A longstanding problem for people with post-SSRI sexual dysfunction (PSSD) when trying to report their condition to drug regulators has been the absence of a code for PSSD. When regulators receive adverse event reports, they are coded against specific terms in their database which are usually taken from the Medical Dictionary for Regulatory Activities (MedDRA). Without a code for PSSD, it was only possible to record individual symptoms such as loss of libido, genital anaesthesia and erectile dysfunction.
This meant that cases of PSSD were somewhat hidden amongst reports of sexual side effects that were happening while on a medication. It was compounded by the fact that online regulatory databases often don’t indicate whether a reported adverse event persisted after the medication was stopped.
Towards the end of 2023, one of our team was investigating MedDRA codes related to sexual dysfunction and noticed a code for PSSD (10086208).
Further investigation revealed that it was added in 2021. Despite this, all of the evidence suggested that regulators were yet to adopt its use.
We were therefore pleasantly surprised to receive an email last week from someone linked to PSSD Network and RxISK who had recently written to the UK’s drug regulator, the Medicines and Healthcare products Regulatory Agency (MHRA). The person had asked how many reports had been filed using the MedDRA code for post-SSRI sexual dysfunction, and they also asked for a breakdown by medication.
MHRA provided a detailed response and said they had received 33 UK reports up until 10 November 2024:
Sertraline 11
Citalopram 7
Fluoxetine 5
Escitalopram 4
Vortioxetine 3
Duloxetine 2
Amitriptyline 1
Lithium 1
Mirtazapine 1
Nortriptyline 1
Olanzapine 1
Venlafaxine 1
Adding up the numbers next to each drug comes to more than 33 because a report can list more than one drug. For example, a person may have been taking multiple drugs and might not be sure which had caused the problem.
As per the diagnostic criteria, PSSD relates to serotonin reuptake inhibitors eg. SSRIs, SNRIs, some tricyclics, and other related drugs. Lithium and olanzapine are not serotonin reuptake inhibitors. This raises an important point.
Some people claim to have developed PSSD from drugs that aren’t serotonin reuptake inhibitors and are unhappy when other people say their problem can’t be described in that way. There are many drugs that can cause various kinds of sexual side effects, and these can sometimes persist after stopping the drug, but this doesn’t necessarily mean it is PSSD.
PSSD isn’t a typical sexual dysfunction and has two very distinctive features – decreased genital sensation and pleasureless/muted orgasm. In addition, serotonin reuptake inhibitors produce some degree of genital numbing in almost everyone within an hour of taking the first dose. This effect appears to be unique to this class of drugs and highlights that this is a very specific disorder. Even drugs that can cause comparable features to PSSD such as finasteride and isotretinoin don’t universally produce immediate genital numbing upon taking, and are therefore regarded as separate conditions to PSSD, albeit potentially related.
Confusion can sometimes arise because symptoms can emerge upon stopping the causative drug. For example, a patient may be taking an SSRI and have relatively mild sexual dysfunction. They switch to a different type of drug and develop severe genital numbness. When they stop taking the second drug, the numbness doesn’t go away. They assume it was caused by the second drug because that’s when it occurred, but it may actually have been caused by stopping the SSRI.
None of this is to say that other drugs can’t cause persistent sexual dysfunction, but it’s important to make a distinction when it comes to labelling something as PSSD. As stated in the criteria article, antipsychotics and norepinephrine reuptake inhibitors can produce sexual difficulties that can sometimes persist, but this is not PSSD. A possible exception is the antipsychotic ziprasidone which also acts as a serotonin reuptake inhibitor.
Nortriptyline is usually thought of as a norepinephrine reuptake inhibitor, but it also inhibits serotonin reuptake. Mirtazapine acts on serotonin systems and can produce protracted withdrawal problems, akathisia, enduring sexual dysfunction and visual snow that look close to identical with SSRIs.
It isn’t known how these cases will be handled by regulators and whether they will be recorded as PSSD if it’s mentioned in the report, regardless of the suspect drug.
