Isotretinoin: an expert UK review of suspected psychiatric and sexual side effects- Review from 2021 with results in 2023

https://www.gov.uk/guidance/isotretinoin-an-expert-review-of-suspected-psychiatric-and-sexual-side-effects#contributions-from-patients-and-the-public

The review of the safety of isotretinoin/Roaccutane has concluded.

A great deal of thought and anguish for those bereaved or harmed  they believed was after or during the use Roaccutane/ isotretinoin, prescribed for acne,  before they sent in written evidence or / and spoke in meetings with some of the Istotretinoin Expert Working Group (IEWG).

The three meetings videos of the evidence from patients, bereaved family members and doctors are on the .Gov site

The final discussion on findings following evidence sessions is here: 

https://www.youtube.com/watch?v=jOX6hASHdTM 

it may be of interest that the manufacturer Roche have ceased being responsible for the sale of isotretinoin/ Accutane in the USA - the amount of litigation linking the adverse effects to Inflammatory Bowel Disease in the US was not said to be the reason. However I spoke to a generic provider of the drug in the UK and was told Roche provides them with the drugs.

Before this the evidence sessions on Zoom occurred and we had all sent in written evidence too.

Contributions from patients and the public

A call for information was held for 14 weeks (10 November 2020 to 16 February 2021). A total of 710 complete responses were received. These included 659 responses that provided views. We have assessed each one and shared the responses with the IEWG.

Patients and other stakeholders presented information about their experience of isotretinoin and what aspect of treatment has had the greatest impact as well as how the risks associated with isotretinoin should be managed.

Three sessions were held to allow the IEWG to hear from everyone who registered and wished to present.

See recordings of the 3 IEWG sessions with stakeholders. These videos have been edited to only show the views of those who consented to being recorded. The videos contain content that some people may find upsetting:

• IEWG Meeting 16 July 2021 https://www.youtube.com/watch?v=xTlvBr4QstI
• IEWG Meeting 21 July Meeting (morning session)
• https://www.youtube.com/watch?v=OxUOo5DK_zg
• IEWG Meeting 21 July 2021 Afternoon Session
• https://www.youtube.com/watch?v=KA2xlhmYr_o

It is worth hearing the above sessions for real patient experiences. There are generic versions of isotretinoin and it should only be prescribed by consultant dermatologists, not by GPs or obtained from the Internet.

isotretinoin is marketed as Absorica, Absorica LD, Claravis, Amnesteem, Myorisan, and Zenatane, and is sometimes referred to by its former brand name, Accutane

Rizuderm, Reticutan in the UK

Antidepressant Withdrawal Official Advice from UK's Royal College of Psychiatrists

 For antidepressant withdrawal and safe, slow reduction in dosage, a huge breakthrough is the Royal College of Psychiatrists have included, on their web site, detailed information about titrating the dosage, the use of liquid medication and other advice. They also warn about possibe withdrawal effects. This is a vital contribution towards patient safety, we have been begging for during the past 20 years. 

https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants

 BREAKING NEWS

Ron H.N. van Schaik• Posted this - APRIL is Following on Linkedin.Full Professor Pharmacogenetics / Head Dept Clinical Chemistry / Past-President European Society Pharmacogenomics & Personalised Therapy (ESPT)

5d • Edited • 5 days ago

First-ever NHS pilot of routine pharmacogenetic testing to guide drug choice in primary care will begin in early 2023 in north-west England, with plans for it to become a national programme if successful. Drugs include antidepressants, statins and proton pump inhibitors (PPIs).

Great move forward!

There are also plans to expand pharmacogenomic testing in Scotland, where health board NHS Tayside has begun a routine clopidogrel genotype testing service in secondary care after acute stroke, and there are also plans in development to use pharmacogenomic testing pilots more broadly using gene panels.

#pharmacogenetics #CYP2D6 #CYP2C19 #SLCO1B1
Joba van den Berg Ernst Kuipers

Personalised Medicine promise - to prevent high rate of adverse drug reactions (ADRs)

 

BREAKING NEWS 

Personalised Medicine 

 At last in March 2022 a promise for Personalised Medication Prescribing. This should dramatically reduce harm done to many by using medication they cannot tolerate, or does nothing to improve their condition.

A Detailed report just published March 2022 by the 
Royal College of Physicians & British Pharmacological Society -
Click Here for the Report: PERSONALISED PRESCRIBING

An article in The Guardian Experts push for genetic testing to personalise drug prescriptions explains the benefits, as About 6.5% of UK hospital admissions are caused by adverse drug reactions, while most prescription medicines only work on 30% to 50% of people.
Click here for the Guardian article by Linda Geddes:

APRIL has been promoting the use of genetic testing for many years  - Click here for a talk by Professor Sir Munir Pirmohamed, Chair of the Working Group on Personalised Prescribing, speaking at our conference

The aim of this web site is to share information about psychiatric adverse effects of prescribed medicines and anaesthetics.However many who suffer adverse reactions are then prescribed psychotropic drugs, some cause dependence.

