worst of all doctors, with urologists the best, and family doctors in the middle.
    But PSSD, PFS and PRSD are not the only conditions in which there are enduring problems that may only appear after treatment stops. Tardive dyskinesia (TD) following antipsychotics has been recognized since 1959 and no-one thinks this is all in the mind or that it is impossible when it appears after treatment stops. But at the moment, TD has not been linked to PSSD, PFS or PRSD, and fifty years later we don’t know how it happens or how to cure it.
    Another group of problems that share features in common are the withdrawal syndromes linked to antidepressants, antipsychotics and dopamine agonists. Like PSSD or TD, these appear on or after treatment and can last for years, even decades.
    Now that we have a range of different drugs that can trigger these phenomena and can trigger them in different bodily systems, the chances of some pharmacologist or physiologist being able to explain what is going on should be much better.
    Pinpointing the receptor systems or mechanisms involved could transform pharmacology. It would have implications for many drugs and drug development. There is probably a Nobel Prize for the person who can explain why TD or PSSD happens.
    Picture or window?

    You don’t have to know a thing about receptors to be fascinated by this problem and to appreciate that the picture of a patient with PSSD is actually a window on human nature and identity.
    Pretty well 100% of the people who take an SSRI will have some genital numbing within 30 minutes of taking their first pill. We don’t know what causes this. This is a problem right in front of the noses of millions of people. It’s astonishing that we don’t know how this happens. Answer this and we would be half way to finding out what happens to make it endure.
    Another astonishing thing is that many of the withdrawal syndromes from drugs involve burning feet, loss of smell, disturbed balance or other odd sensations. These are features of a peripheral neuropathy. The peripheral neuropathies first appeared in medical textbooks 150 years ago before we knew we had brain cells, but we still know nothing more about how they happen than the day they were first described, even though we don’t have to look inside the body to research them.
    There are good reasons to think there is a lot more of “us” in our skin and genitals and bodies than we are now inclined to think. We are in a brain dominated era and missing out on things that we may not need input from brain experts to solve.

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