From Monday 8 March, the Women's Health Strategy ... - LUPUS UK

LUPUS UK

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From Monday 8 March, the Women's Health Strategy will spend 12 weeks speaking to female patients about a wide range of issues...BBC article

eekt
eekt

*Less is also said to be known about many female-specific conditions and how to treat them.*

bbc.co.uk/news/health-56300404

gov.uk/government/news/gove...

Paul_Howard , can LUK lobby for lupus to be included ?!? MelanieSloan you're doing such a great job with research, can you help make lupus included?

ICYMI, here's some of Melanie research, with links to other BBC articles about it in my reply to the post!

healthunlocked.com/lupusuk/...

xxx

56 Replies

Great idea, second this.

eekt
eekt in reply to Redfox25

Thanks Redfox, it's time we had a look-in!! xxx

Autoimmune diseases in general affect women very disproportionately so I hope they do cover this area - good thinking!

eekt
eekt in reply to 282523

Glad we're thinking along the same lines!! Yes, indeedy, 90% women for lupus ! Two or three times women as men in MS xxx

282523
282523 in reply to eekt

Yes - and I know it’s just because Paul and Melanie are so proactive that the focus in always on Lupus. But I have systemic sclerosis and sjogrens and all the latter in particular affects women far more than men. Lupus is just the one most have heard of but I hope all rheumatic autoimmune diseases can come under one umbrella more because there’s power in numbers.

From youngest of 17 to oldest of 60s, all members of my SRUK zoom group and other forums are women. And we know that diseases affecting women are more often dismissed or ignored than diseases affecting men.

Hypothyroidism and Graves too are the most common autoimmune diseases affecting mostly women so altogether we are quite a large section of society.

eekt
eekt in reply to 282523

YES! Strength in numbers! I think Melanie uses the new term Systemic Autoimmune Rheumatic Diseases (SARD) in her papers....if you tallied up all of those, it would come to over 2.5m people. RA alone is half a million!!! I'm a sceptic and thought that's why the Covid risk criteria were changed back in March.. ;) xxx

282523
282523 in reply to eekt

Great calculating! It would be interesting to get a much wider survey done by a U.K autoimmune disease organisation (is there one?) to find out how many of us actually got diagnosed in a timely manner and what proportion of those who haven’t been are women. Mind you I know that men often find it very hard to get a diagnosis of Sjogrens just because they are men!

eekt
eekt in reply to 282523

Well, I think you've hit the nail on the head....I don't think there is an overarching organisation for SARD's. There is RAIRDA representing about 700,000...and strong support for 400,000 with RA though NRAS

And likewise, men struggle to get a lupus diagnosis! xxx

282523
282523 in reply to eekt

Thanks - I love your access to stats - I’m hopeless at this. It took me an age to work out that only 19,000 in U.K have Scleroderma and only 5% have my antibody - which my calculator says is about 76! I did find one other with it by chance, a Welsh woman driving instructor. We chat quite often as seem to encounter similar signs, symptoms and progression. Neither of us have a clue about the type or prognosis and nor do either of our Rheumatologists. Or if they do then they don’t keep us in the loop. But then my rheumy is a Lupus specialist so I try to do some homework for her because I like her so much and don’t want to get returned to a scleroderma clinic. She seems to find my research helpful although she says if I develop full blown systemic sclerosis then I’ll have to go back to the clinic.

So tacit agreement just to call it overlap CTD and cross fingers as Sclero is apparently the most “heart-sink” one.

I think I once asked an NRAS person why they accepted sitting under the MSK heading from a dept of health perspective? I know many with RA find having arthritis in the name frustrating as people say “you look too young to have arthritis” of “oh my nan has that in her thumb”. On the NRAS HU I think it’s often referred to as RD.

NRAS’s reply was interesting. I was told that it was more expedient for research purposes for to sit under MSK than autoimmune because they sit at the top of MSK conditions as the most serious. Whereas they sit way down the autoimmune diseases list because there are so many - quite a few more awful and life threatening than RA. xx

eekt
eekt in reply to 282523

That's good reasoning from NRAS! There are 80+ autoimmune diseases (and counting)

Gosh, one in 76!!! Now that's rare! xxx

282523
282523 in reply to eekt

Yup that’s me - a rare little spotty, multicoloured 🦓!

eekt
eekt in reply to 282523

Almost a unicorn! Very special! xxx

282523
282523 in reply to eekt

Aww thanks Eekt. Almost a week after celebrating rare disease day I find myself trying to see it as unicorn special rather than just a blasted nightmare! I guess it might explain why my Lupus rheumy sounded really pleased that I want to stay with her rather than go back to black and white stripe CTD clinic. I think she might just be feeling rather protective- even propratorial- over her tiny multicoloured ultra zebra who’s high antibody she discovered 3 times last year and is treating and monitoring using belt and braces approach now.

