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I was about to be investigated for Lupus when lockdown hit, after a doctor in A&E told me to get checked out (unrelated to the admission). Having done lots of reading, it seems likely I have had the condition for some years - I was diagnosed with M.E ten years ago, and fibromyalgia more recently, but my old GP (moved late last year) never instigated a referral or even considered it.
From my research, I tick a lot of the symptom boxes so I need to now wait for a F2F consultation with GP as cannot see them dealing with this over the phone.
If you have Lupus could you give me some insight into diagnosis, medication and how it affects your life please. I like to keep on top of my health, and this has been bothering me for months now.
Thank you for any replies ￼
My husband has discoid lupus which means he has skin lesions. Can’t ever go on a sunshine holiday again as UV light makes him ill.
Hey I don’t have any advice about diagnosis but I’m in the same position as you as I’ve recently realised that I have lupus.
What symptoms do you have?
Have you researched the diagnostic criteria?
I get all of the skin rashes so I try to avoid the sun and I find that certain foods trigger flare ups.
I was diagnosed with lupus after investigations for MS (which had been ongoing for years). It has subsequently been downgraded to UCTD which for me is sort of latent lupus, as I'm not classically symptomatic. Lupus is where the immune system attacks the connective tissue which is present throughout the body, so it can appear differently in different people with varying levels of severity. I'd say my symptoms were similar to fibromyalgia, but the blood work tells a different story. They should test your blood for various things. A high ANA e.g. 1:1280 or 1:640 titre is suggestive of lupus but does not confirm a diagnosis on its own. Other antibodies can be indicative. For me I have positive anti cardiolipin and also positive for lupus anticoagulant. I have low platelets (intermittently) as low as 40k (normal is over 200k I think). I also have consistently very high inflammation markers. Other signs are rashes - I have a lupus type pustular rash on my feet but only about 30% of people with lupus have the classic butterfly rash on their face. Sun can trigger rashes. Cold can trigger Reynaulds Syndrome, and I experience livedo reticularis which is a lacy rash caused by circulation issues. Lupus classically causes joint pain which is in the fingers etc, but my pain is tendonitis and muscle pain mostly. Things like frozen shoulder and achilles tendonitis are more common, but I don't think they are part of the diagnostic criteria in the UK. I have neurological symptoms which isn't that common (but is part of the condition) although the headaches are a sign of lupus. Lupus can affect the lungs and kidneys, but not everyone will experience this. I experience, from time to time, crushing fatigue e.g. trying to figure out how I can climb the stairs to put my children to bed. I generally need to sleep in the afternoon, although I am doing better in lockdown with a slightly slower pace of life. Ulcers and temperatures can occur during a flare. Treatment is by hydroychloroquine (an immune modulator) or by immunosuppressants. I need to take aspirin because I have blood clotting issues as part of the SLE.
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