Xarelto and Sex

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April 22, 2019 | 17 Comments

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  1. This poor mans experience of persisting sexual side effects post Xarelto and all of the other effects such as emotional anaesthesia, loss of romantic feelings and a loss of a string of other human emotions and pleasures, is very similar to suffering from PSSD.

    These long lasting and persisting sexual dysfunctions take a lot more than just your ability to enjoy sex (Which for me it has completely taken away).

    You can no longer enjoy music because of the emotional anaesthesia, so the emotional affect of music does little to nothing anymore. You can no longer have the emotional response and joy when watching a film you want to watch for the first time. You can no longer look forward and have anticipatory excitement to go on holiday like you used to. You can no longer get a buzz or feel excited when participating in a hobby like you used to. You can no longer feel romantic feelings towards anyone like you used to. You can no longer feel sad when something bad happens like you used to (I felt very little when my father died because of the emotional anaesthesia component of PSSD).

    Then there is all the stigma, and resulting secrecy, and embarrassing sexual incidents and nasty responses from doctors that can lead to feelings of humiliation and emasculation because of the PSSD. Also often estrangement from family members because of fear of awkward questions about why you haven’t had a girlfriend in years etc (I know a lot of people who have become estranged from their families because of PSSD).

    Living with these enduring sexual problems takes so much more than your ability to enjoy sex. It is like living in an emotional black and white world, with all the colour, enjoyment, and fun sucked out. In effect people with these enduring conditions live in a state of emotional and sexual poverty.

    I genuinely feel like after taking citalopram it felt like all of the good feelings I had were sucked out and they have never returned. Sometimes I get fleeting glimpses of what they used to feel like, but then they are gone again. And Citalopram caused this damage with the first tablet I took.

    I could write all day about all the things PSSD has taken from my life. The harm has been so extensive, but unfortunately my time on the library computer is about to run out.

  2. The term. ‘Having all the joy sucked out of them’ is what 11 young people were all united as having said, seperately, to their friends and parents; they were describing what they suffered before they ended their own lives, having had treatment courses of Accutane/RoAccutane/isotretinoin prescribed for them. Now we see Spiro describing it too, and Spruce. They all said, this wasn’t just about pleasure in sex, important as that was. It was about ANY form of joyous anticipation. All gone.

    In our office at home, my computer sat on a bench opposite my son Olly’s. When he was working over here, towards the end of his life, I’d sit opposite him and I’d try not to catch his eyes. There was no smiling in them any more. They were haunted and lost. I’d almost say, he wasn’t in there any more. He clung to computer strategy games in order to go onto autopilot and ease his horrendous pain. Tears would be pouring down his face but he couldn’t talk. His brain was f***ed, he muttered. There was no hope for him. He too had been on escilatopram and then citalopram, then venlafaxine, then Sertraline, Olanzapine, all lobbed in one after another, chasing the tail of RoAccutane. He wasn’t alone in the form of hell he was experiencing, but I didn’t know, and he probably didn’t know either. There were 10 just like him scattered round the UK at around the same time, all struggling like he was, and all destined to end like he did. As can be seen on the Facebook page of Olly’s Friendship Foundation for Easter Sunday.

    We didn’t talk about sex.
    We didn’t talk about anything towards the end. Olly was just an empty shell of what he had been, like they all had been, just as Spiro and Spruce describe in this post. We used to somehow almost silently get through each day, as the inevitable drew nearer and nearer. He prayed not to wake in the mornings. He wasn’t religious but he told me he prayed for death to free him. There was no help out there for him. There is no help out there for any of us parents, left behind, because how could there ever be? We’ve experienced a horror which is beyond explaining, which we try to put away. But Spiro and Spruce are in it NOW, and we MUST find a way to reverse it for them. And the thousands and thousands just like them, who suffer like Olly in isolated confusion. Thank heaven Spiro has a website and is researching, so he can be consulted and found by others on Xarelto. We have one too, and sadly we pick up more and more followers bereaved by RoAccutane or neuroleptic prescribed drugs all the time. But at least they now have a gathering point. Otherwise they would still be wondering why on earth their loved one’s behaviour had become so withdrawn and bizarre. Till they died.

    • Heather,

      Your words are redolent with empathy and I am quite touched by Olly’s story and the loving and sensitive aura I can sense from his him.

      Thank you for being courageous enough to want to help others with your web site, despite your grief. For me, this is the only way to transform a small portion of grief into love.

      Sadly, I can pretty much relate to Olly’s feelings: “He prayed not to wake in the mornings. He wasn’t religious but he told me he prayed for death to free him”—I did write a poem on that in Greek; and another in English that pretty much captures the feeling:

      https://greekpoet.wordpress.com/2019/02/23/tipping-point/

  3. David – would the small group of doctors who you say are supportive be willing to say who they are and meet with people face to face or online via initial contact with Rxisk ? Then they as practitioners would have a greater pool of knowledge to draw on and educate other medics who may be seeing the problems themselves more often than they realise or want or know how to deal with . I know there is on line help on the blog but if a network of interested doctors was published that would expand the network If enough doctors did get interested they could add to the work as a kind of subgroup of researchers at Rxisk while actually practicing. Maybe even leading to using the Rxisk Prize. As Spruce has said – too many doctors are more impressed by someone with status – sad but true. A recommendation/referral from Rxisk to a group of doctors recommended by and trusted by Rxisk – would that be possible?

  4. Bayer in a statement on Monday said it continues to believe the claims are without merit. “However, this favorable settlement allows the company to avoid the distraction and significant cost of continued litigation,” the company said.