Being taken seriously is all so new to me, after a lifetime of fobbing off, that I’m finding it hard to adjust to. Only last week a GP I phoned to ask about CBT for pain management and profound gloom told me I was nothing special to warrant fast tracking for CBT and I should just take regular paracetamol for (nerve) pain.

Lucky I live with a zebra who loves me (but I don’t think this horrible GP knew this) or I would have contemplated all sorts. I don’t think people understand how lonely we almost-unicorns with so many overlapping conditions and awful symptoms can feel at times. But I guess it takes one to know one 😉🦓🦄🦋 xx

eekt
eekt in reply to 282523

SO glad you're being taken seriously now, just one good doc is enough, especially a rheumy to keep the GP's on their toes...and so pleased you've found zebra love! :) xxx

282523
282523 in reply to eekt

Lol I’m not sure he knows he’s a zebra yet (rare systemic tropical disease misdiagnosed for decades as psych) but I’m working on it! X

eekt
eekt in reply to 282523

Not another psych misdiagnosis...<rolls eyes>...at least you'll be able to rpvoide support on the diagnostic odyssey! xxx

282523
282523 in reply to eekt

Thanks yes I know 🙄🙄🙄

He listened hard to my phone consultation with my new(ish) rheumi and recorded it too for my recall🤯

Afterwards I was hopping about with relief and he was sitting frowning at my list I emailed her first. He said “you were both amazing - she seems to really care?” I said oh yes she’s just a lovely person isn’t she - opposite of our awful GPs. He hummed and frowned a bit more so I asked what’s up? He said “I think you need to give me lessons before my first apt with the consultant - I want mine to go that way!”. Hmm I haven’t the heart to tell him that my rheumi is an exception to the rule from my own experience - not many doctors around like her sadly. Hope he gets one too but I won’t hold my breath!

PS he was diagnosed 20 years ago but they haven’t followed up the damage done of living with it untreated for 30 years!

KayHimm
KayHimm in reply to 282523

The statistics probably come from the different specialties. There are single organ autoimmune diseases like Hashimoto’s, gastrointestinal autoimmune diseases, the systemic autoimmune diseases like lupus and Sjogren’s. It is a whole universe. Every area of medicine has to know how autoimmunity affects their patients. I think they have their own statistics too.

In the US there are 23.5 million Americans with some sort of autoimmune disease. The UK must have this number.

I can imagine men would have an even harder time getting diagnosed than women. They aren’t on the radar as women are. Sjogren’s is so hard to diagnose anyway. I read once it is a disease in search of an antibody.

282523
282523 in reply to KayHimm

I believe being Ro/ La pos with dry eyes is a pretty good indicator - they are SS antibodies just as much if not more than Lupus which has anti dsDNA - having raised immunoglobulins is very much associated with SS too.

I think if the will and mindset are there with SS then it’s increasingly being diagnosed. Problem is old school dullards like my first rheumi who don’t even believe it exists as a disease in its own right. When I told him I had been diagnosed by lip biopsy he just commented “ah well RA and SS are pretty much same disease”?!

eekt
eekt in reply to 282523

“ah well RA and SS are pretty much same disease” <rolls eyes> ...an ophthalmologist told me SS doesn't exist without RA...his eyesight seemed poor...he did have some AI criteria on his wall.... xxx

282523
282523 in reply to eekt

His AI criteria was probably from the Stone Age though. <roll eyes> indeed - very dry ones at that! A neurologist once told me that SS is always seropositive yet stats are same as RA of 30% seronegative. These guys just don’t keep up with the times as we do!

KayHimm
KayHimm in reply to 282523

I think what the doctor meant was there was not an antibody that is both sensitive and specific as with the anti DNA with lupus. The anti Ro and La do not pick up enough people.

My impression is from the article - will try to find it - that Sjogren’s is hard to diagnose and under-diagnosed.

It would be great if all of these diseases could have better diagnostic tests. So many suffer for years before diagnosis.

That is strange your rheumatologist told you SS and RA are the same disease. No idea what he meant by that. Poor you.

