You’ll Come a Taltzing Matilda with Me

Print Friendly
March 6, 2017 | 20 Comments

Comments

  1. Just this morning a story pops up on MedPage Today: Eli Lilly’s Taltz beats Janssen’s Stelara for Clear Skin (although not for itching and skin pain) in psoriasis:

    http://www.medpagetoday.com/MeetingCoverage/AAD/63603

    Don’t be shocked, friends, but the study was sponsored by Eli Lilly. This market is getting extremely crowded. The story on MedPage Today, which is read mainly by folks in the healthcare biz, came adorned with a pop-up ad: Coming Soon: Guselkumbab! Register Here for Updates! That’s Janssen, the makers of Stelara, getting ready to serve up its next product.

    Either the incidence of psoriasis is skyrocketing … or the profitability of these high-priced biologic remedies is breeding an Open Season on the patient with mild to moderate psoriasis who is not yet under regular specialist care and not yet taking high-priced, high-risk treatment.

    To me it seems like young women are being hunted — and Taltz seems to have turned up the pressure another notch, with a direct appeals to insecurity about intimate situations. Although once again, as with Valeant Pharma’s Siliq, the studies were done on a group that was two-thirds male with an average age of 43, according to MedPage. WTF?!?!

  2. Everyone wants to feel comfortable in their skin, both mentally and physically. Today’s youth are judged by each other on their appearance. Unrealistic artificial beauty is rated, almost above all else. So, a very captive market for the Swagman. Even good doctors and dermatologists who try to warn patients who insist on getting the magic bullet of RoAccutane- isotretinoin or other ‘skin’ drugs listed in this post, will have a job to dissuade them from taking the risk. The god of beauty holds sway.

    If you have acne or psoriasis ( our son suffered both ) the taunting and undermining of self esteem from peers can be incessant and almost unbearable. ROCHE who marketed the chemo drug RoAccutane for acne, insist that acne can make people suicidal. Sure it can. But the weakness of their argument, the fake biology here, is that the young who die by suicide usually have now GOT their much improved skin, but the ‘magic bullet’ has messed up their brain’s rational thinking ability. They are suddenly overwhelmed by voices or thoughts, telling them they need to die, and they act on those impulses before any Matilda could even start to waltz. And as soon as they are dead, they are posthumously castigated as ‘having needed help’. You bet they needed help. Why die when all you ever wanted, the glorious skin, has magically appeared? Answer that one Mr Swagman ROCHE. They needed help, right from the start, not to be beguiled into believing that there are magic bullets. As in the best fairy tales, you sell your soul for a gift from the Devil. And the victim always seems to pay in the end.

    But maybe those left behind are rallying up to raise their game, just like those affected by Thalidomide did. It took those folk 50 years to get some serious ‘listening up’. It has taken RoAccutaners 34 years and counting. But almost five and a half thousand people last week have seen the story of Jack Bowlby who died aged 16 on RoAccutane-isotretinoin, whose 21st birthday would have been on 2nd March 2017. See it on Olly’s Friendship Foundation facebook page, and the talk we gave to 70 or more folk about RxISK.org and particularly AKATHISIA.
    We parents have watched BBC One’s ‘Call the Midwife’ yesterday, we’ve seen what the Thalidomide families felt, and that was in a more honest Pharma world in the 1950s and 1960s, not much mind you, but certainly better than the industrialised mandatory covering up that is par for the course now. So, time to gird our loins and get waltzing, with a vengeance……

  3. Heather, maybe we can take heart at the new interest in the dangers of one drug touted to improve appearance — Propecia (finasteride), which treats “Androgenic Alopecia.” Otherwise known as male hair loss. Propecia works, of course, by playing fast and loose with the patient’s “androgens” or male sex hormones. What could possibly go wrong? Plenty, as you might guess. Including memory loss and persistent sexual dysfunction.

    http://khn.org/news/president-trump-and-i-take-the-same-drugs-except-one/

    Apparently Donald Trump takes it. (We won’t comment on whether Trump has Propecia amnesia, or has been driven into a constant foul mood by sexual dysfunction … who knows.) Anyway, it was damned interesting to read this snippet:

    “In 2012, the FDA made Merck change the label for Propecia and Proscar to warn they may be linked to libido disorders, ejaculation disorders, and orgasm disorders that continued after discontinuation of the drug.

    It may be the first time the FDA has acknowledged the risk of persistent drug-induced sexual dysfunction that is not reliably relieved by stopping the drug. Does anyone know?

