LUPUS UK
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WHAT LED TO YOUR LUPUS DIAGNOSIS?

Hello to all! I'm new to this community. I first posted in the PMR forums, and was told I might find an answer if I post here in the Lupus forums.

I was wondering what tests you were given that led to a diagnosis of Lupus. Here's my story:

I am a 69 year old Grandmother, living in the USA. In 2016 I was diagnosed with PMR, Raynaud's, Gout, Bursitis. I've been on Prednisone, as well as 3 different BP medications. The problem is, since last year, my feet have been become very painful. Bottoms turn bright red, painful to walk, bruising, fluid retention so bad I can hardly wear shoes. Also, my hands are feeling sticky at times, and extremely itchy, which only gets relieved with ice water.

My doctor said I have "something else, besides PMR, going on" and referred me to a Rheumotologist.. After a 5 month wait, I had my first appointment. They said it "sounded like" erythromelalgia. They ordered about 30 labs. They tested for everything, including Lupus. In the end, they told me I do not have Lupus, based on the blood work, but my ANA is extremely high. No diagnosis as of yet. I have a follow-up appointment in a month.

So, I was wondering if anyone had any symptoms similar to what I have before being diagnosed with Lupus. And, was your diagnosis based on blood work? Thank you for any input you can give me.

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I am not sure what blood work said you did not have Lupus? I am not a doctor, or a Rheumatologist, but from your description of symptoms and an extremely high ANA (how high) I am leaning to Lupus. I was diagnosed 7 years ago with edema around eyes; rash on face, neck and chest; very sore shoulders; fatigue and high positive ANA. Some Rheumatologist will diagnose your symptoms without positive ANA, but normally I would think the ANA is the capper. I was 57 then and GP thought I was to old for Lupus, family friend (doctor) said I was to old for Lupus, since then 3 different Rheumatologist have confirmed Lupus diagnosis. Did your Rheumatologist schedule you for more blood work and a follow up in a month, did she prescribe any meds? I don’t know if it is Lupus, but for sure something is going on so stay on it, get an answer that makes sense to you.

Take care of your self,

Chapter 🌹

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Thank you for replying to my post. The Rheumatologist ordered around 30 labs. I don't know which of them were actually for Lupus. The ANA results came back like this: 1,250 1/dil (normal is 0-49 1/dil). And that is the ANA, Nucleolar Pattern. I really don't know what it means, just that it is high. They didn't order any more labs yet, or prescribe any new meds yet, but I have another appointment in September. Hopefully, they can tell me more at that time. I am already on Prednisone for the PMR diagnosis (since 2016). I definitely have questions for him. It sounds like you presented with the classic rash on the face. I don't have anything like that. Definitely a mystery. I can come back and post when I get a diagnosis.

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Lots of people do not get “classic rash” so that is why blood work helps. I have woke up this morning with what appears to be a flare coming on, maybe that is why I am a little bit upset with your doctor. I haven’t had my face involved for 2 years. Good luck with your next appointment, I hope you get some answers.

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Hello tmar4949,

One thing that has really helped my understanding is the realisation that lupus is just one of a whole spectrum of systemic, auto-immune diseases that are sometimes very similar to each other. So much so that sometimes the precise label that you are given makes very little difference to what might be your prognosis or treatment. So one can be diagnosed with 'lupus (or SLE), or Undifferentiated Connective Tissue Disease, or Mixed Connective Tissue Disease, or Sjogren's Syndrome, or Polymysositis, or several other conditions and still be prescribed essentially the same treatments. What's more, even when they share the same diagnostic label, no two people seem to have exactly the same collection of symptoms or problems.

As you know, people with lupus-type conditions usually have a high ANA titre, but this is rather non-specific. According to Medline, the proportion of people with a positive ANA are: Mixed connective tissue disease: 100%: Drug-induced lupus erythematosus: 100%: Systemic lupus erythematosus: 95%-100%: Sjögren syndrome: 80%: Scleroderma: 60%-95%: Polymyositis-dermatomyositis: 49%-74%: Rheumatoid arthritis: 40%-60%. The patterning you mention ('nucleolar') is another pointer, but this too is rather non-specific. A further test for ds-DNA antibodies is often used as a much more specific test for lupus. But bloods alone aren't sufficient to make a definite diagnosis. You have to look at a clinical signs too.

I started off with 'Interstitial Lung Disease' and 'Raynaud's Syndrome' and have acquired 'UCTD', 'MCTD', 'Fibromyalgia' and 'Myositis' aloing the way - but I don't pay too much attention to these labels any more. Even the specialist clinicians seem to forget which I am supposed to have, or change their minds from time to time. What's important is to get the treatment right.

If you are in the mood for a technical read, here is a link to the British Society of Rheumatologists guidance on diagnosis academic.oup.com/rheumatolo... . Easier to digest is the leaflet on 'symptoms and diagnosis' that you can find on the 'Home' page here.

Hope that helps, and you find some clarity soon x

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Thank you so much, whisperit, for that abundance of information! It puts things into better perspective for me. I guess I shouldn't be so concerned about what the name of whatever I have is, just that they can treat it. I do have another appointment with the Rheumatologist next month to discuss everything. I am already on Prednisone for PMR, and have managed to get to a relatively low dose. I will try not to stress until I see what the doctors have to say. In any event, your reply really opened my eyes! I've been focusing on the ANA results, when it really doesn't point to any specific disease label. I'm going to check out that link you provided now. 😄

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The technicalities of these conditions are beyond me, so what I hope for is that my clinicians are able to answer questions like, 'So how could we account for symptom X?' or 'Will this treatment address the problem with Y' and 'So why don't you think Z could be an appropriate treatment or investigation?'' and 'What's the long term plan?' That helps me feel a bit more in control x

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Agreed. My first visit wasn't very productive. I saw an Internist first, then the Rheumtalogist came in to examine me. And, of course, without the blood tests, they didn't have any answers, other than to say "something else is going on". But, this visit coming up should give me some answers. And, I DO have questions. I don't like the feeling either of having no control over what is going on with my body. It's been one thing after another for a couple of years now. I will definitely come back here and post how it goes.