    This disgusts me. As if they actually believe this tripe about how the drug hasn’t caused these persisting effects. Grandiose denialism disorder is what the people who work for these drug companies are suffering from.

    Maybe we should get this Grandiose denialism disorder into the DSM and get them sectioned, pump them full of SSRI’s and antipsychotics and then tell them that the side effects are all in their head, or they are making them up. See if that manages to cure their Grandiose denialism disorder.

    And the way they manage to paint themselves as the victims.

    Slippery.

    • Spruce, you made me laugh. In fact, I have had similar thoughts myself, —give them a taste of their own medicine, get a court order for that. Then see how they feel about it.

      When people and big corporations’ only value is money and not compassion, and there are no true “checks and balances” for such attitudes by regulatory authorities, the result is our present day reality: a massacre of genocide-like proportions. And, like genocide, denialism, character assassination and victim-blaming, is part of this filthy game.

    • Spruce -Is there any cure for the G.D.D. (grandiose denial disorder)? Or should they all be sectioned indefinitely.

      • Susanne- it is a life long illness I am afraid.

        It can be treated, but not cured.

        It can and needs to be treated with a variety of psychiatric drugs, and they need to be taken daily for the rest of the sufferers life to keep the disorder at bay.

        Any symptoms if the sufferer tries to stop or reduce the medication, is likely an emergence of the disorder, and is unlikely related to the medication.

        Any symptoms on reducing or stopping medication further indicate that the disorder needs to be treated with medication indefinitely.

        The medications correct a number of chemical imbalances in the brain.

        Try to think of it like how a diabetic needs insulin.

  5. Thebmj is advertising for submissions for another over-diagnosis conference to be held in Sydney in July:-
    ‘Commercial Interests, transparency and independence.’ ‘Help the move towards independence from commercial interests’.
    Thebmj has pretty well been forced to declare that it receives incomes from pharmaceutical companies (and others) – In their declaration of interests :-
    thebmj receives income from commercial interests and sponsors – with a link to annual declarations. There are no details about the income as far as I can see , but maybe there is another link somewhere.
    Most revenue comes from displaying adverts for pharmaceutical and non-pharmaceutical products. No specific information and no call from the editor to put pressure on the companies, to reveal their intentions about publishing ,data at the conference. Not when 2.69 million is at stake
    Just another jolly for the over-diagnosis crowd?.

  6. What about trying to attract research by putting adverts in the publications read by researchers/medics/pharmacologists/neurologists – anybody interested in researching the reasons why people are having severe adverse reactions to prescribed drugs. With a contact for an initial enquiry and then as the next stage further discussion to fill them in with what’s been done by Rxisk already.

  7. Is there a possibility that Heparin is the culprit?

    There is a member of propeciahelp.com who said he has been suffering from severe sexual symptoms, including deterioration of penile tissue, since being prescribed a cream that contains a cocktail of anti-androgenic substances.

    Heparin was one of those substances, and it was later found out that it both inhibits 5-alpha reductase, and acts as an androgen receptor antagonist.

    • Heparin is definitely not the culprit (at least in my case). Its documented sexual side effect is quite the opposite: priapism. In my case the issues started when heparin had been discontinued and I was already 2 weeks into Xarelto.

      Also, I suspect that the unnamed “cream that contains a cocktail of anti-androgenic substances” is a very different product than heparin which is injected under the skin (as the case is with low-molecular-weight heparins currently used for DVT), hence, there could hardly be any connection here.

  8. The drug that banishes baldness can ruin a man’s love life: Hair loss drug finasteride is used by millions, but men say it has devastating side-effects such IMPOTENCE – that can last years after you’ve stopped taking it

    Global market for hair loss treatments is valued at an extraordinary £5.6 billion
    However, the cost for many men is infinitely higher as it can destroy their libido  
    Many people report that Finasteride-related impotence never fully goes away 

    https://www.dailymail.co.uk/health/article-7274057/How-baldness-drug-ruin-mans-love-life-Finasteride-devastating-effects.html

    By Jo Waters For The Daily Mail

    Published: 22:08, 22 July 2019 | Updated: 15:25, 23 July 2019

    To many men, it’s a wonder drug that has helped halt their baldness. 

    Others, however, say it has had a devastating effect on their lives, causing a range of crippling side-effects including impotence, infertility, insomnia, anxiety, depression and, in some cases, suicidal thoughts — even years after they stopped taking it.

  9. Hello Spyros. I have experienced almost to the T what you have experienced sexually and I have sworn up and down to my doctor that the xarelto was to blame-even describing almost word for word your paragraph from my own desires and experience. Can you please email me so I can talk to you more about this and if there is anything you have done to remedy the situation? I’m at my wits end with this issue. Hope to hear from you. -Kyle

    • Please read the sections “Alternatives to Xarelto” and “You have similar issues? What YOU can do to help yourself” on my website. I do not withhold any information, so all my knowledge is there.

      Why do you take blood thinners? Coumarin-like anticoagulants like warfarin are the oldest kids in the block and, although not side-effect free, with good regulation and INR monitoring they have some of the safest records.

      Personally, if I were to switch, it would be a coumarin or heparin.

  10. I am reading that Bayer has applied to the European Medicines Agency for a pediatric indication for Xarelto, based on the results of the EINSTEIN Jr. Phase 3 study. And I think to myself, apart from maximizing the clientele, this is indeed a most astute way to circumvent any sexuality-related side-effects—by the time the children reach puberty and realise that they have no libido or erectile function it will be too late and too difficult to connect the dots and point to the culprit.

    References:
    https://www.medscape.com/viewarticle/915826
    https://www.contemporarypediatrics.com/pediatrics/new-phase-3-data-advances-pursuit-pediatric-indication-xarelto

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