282523
282523 in reply to KayHimm

In the US these antibodies are known as SSA and SSB for a reason Kayhimm! 😉

KayHimm
KayHimm in reply to 282523

What makes you think we don’t use the anti La and anti Ro terminology? I read about it in studies (usually mentions both) and my doctor always said “anti La” positive. The point the doctor was making is that a good test tells you a disease is present and when it is absent tells you it doesn’t exist. The problem with the Sjogren’s antibodies is they aren’t positive in most patients and negative in those without the disease. That is what the Sjogren’s expert meant, I think. They need to look for more specific markers.

282523
282523 in reply to KayHimm

Ah - I use large Sjögren’s forums where most are from US eg Smart patients. Very few use Ro and La - they almost all just say “my SSA or SSB (or both are positive so I was diagnosed with SS despite not having dry eyes”. Honestly I really do know this Kayhimm. With symptoms Ro and La have similar specificity to SS as anti dsDNA and anti CCP have for Lupus and RA respectively. I don’t know where people get this SSA/ SSB from. I’ll ask and let you know if you like but barely anyone says anti Ro and La on US Sjogrens forums.

These antibodies are positive in 70% of people with Sjogren’s same as anti CCP is present with 70-75% of those diagnosed with SS carrying them. The reason I know is partly because I don’t carry them so classed as seronegative and diagnosed by lip biopsy instead. Seropositve for scleroderma now though post SS diagnosis 🙄😊

KayHimm
KayHimm in reply to 282523

So here was his answer when I asked how they know what antibodies are causing the problem. “We don’t.” 😅 He said he just got back from the Tuesday morning case conference at the affiliated city hospital and a complicated rheumatology patient was presented with lots of antibodies and also lots of problems- lungs, muscles. He said we have to treat the patient’s problems. He said he does second opinions from patients whose rheumatologists either aren’t very good or are not sure of themselves. The problem is they have gotten too bogged down in diagnosis and aren’t treating the patient.

Sorry, eekt, for going on a tangent. Your post sparked interesting things.

Wouldn’t you know women would be the ones with autoimmune diseases?! Impossible to diagnose and easy to pass off as psychosomatic. 😣

XK

282523
282523 in reply to KayHimm

ncbi.nlm.nih.gov/pmc/articl...

282523
282523 in reply to KayHimm

Ps not strange - he was in the dark ages about both Sjögren’s and Raynaud’s - a pal tells me he still is. Not much of a lupus man either tbh.

282523
282523 in reply to KayHimm

Ps he also referred to menopause as “the change” - periods as “your time of the month” - so old fashioned!

282523
282523 in reply to KayHimm

Ps there are lots of overlaps with SS - so for example antibodies Ro and La are often found in people with Lupus and Sjögren’s overlap CTD. But I think anti Ro is pretty specific for those with SS and also carries the higher risk of SS related lymphoma.

KayHimm
KayHimm in reply to 282523

A good test captures all people who have a disease and if negative means they don’t have the disease. People with cutaneous lupus have anti Ro antibodies, as an example. I think your comments are proving the doctor’s point. The tests are not good enough. Good tests are specific and sensitive. 50 to 70 percent of Sjogren’s patients have positive antibodies. That is probably what makes diagnosis so challenging. Doctors do the tests and in many patients it is negative. People are missed.

I am only challenging you because it is the lack of better diagnostic testing that in part contributes the difficulty in diagnosis. Researchers are finding new antibodies all the time. The hope is that they will find an antibody that correlates better with Sjogren’s.

282523
282523 in reply to KayHimm

Yes I know and many won’t be encouraged to have a lip biopsy as I was because it’s a bit invasive. But it’s exactly the same with RA. And probably with Lupus too in reality. People here are diagnosed with seronegative Lupus but it’s often called UCTD instead.

The only difference is that routine imaging such as ultrasound and X-ray can be used to diagnose Seronegative RA and inflammatory arthritis. But often only when damage has already occurred.

I mean with PsA and AS (Spondyloarthritis) there are no antibodies but they can often be confirmed by imaging rather than requiring skin or lip or invasive kidney biopsies. Although even then they can apparently present differently in women than men and often need genetic markers.

Myself I’m due to have a skin biopsy from my facial rashes to exclude lupus and diagnose rosacea or sebhorric dermatitis or even possible dermatomyositis.

But in the present situation there is far too little understanding or research into seronegative rheumatic diseases full stop. You have to be seropositve to qualify for the vast majority research trials for all systemic rheumatic autoimmune diseases. And there’s usually no inclusion of people overlap syndromes either. And yes this absolutely includes seropositve Sjogrens.

