I’m 57 and realised I’ve had periods like this for over 20 years. Only when I developed the rash that I considered Lupus - it’s like reading about myself -
Hi- Have fatigue, joint pain, swollen glands, mou... - LUPUS UK
Hi- Have fatigue, joint pain, swollen glands, mouth ulcers, scaly red rash on face when in sun since Xmas but ANA test just back negative?
Do you have photos of your mouth ulcers? Rash on your face? I am from the U.S. and can’t help much with UK referral process. It does sound much stricter than ours. But I can tell you I have had periods with negative blood tests, and I would have looked like you if I didn’t already have a diagnosis of UCTD.
My ANA was negative in the beginning and positive later. There are other tests a rheumatologist can do. The rashes and ulcers are significant too. You may ask also for a dermatology referral.
No photos of ulcer - it’s a Major aphthous ulcer, same large ulcer that I’ve had for over 20 years that comes and goes. I wonder if it’s been connected to Lupus? Never been able to figure it out. It’s like a constant crater in the soft part of my mouth that flares up and usually makes my glands swell in my neck.
How do I post a photo??
I can only talk from my personal experience. My rheumatologist always checks my mouth when I am symptomatic. I have never had the type of ulcer associated with lupus. The regular canker sores I get, he says, are not significant. I would definitely show your GP your mouth sore. I don’t know how to post a photo. Maybe it has to be done from a computer.
Wishing you all the best.
I am in exactly the same situation as you. A few years ago a rheumatologist told me I had lupus like disease which I now understand usually means that the doctor thinks you probably have lupus but it is still evolving. I saw a different rheumatologist last November when my symptoms flared up again. He told me "95% of lupus patients have a specific antibody; you don't have this antibody, therefore you don't have lupus". This was the end of it as far as he was concerned and he was dismissive of all my symptoms and my medical history all of which strongly suggest lupus. I wish now I had asked him about the 5% of lupus patients who don't have the antibody but unfortunately this didn't occur to me at the time. Like you I have been left without a diagnosis or treatment and it is quite depressing. I am still considering what I should do next. Hope you have more luck than me.
Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus. 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’. Therefore 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. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...
Oral (mouth) and nasal (nose) ulcers are one of the most common features of lupus occurring in around 45% of people who have SLE. We published a blog article on coping with oral and nasal ulcers which you can read here: lupusuk.org.uk/coping-with-...
Depression and anxiety can be a symptom of living with chronic pain. We published a blog article on ‘coping with depression and anxiety’ which you may like to read: lupusuk.org.uk/coping-with-...
Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. You may like to have a read of our guide on lupus and the skin here: lupusuk.org.uk/wp-content/u...
You may also like to read our blog article on ‘coping with light sensitivity’ at lupusuk.org.uk/coping-with-...
You have received some great advice from other members i.e. taking photos of your rash to show at your next appointment. In order to help you prepare, you may wish to read our blog article on ‘getting the most from your medical appointments’ at lupusuk.org.uk/getting-the-...
Please keep us updated, wishing you all the best
Thank you!!! Already finding this site helpful
Hi, we are the same age and had a similar expereince to you. Three years on from my formal SJogrens, SLE, Dermatomyositis diagnosis, I am grateful to have come across such comprehensive and knowledgable group online. All I can add is that you have great power over the choice of health provider you want to manage your diagnosis and symptoms. On local Rhuemy diagnosis, I asked my GP for a referral to GUYS Hospital Lupus Clinic, because I wanted to make sure the whole 'Kaleidescope' of Lupus diseases were picked up and referred in one central location. I also moved around with my husband (and rock) with his contract work of 12-18 months each time. So London hospitals made it easier to attend and gave consistency. My only disappointment with having the aspect of disease made worse by sunlight/UV light, is the inability to watch my favourite sport, cricket, live. Thank heavens for Sport on TV
Thanks for your reply. I’m in the North East and my GP is reluctantly going to ask a colleague for their opinion. As my ANA test was negative she doesn’t think I’ll get a referral to a rheumatologist :/ do you know of anyone who has had a negative test to get any further??