  4. We do keep saying, don’t we, that things seem to be moving slowly on – that companies are acknowledging the existence of more possible side-effects than ever before. The problem, as I see it, is that the companies are still way ahead of us and their ‘openness’ is simply a cover for their wily ways of covering their own backs. HOWEVER, we must take heart – the inclusion of these warnings does show that our stance that there were ‘hidden truths’ has, actually, been correct all along.
    Maybe our next aim now should be to encourage ALL to thoroughly read and digest the PIL given with each prescribed medication – and urge them to BELIEVE in the reality of the warnings given therein.

    • Most people think it wont happen to them though Mary plus what do you do if for example you have an infection and your Dr prescribes an antibiotic and you don’t have much choice in the matter but to take it. Most people take the risk in the hope they wont have negative side effects and their ailments will be cleared up and in most cases that is what genuinely happens. It really is a trial and error with medicines. We take the risk hoping it will help but when things go wrong we get the blame, that seems to be the unspoken deal we enter into without even realising it.

      A lot of negative side effects are easy to spot like rash’s and allergy’s e.t.c. but its the invisible ones that are hard to spot that are the dangerous ones like Statin’s causing diabetes e.t.c. How do you know its the drug and how do you know how to spot it early before it does real damage?

      My side effect was not even listed on the pil in this country but it is in America but if you mention that to any lawyer here you get told “Ah but its in a different country and its not allowed as evidence in this country”. The law have an answer for everything believe me and if they cant find a good enough reason to dismiss you their final answer will be “But not in your case” and waffle another round of made up excuses of why not.

      It actually amazes me how many excuses and reasons they come up with up to dismiss your case but the one thing that made me realise the law really are out to protect the drug companies and system is that when their summing up your case they cant even find one good reason to even support your case. They will only ever look for fault in your case that will make you lose.

      Now that to me is enough evidence to show they are biased towards the drugs companies and system. They win you lose unless of course your one of them.

      • You are so right, Anne Marie, it is the way that we all think – that bad outcomes happen to others and not to us – but we know that, unfortunately, at times we too can be the victims. By my comment above, I simply meant that the move by some pharma companies, to now include far more detailed warnings, helps to show the reality of what we have been saying all along – that these prescribed drugs are dangerous.
        By that, I am in no way excusing any of the devious ways that our judicial system cosies up to big pharma – far from it. I find that abhorrent. Laws are meant to protect us whoever we are – they simply do not.
        I do however feel that, to move on, we need to divert our energies away from the wrongs we’ve suffered and concentrate on shaking the general public into realising that each one of them could be THE ONE who will suffer from ingesting a prescribed drug. It happened to us, therefore it CAN happen to anyone of us – regardless of age, gender, race or amount of wealth, the suffering is exactly the same. That is not in any way taking away from what ‘we’ have suffered – it is merely trying to ensure that our suffering is not repeated from generation to generation. If ‘we’ can do that, then we will not have suffered in vain.

        • Do you know what Mary you are right, its best to move on from it. Since Brexit it has made me realise it is going to be far harder to fight our corners here in this country legally. Being in the EU did give us far more legal rights. It was a much fairer system I think to what it will become now in the future.

          When it comes to law in this country it had always been stuck in the dark ages of the Victorian era and sadly I don’t think it will ever change for the better now, not in our life times anyway.

          Its a very depressing reality when you think about it.

  5. Curioser and curioser Johanna. Propecia victims manifest the same kind of side effects as those on RoAccutane. This 2012 admission by the FDA is indeed encouraging. This must surely be a first?
    I wish I understood the biochemistry in all this better. Why on earth do drugs aimed at skin problems and hair loss have to target neurology too? What is going on here? Are they fiddling and twiddling around with DNA? Do they know what they are messing with, are they trying to caterpault people into madness to increase their sales of anti-depressants. Are they really as evil as that? So hard to credit, and yet the results speak for themselves. Hopefully, what goes around comes around, but in the meantime the suffering of millions goes on, partly hidden, mostly contemptuously brushed away. What a horrific mess.

  6. “Grateful to RxISK and Dr. Healy’s guidance.”

    http://www.thepillthatsteals.com/temporarily-stolen#/ian-57-35-1-1/

    I am Darius Ghanat, my health and life have been completely ruined by the side effects of psychiatric medication. I have Tourette Syndrome and was prescribed Abilify off-label by my neurologist to treat my tics. I began to experience side effects so horrific I was not able to leave my house. I was walking around in a drug haze and was in the early stages of Akathisia and Tardive Dyskinesia. The doctor prescribed Zoloft to counteract the side effects which added on even more agonizing side effects of its own. After over a year of living this way, my quality of life never improved, so my family decided that I should get off all medication.

    Withdrawal was hell. I was suicidal, homicidal and would have been institutionalized had it not been for the loving support of my parents. All throughout my treatment and thereafter, my doctor never informed us of the risks nor properly supervised. Years later, I am still severely disabled and homebound by side effects including psychosis, sleep disorders, anxiety, depression and OCD. Also, my tics have progressed to become so bizarre and complex. Whenever we try to seek new help, doctors say there is nothing they can do and they refer me on. Though I am alive, I am unable to live a life. We have been speaking out to prevent these kinds of tragedies from continuing to happen and are grateful to RxISK and Dr. Healy’s guidance.  
     

