The plan this morning was to continue coverage of the Opioid Epidemic but perhaps because it is Halloween a link to a Wall Street Journal story on how Drug Makers Turn Cheap Generics into Expensive Pills arrived by email. It was difficult to resist. Here’s why.
The article features Treximet, a combination of sumatriptan and naproxen, used for migraine. These two drugs are ancient. They come from the last millenium and should cost almost nothing. But Treximet is retailing at $750 for 9 pills. The two drugs as separate ingredients can be bought separately for next to nothing.
This hike in price is heading toward the 5000% hike in price Martin Shkrelli hit the headlines for when he jacked up the price of Daraprim a year ago. This was noted at the start of a series of posts on Pharmaceutical Rape by Laurie Oakley.
Pernication
Behind Treximet lies trials comparing the combination to sumatriptan alone and to naproxyn alone and to placebo showing some benefit it seems – if these trials can be believed. The trials were run by GlaxoSmithKline, for whom sumatriptan had been a flagship drug for decades, and Pozen Inc. Once concluded, in 2014 GSK transferred the rights to Pernix.
This smelt fishy to RxISK’s super-sleuth Johanna Ryan. What’s going on here? In related posts she also fingered the weight loss med Qsymia as egregious and both as indicators of something new this way coming and Qsymia features in the WSJ article also along with Duexis for pain, as price gougers extraordinaire. The new development seems to find new painkillers and new weight loss meds fertile ground. Regulators seem all too happy to license ever more dangerous variations or combinations of older drugs in these groups already on the market and causing serious problems.
This willingness has offered an opening for financial speculators to make a killing speculating on the likely profits these drugs could yield and getting out of the game before much happens. Pernix may be primarily an umbrella for some smart speculation of this sort. It certainly doesn’t look like a pharmaceutical company or anything to do with the actual delivery of healthcare.
Martin Shkrelli has since made it clear he’s been taking Efexor, and it made him feel so good, “invincible”, that he figured people will be more than willing to pay pretty well any price for these wonders of modern science.
Begs the question as to what the regulators in FDA are taking.
It’s more complex with Andrew Witty. You’d have to think GSK didn’t run the trials of Treximet just to hand it over to Pernix, no strings attached. What is the business model here. Is it Rape or is it Pernication? What drug do I have to be taking to make it work?
Mi Grain and Your Grain
When trying to get Study 329 published, we ran up against Liz Loder in the BMJ. She seemed completely resistant, stating on many occasions that we were biased – had conflicting interests. The article only got published after a conflict of interest duel. We wrote to the editor, Fiona Godlee, laying out Dr Loder’s possible conflicts. BMJ have never offered a satisfactory response to this letter.
The main conflict lay in Dr Loder’s husband working for a law firm, Ropes and Gray, who have worked on most of GSK’s recent difficulties including in relation to Study 329.
But in addition we pointed out that:
Dr Loder has made public statements favourable to GSK products, including: ‘For all of these reasons my mantra is that “You haven’t failed sumatriptan until you have failed to respond to a full dose of injectable sumatriptan given early in an attack!” There is also evidence that combining a triptan with an anti-inflammatory drug might improve the likelihood it will be effective’.
(http://live.washingtonpost.com/how-serious-are-migraines.html)
This article was published just before GSK’s Treximet (combination triptan and anti‐inflammatory) came on to the market – years after Dr Loder was supposed to have renounced all links to companies and their marketing.
Trick or Treat or Treximet?
Once a drug ends up causing grief — either for its adverse effects, or simply for its inflated U.S. price — it can be hard to figure out to blame these days. The kind of shell-game played by Pernix and GSK with Treximet is becoming ever more popular. In some cases, like this one, an established drug company like GSK develops the drug (including trials) then sells it off to an outfit like Pernix that’s mainly just a marketing company.
GSK sold Pernix the rights to Treximet for “an upfront payment of $250 million and other considerations” in 2014 — including a “long-term supply agreement” under which GSK will continue to manufacture the stuff:
https://www.firstwordpharma.com/node/1210290?tsid=17
In other cases, a “startup” is formed to develop the drug and conduct the trials — after which the startup is bought by a larger firm and essentially disappears. That’s what happened with Addyi, the dubious new pill for “female sexual dysfunction” that made headlines last year. Sprout Pharmaceuticals bought up the drug, which had failed to make the grade as an antidepressant, and ran the trials. They carried out a huge PR campaign hailing it as some sort of feminist advance and accusing its critics, at FDA and elsewhere, of sexism.
