LUPUS UK has funded a research study looking at neurological and mental health symptoms in people with lupus. Many of you may have already contributed by taking part in surveys/interviews (THANK YOU). We will share the results of the study as soon as possible.
The researchers would like to hear from the patient community which words/terminology they prefer when discussing neurological involvement of lupus.
Please could you answer by commenting below (alternatively you could message MelanieSloan directly or email mas229@medschl.cam.ac.uk).
Which do you prefer?
1. Neuropsychiatric lupus (NPSLE)
Or
2. Neuro-lupus
Written by
Paul_Howard
Partner
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If it was purely for psychiatric problems, I prefer Neuropsychiatric Lupus (NPSLE) as this title clearly indicates what the patient is suffering with.
Being a patient myself at a Psychiatric Hospital, I feel that NPSLE immediately identifies the condition & also helps to raise awareness of how Lupus can affect a person psychologically. As a former Paramedic, (& Dental Nurse prior to that), clear names/labels/medical terminology is something I feel is warranted. I like labels as there is no confusion as to the ‘content.’
Eg, a cupboard full of unlabelled tins could cause problems at meal times - you may want a tin of tomato soup but end up with mushy peas!
I think the name Neuro Lupus is more broad spectrum & can imply a vast range of neurological symptoms & illness without being specific. If that was the intention of the survey, then this would be appropriate.
Definitely Neuro-lupus for me ... less emphasis on it being purely psychiatric in nature and not necessarily extending to neurological which I believe can have negative and judgemental implications for patients. I believe lupus can be neurological without necessarily also having psychiatric involvement? I may be wrong in this assumption but if this is indeed the case, then the simpler neuro-lupus can encompass a wider range of meaning.
Thanks very much. Yes, that is exactly our concern due to the stigma still associated with the word psychiatric. As you say some people have symptoms that are purely neurological, and although NPSLE could cover both the neurological and psychiatric, the implications to many health professionals can be different.
I like the CNS lupus as it's precise and medical, emphasising the biological process first. Psychiatric considerations should ALWAYS be at least considered by Doctors as a potential secondary manifestion to underlying CNS disease process.
I believe there's a bias in Rheumatolgy that emphasises lupus patients as just somehow ' unstable ' as a patient group and this needs to be tackled at every front.
There are “DIFFERENCES” in the way LUPUS can affect the Central Nervous system.
Headaches, Seizures, Strokes, Brain Fog, etc verses TRUE “DEPRESSION, ANXIETY , etc” which are not as a RESULT of just having a CHRONIC ILLNESS, ill health, eyc -
A lupus person can also have TRUE “CLINICAL PSYCHIATRIC ISSUES” that are separate and need specific treatment.
I prefer Neuropsychiatric SLE ( NPSLE) I think "neuro Lupus" does have a place regards the "general widespread description" and could apply to those with specific neurological symptoms. However, I think "neuro" rather than NPSLE is not taken as seriously by medical professionals, and doesn't fully cover those with psychiatric/ mental health issues ...These issues are nothing to be ashamed about and the "psychiatric" bit shouldn't get undervalued or dismissed
Very good points fabwheelie and completely agree about the fact we shouldn't be ashamed about any of the psychiatric symptoms or the 'psychiatric' in NPSLE, but our worry is the misunderstanding is still there. And we have had a lot of people saying they didn't like being diagnosed with NPSLE. I think you are onto something that maybe neuro-lupus could be a more a widespread term and NPSLE reserved for the more serious cases.
Thanks for your reply, perhaps terms could even be interchangeable to some extent. For example explaining to family and friends people may feel more comfortable saying Neuro / Neurological, and for medical purposes, DWP benefit claims etc the "seriousness" of it covered by NPSLE / mention of the mental health/ psychiatric side of those symptoms
I think also patient consensus and choice so we can "own and claim" the "label " that the majority prefer is important
Thanks very much to everyone who has already responded, and the reasons you've all given are very valid and valuable for helping us decide which terminology to use.
It is difficult because each of the terms has pros and cons. We have ruled out 'CNS lupus' because it's now better understand that neurological lupus doesn't just impact the Central nervous system but also the PNS and ANS (peripheral and autonomic nervous systems). Some doctors, particularly old-style neurologists are still using CNS vasculitis, cerebral lupus, lupus cerebritis etc but that doesn't then include the many symptoms that don't fit in these narrow terms.