Glad you’re getting sorted
Hi CathArt, It might take a while, if it is Lupus, then there are known to be negative ANA test results, but Im not a professional, so I can't say why it sometimes 'hides', but I have read that it does. Best thing to do right now is keep a daily diary of your symptoms and use this to inform all the specialists and your GP, as the symptoms can be as 'mercurial' as the disease itself. Trust your instincts and your body to alert you, when things are not right or what you are told does not sit right with your known symptoms. Don't worry and stress yourself, there are plenty of people in this community that can give you so much better advice and share their symptom and disease management.
There's a whole gamut of tests for SLE listed in the UK guideline* on top of ANA (table 6 I think)….and Table 5 lists various manifestations by criteria. Lupus UK has a great info on its website, including 'Getting a DIagnosis'. Ask to see Dr Griffiths at the Freeman after showing your GP some of this info - they having very little training in autoimmunity!...all the best! xxx
Hi - thanks for your post. Even after getting the negative ANA result, after careful consideration, I still strongly feel that I have Lupus. I have had periods of intense fatigue for over 20 years, when I’ve sat and slept in the car in winter because I didn’t think I could stay awake to drive home. Have had bursitis in my hips that lasted a year, then nothing for last 15 years. Arthritis in both knees (which flared up badly at Christmas along with the extreme fatigue) have Trigger Finger, a Major aphthous ulcer, that I’ve had for about 20 years, which can flare up several times a year, or not for up to 2 years? It’s been inflamed on and off since Christmas also, and my glands usually swell up at same time. The rash has just started this last 2 months and is definitely caused by sun exposure. It’s red, scaly (not Rosacea as been suggested by GP). I’ve suffered from depression and anxiety. I have lots of other weird things, shivery tingly episodes when I’m really fatigued, jumpy spasms, tinnitus and dizziness 🙄 Luckily, I feel like I’m coming to the end of this flare up, having more good days than bad last 2 weeks, joint pain disappeared, more energy. I’ve been trying not to go mad on good days (like I’ve always done) and trying to eat and take vitamins to help my immune system. I see the GP again in a month. Any suggestions welcome. Sorry for going on!!
Record your temperature, particularly during flares. Did a doctor diagnose your mouth ulcer? Ask your doctor what he thinks about that particular ulcer. Maybe others here know more about this symptom.
Yes, doctor and my dentist diagnosed ulcer many years ago x
You might want to make your GP aware.
I did, but felt like I was rambling in my effort to get ALL my symptoms in and explain how I’ve been feeling for 20 odd years lol!
Oh I recognise that sleep in the car feeling...once in a small lay-by on a major trunk road with lorries shaking the car as they passed...mark up a copy of Table 5 with symptoms you have and ask your GP for all the tests a GP can do from the initial assessment in Table 6
It's about £200 for a private rheumatology consultation if you have the means, with a referral back to the NHS - lots of folks have found that short-cuts the process by a way...don't know if Dr Griffiths does private work, but she's a lupus specialist (she's one of the co-authors of the guideline)
Keep photos of rashes etc as well as a symptom diary...some GPs won't know the relapsing-remitting nature of autoimmunity and will disregard symptoms that are gone...you could ask for your medical records and trawl through them, highlighting everything you think might be related
It's not so straightforward with negative ANA, as some docs believe no ANA = no lupus, but some of the other tests in the guideline can only be ordered by a consultant so use that as leverage for a referral...wishing you all the best! xxx
Thank you so much for this feedback x
Hope you get somewhere! Let us know how you go! xxx
Thank you ! I will 🙂
This sounds almost identical to the symptoms I'm showing .... also just had negative blood tests .... hope u got sorted
Hi. I live in NE England and I'd be happy to give you my opinion of local rheumies, for what it's work. Maybe best to PM me though. Good luck!
That would be good, thanks. How do I message you?
Hi I think you go to my MEGS53 profile, but I'm not sure. Maybe some-one can help?