Reporting
It’s now possible to officially report post-SSRI sexual dysfunction to the UK’s drug regulator using their Yellow Card website, and this might be a good opportunity for anyone who is based in the UK to report their case. It might be worth specifically mentioning post-SSRI sexual dysfunction (MedDRA code 10086208) as well as listing individual symptoms so these can also be recorded against their specific terms.
The situation is less clear for those outside of the UK. For example, post-SSRI sexual dysfunction doesn’t appear in the list of searchable reactions in the FDA Adverse Event Reporting System (FAERS), which suggests it isn’t currently being used by the US regulator. However, FDA normally do use MedDRA, so pressure on them may be worthwhile.
Australia, Canada, New Zealand and European countries already have warnings in the drug labels, so it’s perhaps more likely that they will start using the code, or might have already started using it. Even so, it is still worth ensuring your case is coded with this MedDRA code.
It would be helpful if some of you could contact your country’s drug regulator to ask if they are using the new code and whether any reports have been received. Please let us know what they say.
Old reports are not typically reclassified when new codes are added to a regulatory database, so if you have previously reported your case, it probably won’t be recorded as PSSD. You would need to submit a new report.
We don’t know when MHRA started using the code for PSSD. Strangely, a freedom of information request that was answered by MHRA in April 2023 incorrectly claimed that “The term post-SSRI sexual dysfunction (PSSD) is not recognised by the regulatory dictionary – MedDRA.” We know that it was added by MedDRA in 2021, and MHRA’s recent letter confirms that. Given MHRA’s unawareness of the code in April 2023, they may not have started using it until after that time.
Other news
SNOMED
On 7 October 2024, Dr Mark Horowitz announced on X that PSSD had been added to SNOMED. This is an international set of clinical healthcare terminology for use in electronic health records.
SCTID: 1340196008
Persistent sexual dysfunction following withdrawal of selective serotonin re-uptake inhibitor (disorder)/
PSSD – post selective serotonin re-uptake inhibitor sexual dysfunction
While this is a positive step forward, it remains to be seen how beneficial it will be to patients. If you already have a supportive doctor who acknowledges that your condition is the result of previous antidepressant use, then the new SNOMED code offers a means of more formally recording your condition as PSSD in the medical notes. But if your doctor is dismissive and refuses to believe that your problem is anything other than a psychological issue, the availability of the new code might make little difference.
If your doctor has difficulty finding the SNOMED code, you can quote SCTID: 1340196008. Different medical practices may update their systems at different times, perhaps only a few times a year, so it’s possible that it may not be available for everyone yet.
There is also now a SNOMED code for protracted antidepressant withdrawal syndrome (disorder) – SCTID: 1285639002. It may be worth getting this into your medical record as well.
Orphanet
We were recently advised by a member of the PSSD community that their efforts had led to PSSD being recognised by Orphanet, an international organisation that specialises in rare diseases. He had spent a lot of time at this, and it’s quite an achievement to get them to recognise the condition.
It is worth clarifying that it isn’t known how many people fully recover their original sexual function after using serotonin reuptake inhibitors, and there is no robust data establishing that PSSD is rare, but it does qualify as rare in Orphanet terms. As discussed in our recently published journal article about PSSD epidemiology, the available data suggests the contrary.
One of the advantages of being listed in Orphanet is that it opens the door to getting rare disease research funding.
tim says
Thank you to all at RxISK, and other groups, who have worked with such absolute commitment resulting in such encouraging progress being reported this morning.
mary H. says
Thanks for the information shared here, David, which has raised a few questions in my mind.
As far as protracted withdrawal and PSSD are concerned, we should be concentrating on those people who are ( or have been) on an SSRI – is that correct?
Would you suggest that for PSSD, if one recognises him/herself as being in that group once they have followed your guidelines here, they should PERSONALLY send in a yellow card report – even if their GP refuses to acknowledge their suffering as being PSSD?
Is there a similar guideline that you could provide for protracted withdrawal? I would assume that your reply for the PSSD question would run true for this condition also?