Read below about an online conference on issues of dependence and withdrawal from antidepressants, benzodiasepines and other drugs causing serious withdrawal reactions. With Professor Joanna Moncrieff and Robert Whitaker

Withdrawal from Medication
CONFERENCE - May 6/7 2022  
Click for flyer: Withdrawal from Psychiatric Drugs

https://iipdw.org/

The MHRA Roaccutane / isotretinoin Inquiry into harms some people suffer, is still ongoing. Plus link to Millie Kieve's newest video.

 Re the MHRA Isotretinoin expert working Group (IEWG) conclusions following  submission of evidence from Millie Kieve for APRIL charity, together with many parents tragically bereaved by the suicide of their child.

The outcome  of our written and face to face (via Zoom) submissions of evidence, is very slow to emerge and more will be posted about this at a later date.

For my part (Millie)  - News of the work for APRIL which is ongoing, even though my age tells me to slow down!

I have now given up the office as I had rarely been into the space since the Covid lockdown, so am working on books about the history of APRIL and my life in fact!

In the meantime I have updated some videos on the Vimeo web site and this one is the newest:

https://vimeo.com/683984803

It is a talk that started as a conversation between me and my long time volunteer and friend Kathy.

I decided as I was explaining some of the history of the efforts I have made to help towards greater patient safety, I may as well record this. So I added still pictures to help illustrate the information. This covers the early years around the time of the  first conference I organised.

This includes when Dr David Healy (now Professor) was rejected after having his post as Professor in Toronto, following his talk to a few doctors, I believe, about the risk of suicide for some people taking antidepressant SSRI and similar drugs. You will hear he did agree to speak at that first conference, which led to the amazing work by the BBC Panorama team in highlighting the issues around dependence and harm caused by the SSRI antidepressant Seroxat. 

The fact that dosage was licensed too high and how the CEO of MIND charity actually resigned from and committee of people working for the Medicines regulator at the time, for reasons of failure to disclose or act on harm they knew about.

Please listen to the 11 minute 'conversation' in which I do actually include Kath's contribution, but not all as it may have been unsuitable for sharing! 

There are many videos of interest I have edited and included on Vimeo and the link to them all is on the Home Page of APRIL's web site https://www.april.org.uk Talks by leading experts in adverse drug reactions (ADRs) and how clinical trials have been rigged in favour of benefits from medicines with cover up of harms. Testimonials of suffering and recovery from people who have been sectioned for psychiatric issues, some due to the ADRs they suffered.

I will do more on the blog if I can be sure some people are still reading my posts. Please enter your email to be informed of new posts. I have no access to that data so have no idea how many of you may have signed up.

Kind regards to all and stay safe from Covid - with heartfelt concern for those in Ukraine who have far more  than Covid to worry about.

Inquiry invites your views as concern about psychiatric and physical harm from acne drug isotretinoin / Ro - Accutane / Reticutan / Rizuderm

 Isotretinoin / Roaccutane / Reticutan / Rizuderm / Accutane 

Please submit your views for an Expert Review of your experience or your relative or friend's as to the safety or otherwise of this acne medication.

https://www.gov.uk/government/consultations/isotretinoin-call-for-information-to-be-considered-as-part-of-an-expert-review 

Closing date for submission extend to 16th February 2021 

UK and non UK submissions welcome

Concerns about suicide, depression and physical harm linked to using this acne medication are worldwide. 

EU ADR database records psychiatric Adverse Drug Reactions (ADRs) 30,295 with reported cases of completed suicide by people using the acne drug 440 by 01/02/21

The original manufacturer Roche withdrew the drug from the US market following extensive amount of litigation. The US litigation was also about the drug causing Inflammatory Bowel Disease such as Ulcerative Colitis.

Only licensed for for severe acne, yet has been given to people with mild acne. One young medical student with a few spots on his back died by suicide - you can hear his father's account here: https://vimeo.com/16759077 

 Roaccutane / isotretinoin and generic versions can cause serious adverse reactions for some people . 

Please submit your views for the Expert Review due to concerns about suicide, depression and physical harm linked to usage - date has been extended until February 16 2021.

Worldwide - not just the UK - so please if you have any views, if you or a family member has concerns about adverse effects you may not expect, such as on libido or mood changes  or  if you were bereaved suddenly and the victim was using or had stopped using the acne drug, please access via the link below and submit your views by Feb 16 2021

https://www.gov.uk/government/consultations/isotretinoin-call-for-information-to-be-considered-as-part-of-an-expert-review 

Benzo Belle is about preventing Harm from Medicines by Calista Cazuko

Calista Cazuko is a remarkable young and lovely singer songwriter. 

Her first meeting with me (Millie) was when I was thinking of having piano lessons and

we both lived near a piano shop.

So from music we got on to the subject of medicines, in particular Dianette.

Hear what Calista says about the years (contrary to the licensing) she took this acne drug as a contraceptive pill.

The blog post is so delightful to listen to and has some very good advice both from Calista and from her 

guest Melanie Davis. Melanie use to work with MIND and she talks about her project to help people with their benzodiazepine issues, either to reduce or withdraw. 

Many support activities involving music were set up for the victims of Benzo addiction. Many were unaware the drugs cause dependence.

So please listen to the latest blog  "Benzo Belle"and there are links on the page too. This is part of the Empress Diaries project. https://empressdiaries.buzzsprout.com