eyelid itch and rash?: I have Adult onset Stills... - LUPUS UK

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eyelid itch and rash?

Stills profile image
16 Replies

I have Adult onset Stills disease which manifests as rheumatoid arthritis. I’m not on any prescription meds for this. Some symptoms are simulate to lupus and some similar to PMR hence I follow here.

Since February 2023 I’ve been unwell with a range of new symptoms including increased joint pain. A blood test warned of cancer so most of 2023 was taken up with tests to rule this out. Not definitive but non found so far thankfully.

Naturally I’ve read a great deal during this process and this lead to my suspicion of a thyroid issue. I have all the classic symptoms and the test is inconclusive. Symptoms can be very similar to my known condition ie rash fever joint pain fatigue afternoon crash etc so I can see it’s difficult to differentiate.

I have mild dry eyes and use hydroscan day and night drops. Over the last 6 months my eye lids have become itchy and darkened. I have no known allergies, have not changed my cosmetics, cream , detergent, soap and the drops are preservative free. My eyes are NOT sticky or gluey just very itchy on the skin and getting darker almost looks like an eye shadow has been applied.

Any thoughts please?

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Stills
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16 Replies
PMRpro profile image
PMRpro

YOU may not have changed anything - but the manufacturers may have! Are you rubbing your eyes because of the itch? That can make them look darker too.

Stills profile image
Stills in reply toPMRpro

I thought about that but can’t see any new signage on products I use. Yes I’m afraid I can’t help rubbing them but try not too given how thin the skin is there. I’ve read it may be a sign of a cancer and you may remember none was found after several scopey pokies 23/4 but my Dad had NHL which is also mentioned. I’d just like to get a definitive diagnosis, appropriate medication and get on with it tbh

PMRpro profile image
PMRpro in reply toStills

One of the cancers I saw mentioned was an adenoma (I think, not got the links handy) which wouldn't be found with scopey-pokies, And with a family history of NHL - worth giving someone some bedtime reading???

Stills profile image
Stills in reply toPMRpro

Thanks I’ll look it up

misty14 profile image
misty14

I'm sorry stills your still suffering a lot and not getting answers!!. I'm glad though that the scopey-pokies didn't find cancer. That must be a huge relief for you. A few years ago i had problems with my eyelids, itchiness and soreness and was recommended on here to look up blephritis, inflammation of the eyelid. It has a daily routine to take extra care and it really did work. You might like to take a look.

I've suddenly developed muscle pain too and my illness is on a lupus spectrum (UCTD) like yours and our bodies can throw anything at us symptomswise!!.

Anyway , hope that's helpful and you improve soon. Its a long time to be poorly. Xx

Stills profile image
Stills in reply tomisty14

Hi Misty, how are you doing? I’m fairly certain is not Blephritis as my lashes are clear of flakes and not gummy but I will try warm compress which is supposed to help.

misty14 profile image
misty14 in reply toStills

It might just help stills. Xx

Stills profile image
Stills in reply tomisty14

Will be nice to lie down in a dark room with hot flannel on my eyes and is a good excuse for a nap hey. What’s been happening with you? X

misty14 profile image
misty14 in reply toStills

Just wondering stills if you've had your eyes tested lately by an optometrist?. They're very thorough as they look at every aspect of the eye. There's been a good dr column this week in the Times about eyes and infections. You've had some really good advice from Mrs Marigold on this. Another infection possibility is the HSV infection from the herpes simplex virus!!. The column recommends getting checked out and as we're immuno-compromised we're so vulnerable to these infections.

Anyway, hope your eyes improve , our sight is so precious.

I'm still waiting for a foot appt as i need advice after my op. It feels like another trapped nerve which can be very painful!. I had an appt cancelled and i'm just hoping Santa brings me one soon. 🤞Thanx for asking. Xx

Stills profile image
Stills in reply tomisty14

Not since February and I will go again in February next year. This started within the last few months so perhaps not apparent at the last test. Yes I’ve had some good advice here thanks everybody.

Fingers crossed your letter reaches Santa 🎅 xx

misty14 profile image
misty14 in reply toStills

Thanx so much Stills. Its good you've got the option of going earlier if your eye doesn't settle. Keeping 🤞for you too. Xx🎅🤞💕🎅

Potatoheat profile image
Potatoheat

My optician told me I have blepharitis and gave me gel to apply to eye lids , it works and doesn't cause any irritation to my sensitive eyes.

Stills profile image
Stills in reply toPotatoheat

I thought of that first but have no flakes, scales or gumminess of either eye.

OldTed60 profile image
OldTed60

I don’t have visible flakes with blepharitis but the optician and my eye consultant can still see it at base of my eyelashes on magnification. I also have heliotropic rashes on eyelids from what is likely to be Dermatomyositis- strongly associated with my Systemic sclerosis / Scleroderma but can also less commonly overlap with any of these systemic autoimmune diseases. Hopefully irrelevant for you but I thought I’d mention just in case.

MrsMarigold profile image
MrsMarigold

Hi Stills. My eyes, eyelids were symptomatic red veins very prominent, lids turning pinkish and dry. This was in my twenties. In my sixties now. I was like you I didn’t have symptoms of blepharitis. But then a new eye doctor diagnosed me with it.

I was told to wash with mild baby shampoo etc.. After I joined a skin forum back 2010 I learned something that I never would have thought: mites that all humans have though they are naked to our eyes like to live in the eye lashes, brows. It was finally addressed by dermatology and a product on A. you can try is Cliradex. It’s pricey and works. Others have since followed, they are not effective. I buy the product where the tea tree oil pads are individually packaged. It stings but is perfectly ok. Test it before you go to bed at night. In a dark room rub your eyes completely with eyes closed. Get into the lash line and also use another one for your brows. If it is mites the tea tree oil will kill them. And it’s gross but you can feel them crawling away. If this is the case there is a protocol which I can give you on chat. Immune compromised humans are vulnerable to mites infestation. Last, staphylococcal infections manifest like this and so does yeast (candida). My eyes totally clear after a month of 100 mg of diflucan. My lashes and brows filled in. Mites eat the yeast. Yucky but true. Sugar, too much carbohydrates is their food. I hope this helps. MM🌼

Stills profile image
Stills in reply toMrsMarigold

OMG!!!! I will chat to you when I’ve stopped freaking out, creepies are my main 😰

I’ve also self diagnosed molluscum contagion after our trip to Thailand in February.

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