Diagnosis of Lupus

[Buxton26]

So hi, new to this group and in the process of possibly being diagnosed with Lupus. They have told me my bloods came back positive, but they want to repeat it. What does this mean?

Thanks in advance for your replies

[Hidden]

I know I’ve been argued with about this, but, I’ve understood that they like to get three positive ANA’s and then move on to more specific blood work. That the ANA can come out with false positives and false negatives, so they want to be careful and not subject you or your finances to deeper testing until they deem it needed. That’s my understanding and that’s the protocol all my doctors have seemed to follow.

🙏 Here’s hoping you’re positive was a false one and that you will discover you’re fine?

[eekt in reply to Hidden]

That's a reply from the USA...in the UK, if ANA is positive, then the lab does the ds DNA, - amongst others - automatically. dsDNA is an antibody test that's highly specific for SLE.

There's different ways of testing dsDNA, some say how much, some say how specific, so maybe they're checking that out Buxton

There are other immunological blood tests that can led to a SLE diagnosis in the UK too eg low platelets, sticky blood...in the US it's no ANA, no SLE

LupusUK has great info on getting a diagnosis on its website

NHS is free at the point of demand Brookside, appreciate things are very different in the US

Be well Buxton xxx

[Hidden in reply to eekt]

I do appreciate it, but are you saying you got a quick diagnosis? Because it seems everyone in here is pretty much on the same time frame.

[eekt in reply to Hidden]

different continent, different time scales...your advice is not applicable in the UK

[Hidden in reply to eekt]

Ouch! So basically I should get off the site? Is it just me, or do you hate all Americans? Buxton asked a question. I just answered as honestly as possible.

And she had stated that even with a positive ANA, they wanted to retest her, not go on to the next test, and she was asking why that would be.

Btw, you haven’t answered my question to you. How quick was your final result? How long did it take you to get a diagnosis?

[TM1970 in reply to Hidden]

God please do not leave, especially as US is further ahead in research and also because you’re very helpful and lovely with it. X

[Hidden in reply to TM1970]

Thank you TM, but if I’m not welcomed🤷🏻‍♀️ I’ll go. I just don’t understand what I said that came off so offensive.

[TM1970 in reply to Hidden]

Tbh neither can I . X

[Hidden in reply to eekt]

PS, I don’t think my answer was in the way of giving any advise. What advise did I give Buxton?

[KayHimm in reply to eekt]

eekt - no, don’t see any difference in diagnosis in the US. Very complicated. But all labs and features are taken into account. I have no sense that the UK experts and US experts do anything but try to refine diagnosis. It is interesting to note that many of these doctors have worked together over the years.

XK

[eekt in reply to KayHimm]

There is a very distinct difference - the new American College of Rheumatology criteria (ACR20) has ANA as a must, whereas the UK SLE guideline has a range of immunological tests including ANA.

While the ACR criteria are for research purposes, they are of course also used for diagnosis. One positive ANA ever in a lifetime suffices: 'Occurrence of a criterion on at least one occasion is sufficient'. xxx

[KayHimm in reply to eekt]

Hi eekt -

Are you talking about the proposed new lupus classification with the weighted domains? I don’t think that has been passed yet. My understanding is that experts from all over the world worked on that classification. I know there are doctors here who don’t like it for specific reasons. I imagine there will never be a perfect classification. These diseases are too complicated.

In actual practice rheumatologists use their judgement. The best account I have read is that in diagnosing a patient, the rheumatologist uses every bit of information at her disposal. For research, they have to stick with the rigid classification. That made sense to me. So a photo of a rash may be taken very seriously by a doctor when diagnosing but a biopsy or in person evaluation needed to meet research criteria.

The classification has changed over the years. But patients are who are they are.

I know my doctor has gone to hear prominent British rheumatologists like Graham Hughes speak. He worked in the US when he was young. Good doctors keep learning from others.

xK

[KayHimm in reply to Hidden]

Hi Brooksidecourt-

I think everything has to be taken in context. Totally understand that your ANA may have needed to be repeated three times. But I think that is unusual. There are no rules. A high titre ANA with anti DNA antibodies would maybe indicate lupus.

I do not see any difference in diagnosis between the UK and the US. Good rheumatologists in both countries have a high bar for lupus.

Those of us with UCTD generally do not have the confirmatory antibodies of lupus that indicate more severe disease.

[Hidden in reply to KayHimm]

Hi KayH, and maybe that was it with me. I had one false ANA and two positives. But am UCTD/Latent Lupus and they are now thinking to add Sjogrëns. But I’ve read a lot where the false positive and false negative ANA happen a lot, hence, more than one test to be sure.

I wasn’t suggesting anything to Buxton (any future action on her part) I was just answering the question to the best of my knowledge. I am the first to admit I am no professional, have no expertise... just answering a question as I saw no one had yet answered Buxton and I know the UK goes to bed about now (8 hours ahead of me? Roughly?) I didn’t want to leave Buxton completely hanging. If I see someone not being replied to, I like to reply so they don’t feel that no one is listening, no one cares. We all care.