Now to SNOMED – a short survey within our withdrawal groups found that areas are using the codes as such but needed support in finding these two particular ones. There was an explanation from one doctor that these codes are better known to their office staff rather than the doctor who sees the patient. To me, that would indicate a big problem – without the doctor being specifically aware of these new additions, their patient is hardly going to have the condition recognised in that surgery’s system. Is there anything we can suggest to overcome this?
Doctors seem to suggest that they have no time for getting the codes applied to their patient – surely, for any patient who qualifies for Benefits, having the SNOMED code should ease the doctor’s workload when it comes to completing their part of a Benefits Application Form?
We were pleasantly surprised to find that Wales ( here in the North anyway) understands the SNOMED codes – although unsure about their knowledge of these recent ones.
Our survey wasn’t in any way representative of the whole of the UK – simply pockets of it according to our contributors’ postcodes. Of the few that came back to us, those in the South of England are aware of them as is the Manchester area of the North. Further up north, they are aware but not yet fully operational. Scotland has a similar system in place, but doesn’t come under the SNOMED heading. That had previously also applied in Wales.
By the very nature of this survey, it was not essential to arrange an appointment with the GP as anyone within the surgery should have been able to provide an answer to the questions. This would have been possible by email if attending the surgery was not a possibility.
That leads me to another headache – the majority of our attendees were unable to carry out the survey in any of the suggested ways. This, in the main, was due to their present conditions being so overwhelming that they couldn’t entertain the thought of taking on anything extra to their daily, completely exhausting routine.
I feel that this leads us to a further fragmentation of support. Those who are well enough are able to suggest these changes to their surgeries – but what about the others? Are they going to be left behind yet again – due to being unable to tend to their own needs? Is there any perceived way that we could possibly put something in place to help this particular group? Having lost faith in their doctors, are they to be punished now for not being able to share this information with their surgeries?
This group, for sure, are not going to be able to put forward a case for their own possible suffering of PSSD or protracted withdrawal. They could so easily be pushed even further down the pecking order. Their chances of positivity seem slimmer than ever. There must, surely, be something that we can do for them? An advocate should be available but, there again, their link is to the system which has already repeatedly let them down. It is unlikely that the advocate will go against a doctor’s advice concerning a given patient’s condition. There lies another source of great unhappiness.
The Yellow Card System can be completed by the individual as we know, so the problem there would have more to do with their present situation – extent of symptom suffering etc. – so they would likely miss out on this also.
I would love to have some suggestion that we could share with our group to improve their feelings of inclusivity within the system. I appreciate, of course, that getting all who CAN go ahead with the suggestions will make a difference and that that is the overall purpose of your post. I have simply grabbed at the chance of shining a light on those for whom this suggestion is, at present, an impossibility.
Harriet Vogt says
I’ve been having a quick think about this, Mary, understanding that withdrawing patients in your groups are likely to be quite disabled.
I was wondering about the usefulness of developing a very simple and ASSERTIVE, ‘now you listen to me,doc!’, proforma they could fill in and submit either to the GP and/or admin at their local surgery – either electronically or in paper form.
I’m thinking simpler than the MHRA Yellow Card. But even that has space for the following sort of info.
For example, a VERY ROUGH first draft:
Heading: PLEASE ENSURE & CONFIRM THAT THE FOLLOWING ESSENTIAL INFOMATION IS ATTACHED TO MY MEDICAL RECORDS. THANK YOU.
Surgery Name:
Patient Name:
NHS NUMBER:
Patient contact details : email mobile
Drug causing ongoing adverse reactions (name):
When started (date):
When stopped (date):
Still tapering (number months):
Detailed adverse reactions : they could either write them down – or you/we could provide a checklist they can circle or highlight:
Diagnosis based on drug/symptomology:
System Codes; SNOMED MedDRA
Signature: Date:
This really is just a starter for 10. But these patients need to have a voice. And be heard by those supposedly caring for them.