Maybe because they affect more women and we have more fluctuating hormones and there is a known link - as well as the more insidious but prevalent gender bias. Sjogren’s antibodies are pretty specific though - but this won’t help the 30% who don’t carry them same any more than it helps people with seronegative RA and Lupus. Too often irreversible damage has to occur before a diagnosis is made - a horribly reality.

The antibodies probably exist but either haven’t yet been discovered or are too rare (like mine) for all labs to bother testing for. It’s all lazy really KayHimm. We agree on this. But loads of research is being done and maybe with the links with APS and Covid antibodies - there will be more antibodies discovered as immunology gets more take up. It is the most complex of specialist fields I was once told by a consultant immunologist and senior university lecturer. And trainee rheumatologists were only required to do two modules on immunology as part of their training 7 years ago when we discussed this on a coach journey. My first rheumatologist admitted that he’d only had to do half a module on immunology back in his day.

KayHimm
KayHimm in reply to 282523

Sorry. We just have to agree to disagree. Yes, researchers have not been able to find antibodies for all autoimmune diseases. They still haven’t found one for multiple sclerosis, as an example. I am not sure that is laziness. The medical community has focused a lot of attention on autoimmune diseases in the past few decades. The fields of rheumatology and immunology are inextricably linked so I don’t know how we can judge whether the time spent on an immunology rotation is adequate.

As I have stated here before, the United States does 75 percent of the world’s research. Lupus research has been enormous and expanded this past year. The idea that autoimmune diseases are neglected may not be correct. That would be hard to measure. But the knowledge and awareness of autoimmunity has exploded. Years ago the only test for lupus was a syphilis test. That is no joke. There was no such thing as APS when I was diagnosed, just an awareness that that people with the false positive syphilis tests may have the antibody Graham Hughes from the UK had discovered. I don’t hear laziness.

We need to keep perspective. Because they can’t find an auto-antibody does not mean they haven’t tried.

I know it is frustrating that the researchers don’t have the answers. But we cannot make assumptions about their motivations or lack of funding. The immune system is very complicated.

282523
282523 in reply to KayHimm

Other than on autoantibody facts we aren’t disagreeing at all Kayhimm? You are the one who stated that there are no specific antibodies for Sjogren’s and I pointed out that you are wrong.

There are. It’s just that lupus still has more awareness and status as a full blown systemic disease than SS. This is changing now though but Lupus was discovered earlier and there are also lots of patients who underestimate their sjogrens and attribute too much to their more established and better recognised overlaps. I see a lot of this and find it very disappointing - particularly here.

So many with Ro and La antibodies also have Lupus - or think they have. But they choose to focus on their Lupus because it’s more famous and is still, quite wrongly, taken more seriously. This is what I believe at least and I’ve attended EULAR congresses, follow Sjogrens and lupus forums and see it all the time with lupus/ Sjögren’s/ scleroderma friends.

For example I have a US friend who runs a scleroderma education programme but spells SS shorgrens or sometimes showgrons - never recognises that it’s can be as serious as it is. He persistently tells me I have diffuse scleroderma with secondary showgrens - yet he’s a scientist at the forefront of education and research into scleroderma?! And 20-30% of those with Scleroderma have Sjögren’s (trying to train my spellcheck to recognise the umlaut!) overlap which will influence their prognosis - as these antibodies usually do.

And I wasn’t in anyway trying to diminish the work done by immunologists at all - perish the thought! I would never do that. I said that immunology is probably the toughest area of medicine and there aren’t enough medical students who are willing to sign up for it because it’s so hard!

But there are far too many Rheumatologists the world over who just don’t keep up with the latest research - and research is often funded by Big Pharma. So the diagnostic criteria for those included in trials is usually seropositivity. Lose lose for all with seronegative and overlap CTDs.

Sorry Eekt for hijacking your post with this interesting but unrelated tangent we’ve taken here! 😊

KayHimm
KayHimm in reply to 282523

I think we agree. Yes, there are associated auto-antibodies. A research group at Mayo has discovered twenty new genes associated with Sjogren’s. They say more needs to be done.

Ophthalmologists seem to be in on the action too and advocate for early diagnosis to prevent damage.

I do think the understanding of lupus is more advanced. Hopefully that will change. As people here have pointed out, it is not that rare.

I think I felt a lot worse in the days when I got dry eyes, nose and mouth. Yeah, maybe it was more the Sjogren’s that caused the worst symptoms- fatigue, nausea and muscle aches.

