TUMID LUPUS

I am 62 yr old female and 18 months ago I was diagnosed with SLE/AS overlap, and Lupus Nephritis. As well as Malaria rash I had a strange ugly rash on my thigh which both my GO and my dermatologist could not identify. After biopsy the pathologist reported that it was Tumid Lupus. I can't 'find much information about this and I would be interested to hear from anyone else who has it or knows anything about it. My lupus seems to be under control and I am feeling much better. I am very grateful to the BUS for the care that I have been given. Hope to hear something from someone soon!

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  • I have no personal knowledge but found this on the internet.

    ncbi.nlm.nih.gov/pmc/articl...

  • Do you find that the rash worsens with exposure to sun? I have strange acne-like spots that I sometimes get on and around my nose - they come up when the sun caught my face. It is tumid lupus and I don't think there is anything to do but stay out of the sun.

  • Thanks purpletop

    My rash was a purple and pink mess and it was on my thigh, an area of my body that certainly doesn't get exposed to the sun! My Dermatologist couldn't identify it and initially said that he couldn't rule out Lymphoma or cutaneous metastases. He was subsequently surprised by the fact that it appeared on a part of my body that didn't get skin exposure. I have been virtually house bound all summer only going out in the early mornings and then covered in Sun block and wearing lots of clothes. I had a further rash on Nov which covered my back and legs and was very itchy. I now use Balneum and a steroid cream as well as Plaquenil seems to have done the trick. I still get some itchy spots from time to time and have had an abscess as a result of my scratching but it does seem much better

  • Hi maurice1,

    Can i just ask if you spoke to my colleague Paul just before Christmas regarding information on Tumid Lupus?

    Best wishes,

    Hayley

    LUPUS UK

  • Yes Hayley I did speak to Paul and he advised me to join this forum

  • Hi maurice1,

    Good, i'm pleased you took his advice. Did you receive the information he sent to you?

    Best wishes,

    Hayley

    LUPUS UK

  • Yes Hayley I did get the info. I should have contacted Paul to let him know. Please thank him for me.

  • Poor you maurice, I too am sadly house-bound in Summer...:(

  • Thanks for taking the time to reply Omega. I'm glad I made the effort to stay indoors though it was a drag, because I feel better than I have felt for about three years. Coincidence perhaps but I'll take whatever I can get!

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