Lucy says
I wish I could be counted in the system as someone who is going through venlafaxine withdrawal. I am tapering venlafaxine VERY slowly (curently by 3% every 4-6 weeks) and the withdrawal symotoms are severe and extremely distressing. But I don’t dare admit this to my GP. They won’t support me with any action not sanctioned by the local psychiatry team who have said under NO circumstances should anyone break open venlafaxine capsules to reduce the dose more gradually. Due to years of being misdiagnosed and gaslit by the psychiatry team I cannot bear to engage with them anymore. I have lost all faith in their medical knowledge and they don’t have the communication skills / empathy to listen to me as an expert in my own health. So I struggle on alone and unsupported by the medical profession which has harmed me beyond description. I’m so grateful for Mary’s group, which is a beacon of light – a gathering of caring souls who have all been abused and traumatised by the awful psychiatric system which is in an utter mess, filled with “professionals” who haven’t a clue what they are doing and are entirely oblivious to the huge harms to patients they are doing with grossly inappropriate prescribing and non-existant deprescribing knowledge. It’s devastating.
Harriet Vogt says
This makes such distressing reading, Lucy, however beautifully written.
I totally understand how the last people on earth you would wish to engage with – to deliver a proforma, let alone anything medical – are those who so mindlessly harmed and dismissed you, an ‘expert in your own health’. THE expert.
My sense is that ‘the system’ has finally grasped, in a THEORETICAL’ way, that patients can ‘experience withdrawal symptoms’, when coming off antidepressants. But they have no visceral sense whatsoever of the terrible suffering patients like you endure.
I have one friend who was prescribed paroxetine when she was young – and basically being bullied at school. Wholly inappropriate. She has spent a long time trying to get off this drug – one of the most treacherous I think along with venlafaxine. Anyway, eventually she has recovered sufficiently – not by any means totally – to be counted in the system. Supported by one decent doctor, she wrote a polite but highly critical presentation on the harm that had been done to her by an ignorant, arrogant system – and delivered it at a meeting of what used to be called CCGs. It was apparently well received.
One day, I hope you find yourself in this position. In the meantime, Mary, Shane and ‘the gathering of caring souls’ are a godsend. As are the people on this site.
Lucy Green says
Thank you so much for your reply Harriet. It’s great to hear your friend is doing well now. I have all but lost my career as a registered nurse due to the poison that is venlafaxine. My story is a harrowing one – I have had several episodes of depressive psychosis, induced by the drug. I’ve been hospitalised 5 times. Each time I conpletely believed I was in hell, and it went on for months. I’ve been poisoned by a multitude of potentially addictive psychiatric drugs over the years and was given an unnecessary course of ECT which caused memory loss.. I’ve experienced months-long depressive episodes, severe anxiety, utter blinding terror, rage attacks, hypomanic episodes, akathisia, intense nightmares, excruciating nerve pain, “cotton wool” brain sensations, brain zaps, brain fog, loss of motivation, loss of emotion, crushing fatigue, crippling constipation…. the list goes on… ALL CAUSED BY THE DRUGS and withdrawal from them. .Through it all I’ve had to be a parent to my two children and attempt to hold down my nursing job. It’s been HELL. If I can stop this hsppening to anyone else, perhaps it’ll give it all some meaning. As a psychiatric patient, I’ve been treated as sub-human by psychiatry. I’ve been labelled with diagnoses with scary titles with no discussion whatsoever with me. It’s utterly degrading and traumatic. I’ve also witnessed other patients being abused by power-hungry staff. At no point has any mental health professional acknowledged that the symptoms were caused by the drugs. In time I intend to write about my horrific experiences in detail. These human rights abuses by psychiatry HAVE to stop. Thank you so much for your support.
Lucy Green says
Involvement with Mary and Shane’s group, with support from compassionate and thoughtful people like you, David and Mark Horowitz, is starting to give me the confidence to advocate positively for myself with psychiatry. I’m starting to believe that – maybe, just maybe – we can change things. You’re all offering hope – the very greatest gift. Thank you so much to all of you.