Once it was approved, Sprout promptly sold itself to Valeant Pharmaceuticals and disappeared. Valeant, already much-hated for its obscene price hikes on old generics, was left holding the bag when actual prescriptions for Addyi slumped to embarrassing lows. If you are harmed by this drug — say, by passing out at the wheel of a car — you will have to chase Valeant. The former owners of Sprout already got paid and got out.
Begs the question as to what the regulators in FDA are taking.
Here We Go..
http://www.dailymail.co.uk/money/smallbusiness/article-3885680/Former-Supergroup-boss-set-pep-online-GP-service-Push-Doctor.html
Try us today for £1
Join thousands of happy customers. Your first appointment is only £1.
https://www.pushdoctor.co.uk/
https://patient.pushdoctor.co.uk/see-a-doctor-2/select-time
‘this looks spooky’
Actually that’s quite a good website, saves waiting for two weeks and then having to go out for an appointment. It would be even better if they got the pharmacist to drop the drugs round as well.
The Right Night for the Right Knight..
http://www.billiamjames.com/
Amazing.
Isn’t this a bit fishy as well?:
A spokesman for Pernix Therapeutics Holdings Inc., which sells Treximet, said… Mrs. Jack could get a pack of Treximet for $20 by contacting the company directly.
Let’s hope that the majority of people, either cannot afford, or, choose not to pay, the silly prices being put on this combination! I bet GSK have some trick or other up their sleeve – let’s hope we are wide awake and waiting for their next step, whatever and whenever that may be.
About that “Vimovo” pill, available for just $2,061.00 a month:
It’s made by AstraZeneca. It’s naproxen, an ordinary NSAID you can get for about $7 a month over-the-counter … combined with Nexium, their blockbuster Proton Pump Inhibitor to fight stomach upset. A drug 99% of us are MUCH better off without.
AstraZeneca just publicly threatened to leave the UK if the NHS didn’t start paying for more of its life-saving miracle drugs.
http://www.telegraph.co.uk/business/2016/10/31/big-pharma-will-pull-out-of-britain-unless-we-start-paying-for-n/
It pitched this fit with reference to cancer drugs of course — but here again we are getting loads of new drugs that cost up to $300,000.00 without any proof that they actually extend life expectancy. I guess GSK is not the only British drug company that would rather you not know what they’re up to in the good ol’ USA ….
“old wine in new flasks”
http://www.communitycatalyst.org/blog/glaxosmithkline-sets-out-to-dupe-migraine-sufferers-with-treximet-smoke-and-mirrors-pal#.WBhQSIXXJn0
Conclusion: Migraine sufferers, don’t be suckered by Glaxo’s poorly-concealed bait and switch.
7:01 AM 28 Dec 1919
http://www.proactiveinvestors.co.uk/companies/rns/080416gsk4303s
Here in the UK, Jeremy Hunt ( Health Minister) is apparently ‘about to pass a new law which stops companies overcharging the NHS for everyday medicines’ according to Change.org. In June 138,000 signed a petition demanding that JH shut down the loophole that let companies overcharge the NHS by millions. We also contacted our MPs who were fully behind the petition. We’ll keep you informed of ‘people power’ results – or the lack of it!
I think you mean this one; great, Mary.
12,500%
https://speakout.38degrees.org.uk/campaigns/close-NHS-drugs-loophole
Why is this important?
A small number of greedy drugs companies are exploiting a legal loophole that lets them hike up the price of everyday medicines and rip-off our NHS.
At a time when the NHS is in a funding crisis, it’s unacceptable that a small number of dodgy businesses are deliberately draining the NHS of millions of pounds. That money could be used to provide the care that our friends and family need.