282523
282523 in reply to KayHimm

You never know Kayhimm - perhaps if you ever decided to have a lip biopsy done it would be 100% positive as mine was? Perhaps you have SS😎 as your main, seropositive rheumatic autoimmune disease without even knowing😉?! X

KayHimm
KayHimm in reply to 282523

Could be! I have anti LA antibodies and elevated IGG. I guess it is how they conceptualize it. The Sjogren’s part was out there definitely in the beginning - used to tell my internist something was in my eyes. He would look in my eyes and say he didn’t see anything. 😅 No wonder we think we are going crazy.

I used to have peas on my neck and no one will ever convince me that was normal. They went away when I got better. ☹️

282523
282523 in reply to KayHimm

Hmm I would bet my bottom dollar that you have SS as your main RAD but I’m aware that you are happy with your doctors, diagnosis and treatment so I’ll shut up now 😎😉😃

PS I have elevated IgG too - and also IgA. This was partly how I was diagnosed with SS!

KayHimm
KayHimm in reply to 282523

Haha .. you are probably an expert by now. They seem most concerned about neuro stuff. I did ask if some of that could be from the anti LA antibodies. He reflected on that and ran tests. I am going to tell him tomorrow to change my diagnosis. 😅

282523
282523 in reply to KayHimm

Neuro stuff?? Um...what to say really - so many friends report this and have shown all the classic hallmarks of SS as you have and yet..??? Maybe this is a relevant conversation to have as international women’s day draws to its end after all!!

Go for it Kayhimm - you’re an expert too. Give him back his “undifferentiated” and show him who’s boss in this team eh? The person who studied at medical school for 7-10 years or the person who lives with this stuff 24/7? X

hopkinssjogrens.org/disease...

KayHimm
KayHimm in reply to 282523

I will definitely bring it up! It is interesting when there is overlap to know what is causing the problem, right? I have low intermittent anti-cardiolipin antibodies too. No anti-DNA antibodies, which makes him lean away from lupus.

Think I am just a hodgepodge. At least I have good company here, right?

Thanks for bringing this to my awareness!

282523
282523 in reply to KayHimm

You’re just a sweet little ol’ multicoloured zebra like me KayHimm. But the difference is that I’m not labelled with undifferentiated because I have overlap stripes, some of which are fully grown. Bet you do too 😉xx

Ps those APS antibodies also often go hand in hand with SS

KayHimm
KayHimm in reply to 282523

🦓 but feel like a 🦕 at times ..

282523
282523 in reply to KayHimm

No not extinct - just 🦄🦋🦓🦋🦄😎🤗

282523
282523 in reply to eekt

This link might be a good one to send to BBC to get their attention. Do you know how I can contact the programme makers - would this be Woman’s Hour or should we be aiming for a wider audience?

patient.info/news-and-featu...

eekt
eekt in reply to 282523

Great! Woman's Hour would be good...and the journalists who have written the recent BBC articles...don't know how you track down a means to contact them....Twitter? xxx

282523
282523 in reply to eekt

Oh dear. I don’t have Twitter - nor want to either!

eekt
eekt in reply to 282523

Maybe someone here can Tweet! :) xxx

282523
282523 in reply to eekt

🐦🐦🐦🤞🏻x

Third this!!!

eekt
eekt in reply to Insomniacette

YES! United we stand! 👍 xxx

Thanks, eekt. Good to see there is a discussion about women’s health. A woman donated money to open up the first women’s health center in New York City. I have to say it is sort of nice to have appointments there and experience an “all female environment” and know the doctors consult amongst themselves about women’s medical issues.

XK

eekt
eekt in reply to KayHimm

This started with strong lobby of Parliament on endometriosis care in the UK. An All Party Parliamentary Group (APPG) on Endometriosis released a 78-page report in collaboration with Endometriosis UK on how the disease affects people - some women are still being told to get pregnant and all will be well...

This Strategy coincides with International Women's Day! But they don't seemed to have taken into account illnesses that *mostly* affect women like SLE... let's see what comes of it!

Hoping things are safer where you are now, stay safe

xxx

Hidden
Hidden

Neither male or female oriented but simply a list of AI from the American Autoimmune Related Diseases Association (over 100 listed):

aarda.org/diseaselist/

aarda.org/diseaselist/

eekt
eekt in reply to Hidden

😯 thanks very much for this! eek, over a hundred! xxx

Hidden
Hidden

I think the operative word here is “related”so the autoimmune cause may yet to be proven?🤷🏽‍♀️🤷🏻‍♂️🤷

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