Angela Ruth Davis says
Lucy I am tapering venlafaxine as well, without dr knowing as he would stop them. Please email me. at angeladavis 9391@gmail.com, we have met briefly at Mary’s group
Patricia Ellison says
I would definitely be in favour of help of this kind to support us. Thank you Harriet.
Harriet Vogt says
The Rxisk team have been working for years to support harmed patients.
As a relative newcomer to this painful space – maybe, hopefully – prompted by Mary, I’ve had a simple thought that we can all turn into a bigger idea – together,
Thank YOU, Patricia.
Shaz Hudson says
Its a good idea Harriet, but not sure how those who are told its not NOT the drugs will fair. It’s getting past the denial which is still very much out there amongst GP’s & psychiatry. I mean they are still telling people to skip doses for tapering.
My GP even asked a psychiatrist about adverse effects & WD, only to get back the whole 2 weeks rubbish.
So my record says, SHE thinks……… & then the psychiatrist report & the GP thoughts on it and his suggestion I would benefit from seeing a psychiatrist if I really believed I was suffering WD as they only last a few weeks. Then GP says SHE refused saying it won’t help.
.
Medical records are so one sided, they get to write their report on OUR health, they get to miss out information WE the PATIENT have told them about how WE are feeling, They leave out important information WE have told them.
We don’t have a say what is recorded on OUR own records.
My records have very little of what I went through because I stopped going to the GP the moment I realised I was seen as unstable with mental health issues and my withdrawal/adverse drug reaction was labelled FND – Psychogenic symptoms.
Something definitely has to change, because the sad thing is, those of us who have been so hideously gas lit, totally traumatised by our GP’s and not believed are missing out on important health checks because we have no trust in them to look after us. A lot of us will ignore the signs of illness because we have been let down by the medical profession..
Can we legally demand something like this to be included on our records? Where do we stand with our rights on this? I like the idea very much.
Harriet Vogt says
Shaz – you raise THE fundamental issue – how do patients get past the appalling denial and gaslighting?
‘SHE thinks.’ What a dismissive set of words. It’s perfectly clear that YOU know far more about YOUR own health and iatrogenic struggles – than any of the so-called professionals who have denied you proper care.
You ask another fundamental question – what is the legal position, what are patients’ rights? Certainly, the General Medical Council guidance on Shared Decision Making is clear – patients have a right to be heard and their wishes prioritised:
:https://www.england.nhs.uk/personalisedcare/shared-decision-making/why-is-shared-decision-making-important/decision-making-and-content/
1. Right to be involved and supported.
2. Focus on meaningful dialogue, i.e. specific to the individual.
3. Right to be listened to and given information, time and support.
4. What matters to patients.
With surgical interventions – this mostly seems to happen. I guess because with medical ‘plumbing and carpentry’, the process is visible, relatively easy to articulate, there are multiple consults etc. Even though the guidance is essentially paternalistic and mostly about professionals giving information to patients, rather than the reverse.
When it comes to drugs, especially psychotropics, it seems to be a disaster, as you know to your pain. Largely because, with a few notable exceptions, doctors know little to nothing about these chemicals they are prescribing and adverse effects in the majority of cases are misdiagnosed as ‘relapse’ or another ’mental health ‘ condition or the dustbin diagnosis of FND.
This Rxisk blog captures the real issues https://rxisk.org/challenging-my-doctor-to-disclose/
So, finally, to answer your question, as best I can, my sense is that the patient has EVERY RIGHT to insist on a self-diagnostic note, including recognised medical system codes ,to be put on their records. If any doctor resists, then I’d throw the GMC guidance on Shared Decision Making at them. Sometimes the Surgery managers are easier to deal with.
For any patient who can’t face interacting with the system again – and who uses one of the NHS apps like ‘Patient knows best..’, there are spaces for patients to add their own records about medication and how they are feeling. No reason why a proforma couldn’t be inserted here.
You make another very important point. Patients who have been made doctor averse because of being treated so shamefully, as you have, are at risk of missing out on important medical checks for other potential health problems.
Let’s see if we can make this work, together.