    • Dear Annie, thank you for alerting us to Darius Ghanat’s story. I have now read it in more detail on ‘Mad in America’, and hope that if he should come to read this comment, he knows how desperately sorry my husband and I about his well described suffering. We loved the cello concerto he has written, and we commend him, both for his musical talent and fir his extraordinary bravery. Raising awareness as he is doing, especially when day to day living is so incredibly hard, is truly wonderful. Our son did not have Tourette’s Syndrome but he was neurologically messed up by the acne drug RoAccutane/Accutane/ isotretinoin. We have recently found, thanks to DH, the site ‘LastingSides’ which has very deep and interesting scientific information about what these psychotropic drugs are doing to brains. Darius points out that neurologists are prescribing antipsychotics like Ablify, which themselves cause tics, and then compounding the damage by adding Zoloft. We incentified so clearly with his description of the black voids in his thinking, the nightmare dreams beyond the horrific imaginings of most of us, the endless shaking, teeth chattering etc. Olanzapine and Zoloft triggered these symptoms when our son was already into full blown akathisia after being advised by a psychiatrist to stop Venlafaxine stone dead! Darius, we really hope there will be a way to get you better somehow, as more and more becomes understood about these drugs, but thank you for having the resolve and wonderful courage to tell us what you are dealing with. Our son died, but had he been able to read what you’ve explained, and known that he was neither mad nor alone, he might well have carried on with life and joined you in raising awareness. He too loved composing music. You would have had a lot in common. Kind friends of ours suggest that we are getting too bogged down in all this awareness-raising and they want us to find light in our lives again. I guess they are wise, but how can anyone not get involved when evil like you have described, and our son died because of, goes on. Not a day passes that I feel overwhelmed with horror, disbelief and desperation about what Big Pharma and some dismissive clinicians are inflicting on lives like Darius’ and Olly’s. How can we walk away from this?

  7. Anne Marie – if prescribed an antibiotic, however much I liked the GP, the first thing we’d do is check it out on Google, and now that we have found RxISK, definitely there. We did this some months back when my husband (76) was prescribed, over the phone by a GP we’ve sometimes seen, Ciprofloxacin for a bladder infection. My husband loves to walk, sail, work in the garden, and is described as being, for his age, ‘in very good condition’ – if we was a sheep we’d say he had good conformation…. He read up about Cipro and how many people had ended up in wheelchairs from tendon damage and he agonised over what to do. Life without activity for him would be grim. If unavoidable due to legitimate crippling illness, well, ok, but not from a drug, thanks all the same.

    So we got through the weekend on cranberry juice, rang the Practice on Monday and tried to speak to the GP, but got a call back from another. He said Cipro was good because it treats c-difficile but we said we had hardly ever taken antibiotics in our long lives so we didn’t need a top of the range powerful one now. This GP said carry on cranberrying and see what happens in a few days. In fact, the whole thing settled down of its own accord. We later read more about Cipro, and realised that it is contra-indicated for the over Sixties!

    One always has the dilemma of upsetting the harassed GP. You have to literally weigh up the RxISK. Is it better to keep your body safe, because it will always be with you till you pop your clogs, or keep your GP placated, because GPs come and go? Some doctors will accept the questioning with goodwill if you do it with a smile and reasonableness, and frankly, if they get annoyed, it’s unfortunate but maybe you just brush that aside and ask to see someone else for a second opinion.

    I just had a very cheering consultation with a heart specialist. I needed investigations, had had X-ray, and other heart checks but the last one, which I had delayed on, was to have an MRI with injected dye. Those dyes give me allergic reactions. We weighed up the risk with him. He said if I collapsed with the dye, they could bring in the Crash team. I said yes but that would mean adrenalin injected and I get ill with that too. In the end we agreed to leave it, but he suggested keeping fit with muscle building exercise, squats, not in a gym, but just normal exercise at home, lifting baked bean cans etc. Good muscle tone in the body leads to good heart muscle. I apparently have a ‘stiff’ heart. We were so impressed with this Consultant, who listened, agreed, enthused, and above all, seemed to genuinely care for our good health outcome. He said I could always return if I was worried, but he thought using these natural measures, for my age, I would be ok. He didn’t rush us, and we left the hospital feeling extremely thankful and optimistic.

  8. Heather we do have to make sure we are also making the right decisions, I agree google has vasts amounts of very good information though which can help in your decision making but we should also still check it out with the Dr’s.

