Hi there. I have SLE, sjogrens and lichen sclerosus.My question is, is there anyone out there suffering with LS on any other part of their body apart from down below?
It's started to develop on my breast I think, which was bleeding a few days ago. I'm not sure if I should use the clobestol on it as the skin is broken.
Any advise would be appreciated xx
I get lichen planus in my mouth off and on, it seems to be exacerbated by dairy so I stop it lasts 2-3 months then seems to go away regardless of diet
Hello. I've just looked at pictures of LP and it doesn't look like that. Do you get it anywhere else? xx
I think I do but could equally be lichen planus as have both - but 3grams Mycophenolate keeps both at bay most of the time. For me triggers are drug reactions ie plasma infusions, Sulphur drugs, Hydroxichloraquine, SLS toothpaste (in mouth), not rinsing off soap properly, sweats and folliculitis. I get it anywhere but especially where my skin is stretched and thin or can get infected ingrown hair follicles. It itches and surface turns lacy white and red with horrible skin splits.
Hydromol helps as barrier cream and Epimax as emollient. My dermatologist also tells me to use a tiny bit of Clob/ Dermovate ointment even in my lip twice a week so I guess the rest of body would respond to this effectively too. Dermovate is used for any kind of lichenous or eczematous skin rash but harmful for long term use and very harmful if it’s herpes zoster or simplex - so I guess would these need excluding by doctor taking a swab first?
no, yellowish striations in my mouth
Hi Slyvester66
Lichen Sclerosus can appear elsewhere on the body. Scleroderma & Raynaud’s UK (SRUK) have a little information on their website which states that it occasionally affects other areas of the body, “including the upper arms, back, breasts and shoulders”. Their information is here: sruk.co.uk/conditions/liche.... The NHS also has some limited information here (though they don’t mention other areas of the body): nhs.uk/conditions/lichen-sc...
There was a discussion on this forum about a year ago, and some people shared their own experiences of having LS, including it affecting them on other areas of the body: healthunlocked.com/lupusuk/...
In terms of treatment, we would always advise getting it checked with your doctor. They can then diagnose whether it is LS or something else, and give you specific information about what creams, etc would be suitable for what is causing it and that area of the skin.
Take care
Debbie
Hi there. Thank you for all the information. It was very intetesting to read the post from last year.Ive actually got an appointment with gp on 20th so will find out then. Ive never had annual checks for Lichen sclerosus since being diagnosed 5 years ago so i will mention that too.
Thanks again xx
hello Debbie,
Can LS affect the throat? I’ve always assumed my constant sore throat to be a permanent symptom of Stills Disease especially as I have other AI conditions such as IC and recently diagnosed with early (forgive spelling) Deptrutens Contracture .
Hi Stillsdisease
I've had a look and there are a few scientific articles reporting cases of LS which affect the mouth, but they say that this is extremely rare, and they only talk about the mouth, not the throat.
If you're unsure about any of your symptoms, it's always worth talking to your GP or consultant about them, so they can diagnose the cause and offer appropriate treatment. You may be able to ask for a referral to an Ear, Nose, and Throat (ENT) specialist for ongoing problems, depending on the referral criteria in your area and what your doctor thinks the problem may be.
thank you for your reply
note my diagnosis is Stills Disease which for me manifests as rheumatoid disease symptoms. Diagnosed aged 17 now 60 and have had regular sore throats since then and many unexplained gyne issues which resulted in a diagnosis of LS and Interstitial Cystitis once menopause started. I have the steroid cream for LS and also use it sparingly to soothe brown granular growths that keep appearing on my torso which are itchy and sore when they first erupt.I suspect theses growths are a skin issue relating to my condition as when I flare the growths increase but GP clueless so use the cream and get relief and just try and tolerate it. Sore throats are the bane of my life and am constantly feverish and nauseous from them with visible angry yellow red and white patches . Salt water gargle and topical pain relief helps, sadly throat lozenges called Tyrozets were discontinued which were a great source of relief. It occurs to me my throat could be LP. Any way, check with your GP but the steroid cream for LS does help my sore skin eruptions on the torso too.
Are there any teachers (or trainee teachers) with Lupus out there?
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