First post

Hi, I've just discovered this site and have been checking my symptoms as I have a feeling that I could have lupus. I started off a few months ago having what the doc said was an allergic reaction to something as I was covered in huge wheals all over my body. My eyes and lips were also very swollen. This has now continued and progressed to severe itchy and burning areas, particularly on my feet, toes, hands, wrists ( and basically everywhere). I also get swelling on my joints. Woke one morning to a huge lump at the back of my neck, like a high hunchback. I am getting more exhausted every day. I seem to be getting nowhere with the doctors, who just prescribe more and more antihistamines which don't help.

Could anyone tell me if they think that this sounds anything like lupus, or am I barking up the wrong tree?

3 Replies

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  • I think that you need to see a specialist, the symptoms you are experiencing sound like an allergic reaction sometimes associated with Lupus. I had a period a while back where I was in A&E 3 days running with anaphylaxis. I have been advised not to take Ipubrofen, Codine, Aspirin or anything with those ingredients. I also avoid wheat gluten just to be on the safe side. I take Fexafenodene daily, which helps. Apparently this is a quite common occurrence, I met a Dr who had worked at St Thomas's in London when I was in A&E and he told me this is quite common. I also carry an epi pen just in case. You really need to see a Rheumatologist, I think your Dr is missing something, my Lupus first manifested itself with swollen joints and a persistent rash but just on my lower left leg!

  • First, if you have discoid lupus a biopsy can be performed, also only about 20% of people with discoid lups will show a positive ANA . Second, to confirm a diagnosis of lupus, a number of blood tests need to be done:

    CBC

    ESR

    CRP

    ANA

    HEp-2

    dsDNA

    Renal and liver panels

    Anti-phospholipid antibodies....this is a criteria for determining if someone has SLE (systemic lupus)

    Coombs antibody this is one of the criteria used to classify someone as having SLE

    Ribosomal P antibody.........this antibody is 100% specific for SLE.

    Rashes can also be caused by people with Sjogren's (a different autoimmune disorder)

    These tests need to be performed to either confirm or rule or this disorder:

    SS-A (Ro) antibody

    SS-B (La) antibody

    If all the above rule out an autoimmune disorder, then I would recommend you see a Dermatologist and Allergist.

    Good Luck,

    Dr. S. (in the USA)

    P.S. IF....... it is a severe allergy, oftentimes an antihistamine will not be effective, an oral steroid is prescribed until the flare disappears, that is why I recommend an Allergist.

  • Hi Grandee,

    As the others have suggested, I think that a referral to a specialist for further investigations could be helpful here. We couldn't say whether you may have lupus or not, because we are not medically trained, but a referral to a rheumatologist may help you get a diagnosis.

    If you need more information about lupus and how it is diagnosed, you can request or download our free pack at lupusuk.org.uk/request-info...

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