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Yes, exactly. Trying to find the sweet spot between assertiveness and patience is sooo difficult, isn't it? Look forward to hearing how things go. x

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Hi tmar4949,

I'd just like to second whisperit's most excellent response here, so that you know that many of us have entered this world in much the same way. The more I read into what could be going on, as the GPs were flummoxed or dismissive, the more I also thought I needed some kind of diagnosis pronto. I was sure it was Lupus or maybe Scleroderma, then I thought it was Mixed CTD, but then maybe it could be Multiple Sclerosis.

It was a referral to a Neurologist (who said I needed a Rheumatologist) and the high positive ANA (1:640 speckled pattern) that got the ball rolling. What I didn't realise at the time was that it made hardly a *speckle* of difference which one it actually was. I was sure I needed to know NOW which one so the treatment could start right away. But things unfolded as they needed to. A high ANA test will be followed by an ENA test. This takes a month after ANA results come in and doesn't require you to get your blood done again, they just automatically take a positive ANA and send it off for ENA (it's what they do in the UK anyway), which breaks down antibody misbehaviour into categories. There are several which will give good hints to which direction your body is taking you. I personally have Ro+/SSA antibodies that can be present in Sjogrens, Lupus and can also be by themselves, usually representing sun sensitivity alone.

There can be other complications, like you already experience -- PMR, Raynaud's, gout, bursitis -- which may or may not be overlapping with the Connective Tissue Disease (if it is that). These just add to the pot and seem to be par for the course. What is most essential is to uncover if you have a faulty immune system that is being over-reactive and attacking your healthy tissue/cells. If enough blood results suggest this, antimalarial drugs and immunosuppressants will likely be used to kick the system back to something more functional. In my experience both are working. So...there is hope! Though I wasn't told any of this as I went along, just had to figure it out myself as I discovered how little GPs know about these conditions. It was reading through the experiences of others on this website and communicating here that helped me put all the pieces together. Or at least gave me the illusion I had! : )

As Chapter says, you can get Lupus/Connective Tissue Disorders at any age. I agree with her too, to just stay with it. But the patience (and acceptance, I think) is the hardest part, since this is opposite of that sense of urgency one usually has/must have around a diagnosis. That 'sweet spot' as whisperit says..

All the best with your next appointment and do let us know how you go.

Panda x

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Thanks Panda , great way of putting it. I am far less bothered that I am MCDT and vasculitis these days. Lou xx

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I've got a pending Vasculitis diagnosis too.. : ) xx

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Thank you so much, Panda!! Yes, this is exactly where my mindset is, and it is really getting me down. I try to say to myself "just let the doctors sort this out, and don't worry", but I wake up each morning feeling so horrible that It's really hard to do that. And, making the mistake of Googling my symptoms was a huge mistake. I plan on re-reading your comment over and over again to remind me that it WILL take time, and to just let it happen. I need to really work on patience and acceptance. I still haven't accepted that my body is betraying me. I promise to come back with an update after my next appointment. Thank you again!

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There is no doubt this would be getting you down.. It gets all of us down, I suspect. I personally think it is worse though when we don't know things though. So, I don't know that your googling was such a mistake actually.

I would say that I spent an entire year getting my 'doctorate in medical studies' : ) by reading well into the night, each and every night until recently. It was the only way to allay the anxiety when I would stumble upon an article that 'could be' what was wrong. Sure, it can add to the anxiety, but for me the more I know, the more confidence I have to deal with what's going on. Feelings are another thing all together...

All the best through your stages of this. Know that you're not alone.

Panda x

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Yes some really good points. Also a lot of the same meds used for these conditions and so finding the cocktail that suits an individual is the goal. Lou xx

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I was DX'd about a year ago at age 62...I had been feeling off for a long time and had rashes that were not looked into...My rash was SO BAD last summer..that was what lead to my DX..skin biopsy..and Blood work I also had a very high ANA......I am sorry you are in such discomfort Xx

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Hi tmar4949,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download at lupusuk.org.uk/request-info...

An ANA test can determine whether or not a person has an autoimmune disorder, it is not sufficient in providing a diagnosis of lupus. dsDNA antibodies are specific to lupus. To find out the criteria and tests that are needed in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...

Here is the link to our factsheet ‘LUPUS: and the Feet’: lupusuk.org.uk/wp-content/u...

For tips and information on dealing with itchy rashes, click here lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

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Thank you so much for providing those links! Such a wealth of information here. 😃

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Crazy, but I caught Shingles (way worse pain than Lupus) The hospital was treating me for Low Platelet count and other things and I was on a very high dose of Prednisolone when I contracted the Shingles and it ripped through my body. They stopped the steroids that day and went back 3 weeks later when they had gone. They took a blood sample and the Platelete count was still very low. I saw a new Doctor and the fluke was that she had been on a weeks course down in London to learn about Lupus. She said she needed to put me back on the steroids and I got upset as I had already put a stone on. She asked if I felt any benifit and I said my Joints did not hurt as much and some of my hair was growing back, plus my kids said I was like the 'Old/young' me. She sent me straight back for another blood test and 1/2 later she told me I had Lupus, God Bless Dr, Cawthorne. I was 40 when she found out, I am now 71 and plod along.xx

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