Diagnosis - What to expect?

[MyAngels]

Hi, I was diagnosed with Sjogren's and auto immune hypothyroidism in 2017, currently taking 10mg methotrexate, I have suspected I have lupus too for a while, but lack of doctor appointments due to Covid and their general disinterest when I did have an appointment meant I carried on with no formal tests or diagnosis. I usually take 2g of Omega3 per day, which kept my facial rash at bay, but have had to stop this as am taking blood thinners for a recent DVT. So rash has returned coinciding with my latest telephone appointment (18 months since the last one...!), so I finally managed to get the doctor to request a blood test for lupus markers, - results due back this week..A few questions..How will Lupus show up on my blood tests - what should I look for?

If I do have Lupus, will any treatment be different than for my Sjogren's?

Any other tips for a "new to Lupus but long suffering with auto immune disease" 52 year old woman who gardens for a living so needs to be active every day?,

Many thanks

[Spanielmadlady]

Hi there is no specific blood test for Lupus but ones that may flag up positive are ANA DS -DNA and compliments amongst others. They can flit between positive and negative and dont always corrilate with disease activity.Who monitors your methotrexate bloods ? There is an 11 point criteria for Lupus you may find useful but there is alot of overlap with other AI illnesses.

Lupus and medication inc methotrexate can cause photosensitivity so you need to stay out of the sun ,cover up head to toe,wear factor 50+ ,sunglasses and a wide brimmed hat not conducive with gardening unfortunately .

Pacing yourself ,sleeping ,resting as much as possible and keeping stress to an absolute minimum are all essential .

Hopefully you don't have Lupus and it's simply as case of staying out of the sun .Iiving with lupus and AI illnesses means compromise youve got to be prepared to adapt.i can't be outside for too long if I do my joints flare, migraine,chronic fatigue etc and I end up indoors for a few days.never thought I'd ever say roll on autumn/winter when uv levels drop.i also have autoimmune thyroid disease (hashimotos) secondary sjogrens ,pernicious anaemia and Lupus .i take Hydroxychloroquine and Mycophenolate. Best wishes SML x

[KayHimm]

MyAngels -

What are you experiencing that makes you think you might have lupus? That is very important. If you have chest pain, facial rash, sensitivity to the sun or any new symptoms, your doctors need to know.

You have been tested for lupus in the past because usually the tests are done automatically with autoimmune disease. But your labs could have changed. It may be easier to start with your GP. They can do blood and urine tests, look at suspicious rashes and make referrals.

Best of luck. I know it is upsetting when you feel something is going wrong. As for treatment, lupus could be treated with anything from aspirin to high dose steroids. It is the severity that dictates.

Kay