Discoid lupus in ears?: For a year now I've had... - LUPUS UK

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Discoid lupus in ears?

magcass profile image
14 Replies

For a year now I've had some crusting in right ear canal and then left ear. ENT, Rhuematologist and primary care dr's said they didn't see anything. Now my left ear is painful, especially to touch and crusty. Has the discoid lupus spread to my ears? Has anyone had same experience?

Thanks

Margaret

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magcass profile image
magcass
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14 Replies
djsema profile image
djsema

Good morning megcrass I have the same problem I have it in my left ear and it's horrible , I know what you are going through 😩

Wendy39 profile image
Wendy39

Hello. I can relate to your ear symptoms. I was diagnosed with SCLE in October / November 2013 but this was amended to SLE in April this year so I don't have DLE but I have experienced the crusty ears that you have. I am photosensitive but didn't know this back in 2013. We went to Turkey during the kids Easter school holidays and I went down hill from there. Apart from Systemic symptoms I had numerous skin issues. The malar rash. Hair thinning & bald patches - scarring alopecia. Sore and dry hands. Scaley plaques on my feet. Terrible hair nails. Plus crusty weeping sores in my ears and behind my ears. Horrible things. I haven't had them since but my meds have changed and so has my approach. I now cover up completely. I wear trousers or jeans, sun protection tops, Factor 50 on my face all year round, sun cream on my feet and hands. Big sunglasses. And I have now been told I must wear a hat every time I go out, as I am more photosensitive than I thought. I think the hat is making a difference. My symptoms are better this summer for it. I hope I've helped.

MaryPery profile image
MaryPery

Yes, I had exactly the same. I used steroid cream and changed my diet to vegan over a year and a half ago. It has not returned since my change of diet.

Zara-LouiseD profile image
Zara-LouiseD

I have crusting in the openings of both ears, but mine is believed to be psoriasis. It's very itchy and very annoying!

Confused01 profile image
Confused01

This is interesting. I have suffered ear crusting, severe photosensivity, very bad rushing in sun (light allergy not prickly heat). I also get rushing to my outer thighs, most often when not feeling good.

Consultants done blood tests and say not Lupus yet I display so many signs. I've been given diagnosis of CFS/ME which I do not feel typical off!

Sorry this doesn't answer your post helpfully, but I relate to xx

lupie46 profile image
lupie46

My right ear has it now. One Dr couldn't see anything, another said it could be psoriasis. I think it's lupus.

Shadows-walker profile image
Shadows-walker

Oh right that explains a lot , I am constantly having issues now with both my ears and nose I have spray for my nose but nothing for my ears.

Another one to mention at next appointment

Gentle hugs

Chris x

leslieliesel profile image
leslieliesel

Issue behind my left ear..I do not like it at all!!

Wendy39 profile image
Wendy39

I really think mine was a photo sensitove thing. Since taking more care in the sun, those crusty ear sores - in the ear and behind the ear etc - have gone.

Puska profile image
Puska

I'm having similar issues. Rash has been challenging to diagnose. On back of head and through to temple and ears. Has gone from Lichens Planus to DLE and currently psoriasis. By 3 different dermatologists. All are auto immune. Covering up from sun makes no difference as it's covered by hair. Prescribed Steroid creme helps but doesn't eliminate. It's really annoying.

webar4780 profile image
webar4780

Hi magcass,

Yes, I have left ear canal with same symptom; very itchy and often painful too during a flare-up.

I also believe, sunshine intolerance/sensitivity, and, or, very cold weather, triggers it. So, just like Wendy39, I have adapted my lifestyle behaviours. I make sure I protect my skin (body), and ensure, I'm covered up and never, ever, leave the house without applying Sun factor, as advised by dermatologist.

I have gone from a fun and sun-loving, busy, go-getting-girl to a more educated, mindful woman. Lol. Now, I have fun deciding what to wear that will lessen the symptoms flare up.

hiya , got the same symptoms as you, tried everything I can think of but all the creams are great until you shower or bath t hen within 10 mins my ear looks like a crisp , so annoying.

hiya , had the same problem as you for years, i use aqueous cream daily but soon as i shower or bath I'm left with a left ear tip like a cornflake and my right ear canal all crusty, drives you crazy but what can you do 🙁

Soe1 profile image
Soe1

Hi, I get this. It’s actually psoriasis in your ears which unfortunately we can get with lupus. It could also be Candida which is yeast.

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