Please use your power as Health Secretary to close this loophole and stop drugs companies ripping off the NHS.
http://www.thetimes.co.uk/edition/news/victory-against-rip-off-drug-firms-after-times-investigation-qm6hlmqts
The Health Secretary has called on the Competition and Markets Authority (CMA) to look into evidence that suggests some companies profited by raising the cost of more than 50 drugs by up to 12,500%.
https://www.politicshome.com/news/uk/health-and-care/pharmaceuticals/news/75750/drug-companies-face-investigation-over-nhs-prices
Yes, Annie, that’s the one. The message from Change.org yesterday was very positive – just hope we’re not disappointed with the result of the ‘investigation’!
… in California
Backers of the Yes on Proposition 61 measure rally in downtown Los Angeles. Drug companies have a major stake in the measure and are spending heavily to defeat it.
https://www.statnews.com/pharmalot/2016/10/31/drug-prices-california-ballot/
Bernie S. Senator
Rally
http://www.yeson61.com/
All Souls’ Day..
International Business | China Rules
Drug Giant Faced a Reckoning
as China Took Aim at Bribery
China sought to make an example of
GlaxoSmithKline in a case that involved
bribery of doctors and investigators and
ended with guilty pleas and record penalties.
By DAVID BARBOZA NOV. 1, 2016
http://www.nytimes.com/2016/11/02/business/international/china-rules-glaxo-bribes-sex-tape-whistleblower-cautionary-tale.html?smid=tw-share&_r=0
@GSK
GSK @GSK 2h2 hours ago
Why is clinical trial #transparency important and what are we doing to make our data more accessible? http://gsk.to/1QvWcBX #IBE30
Watch our CEO
http://www.gsk.com/
All Souls’ Day..
2 NOV ALL SOULS DAY – CALL TO ACTION FOR A CANDLE VIGIL FOR LIVES LOST TO PSYCHIATRIC DRUGS – If you have lost someone to psychiatric drugs, please light a candle tomorrow next to a photo and post on social media. This idea came to me from Heather and David Roberts who lost their son, Olly, after years of being prescribed a combination of acne medication and psychiatric drugs. Attached is their tribute and I hope people around the world will join them with their own tributes #rxharmed
David Carmichael Candle vigil for my son Ian on All Souls Day #rxharmed
https://www.facebook.com/hashtag/rxharmed?source=feed_text&story_id=293301727736192
https://www.facebook.com/profile.php?id=100011691003465
Smile..You’re on Candid Camera..
https://www.madinamerica.com/science-of-psychiatric-drugs/
Handy Andy..
http://fortune.com/2016/11/02/glaxosmithkline-witty-brainstorm-health/?xid=soc_socialflow_twitter_FORTUNE
Pharma can help the poor and still make money!
Sure they can, they have already been doing that for god knows how long. Antidepressants, anti psychotics, benzo’s and anything else they want to throw into the mix.
Mass Murder is what they have been really doing on a very large scale with the poor and making billions from it.
Kind of embarrassing..
http://www.alltrials.net/news/trialstracker
uab9876 @uab9876
@CoyneoftheRealm @PLOSONE But I think Goldacre is only interested in bashing industry hence #alltrials doesn’t talk of academics not sharing
8h
https://www.statnews.com/pharmalot/2016/11/03/clinical-trials-sanofi-shire-glaxo/
Last year, however, researchers sifted through newly released GlaxoSmithKline data for its Paxil antidepressant and found evidence7 contradicting the company’s published findings that the pill was safe and effective for youngsters.
http://www.gsk.com/en-gb/media/press-releases/2016/gsk-statement-in-response-to-new-york-times-article-on-china/
GSK statement in response to New York Times article on China
02 November 2016
Issued: London
These matters relating to our operations in China were deeply disappointing to GSK. They have previously been the subject of investigation by authorities in China and the United States. GSK cooperated fully with those investigations, which have since concluded and been resolved. GSK is committed to operating its commercial activities in an ethical and professional manner consistent with the Company’s values. Over the last few years, GSK has made significant changes to its commercial practices globally, which include changes to the way the Company’s sales representatives are compensated and stopping payments to Healthcare Practitioners to speak to other providers about its products.