Dr. David Healy says
This last point of Shaz’s that Harriet picks up on is so important – as Tim Moss can testify. The media and medics will say people are not turning up for routine checks since Covid but that’s not the case. There is growing alienation to which the system at present remains blind
D
mary H. says
Another reply from a former member of our group. Received this morning from Adam Rowland:-
‘Its a Yes from me.
I think with these things sadly it’s going to take years to train the majority of GPs but anything like this is a good start in my opinion. We have to take back ownership of our health and they need to start listening to their patients so ideas like this are important.’
(Adam spent some time with us before realising that, as well as being in SSRI withdrawal, he was seriously damaged by the Covid vaccine and is still in a serious condition. His is still a valid voice for our group due to his medical background and his relentless effort to get justice for the vaccine damaged group. I’m sure we all wish him well.)
Mary
Harriet Vogt says
‘We have to take back ownership of our health and they need to start listening to their patients so ideas like this are important.’
Slow replying to Adam because his point is fundamental- and needed pause for thought.
It synchs with my impression that the vast majority of patients are carried along like flotsam by the medical machine, as are most doctors. It’s only a minority of patients – notably the #prescribedharm community – and other sceptics (prefer natural approaches, marketing savvy etc.), numbers obviously ratcheted up by the high profile, blatant dishonesty about vaccine safety – who think critically and challenge doctors and the system.
This is rather a mechanistic study across 3 Swiss tertiary care hospitals – but not irrelevant– showing it was only a small minority of patients ,15.4%. who were active decision makers, critical of services and less likely to bow down to medical authority.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10110786/
David nails what is so disturbing about all this, even for patients who haven’t been harmed by ‘psychiatric’ drugs. Their medical record is a life and death document that purports to reflect the person – but is often unrecognisably them. Nowhere is the reality gap more obvious than for patients suffering iatrogenic harm or stuck in the ‘mental health’ system. The person has been captured and mutated into someone unrecognisable, and then they are judged against this alien self.
Totally agree with Adam’s statement of purpose – ‘taking back ownership of our health ‘ – co-authoring our OWN medical records is a fundamental start and a political act.
Concerned to hear that Adam is enduring compound suffering and presumably a medical record that bears little relation to it. If he hasn’t already seen it, this analysis by Carl Heneghan and Tom Jefferson of the vaccine injury ‘compensation’ scheme and the deliberate planned strategy of paying up for no more than 25% of those harmed, is not surprising – but still shocking. Esther McVey on the case again –a politician on the side of patient safety.
https://trusttheevidence.substack.com/p/vaccine-damage-payments
Claire says
The medical record causes so much damage as well. I can only get restricted life insurance because of repeated episodes of ‘depression’ which was withdrawal not relapse. I would love to get my medical record corrected because it is wrong through and through right now and isn’t me. Although my Gp is amazing, he’s openly admitted he doesn’t have time to do it.
Coming up with a script and how to handle resistance would be so valuable. I’ve had to advocate strongly for myself and being scientifically trained, I could speak the language and understand the literature. Many aren’t though and even if you do, you face so much resistance. I’ve tried to support others with this as well but we need ‘formal’ info that GPs recognised. There is so much brainwashing and gaslighting that needs unwinding.
Thank you for all your doing
Rishi says
Yes I agree
Adam B says
Yes I agree
Hayden Daniels says
My experience with my doctor so far in UK has been quite good after i went to him 2 and half years after developing PSSD. He believed me and was more than willing to enter PSSD code on my medical record, but frustratingly has been unable to do so as he couldn’t find it on system. After speaking to his ‘office manager’, she told him the code is old and doesn’t exist. I of course corrected the doctor and provided information from NHS information services to explain that the code is new and does exist, he has told me he is going to go back to his manager again and I should get a update this week. It is very frustrating that a doctor is very willing to declare this on my medical record but is unable to do so because of a dismissive administrator who will not do the required following up.