    Unfortunately for me though many years ago there was a campaign to stop people using antibiotics for every cold. The fear was people were becoming resistant to them. My dad at the time had a head cold and mumbled something to me about going to see the GP. I told him about the campaign and that antibiotics probably wouldn’t help for a cold. He decided to leave it, he then died suddenly of pneumonia at the age of 55 a few weeks later. I blamed myself afterwards for quite a while but his post mortem also picked up early stages of stomach cancer that we were not aware of, his immune system was probably very weak at the time because of that.

    I do think we should be very careful when weighing up what is the best options for us. I will always tell people now to go to their GP even if they don’t need to along with any other helpful information I know of from google or the internet. Getting checked out by a GP is still very important, I wouldn’t recommend google alone.

  9. I think it should be about prescribing drugs responsibly, making sure healthcare and patients have the right up to date information on them. Keeping clinical trials honest and transparent and letting people have open access to their trials. Monitoring people on medication properly. Every professional along the chain from beginning to end has an important part to play to lesson harms done.

    Its the fraud and corruption in the system that’s causing the problem. We wouldn’t need to be telling our stories if they didn’t cover up side effects in clinical trials and professionals didn’t blame the patient and side with the drugs companies and prescribed responsibly.

    I’m not anti medication a lot of drugs do save lives but they can also kill and destroy lives if given to the wrong people.

  10. Anne Marie I am so sorry about your father and I do take your point about going to the GP. It’s just that they seem so pushed for time, and to give Cipro over the phone to a man aged 76 when it should not be used for the over 60s was more than unwise, and I was glad we checked it out on Google and went back politely to say we were a little worried about listed side effects and was there anything less strong that could do the job, bearing in mind that we’d used so few antibiotics in the past. But I would never use Google alone either, I totally agree with you.

    The whole NHS system is running fully stretched now and what worries me is that mistakes are bound to happen. My husband has been waiting 3 weeks for a follow up appointment for what could be a quite serious problem. He went along today to his booked appointment and the Receptionist said she had no record of it on her computer (although he booked it in person with her 3 weeks ago after the last session with the doctor) so now he has to wait another 3 weeks, as they are fully booked till then. She was unapologetic (probably stressed out) but he knew he was not mistaken about it, it was entered in his diary at the time. Doctors are stressed out too. Therefore I think we do need to check things carefully ourselves in addition, for our own protection. You are right when you say doctors should be prescribing drugs responsibly, but when time is at a premium, it’s only human nature to cut corners and assume things will be ok.

    • As an American who has been severely effected by Levaquin twice and then put on paroxetine due to the doctors not realizing what levaquin can due to your mind and body I can tell you it is horrifying. Also, don’t believe what you read in our trashy leftist news. I used to not have to pay a dime for my healthcare before Obama screwed it up. My company paid it because it was relatively cheap. Then obamacare came and it went from costing my boss $600 per month up to $1,000. Then several of obamas plans went out of business and ours was one and for the first time in 30 years with my company we were left without insurance due to obamacare. We ended up with new insurance but it is costing my boss $1,850 per month for me, so now He makes me pay $680 per month of it out of my pay. Liberals and leftists completely destroyed our healthcare in the US. I just hope it doesn’t get as bad as your healthcare in Europe or Canada, in the Us if I need an MRI or any sophisticated test for any reason as small as a hurt toe, I can get it in at most a week or less. I go to Canada often and the people there always tell me to make sure I don’t get hurt up there because the wait times and care is awful. And remember, your terrible healthcare is not “free” you are taxed to death over there to cover the subpar care.

  11. This is more for information rather than the usual ‘comment’. Malan Wilkinson has kindly published a piece on her blog (My Blue. Blog) about RxISK. She has also publicised the fact on her twitter page (@malanwilkinson). Since she has over 5000 followers, I am hoping that the positives of the Rxisk website will be spread far and wide! Diolch Malan.

  12. ‘Professor Healy, who runs a website where people report adverse drug effects (rxisk.org), says he is contacted by many patients who have experienced these symptoms.

    Can depression pills sabotage…

    By Katinka Blackford Newman For The Daily Mail
    Published: 23:19, 20 March 2017 | Updated: 23:20, 20 March 2017

    http://www.dailymail.co.uk/health/article-4332998/Can-depression-pills-sabotage-love-life.html#ixzz4bwm73YqL

    David Healy, professor of psychiatry at Cardiff University, believes the true figure of sexual dysfunction on SSRIs is far higher. 

    ‘Most people will experience some degree of genital numbing 30 minutes after taking a pill,’ he says.
    Why might SSRIs do this? Professor Healy’s theory is they damage nerve cells in the spinal cord linked to the genital area.
    ‘We know, when tested on animals, they cause nerve cells in the spinal cord to disintegrate.’

Leave a Reply