More information on our business model changes is available here:
http://www.gsk.com/en-gb/behind-the-science/how-we-do-business/changing-the-way-we-work-with-healthcare-professionals/
Today Bernie’s vendetta with the pharma industry was in the spotlight again, when moments ago Sanders tweeted that “the business model of the drug industry is fraud. Glaxo put patients at risk to increase their profits”
Bernie Sanders
✔ @SenSanders
The business model of the drug industry is fraud. Glaxo put patients at risk to increase their profits.
http://www.nytimes.com/2016/11/02/business/international/china-rules-glaxo-bribes-sex-tape-whistleblower-cautionary-tale.html?
2:31 PM – 2 Nov 2016
http://www.zerohedge.com/news/2016-11-02/glaxo-slides-after-bernie-sanders-tweets-company-put-patients-risk-increase-profits
In kneejerk reaction, the ADRs of Glaxo stock immediately slid to session lows as yet another shot across the bow of the pharma industry was launched by the prominent democrat
There is so much ‘wrong’ with this, it’s hard to know where to start..
https://www.change.org/p/secretary-of-state-for-health-jeremy-hunt-make-pharmaceutical-firms-help-users-who-want-to-stop-taking-anxiety-depression-drugs/u/18373616
http://www.jfmoore.co.uk/styled-5/
A GP should be nowhere near psychotropic drugs
Within 6 weeks the patient could have ‘disappeared’
GPs’ don’t need support, the patient does
PIL leaflets are legally conscripted documents
RCTs’ are available
Tapering kits are not in the Pharma mindset
Other suggestions for help and support:
An online portal where users can get accurate information on stopping or reducing prescription medications with online chat access to health professionals (g.p/psychiatrist/pharmacologist).
A forum for users seeking support, perhaps moderated by healthcare professionals.
A dedicated user group that can use real experiences as a basis for future action/investigation.
Make visible information on the long term risks of psychoactive drugs including publishing all available long term studies (e.g. opentrials.net)
Keep a central database of drug withdrawal effects for reference and future study, allow reporting of withdrawal effects via the yellow card scheme.
Dedicated helplines should be provided and funded by pharmaceutical companies for users of their products.
https://davidhealy.org/
and
http://rxisk.org/
Seem to be Missing…
Deadicated Helplines never helped anyone..
Like you Annie, I too am disappointed with James’ points and suggestions. His idea of ‘tapering kits’ was a really good one as it’s quite impossible to reduce in small enough steps just relying on the tablet strengths provided at present. The same meds. in liquid form are extremely expensive and so, diminishing strengths in tablet form are necessary. Also, the liquids have a ‘use by’ date which is restrictive (and possibly wasteful) at times. Maybe James should have continued to push for the tapering kits for the time being – and take time to fully think through the way forward with anything further, once he’s managed to complete his first ‘mission’.
I think his looking for a 24 hour helpline or online helpline with professionals. It wouldn’t be a bad idea really, anything and everything will help. There needs to be somewhere where people in distress can turn too when their normal services are not up to the mark. Maybe he may feel its best to hit them with everything now before they close the door on him.
My main problem with his points is the fact that I feel he’s far too cosy with the pharma groups. Yes, we need the pharma companies to support the tapering kits and yes, we SHOULD be able to trust their role in other aspects ( not sure that we can though!) and yes, a 24-hour helpline would be fantastic BUT – how can we be sure that the service will be impartial; would a ‘professional’ fully understand akathisia etc.? We all know how difficult it is to get many ‘professionals’ to accept the realities of such conditions.
In my book, anyone put on a SSRI needs weekly follow-up appointments to ensure patient safety – an appointment after 6 weeks on a certain dose is way too late!
As for the idea of having dedicated helplines funded by pharmaceutical companies for users of their products – that is absolutely ridiculous! I can just imagine the ‘help’ – “increase your dose that’s the way forward” – haven’t we all heard it over and over again?
Totally agree Mary. If they don’t fully understand and jump to attention when the first signs of akathisia show, there is no point having a helpline, in fact, can actually be counterproductive – never let us forget the mind blowing Dr Sarah Jarvis! If they can’t see the patient and the patient doesn’t know they’ve got akathisia, or even what it is, not a lot of hope for an accurate diagnosis, surely?