I know our two countries’ systems run differently and I don’t think I have ever voiced my opinion on that subject, as I realize I am a guest here on this site. It would be rude and none of my business to make any comments. I just felt Eek came in a little harsh. I don’t know if it was me, Americans in general, or if she/he just had a really bad day. But in any case, I was simply answering a question put out there. Buxton has a positive ANA and wondered why they wanted to run another ANA blood test, so I was answering with my best guess since no one had answered and it’s late in the UK so answers may have not been forth coming for a long time.

I, like everyone else on this planet (unless you are a masochist) don’t like to feel attacked, especially when I feel it’s for no reason.

But thanks KayH, I totally get what you are saying, and Buxton, my apologies for taking this waaaaaaay off topic! This is about you and your question. I am really sorry.

[KayHimm in reply to Hidden]

I actually think there is little difference in testing and diagnosis in the US vs UK. The problem is with us patients. Some of us are clear cut with positive ANA and other specific auto-antibodies to support diagnosis. So many of us do not fit neatly into the box. Very difficult.

I posted about diagnoses and colors. I felt that captured us more than words.

It is important to remember that in this small world of lupus experts, they are all colleagues. I gave my doctors in NY an article by Professor Graham Hughes regarding his patients’ difficulty with long haul flights. Glad I was believed. Now it is in my chart! They do the best they can based on observation from the expert.

XK

[KayHimm in reply to Hidden]

Exactly. It is all in context. If a young woman is hospitalized with fever and declining kidney function and a highly positive ANA - that is a different scenario.

Very important to note that usually when lupus is suspected with organ threatening disease, they do everything they can to diagnose it.

The biggest difference between UCTD and lupus is the threat to the vital organs. At least that is what I am told.

[Hidden in reply to KayHimm]

I’ve read the same. Though, it certainly feels like it affects my brain😆and apparently there are those in here who would agree?

[KayHimm in reply to Hidden]

Yes, definitely! They just don’t know what to do about those “brain” symptoms.

[KayHimm in reply to KayHimm]

No evidence as to how to help. So we help each other! ❤️

[overnighthearingloss]

Long time ago now but I got very quick answers when my employers pushed me into making use of my private healthcare package after quite a long period of poor health.

I vaguely remember a GP from my practice suggesting lupus traits but I think testing was done via my private healthcare.

Either way it took a lot of weight off my shoulders at the time. At least I had a solid reason to present to my employers to explain why I was so poorly. It's all so long ago now but think I was only tested with dsDNA via my healthcare package. As things got more involved I transferred to an NHS Centre of Excellence who carried out more extensive testing.

I think the reason for more than one test can be due to some tests not being infallible, or because more criteria is needed to make an official diagnosis.

Whether they finally decide you fit the lupus classification or not you will still need to work out how you can take better care of yourself. That's a big message that is being delivered right now.

[Hidden in reply to overnighthearingloss]

Absolutely.

[KayHimm in reply to overnighthearingloss]

Yes, that seems to express exactly why repeat tests are necessary

[Buxton26 in reply to KayHimm]

Thank you all for your replies. X

[Lupiknits]

Welcome Buxton! You’ll find this forum a helpful friendly place. We are a great mix of people who share our experiences. I’m sorry I was too worn out to welcome you last night: I’d spent some time visiting an elderly friend in hospital and came home wiped out.

I don’t have a primary diagnosis, which I call my mixed bag of connective tissue disorders, though my secondary one is a definite Raynaud’s.

You’ll find lots of information here lupusuk.org.uk

I started my adventures in Rheumyland with positive ANA and whatever it is that has an indicator in the blood for systemic sclerosis. Since then I have a bit of Sjögren’s to add.

My general feeling is that I don’t care what it’s called as long as you treat it!

I do hope you get some help. It can be a long frustrating journey. We’re here to share.

[eekt]

Sorry I started up digressions Buxton. In my case, the highly-specific test for SLE, dsDNA was repeated to rule out lab error before diagnosis at my second rheumatology appt. dsDNA doesn't appear in anything but SLE, which is why the rheumatologist said at the first appt 'it looks like lupus'.

You'll find lots of information and support here on the forum, and in the LupusUK pack if you join xxx

[Barnclown]

👋👋👋👋👋Hello & welcome Buxton 💐

Thanks for starting up this interesting discussion. Am sorry you’re having to go through this ordeal, but it’s good you’ve got True Detective medics who are committed to understanding whatever overlapping issues underly your version of immune dysfunction & connective tissue disorder illness.

If you do some reading of posts here, you’ll discover this forum includes folk from all over the world who are surviving the diagnostic & treatment process, some with such clear manifestations they meet official diagnostic criteria immediately, others with significant signs & symptoms but less clear clinical picture, &/or lab test & imaging results whose cases take longer to diagnose convincingly + adequately medicate

Hope you’ll not mind if I add a bit of ‘historical perspective’ to all this...

