I appreciate that members here can't offer medical advice, but wonder if anyone might be able to offer any practical advice please?
I have a diagnosis of ME currently. I now have a malar rash over my nose and have done for over six month, which is not an ME symptom. More recently I developed a weird series of circles on my left cheek which won't go away.
I saw a GP who said 'possibly Lupus' and ordered blood tests four weeks ago.
I saw a different GP yesterday, who told me that the tests were negative, " so that's okay", and gave me antibiotics for the rashes. My CRP levels are raised, but have been so for several years and none of the GPs I have seen seem concerned. My BP is now borderline high, whereas it wasn't in the past.
Is it possible that the blood tests were wrong? Don't get me wrong, it's not that I want to have it, but I'm becoming really self conscious about the marks on may face, and need to be sure.
Any suggestions gratefully received, thank you. I am in the UK, if that makes any difference as to the tests available.
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PurplePeril
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Yes it is possible to have SLE without positive blood tests, but it takes a Rheumatologist who specialises in the condition who will look you, the patient, overall, and not rely on one blood test. This is exactly how I got my diagnosis of SLE/APS/Raynauds, and it took a long twelve years. The attached link I think answers a lot of your query.
My RA did a single blood test on me, saying that there is no possible chance of me having SLE as it came back negative. After explaining that all the women in my family had to take the same blood test many times before getting a positive on it, she still didn't care. Even after telling her of my symptoms and having some of them present during the appointment. I will probably be years before I actually get a positive. Sad that it took you 12 years, I hope mine doesn't take that long.
Yes, anything is possible with lupus! Also there are many overlap conditions which may give rise to an atypical presentation and unremarkable blood tests. You will need to be very persistent with your doctors - GP's don't tend to know much about AI conditions so you may need to research yourself and drive things forward. Have you had your ESR done? Something must be causing your raised CRP if it is persistently high.
I have no antibodies and never have had. I recently posted an article about new antibodies that are still being discovered in Lupus. Perhaps your skin lesions are more akin to discoid or cutaneous lupus? Xx
Bear in mind that lupus/SLE is only one variation on a whole range of auto-immune conditions. If you haven't already, you might find it helpful to get to know the details of your results. Do ask your GP to explain any that are unclear to you, and why it is that s/he is satisfied that you do not have the problems/conditions you suspect. As many of us here can attest, it can sometimes be necessary to be quite ruthless in questioning our clinicians to ensure that nothing is overlooked. Hope it works out well for you x
PS Any relation to Beryl the Peril of "The Topper" fame? [that dates me!]
thanks all, really helpful, and I will take the time to read the links thoroughly. That leaflet in particular is very interesting, since they haven't taken a urine sample.
It took around 4 years to get my ME diagnosis, and that was 3 years ago, so in a way I'm reluctant to start again with yet more investigation.... except of course the Lupus is treatable, whereas ME isn't.
Our GP surgery is currently in crisis, with people unable to make appointments for weeks. I have one in another month, so will do my research and print out the leaflet for a start.
I suggest you ask for a referral to a lupus specialist but not a general rheumatologist because a diagnosis depends on a whole range of symptoms and blood tests and not just ANA.
My wife who has negative ANA and dismissed for Lupus by generalists and then saw a specialist who diagnosed her based on bloods and symptoms within a few minutes.
There is a some good material on the internet - I think it was 2011 criteria for diagnosing lupus that has been accepted internationally and Guys hospital lupus diagnosis guidelines.
I had the same thing happen so when I had a face rash the following month I demanded a biopsy and it showed positive for lupus. Keep up the good fight!
A malar rash usually appears when disease activity is higher or when exposed to certain triggers such as UV light. Malar rashes are genuinely not permanent - it is likely for people to experience periods of remission whereby there signs and symptoms are reduced. To find out how rashes can be treated, you can read our booklet on lupus and the skin here: lupusuk.org.uk/wp-content/u...
It is important to remember that lupus presents differently in everybody therefore no two people will share the exact same experience.
An ANA test indicates whether or not a person has an autoimmune disorder; 5% of people with lupus are known to test ‘negative’ for this.
dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. If someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. To find out exactly how lupus is diagnosed, read our blog article here: lupusuk.org.uk/getting-diag...
Yep I’m rhesus negative for lupus but no doubt at all that’s what it is. I have a positive ANA which is always speckled and diffuse whereas it’s normally one for RA and the other for SLE but I can’t remember which is which. The specific tests for each I test negative for - lupus isn’t knwn as the great pretender without a reason and in my case it runs and hides whenever it sees a doctor!
If the rash is still there when you next see your GP then ask him if it’s not lupus then what is it - it always makes me laugh when GPs test for something, it’s negative so they think you’ll go away happy .. it’s still there and it’s still something so why have they stopped looking! Is your ME being treated by a specialist? If so I’d bring it up with them and if it’s not ME related then ask them to request your GP to refer you to rheumatology and if you aren’t then I’d ask the GP to refer you to rheumy to look into it further as this new symptom combined with the chronic fatigue and presumably joint pain etc would now bring your ME diagnosis into question as to whether it is something else going on. Good luck.
The GP didn't really know, but she said if it's still there in a month she will refer me to a Dermatologist. She gave me some antibiotic cream and tablets to try... She was quite adamant that the blood test said 'no' and so it definitely wasn't Lupus. That said, she advised me to have yoghurt with the tablets to avoid an upset stomach, but the leaflet that came with them specifically said to avoid any dairy within two hours! Not that confident in her ability from thereon in!!
I did see a specialist for the ME twice, but the standard procedure is then to discharge you, since there is no actual treatment available. You then see the GP (if you can get an appointment) after that. The NICE guidelines do say that you should have an annual review, but I've been unable to get one in several years.
I have lupus and have negative blood work. It's called seronegative lupus. They told me it's really rare, but I meet all the criteria to be diagnosed. They had a hard time diagnosing it, but since the plaquenil GREATLY helped my symptoms, and I have flares with sores they finally decided I do have it.
Well progress today, although I have to say I was pretty speechless.
I went back to the GP (the second one), and said that the tablets were making me feel much worse, particularly with the joint pain, and that my facial rash was also worse and as it turns out is rather sensitive to sunlight.
She said, 'oh in that case, I will refer you to a Rheumatologist, especially bearing in mind your blood results'.
I am of course pleased to get the referral, but those blood results were 'fine' last time.
I know that GP's are under a lot of pressure, but really?
Glad that I will, hopefully, get to see someone in whom I can have a bit more confidence!!
My blood tests were negative and now still only show slight raised ANA. In the beginning my face was so poorly with what i thought was ongoing psoriasis. After seeing my gp a couple of times, i was referred to a dermatolgist. I had two skin biopsies and they showed i had lupus. Over the past few months i have discovered that there are different types of lupus. I have been seen in renal, dermatology, rheumatology departments but it was dermatology that diagnosed my illness. When she first suggested that it could be cutaneous/discoid lupus, i thought the consultant was bonkers. However, she was right and i have been so grateful for the help she has provided. I hope you get the help you need also🙏
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