Is it Lupus or is it not

[Louclou]

My recent visit to see my Rheumatologist...well it’s definitely not Rheumatoid arthritis I have and my anti ds-dna count was 21 and negative...does this rule out lupus completely...still getting symptoms, but he doesn’t need to see me for 6 months?

[Hidden]

Hi Louclou. You don’t mention treatments your rheum has put you on for RA? Presumably, as you’ve been diagnosed, you will also have been started on a treatment and when they see you again they will be wanting to know how this treatment is working? Early treatment is particularly important for RA because it is in the early stages where erosive damage to joints often occurs.

Treatments for RA and Lupus are broadly the same and there is often much symptom overlap too. RA is usually diagnosed by bilateral synovial swelling and stiffness in knuckle and other small synovial joints. About 70% of sufferers have positive RF and/or anti-CCP.

If you have RA (which I was misdiagnosed with in 2011) your joints will be the main concern in the early stages. Whereas if you have Lupus then it’s usually your organs - particularly kidneys - that the focus will be on ie preventing damage from occurring. As your anti-dsDNA was negative this makes Lupus unlikely, but not impossible for you I believe.

So far I have Sjögren’s, diagnosed by lip biopsy, rather than RA or Lupus. But, having no specific antibodies so far but a high titre ANA - I’ve learnt to keep an open mind.

[Hidden in reply to Hidden]

Ps sorry I misread your post as saying you definitely have RA - rather than definitely NOT RA! Ignore my earlier comment please!

[Michiganpbc]

You can be sero negative on blood tests 30% of people with autoimmune disease have negative tests; this is a many years ago study probably higher now; I tested negative for Sjogrens blood tests and tested positive with symptoms and a lip biopsy years later , they look at your symptoms and blood work together.

[nanleighh]

I tested negative in 2007 except for low vitamin D, after several years of symptoms. Then in 2013 had positive ANA and high Anti RNP antibodies then was diagnosed with Lupus. It was at least 10 Years between onset of my symptoms and diagnosis. Thankfully I don't have any kidney involvement. It mainly affects my joints, muscles,skin,GI system. Sometimes my voice. Mostly pretty significant fatigue. I hope you keep track of all of your symptoms and if your symptoms continue will be able to get a diagnosis. Warmest regards,. Nan

[misty14]

Hi Lou

Sometimes it's easier for the doctors to tell us what we don't have than what we do!. It's good you don't have RA and also that your Rheumy is keeping an eye on you by still seeing you in six months!. My guess is your ANA was positive which is non specific for lupus but tells then there's something wrong with your immune system!. You've had good advice from nankeigh about keeping notes of symptoms, can just add take any photos of rashes as well . If in the meantime your symptoms worsen you can always try to bring your Rheumy appt sooner by asking to go on cancellation list. Your GP can also write to them asking for you to be seen sooner!. Keep us posted how you get on and hope I've helped. X

[Louclou]

Thanks everyone, I know Lupus can be very difficult to diagnose. I’ve been having symptoms for the last few years, but just put it down to getting older (44) A routine blood test came up positive ( like you said Misty) but non specific. I can’t fault my Rheumatologist as during his investigations he discovered a benign tumor on my knee which requires surgery. I keep getting a rash on my chest and neck after having a bath or shower, something I’ve never experienced before. I’m concerned about my holiday next year and how the sun is going to affect me, but I will continue to list my symptoms. My consultant said if I need to see him before my scheduled appointment then I should call him to get in earlier.

[Chanpreet_Walia LUPUS UK]

Hi Louclou,

Although 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...

Have you been advised and/or prescribed anything for your symptoms?

Rashes can be induced by sunlight as well as other factors which are discussed in our ‘Lupus and the Skin’ guide: lupusuk.org.uk/wp-content/u...

We also published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...