An interesting thought struck me, along those lines; as a parent who in her role as patient ever since aged 19 having had akathisia reactions to hay fever injections, injected dye for X-rays, the contraceptive pill (just anxiety from that and spaced out weird feeling), steroids (terrible akathisia) etc – if the mother as patient has reported these meds causing her to manifest akathisia each time (since kingdom come) and never been believed by GP etc but thought to be over sensitive neurotic nitwit, does the reputation of the mother when trying to raise awareness of SON having same reactions, get sidelined. Answer – in my personal opinion, yes, without doubt.
Can just imagine, if calling helpline, (I would have to be almost dead to do so, and maybe not even then), what my medical notes would read like to doc like Sarah Jarvis on end of phone …no doubt I’d merit another tick in the nutty box, and thus I’d take, reputation-wise, a further slide down the slippery slope. I realise the enzyme test CYP450 is not a total answer to all things, but it might help some of us a little. It’s a simple saliva test, why don’t we offer it free to everyone? I’m also wondering whether, if one does not have this enzyme to detox through kidneys and liver anything toxic, food waste or excess fats etc, could this account for genetic severe acne?
I do like the idea of a dedicated user group – that would presumably encourage thousands to get together and press for change, compensation for damage etc. and even better, the forum for users seeking support, not sure why they need the ‘moderation by healthcare professionals’…unless I guess to offer follow up support in individual cases. If so, then we would need to provide information on who to consult. So, a directory of enlightened and effective doctors, psychiatrists and other healthcare agencies would be good. One could rate them with a 5 star system, like plumbers and electricians.
Two points of yours, Heather, I really do think should be pursued:
CYP450 as a free test (or, at least, one that’s easily available at a reasonable cost IN THE UK)
A Rating System – a directory of the professional ‘service providers’ rated by ‘service users’ just like you do with uber taxis and airb&b.
A ‘spot on’ idea and very twenty first century! We would absolutely need the ‘five out of five’ top raters to give proper, correct advice and (I hope) educate the rest of the ‘professionals’. A new web based business maybe ? …. ‘Uber Psychs’. And this is needed well in advance of any national helpline otherwise, as has been pointed out, the existing problem of AKATHISIA NON RECOGNITION, MIS-DIAGNOSIS and MIS-MEDICATION will continue and there’d be a serious risk of it worsening as a result of a ‘helpline’.
Stench of corruption that just won’t go away..
The Famous Grouse
https://vimeo.com/115681495
David Healy gave a lecture entitled ‘The Famous Grouse’ whereby he carefully, systematically and assuredly, with all ‘evidence’ of the Study329.
Anyone who is anyone should watch this.
Those answering your telephone call to the Dedicated Helpline are unlikely to know the real deal and are unlikely to know what to do with a manic, suicidal, blubbering, overheated, person on the end of the phone.
What are the options:
You must talk to an Expert.
See your Doctor.
Get yourself to A&E.
Keep close family and friends around you.
Stick to your medication regime until someone tells you otherwise
The whole house of cards will come crumbling down, at this point..
I was one of the 65,000 who called the Helpline after watching Panorama and after the series of hospital ’emergency’ admittances in 2002, primarily to find out where people were being directed
It was never suggested to me that my medics were criminals, which they were, and, it was never suggested to me that CEO’s like Sir Andrew Witty could have put a stop to it pre 2000 and I swallowed it off and on from 1999 until 2003..
So, may be a Helpline will cause a hue and cry, but, I would hesitate to say it might save a life…
Seroxatted is like being Garrotted and we are at liberty to say so..
Between your common gp and your common ssri then is a Gulf so huge that I wonder how we are going to bridge it…and this is why David’s blog and RxISK are so crucial, because without it we would not know the half of it..
There are also some truly brilliant researchers/bloggists out there… the real deal
Terrifying Times, as you will realise from The Famous Grouse..
Who ever works on the help line would and should be trained in SSRI problems, Rxisk could teach them. I also think yes they could save a life and many of them if they were available. They could give the number on the pil leaflet that comes with the medication. If the help line have any query’s they could consult with Rxisk as their first line of advice. If the helpline advised someone to go to the hospital then the helpline could contact that local hospital and fill them in with details of whats going on and what to do about it. It would even be helpful to the police as they deal with so many people on psychiatric medications. Its not that hard a thing to do really.
