Sero negative

[amandajane76]

How many have zero neg lupus ? What are you main issues and how are you medicated plz

[chandlermandy]

Hi

I was diagnosed with seronegative lupus about a year ago. It took 6 years of different tests and investigations from my gp before they finally referred me to rheumatology. I showed all the usual lupus symptoms. This was the best thing that happened to me!

For 6 months I kept a log of any symptoms I had, no matter how small or how long I had them. I even included pics of rashes that I had. The rheumatologist used these along with the gp notes to help make her diagnoses. Blood tests couldn't catch it, she said that you had to be in or entering a flare for this to happen. I am treated with hydroxychloroquine and meloxicam - the same as a positive result would. I have also received steroid injection for when it was really bad, both from the rheumatologist and my gp.

I hope you are receiving the same treatment and understanding that I got. It has changed my life and has given me peace of mind that I now know what has and is wrong with me.

Good luck xx

[Fennella02]

Hi. I was diagnosed 2001 with such textbook presentation that my rheumy was instantly convinced and treated me on the spot despite repeated negative blood tests. The main issues for me have been severe fatigue and feeling very ill, malar rash, swollen, red joints, Raynauds, blisters/lumps under the skin. Flares can be very unpredictable and often change in behaviour pattern. I can be crippled with severe knee pain and swelling at 7 am and then fully mobile by the end of the day or it can drag on for weeks.

Treatment was minimal and erratic (my choice) for many years but I now need Mycophenolate, Hydroxychloroquine, prednisolone as a mainstay.

I hope you find a Rheumatologist who is prepared to treat your symptoms rather than your blood picture. They are out there! Best of luck. Clare

[DiamondDust]

Hi, my experience was very similar. It's taken 5 years and collecting symptoms/rash photos etc to finally be diasnosed as sero neg. As others have said, you often need to be in a flare for blood tests to come back positive. I've recently had a bad flare and my blood showed signs of inflammation without infection, d dimer raised and weakly positive ANA. I take methotrexate, plaquenil, steroids and oxycodone for the pain. My main issue is pleuritic pain, which I haven't been free from in 5 years. I also get joint pain, tiredness, rashes, muscle fatigue, brain fog etc, exactly the same as a 'normal' lupus patient! Take care x

[GloomyEeyore]

My rheumatologist hasn't diagnosed sero negative lupus but has strongly hinted that is what I have. He is the consultant and I have only seen him once, having seen his registrar previously. Went over all my symptoms then asked if I had heard of SLE. He then went on to say that 2% of patients are sero negative and I could be one of that 2%. Started me on Hydroxychloroquine, 400mg, 400mg, 200mg on a repeating cycle. Said that for now he would say I definately have a connective tissue disease because he would like to dot the i's and cross the t's before giving a positive diagnosis of which one. I suffer from joint pain, exhaustion, face rash, dry eyes and mouth, mouth ulcers, leg ulcers, hair thinning. I also suffer brain fog so have probably forgotten to add a few! Am not back at my rheumatologist until November as he wants to wait to see how I get on with the Hydroxychloroquine. In the meantime I have a new GP who is excellent and will be in touch with my rheumatologist if he thinks I need to go back sooner.