How do I know whether my symptoms are lupus related?

New to this site and looking forward to some guidance and support with my diagnosis... I'll briefly outline my journey thus far...

After a routine MRI scan in February 2017 revealed a previous bleed on the brain (I'd worked some overtime in January and went to my GP suffering headaches, brain fog and was fatigued) I saw a neurologist after a long wait who requested blood tests including those to rule out lupus. In November 2017 the double stranded Dan antibody came back positive (moderately high at 53) and my GP referred my to rheumatology explaining that it was complex. My first appointment with my rheumatologist finally came for the June 12th 2018... he suggested that as I was not typically symptomatic of lupus he wasn't convinced that it was, however after the same blood test again came back positive he phoned and advised me that it looks like I have lupus and must avoid the sun and wear factor 30 sunscreen or above... The routine chest x-Ray he sent me for showed a slight enlargement of my heart but as the echocardiogram I had in December had shown valves etc working normally, he has brought my follow-up appointment forward from 6 months to three so will be seeing him in September. I'm having my facial redness/rash looked at next Monday by a dermatologist to confirm whether malar or rosacea.

I am fortunate in that my symptoms seem to be very mild... Slight facial rash, low level muscle/joint aches and tingling in arms and legs, some tiredness and foggy brain, and a persistent dry cough... Hence the consultant is reluctant to start medicating at this stage and I'm being monitored.

Interested in hearing from anyone who has had similar experience and whether it's better to be given medication sooner for prevention of increasing symptoms or to go as long as possible without?

[whisperit]

Hello Wunder53

Sounds like you've had an - ahem - 'interesting' route into this community. Welcome, anyway!

For the definitive clinical guidance on the treatment of SLE look here - academic.oup.com/rheumatolo...

It's pretty daunting, but it may help you as a reference source.

My understanding of the basic principles of treatment in 'mild' SLE is that the usual baseline treatment is to give hydroxychloroquine (HCQ) to dampen the auto-immune response and reduce any risk of organ damage. Steroids may be added for periods of time to reduce disease 'flares', and a low maintenance dose of steroids is often given too. Other DMARDS may be added if the disease activity is more chronic. It sounds as if your condition hasn't been fully assessed yet? In which case, and if there are no distressing symptoms and your bloods show only low activity, it might be reasonable to hold off treatment for the moment - so long as you are monitored. x

[Hidden in reply to whisperit]

Thanks for your input... Yes still going through the diagnostic process which I understand can take months to years depending on symptoms and tests... Will take a look at your link x

[whisperit in reply to Hidden]

Yes, it seems most of us have a lengthy journey, but it shouldn't take long before your clinicians are clear enough to have a good handle on an appropriate treatment plan, even if the diagnostic labels still need refining. x

[eekt]

Hello there! Welcome aboard!

My Rheumy said "it looks like lupus" based on a positive ANA, positive dsDNA and rash (the sole UK Guideline for systemic lupus (SLE) has strict criteria for assessment, diagnosis and monitoring of SLE: academic.oup.com/rheumatolo... and a follow-up blood test for low C4 Complement made four of the necessary 11 criteria.

I was prescribed Hydroxychloroquine to prevent increasing symptoms (I have 'mild disease activity'), exactly as you say - a prophylactic - but I had adverse effects, including bleaching of hair 👱🏻‍♀️... which is very uncommon: most people benefit a lot from it.

Be very informed when you go in September:

sledai-2k.com/sledai2k.pdf

oml.eular.org/sysModules/ob...

and make a list of questions, make sure you get answers, plus write down your medical history and family history before you go.

I was completely unprepared so when it became "you have lupus" at my second appointment, I was hit hard, but you seem well-prepared....separate post to come on sunlight, bit brain-foggy today 😶

Willing you well, it's a horrible thing but being educated is the best medicine! mo xxx

[Hidden in reply to eekt]

Thanks for the links eekt... At initial apt in June he stated would only use methotrexate if anything at this stage... As a medical receptionist I'm aware that there are side effects to most of the meds so am in no rush to start taking anything until absolutely necessary x

[eekt in reply to Hidden]

EEK! You're absolutely right and my R says Hydroxychloroquine is the mildest!! You're well-positioned to challenge doctor's opinions (as is a patient's right)! Hold your ground...mo xxx