We are meeting with the study rheumatologists, neurologists and psychiatrists this Friday (9th Dec) so any views by then would be great please and also anything else you would like discussed.
Further to my comments above, I wish to add that in my experience the term NPSLE would make more sense. This is because I have a long-standing history of mental health problems, (PTSD, anxiety & depression) & have been under the care of CMHT for many years. Over the years I’ve had frequent involvement with the Crisis Team & have been admitted into Mental Health Hospital following a nervous breakdown. (Being medically trained - plus also being a fully qualified, experienced Person-Centred Counsellor & Psychotherapist, I prefer to look after & care for others & hate being a patient myself!).
On being diagnosed with SLE Lupus in June of this year (2022), I was prescribed Hydroxychloroquine to which I had severe reactions & was told to stop taking it immediately by Rheumatology Hospital after taking it for 7 weeks. I was next given a 14 day course of Prednisolone which I also had severe adverse reactions to which ultimately resulted in a complete mental breakdown. Rheumatology told me to immediately stop taking those too before the end of the 14 days without tapering.
My point is that had my mental health history been given greater consideration prior to the prescribing of both Hydroxychloroquine & Prednisolone, I could have been more closely monitored & not suffered as severely as I did as a result of taking them.
The information leaflet for Prednisolone clearly states it can aggravate/affect those known to suffer with Mental Health problems. Also, in the latest issue of Lupus UK there is an article regarding the safety of Hydroxychloroquine, (published by the MHRA), and how, “vigilance for mental health symptoms is recommended, especially within the first month of commencing treatment.”
Unfortunately for me, I will not be able to have either of these drugs again but had I the diagnosis of NPSLE, my Rheumatology Team & I could have been better prepared.
NB, Prior to starting the Hydroxychloroquine, I had Anaphylaxis following a Depo-medrone Steroid injection. This happened in the Rheumatology consulting room resulting in 2 lots of Adrenaline & 999 🚑 to A&E.
Due to this, plus struggling to come to terms with diagnosis of SLE Lupus, I was already in a very vulnerable mental condition when Hydroxychloroquine was prescribed.
I make no apology for my long reply as you did ask for any further views! Lol, However, I do apologise if I have misunderstood/misinterpreted the purpose of the original post.
Maybe neither Neuro Lupus or NPSLE are the most appropriate titles and you haven’t found the right one yet? Perhaps another name may have to be considered…… Either way, it’s all very interesting & I thank you for the great work you all do.
So sorry to hear all you've been through, and a long reply is always appreciated and useful.
The problem is that there are no definite established terms but NPSLE, CNS lupus and neuro-lupus are the 3 most commonly used and understand in research, by clinicians and some patients. I think we would struggle to get a completely new term used but we can represent the patient views as to preferences - as it's us with these diseases and 'labels' so they should sit comfortably with us!
I think the full term 'Neurological lupus' is better than 'neuro lupus. though as sounds a bit gimmicky.
As so many symptoms can affect peripheral nervous it would be great if they too could have the recognition they deserve. I think it is really important to draw out neurological sub-entities, like autonomic dysfunction, and poly-neuropathy , so they don't get brushed under the carpet with rheumatologists just saying that motor and sensory loses, or temporary multiple sclerosis type symptoms 'could be due to anything' and moving off the subject.
Annoyed that in the past the SLE criteria setting folk have only taken an interest in psychiatric symptoms when it is obvious and logical there can be other impacts from the neurological perspective.
Psychiatric Lupus possibly is one of three areas within Neurological Lupus, not the entire thing.
Thrilled that you are pushing for a revision. Thanks for all you are doing.
Yes very good point about the peripheral nervous too - a very neglected area. Also about the current criteria being very limited - our first paper (which i just need to finish over Christmas!) on this shows the huge range, severity and suffering caused by these symptoms so hoping it will filter into some more understanding and action.
I've been thinking about headaches and if better definition could be given to the range of headaches that we get.
Recently checked for GCA by local rheumatology, after Ultrasound being negative the pathway then seemed to default to migraine which I know it was not. My own rheumy at another hospital then recognised sinus issue not checked locally.
