Does any one know if tumid lupus is conected to lichen planeus?

Hi i was recently reading some were i think it was on a facebook page called tumid lupus. It meantioned something to do with lichen planeus lupus i was wondering if anyone knew if there was a link between the two? My mum an brother have both got lichen planeus. I have been diagnoised with CDL and LET can any one tell me if these two are the same or two differnt types of lupus and also do you think there could be a conection between the lupus and lichen planeus? All opinions welcome.

8 Replies

  • Thank you so much for posting this I have been suffering with 'rashes' on my legs for almost a year (I have Lupus)...the suggestion the doc came up with didn't match my symptoms at all. I found lichen planus on the web and was going to mention it at my next appt as I'm fed up with waiting for them to catch on (cheeky!!) but I wasn't sure. Just checked it on NHS direct after seeing this and I'm totally convinced now as it describes it exactly and it's autoimmune. Thank you, I learn so much more from this site than I ever do a doctor!

    But sorry I had never heard of Tumid Lupus before now, what is CDL?

    I hope you get some answers soon


  • Im so glad i can help my mum has it on her back & legs. But my brother has it on his tounge. CDL is cutaneous or chronic not sure which one ha discoid lupus. This site is a god send everyone understands each other on here. Hope u get a dignosis soon its worse wen you dont no whats causing it.

  • Thanks dermo appt is on the 31st July so hopefully they will shed some light on it soon! :)

    Hope you and family are as well as you can be x

  • Hi - I was diagnosed with oral lychen planus quite a number of years ago and told it was not curable but if the sores in my mouth got too bad to take Betnesol soluble tablets, asked why I had it and they said some problem with my immune system. Only 2 years ago I was diagnosed with SLE and often wonder if having suffered from aches and pains and fatigure for many years why did they not do more tests originally to see if there was a problem other than lychen planus. So I can't help but think they are linked in some way. x

  • I am so glad i asked this question it does sound like it is connected in some way. Very interesting Hhhmmm! Lets see how many more replys and info we can get thid will be good to know. Good luck steadlymoving forward with your appointment hope you get true duagnosis.. Gentle hugs&spoons to all.

  • thanks traceymcx, u 2 :)

  • Hi I have not been diagnosed with SLE but have been to see GP for several years on and off with varying symptoms that I think could be lupus related....I had a biopsy done of my mouth about 2 years ago and have a confirmed Oral Lichen Planus diagnosis I too was told this was to do do with my immune system attacking itself I am finding that every few months I get something else to add to my list of symptoms and feel like a hypochondriac when I go to see my GP . Cant even get a referral to rheumatology GP just keeps sending me on wild goose chases for scans, urology ,biomechanics appointments to name a frustrating for me especially when I have asked for a referral.

  • Hi Kazhodluckymilo17, sorry for the late reply. I'm so sorry you are having trouble getting a referal.  I'd hope you have gotten to the bottom of your problems. I would just keep pushing it's so hard when you don't have an understanding GP. Have you got any diagnosis  yet? Gentle hugs 😊

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