To complicate things further, some of us, eg me, were diagnosed decades ago when diagnostic tests & pharmaceutical treatments & complementary therapy + self help techniques were much more basic:

i’m 66 & have lived in the UK all my adult life, but i was diagnosed in 1954 by an expert NYC clinician as a toddler mainly based on my lupus rash...this was way before today’s tests, imaging, diagnostic criteria & meds existed. Medics have been diagnosing lupus for centuries, science & medicine advance....today lupus patients & medics & support groups like Lupus UK know relatively more about systemic autoimmune diseases & are relatively ‘better’ at helping each other - but there is still a long way to go....all the truly expert medics & patients & support groups admit this openly

In my case, ‘the proof is in the pudding’:

my infant onset Primary lupus still meets current diagnostic criteria, and I’m responding positively to ALL my treatments & self help, AND science is so sophisticated now that I’ve also been diagnosed & adequately medicated re several other overlapping Primary + Secondary immune dysfunction & connective tissue disorder illnesses, but this has taken decades. In many ways, my story is fairly representative, I think/feel.

Apologies for the long reply, but maybe something in it can help you or others here as time goes by. Hope you’ll visit the Lupus UK website: it’s full of great info....for what it’s worth, I feel/think this forum is THE BEST for solidarity & good company ie even for having a laugh 😉...it’s been My Rock for over 10 years now!

lupusuk.org.uk

❤️🍀❤️🍀 Coco

[KayHimm in reply to Barnclown]

Yes, Coco, there are so many variables. Good you brought up your situation. Adding to that are people whose auto-antibodies cross-react. They used to think that was why I had a negative ANA with a false positive VDRL. Eventually, it was positive. But just the two of us demonstrate how hard it is to interpret these results. They have to see them in the context of all symptoms.

How they express less clear cases is a question of style. Now the UCTD diagnosis seems to be used frequently all over the world. If someone leans more in the lupus category, they can say “lupus-like.”

You are so right about the tests being better too. When I was young they were just learning about some of the auto-antibodies.

I wish I had people like you to help me when I was going the diagnostic process. Such a confusing and depressing time.

Hope you are feeling a bit better. Are you able to tolerate any solids yet after your surgery?

😍k

[Barnclown in reply to KayHimm]

😍👍👏👏👏👏 Well Said...&: I WISH I’d had ALL of you to help me through all those decades....🤝✌️🍀

Thanks for asking 😘re my segue from Intestinal Insufficiency into Intestinal Failure:

we are certain now my version of this rare type of CTD/AID/PID-related organ failure is chronic. Well 🤷🏼‍♀️ I’ve had 60 years coaxing my mouth to exit GI conditions to process & move food along...have enjoyed lots of whatever good food I could still tolerate as this segue progressed...am not complaining now cause the past 60 years of all my GI issues + these last 6 years of multidiscipline investigations have been HARD & I’m feeling so much better on the predigested amino acids of my exclusive Elemental Diet + methylcellulose + all my AID & PID meds ...I don’t even miss food much now the benefits of this highly specialist treatment is helping me avoid the tube/IV nutrition + stomas most even more severely affected Intestinal Failure + CIPO + Slow-transit Dysmotility + Visceral Hypersensitivty more patients endure...do you know this UK support group...it’s helping me lots to get my case in perspective:

giftuksupport.org

[Barnclown in reply to Barnclown]

PS have you seen this recent post from:

Don Thomas, MD

lupusencyclopedia.com

[e-mail]

facebook.com/LupusEncyclopedia

An alarming statistic in #lupus has a hidden piece of good news:

Knee replacement surgery rates increased 6-fold amongst lupus patients between 1991 and 2005!

Link = jrheum.org/content/41/5/867...

SHARE with everyone who has lupus

Reason: Systemic lupus patients are living much longer, surviving into middle age and elderly life, requiring joint replacements for degenerative joint disease (osteoarthritis) due to the aging process.

Today: I have a large number of SLE patients in their 70s - 90s. That was unheard of a couple of decades ago.

Also, in the study: surgery for avascular necrosis (AVN) of the bone dropped more than 2-fold. This is because we have much better medicines, requiring fewer steroids (the main cause of AVN) than in the past.

I am optimistic this positive trend will only get better and better as many promising lupus treatments are currently under study.

[Princerogers777]

Theyre double checking thats good u want to be sure

[baba]

Buxton 26

Do you know what blood tests were done and are being repeated? You didn't say in your original post.

[Buxton26 in reply to baba]

Lupus anticoagulant

[baba in reply to Buxton26]

This is a test for Hughes Syndrome/APS/"Sticky Blood" syndrome.. ( one syndrome, different names).

For further good information see the following websites:

ghic.world/

healthunlocked.com/hughes-s...

Best wishes.

[Hidden]

My wife has just had her diagnosis of Lupus after 2 years of hospital visits and blood tests. Why is it time consuming?