A forum for people with SSRI problems would be also helpful so that people have somewhere to turn to when they are struggling. The forum moderators would also be trained to deal with SSRI problems. There are enough professionals and patients out there now who know the answers to many of the problems. There’s no reason why there shouldn’t be more help and support for people now.
Here’s a bit more food for thought on taking matters into our own hands and forming our own networks for support:
This is an impressive fellowship, Food Addicts Anonymous (FAA), responding to individuals’ biochemical differences to certain substances in foods, mainly sugar, flour, and wheat.
http://www.foodaddictsanonymous.org/meetings
It’s relative small (but growing) and a good model for us, I think. (For becoming unified and embodying our own solution, not for support for staying off of substances). In addition to weekly face to face meetings, they have several phone meetings each day, and dedicated members (with the help of a Higher Power) make this run. People also exchange phone numbers and sponsor one another or simply form supportive alliances.
http://www.foodaddictsanonymous.org/phone-meetings
FAA is modeled after AA, and if you look at the bigger picture, we have a lot in common with these groups. Sugar is a substance that is marketed heavily, is lurking in almost all processed foods, and there are many people who react to it in the same way alcoholics do alcohol – a reasonable amount triggers an overwhelming craving for more.
What people are up against with things like sugar, alcohol, and pharmaceuticals are entire cultures that view these things as good and defend their use. I would argue that culture is the primary problem, even if this was created by marketing, and reinforced by medical culture in the case of Rx.
AA and FAA are havens of rest for people who suffer from these biochemical differences. People report feeling “at home” in these fellowships. The groups could spend a lot of time fighting the system or arguing that a large portion of society’s alcohol and sugar consumers are really addicts, but instead they put their energy toward manifesting their own solutions and offer support to any who want it. The fact that these groups exist in communities all over the world attest to the reality of the problem for those who are ready to see.
I guess the main reason I wanted to share this is FAA’s impressive phone meeting schedule. I do believe that face to face is ideal, but there is meaningful support happening in these phone meetings too.
Any thoughts on doing something akin to this?
Actually Laurie that really is a good website and idea, that’s exactly what we need for SSRIS and we could do the food thing too. Trouble is who’s going to run it? or start it? it would be good if the drug companies paid for it or the government.
Hi Anne-Marie,
Thank you for your feedback. If we have enough interest from people involved here, with RxISK, MIA, and the like, essentially all of us who have been hoping someone else would DO something about this can start it and run it collectively.
The FAA forum is just one example of what regular people have done to address their own problems and then reach out to others. I believe it is less an issue of money than of how many of us are willing to commit our time and just a few resources.
Anyone interested in facilitating this might have a closer look at how 12 step groups originated and how they run. The 12 steps and 12 traditions of AA set a protective tone for group unity. They wouldn’t necessarily be our primary focus, nor abstaining for anything. But they could guide our groups as we set about carrying the RxISK message: to making medicine safer for all of us.
Here is a link to a talk by one of AA’s founders on the wisdom behind the traditions: https://www.youtube.com/watch?v=dQ6soSvYM-g
To get started we need those who are interested to get on the same page. Right now I guess I’m trying to gauge interest. It would take commitment from many of us, but it is entirely possible to do this.
Laurie, I would be willing to do whatever I can to support and further your ideas. I do feel though, that any of us who support you must have firm ground rules put in place, so that we are fully aware of our role (what we can say or do, alongside matters that we certainly must not touch upon etc.) so that we all share the same message.
At the moment, there is a new Welsh language mental health website being created. It is hoped that it will be fully operational by the end of this week. I have just sent them a short part of our son’s story – not to frighten anyone but rather to educate. I finished that part of his story at the point where he was told that Seroxat was the cause of all his suffering (back in 2002). I then urged anyone who felt that their medication may not be helping them to go back to their GP, to withdraw only with medical supervision and, failing that, to turn to Rxisk.org for their support.
It will be interesting to see whether or not that story will make it on to the website – or will it be deemed too controversial. They may not want to rock the boat on day one!
