Negative bloods could it still be SLE

[Pantboyandpig]

For the past year or so I've had cycles of symptoms but the most constant has been fatigue, I've had swelling of the face and ulcers in the mouth (thought it was allergy but tested negative to all) sinus tachycardia which has become chronic with a constant resting heart rate over 95, dizzy spells and lack of awareness (EEG ruled out epilepsy) rash that appears across my cheeks and nose and also my arms randomly. Sensitivity to the sun. Painful joints especsilly my ankles wrists and hips, painful hands and swollen knuckles. And heartburn. Went to the doctors who queried SLE and set me for different bloods including ANA. I was kind of feeling hopeful as all my symptoms seemed to fit with SLE and I'm At the point where I want some answers however all my bloods have come back negative. I have another appointment Monday to discuss next steps Could it still be SLE even with negative bloods

[Barnclown]

Yes, it could still be lupus....depends on exactly which blood tests were run...sometimes doctors don't look closer at results other than those relating to specific types of lupus, and if these are negative (as they were at that point in my case) many doctors jump to the conclusion this isn't lupus ...in my case doctors did look at my bloods more closely & found the following were below range: complements 3 & 4, my lymphocytes & Immunoglobulins (G,A,M). All these results are significant to a doctor who is truly an expert on immune dysfunctions & connective tissue disorders like lupus...and in my case these results fit with official diagnostic criteria for lupus

Once blood samples were taken for comprehensive testing, and my whole history of clinical signs & symptoms was taken, + a thorough physical examination was performed, my vvvv lupus-experienced Rheumatologist diagnosed me provsionally with SLE....and started prescription treatment even before my blood test results were in....because my clinical history & current signs + symptoms fit official diagnostic criteria for lupus

These links take you to great recent discussions here on the subject of diagnosis...each discussion includes a v informative link as well. More info is also available on the wonderful lupus uk website. As you'll learn from these links, diagnosis is a "process": you can begin diagnosed with & in treatment for conditions named Mixed Connective Tissue Disorder, or Incomplete Lupus, or Undifferentiated Connective Tissue Disease.....and, sometimes, in time, can ultimately be diagnosed with Lupus:

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

lupusuk.org.uk

I hope something in there helps...

🍀🍀🍀🍀 coco

[Barnclown]

PS

Please let us know how things go on Monday, Pantboyandpig (great name 😆)🍀🍀🍀🍀

[Chezchat]

Hi Pantboyandpig

I am in exactly the same position. What you describe is exactly how I am. I have periods of time when I find it really difficult to carry on. Then it will lift and I'll have a patch where I feel ok. I too have had negative blood tests. I had the ana test last year and when it came back negative I told myself to stop thinking about it and get on with life. However, recently I have been back to my GP coz at the end of February I felt so ill again. I had some more blood tests and have an appointment on 31st to find out the results. I won't be surprised if they are negative again. And yet, when I look at the symptoms of Lupus SLE I struggle to see how I could NOT have it. I have nearly every single symptom described and have had some of the symptoms since I was a child.

I am now determined to chase for an answer to my problems. I hope you get an answer as well.

[Wendy39 in reply to Chezchat]

Hello. Please read my reply above re SCLE. It is an overlap of SLE and DLE and is approximately 10% of all lupus sufferers. It may help you, it may not. Wendy

[Fennella02]

I'm the same as Barnclown. There is no doubt that I have a connective tissue disease but many of the 'obvious' tests are negative and always have been. I do have other blood features and clinical signs and symtoms that support my dx but they require an expert eye and an open mind. Keep chasing your diagnosis - it will happen x

[Wendy39]

Hello.

You've had great responses. So not a lot of factual stuff to add. I googled sero negative lupus and this article popped up written by the esteemed Prof Hughes.

lupus-support.org.uk/Crit.htm

It gives the other criteria for Lupus, not the blood test results.

Just wanted to add my own personal experience. I have SCLE, which is an overlap between SLE and DLE. I was lucky enough to get a positive ANA, ENA and anti RO blood test at my diagnosis in Nov 2013 as well as my numerous physical symptoms.

But SCLE is a weird one for blood tests. I have only ever had 2 positive blood tests - in 3.5 years. One just said "positive" no level given and one was 1:80 which is weak positive.

I have never had a positive Anti-dsDNA test.

A very good dermatologist told me that he wasn't concerned by blood test results with my case.

Repeating bloods in SCLE is not effective or reliable in recording Disease activity.

60-81% of SCLE patients have positive ANAs but only about 50% of them are of a significant titre.

So 19-40% of SCLE sufferers don't have positive ANAs.

Like I said SCLE overlaps DLE and SLE. I have Systemic symptoms and skin issues - I am Sun sensitive / allergic to the sun. I bizarrely still meet the American criteria for SLE.

You need to find a good lupus doctor who knows their stuff and is experienced enough to know all of this. (Which I know is easier said than done, believe me).

Good luck. Keep us posted on your progress.

Wendy

[4373 in reply to Wendy39]

I am exactly there with a Sjorgren's titer of 1-80. Occasionally break out with hives on chest and if not hives then small patches of itchy skin around neck, shoulders and chest. Cured self of bronchial asthma with diet and very clean living, but asthma is also an auto-immune disease. I am not wanting to invent trouble, but also don't want to overlook something which may grow worse because I've ignored it! Have had muscle weakness in left leg between knee and ankle(no joint involvement) but seems to have been cured with magnesium by my doc. No signs of RA and I am seventy-three and don't take any pills except vitamins and a pro-biotic. Any thoughts out there?

[4373 in reply to 4373]

Forgot to add that I do have dry eye and use an over the counter item which the opthamologist reccommended.

[Shaysuekirk]

It could be... But, many disorders overlap. Keep searching to find your answers. Ask for treatment anyway. You've had thyroid checked as well?? That can cause the same symptoms. Also, vitamin panels? B12 and D3 can have similar symptoms with deficiency.

[Paul_Howard Partner LUPUS UK]

Hi Pantboyandpig ,

As other members of this community have stated already, it could still potentially be SLE with negative bloods, although it is believed this is quite rare. There is also the possibility that you could have undifferentiated connective tissue disease (UCTD) which is sometimes referred to as a 'lupus-like' disease or 'probable lupus'. It is quite common for people to present with symptoms of connective tissue diseases but not have enough distinct clinical markers for a confirmed diagnosis of one of them. This often results in a diagnosis of UCTD which may or may not develop into lupus or another connective tissue disease in the future. It is usually treated the same as lupus.

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info....

Good luck with your appointment today. Let us know how you get on.

[Pantboyandpig]

Thanks everyone for your comments, GP has said that clinically I got the diagnosis very well so she will refer me to a consultant who specialises in SLE anyway and see where we go from there also querying dermatomyositis which I have yet to google

[Wendy39 in reply to Pantboyandpig]

Sounds like a great plan! What a great GP. A "keeper". Good luck and let us know how it goes.