After being referred to a urologist, another administrator (after reading my doctor notes) has put that I am suffering from erectile dysfunction even though the doctor has made it clear in his notes that this is not the issue and I don’t suffer from such a condition. According to the doctor, the administrator has just selected common sexual dysfunction conditions to accompany the referral because the condition I describe probably wasn’t available on system.
It would appear as though administrators are preventing doctors from diagnosing conditions even when they’re willing too. I will keep trying though!
Nick says
Thanks for all that you do Dr. Healy. I must admit that while the thought of contacting the FDA to get them to do anything or get any response sounds immediately fruitless, this community certainly didn’t get anywhere by not trying. Do you have any suggestions on who to contact besides some generic FDA contact emails?
Dr. David Healy says
Nick
It’s not me you should thank – or rather I’ll accept the thanks on behalf of a lot of folk behind the scenes who have the ideas and do the work. Very little of what you see happening stems from me. So I am not the person to ask as to what you should do – what you see happening is because a few different people have had ideas that I would not have had and have chased them. The more people chasing as many leads as possible the more chance we will make a breakthrough.
Chasing any regulator like FDA or MHRA is a mugs game – they are bureaucrats who delight in knocking people back. Hooking a politician is a better bet. The media used to be good – but the left-leaning media have sold out completely. Will be interesting to see whether Trump really will have an effect. Anyone who believes in free markets should be appalled at pharmaceuticals – markets need good data to work – a large part of the pharma data is fraudulent and all of it is hidden. A market like this has to collapse and looks like it is collapsing
David
Nick A. says
Thanks for your response, duly noted about this being more of a culmination of many people. You have become the face of the efforts you mentioned, so you have had quite an impact on the community.
With regards to the new administration, all I can say is I hope you’re right, though to me it means more deregulation and more likelihood of things like PSSD happening in the future.
Thank you for the input as well, the community will have to carry on as it so far successfully has, that is just trying everything
Harriet Vogt says
Coda to earlier response to Mary
What I didn’t mention, because I don’t know the answer, is ‘branding’ for such a proforma. Rxisk – not sure of David’s perspective? Mary’s group name? Other options?
Essentially – an authoritative source supporting and backing the patient.
Dr. David Healy says
Harriet
This is a really great idea.
It could be expanded out beyond PSSD and Protracted Withdrawal for other problems linked to antidepressants and other psychotropic drugs. What we maybe need is a working group to list all the problems and see if there are MedDRA and Snomed codes for them. Where there is no code we need to get working on applying for one – for Visual Snow Syndrome for instance.
Re Branding – it would be great to get Mary’s group recognized in this initiative – she and Shane have put in nearly a decade of work trying to mobilize people and make a difference.
I have no problem with RxISK being used provided it is recognised that RxISK is not DH. It’s you and Mary and Shane in this instance. It is the at present unnamed PSSD folk who are linked to RxISK who had the idea about MedDRA codes. It is Rosie Tilli, Roy Whaley and Simon Wright and others who have done so much publicly on the PSSD front.
It is Mark Horowitz who had the Snomed idea – which I initially dismissed – but which you now have weaponized.
RxISK has been waiting for a long time for a weapon. The RxISK report was inaugurated as a weapon but I think you might have come up with an even more effective one.
David
Harriet Vogt says
Let’s do it.!
Starting with Mary and Shane’s group.
tim says
This is a compelling proposal.
Surely it might begin to decrease the almost routine misdiagnosis of psychotropic drug ADRs as ‘Serious Mental Illness’?
In my own area of medical practice, I had to review and code all diagnoses myself for statistical/epidemiological monitoring. Coding in this context focused thought on accuracy of diagnosis.
Whilst I welcomed the Akathisia Awareness Advertising campaign on the London Underground; might not a code for Akathisia result in earlier, accurate recognition by those whose prescriptions so regularly cause it?
(Perhaps there is a code already that is unknown to me and is underused).
Dr. David Healy says
Tim
There will be an answer for you in a post on Monday
D
Harriet Vogt says
Ooh – another idea.
We can add references/ further reading as an appendix.
A chance to learn – some docs will bother.