It may be good after the crisis is over but I was thinking more on the lines of a help line for people in immediate distress from SSRIS. Maybe when they have resolved their SSRI issue they could consider the sugar group.
I find Laurie Oakley’s ‘food for thought’ comment very relevant and interesting. If we link it in with the discovery that we can test for a genetic enzyme deficiency – the CYP450 – which it seems is the one on the front line in the kidneys, liver and blood brain barrier, for getting rid of toxins.
Our son Olly suffered from severe acne on his back, neck and chest. So did I. It persisted for both us us into our 30’s. By chance I realised that eating butter, drinking a lot of milk, and eating chocolate, triggered skin breakouts for me. Along with hormone ups and downs. As a baby. Olly had terrible colic when introduced aged 5 months, to cows’ milk. He had asthma from age 5, which dwindled away to some extent by age 14, when his acne started.
He had a 3 month wait when about 15 for an appointment with a local NHS Consultant Dermatologist. Olly was always keen on research, and problem solving. He and we used the time to research the duet connexion, having seen what seemed to affect my skin so badly. He tried the Stone Age diet, suggested by a private GP we knew called Dr Sarah Myhill, in Wales. It was hard work, in that we cut out sugar, milk, wheat, but, boy, did it work! By the time he got seen by the Consultant Dermatologist, even his NHS skeptical GP had to admit in her referral letter, that the improvement had been very marked, despite her expectations. (She couldn’t resist mentioning that The Mother carries around a file containing her research findings, which doctors could find intimidating…. This little aside didn’t enhance our credibility, needless to say).
The Consultant wasn’t interested in the research, or the skin’s improvement. She just told him, in front of us, that that was all very well, but ‘he’d never get rid of the scarring.’ This devastated him, took away his hope. He stopped the diet, he went back to drinking lots of milk, chocolate, wheat, etc. His acne got worse again. And worse. Pressure was put on him by his doctor to take RoAccutane/isotretinoin. We advised him strongly not to. He was in a dilemma. You may think us cruel, but we made him wait till he was 21. Meantime we offered everything else we could find. Nothing worked like the diet had. But the doctors had killed his faith in that, and us. And what a doctor says, is of course, always believed…..
At least his mind remained in good working order for those years from 14 to 21. Then it all began to fall apart, with the acne drug at Uni, topped off with Seroxat SSRI for the low mood it caused (amongst a wealth of other horrendous listed side effects). A mini psychosis followed. Then years of struggle, a lost degree, a very successful business which was also lost when his damaged mind finally gave up, aged 32 gave up, and his suicidal compulsion was unbelieved by doctors.
But had the DIET been accepted as a solution, all those years before, maybe things could have turned out differently. And, by the way, in 2011 he had the newly invented Blue Light and laser therapy (he could afford the £1,000 to pay for it, so successful was his business) and all the scarring faded away! RoAccutane, despite many courses of it, did very little to improve his skin, over all those years. But it, and the psychotropic medications he had to resort to, to keep going, killed him. If he’d had the CYP450 test, I’d put good money on it that he’d have been shown he wasn’t detoxing food waste as most folk do causing his acne and his akathisia. His liver results, read out at his inquest, were off the scale when on RoAacutane, but his GP back in 2003 onwards dismissed concerns when we, the ‘over fussy patents’ raised serious concerns about these levels.
So, Lawrie, yes, let’s get these food and drug patient forums going. Years ago an army doctor, ?Captain Macarrison was showing patients that sugar was a major problem for good health, and also, later, the Hay Diet (not eating hay (!) but not mixing certain foods at each meal) produced good results too.
One final thing – after I broke my neck in a car crash, the neurosurgeon opened me at the front of my throat, to fix my shattered vertebrae (with titanium nuts and bolts and plate and bone graft inside) as he said it was safer than going in from the back nearer the spinal cord. Some years later, that throat scar looked unsightly and keloid and an aesthetic surgeon kindly removed it for me. In peeling back my neck skin, he told me later there was an enormous amount of acne scarring, like deposited fats, just under the skin. He tried to remove some of it but it was pretty solid. So surely that meant that I had not been able to get rid of those fats through digestion, as most people do. So, if those without the CYP450 enzyme also suffer bad acne, does that introduce another connexion? We can’t detox certain meds, and we can’t detox certain foods perhaps? What about IBS? All good food for thought Lawrie!