If patients were given pathway info and diagnostic criteria they could probably work more of this out themselves, seeing doctor F2F a rarity. To help appointments on phone, a map of the skull with areas labelled would help (eg. saying top of head can be too vague), maybe even a map giving 'skull coordinates' so we can give the exact location, rather than definition being lost and not recorded anywhere.
Also there is the assumption that the headache must be one type when I'm sure we can get different headaches occurring together or say over the same week (when we may be having something looked into ) particularly if say 'on steroids' which may also be changing the situation.
Oh that's a fantastic idea! Particularly with so many appointments being on the phone. Our next study is looking at pre-appointment checklists of symptoms and improving the eliciting and reporting of symptoms and your idea fits very well into that study too - thanks so much!
I find quite a lot of people shorten wording to initials, I’m always googling these days to find out what they’re talking about. Therefore regardless of what you call it, someone will end up shortening it or just initials 🤷♀️🙂
True indeed, I guess it's the difficulty of getting a rheumi to establish Neuro lupus that is the challenge. On paper you'd think I would automatically be in the NPSLE group. But often rheumis and neuros and pysch don't really combine efforts and difficulty comes if no one is willing to acknowledge the issues. I wonder how many people have chronic AI encephalopathy at times for a similar reason, I've never seen it truly tested, with lumbar punctures and relevant scan methods.
Neuro lupus helps, in the sense that the word neuropsychiatric, although more realistic and encompassing, can easily, at least where I work, be seen as functional therefore. Even though that's not what it means in this context at all.
CNS lupus, I know it's outdated likely, but it's just almost to say, look, this damage is real and severe. Alongside the PNS and ANS manifestations, it would possibly even help to divide these up, and have some credible way to test for these manifestations beyond subjective, self reported symptoms. It's just an extremely difficult kettle of fish that I really applaud you bringing to the forefront which may in time help HCPs hopefully see, recognise and deal with all aspects of lupus in a more wholesome and thorough manner.
For me, the autonomic dysfunction, seizures, hallucinations and mood changes amongst other things, although known, no specialty will consider the likelihood of neuro involvement. But I guess that's the challenge you are and trying to break down. So much more could be done from early diagnosis to chronic illness counselling and support to trying to test and regularly check for these issues and see what can be done.
Really great points thanks Lottielou and yes, so important to improve so many areas - the diagnostic journey, the diagnostic appointment, some counselling/adapting etc. Hopefully we can all work together to make a difference.
NPSLE. I think it identifies better the psychiatric part more which is so so important . ‘ Neuro Lupus’ might sound better but really does not encompass the mental devastation and anguish which needs to be flagged up and more easily identified by professionals .
My immediate reaction was neuro lupus. But then I thought that neuropsychiatric lupus would be more likely to be taken seriously by doctors (and benefits agencies).
But please could someone explain to me (in words of one syllable please 😀) the difference between neuropsychiatric and neuropsychological? I had neuropsychological tests at the beginning of the year which the neuropsychologist said were showing similar pattern to other lupus patients.
Neuro-lupus describes the neurological condition that has increased after about 15 years of this autoimmune disease which includes several physiological systems.
Many people are initially dismissed as having psychological or psychiatric problems when the first seek help for Lupus symptoms. I think Neuro -Lupus shows a physical connection to the cause of the symptoms.
Following on from my previous comment, I just wanted to elaborate on why I preferred Neuro-Lupus and apologies in advance if I've misinterpreted what you have posted.
When I was in the process of being tested for this, non-medical professionals - in other words - laypersons (incl. some medical professionals but a minority) when being notified, viewed it as though it was just purely a psychological problem and not lupus-related as in, not regarding it as a neurological aspect of lupus. Using neuro- lupus, would place more emphasis on its meaning and redirect individuals to view it from a neurological standpoint, which consists of a wide range of symptoms from hallucinations, memory, speech issues, migraines, and tremors to balance issues, muscle spasms, etc.
Indeed, there is a psychological element but sadly, there are those that dismiss the 'neuro' and the 'lupus' and as a direct consequence, it can cause a domino effect of delayed treatment and also help, which results in further deterioration for the Lupus patient that is suffering in silence.
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