Heather, I like your idea for keeping a directory of doctors who were found to be truly helpful and was thinking an exhaustive directory of alternatives people have found useful might be part of what we could offer. I had shared about FAA only as an example of what is possible but not thinking we would focus on anything but drug treatments (like RxISK). Basically we could be taking RxISK to the streets.
I can’t believe how similar your experiences and mine are Heather – as far as allergies, food intolerances, asthma etc. are concerned ( there it almost ends – thankfully, I haven’t been involved in a crash of any sort!). I, too, suffered from acne in my teenage years and always found that my sinus problems were always worse if I had a lot of dairy products. Living on a farm meant milk was plentiful but, to this day I do not tolerate it at all well. Interestingly – following separate bouts of flu many years ago, I suddenly couldn’t drink tea or coffee. I just can’t to this day! I find that I very easily put weight on if using medications such as steroids too – don’t know if that’s true for you?
Now to my son – the one who had the massive reactions to Seroxat. As I’ve said before, he is a son fostered by us – therefore no shared blood ties, therefore my intolerances could not possibly have passed on to him. He doesn’t suffer from intolerance to foodstuffs as such -but, he has to be very careful which brand of milk he uses, dislikes butter and cannot tolerate cream. His main intolerance ( if that would be the correct term) however is to medications of many types. He had an anaphylactic shock to a measles jab at age 14 and another similar reaction to a local anaesthetic for dental work aged 22. He also puts weight on very easily when put on different medications. Amazing, isn’t it, how some of us can and others cannot tolerate our own lifestyles.
Mary, yes, I completely forgot the local anaesthetic for dental work, I think it was Novocaine, same thing happened to me as happened to your son. I daren’t have a flu injection just in case I react. There seems, for some of us. to be a tendency to have a spreading sensitivity to these things, also to smells like bleach or acetone or petrol or certain noxious glues, the ones you have to mix in two parts.
When we lived in a farmhouse we had at first a very old solid fuel Aga. The fumes or maybe dust in the air from that used to make Olly wheeze and brought on asthma. We got a new oil-fired one and he was fine with that. As you say, it is strange how some of us have adapted physically over the centuries to tolerate these things, but others can’t. Is this about Darwin’s ‘survival of the fittest’, except that now, these hazards don’t eliminate us all quickly, like they might have done thousands of years ago. Isn’t it instead an argument for striving for a Greener world where we all achieve good health and less materialism.
Of course the diet worked for Olly. Over the last decade, the link with our micro biome especially gut bacteria, has been shown to be the controlling factor in so many conditions, particularly autoimmune diseases.
The two-way street that is the brain- gut axis is now much better understood, with a lot of bacteria/ neurotransmitter links identified.
We evolved with this bacteria and with our mitochondria and our modern way of life is killing them and us.
Antibiotics may be a life saver but the overuse of these and the use early in life has a devastating effect on brain development. The immune system depends on a good balance of gut bacteria.
NONE of this is psychiatric, but in the UK there is only one neuro gastroenterologist that I know of.
Technology has shown what psychiatry has not and we now need a revolution in thinking.
Recommend ” Grow your Brain” by David Permutter.
“Bowels Bugs and Bacteria” for those with ASD edited by Teri Arranga
Christine, thanks so much for these excellent book recommendations. Am well into ‘Bowels, Bugs and Bacteria’ now. Amazing. Everyone should read it. Will pass the reference on to the ASD group we are involved with.
One or two GPs we know have told us about the links of gut symbiosis with the brain. One is Dr Sarah Myhill who has an interesting website and told us some while ago about the latest gut linked research, showing even heart disease can be affected by these bacteria etc.
There is no financial incentive for Big Pharma really in focussing on the need for good diet.
Natural Live yoghurt can help soothe stomachs if you can tolerate dairy products. You can make your own yoghurt very cheaply. I have been very impressed with the uplifting effect of ginger and turmeric tea. Some say it is nature’s anti-depressant. Tastes interesting, not at all bad. Ginger very good for nausea…