I’m 6 or7 years diagnosed with lupus, I’ve had a few different treatments over those years., but this is not about treatment.I’ve had some terrible symptoms over the years, and I feel a bit awful complaining about this minor issue now, but it is troubling me.
It’s nothing compared to what I initially went through, and that some of you are dealing with right now.
I find my eyelashes soo itchy. I can’t explain, I pull them out sometimes. It’s not a hair pulling disorder, it’s just part of how lupus is manifesting for me.
Itchiness all over was always a big part of it for me, I know I’m lucky that my rheumatologist has got me on the right meds now, but my eyelashes still itch!
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joanneM200
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I have tried a couple of eye treatments but they didn’t help. My eyes are ok, it’s the lashes, or more likely the lash beds that itch, no inflammation or infection, just driving me mad.
hi Joanne, I have just logged in to see if I can find some help with my problem of itching all over the body. You say that your Rheumatologist has you on the right meds. I thought I was going mad. The itching on the body and also my scalp has become intense. Has this been the same for you.
Reference eyelashes, I have Sjogrens same as spanielmadlady and I sit in my chair and scratch my lashes, seems worse at nighttime. I use a fair few drops and gels but I don’t think it’s that. Mine seems to itch mainly the outer corners away from the nose. Is yours the same.
hi Noo, being itchy everywhere was one of my first symptoms, but now I rarely suffer. I take skin antihistamines, stay out of the sun and use dermacool on my face/body, and it’s under control. Except for my eyelashes. I don’t think I’ve got shogrens (it was looked at) I wear contact lenses without trouble, but as I said, my eyelashes itch :/ I know it must be the skin rather than the actual lashes, it drives me mad
Hi Joanne, sorry missed your reply yesterday.How are you doing today. You mentioned antihistamines. I am on the third one the other two didn't do anything. When I walk my dogs my nose doesn't stop running and watery eyes plus this damn itch all over, scalp slight improvement with an expensive shampoo and treatment which acts as a conditioner. Trying the Aveeno Dermexa range as well.
Reference mites really only thought of outdated mascara causing these itchy eyelashes. Mrs Marigold mentioned some solutions so will look into those.
I always said I wouldn't let this disease get to me and live the best life possible but sometimes it's just so hard to keep going.
Going to opticians tomorrow so will mention the lash issue. Let you know if she comes up with anything.
For blepharitis - which this sounds like, and as one of the other responses suggests - make sure to remove all make-up at the end of the day and to carefully wash your lashes and lids. This remedy was suggested to me by a GP, years ago - she said to use baby shampoo - but these days I use ordinary soap and that works well.
Blepharitis is caused by tiny mites that live at the roots of your eyelashes - so if you can afford it it might be a good idea to ditch any 'old' eye make up and replace. But in my experience (and hopefully yours too) it is entirely possible to get this under control with just careful washing twice a day.
it’s not blepharitis, but Thankyou. I rarely wear any make up, so it’s not that. It’s just damn annoying! Itchy skin is easy to deal with using dermacool, but obvs can’t put that on my eyes.
I'm sorry. I really didn't mean to upset you. But as there may be no visible sign that you have blepharitis - the only symptom being the itching - it surely couldn't hurt to experiment with carefully washing your eyelashes/lids twice a day with soap and water.
My own experience is that when I have the sort of intense itching you describe - this really helps.
Hi joanneM200I have itchy eye lashes too. Sometimes they become very sore. My gp prescribed Blephasol lotion for eyes. I use it day and night and it really helps.
hi Joanne, I use eye drops, blephasol gel and a heat mask. I sometimes pull my eyelids up, so I can have a ‘gentle’ scratch 😄 it’s almost as bad as itchy ears in the part you cant reach!
Blephasol or my ophthalmologist said you can use a spoon of baking soda in a cup of warm water and use cotton wool to clean your eyelashes with the solution. If you get very crusty eyes your eyelash mites can multiply out of control and cause itching. It needs specialist cleaning with the above solutions. Hot eye mask good to stop the crusty build up. I use hycosan night eye gel to stop crusty build up too. E45 on my face eyebrows etc twice a day every day helps a lot with itchy face hair but again vigilance this is forever and every day. Steroid creams would need a consult but are very effective on deep ingrained itches. Itching, burning is the worst. I hope you get it under control.
Diluted Tea Tree oil in boiled and cooled water which I put in a sterile bottle really helps with my blepharitis. I use a cotton bud to apply to both external edges of the eye lid morning and night. The only negative is as the oil is absorbed by the eye lashes it makes my glasses smudgy. My optican suggested this to me.
Itch is the worst! I have an unusual thing where change of temperature causes deep itching in legs. It is caused from neuropathy.
If the usual causes of itchiness are ruled out, you could see an ophthalmologist or, maybe better, a neurologist to determine if the itch is actually coming from a neurological source.
Pay attention to see if it gets worse with any particular stimuli like wind, cold, heat.
We do get the most difficult things to figure out. Took quite a while for doctors to put that itching, dizziness and flushing together.
If your skin reacts to changes in temperature that could be a clue. What does your skin do?
I know the first thought about my itchy legs was allergy. Dermatologist had me change all products. They have to go through the whole logical list and rule out most common.
We people with autoimmune disease do tend to have the uncommon stuff! If the eye doctor rules out all the eye problems, ask about it being nerve related. Nerves control itch. Just a thought. Doctors take itch seriously.
I just get very itchy, it’s not deep like yours, it’s surface, so I can deal with it using Dermacool cream ( wonderful stuff!) but can’t put that on my eyes. I’ve seen so many different specialists over the last 10 years, dermatologist, ( on skin antihistamines) neurologist ( Amitryptaline) and obvs the rheumatologist regularly, most of my symptoms are pretty well controlled, but nothing seems to sort out the eyelash itching, and it’s stupid I know, because the actual eyelashes can’t itch, but that’s what it feels like-might we’ll be neurological- people here have suggested bathing my eyes at least twice daily with different things, I’m going to try that, and someone has got something from a GP, so if bathing doesn’t help I will ask about that x
It is not stupid at all! Itching is known to affect quality of life. I am pleased your doctors have taken you seriously. If they put you on amitryptiline, they may have wondered about neurogenic itch. Ask your rheumatologist about gabapentin or another drug to try. And yes, anything like bathing your eyes is good to try.
Really hope something helps with this awful symptom.
Cliradex Towelettes - Natural Face, Eyelash & Eyelid Cleanser - Wipes for Demodex, Blepharitis, Mgd and Red Irritated Eye Lid - Tea Tree Oil Extract. a.co/d/bgT0fHS
Hi Joanne. If they sell this product in the UK and it is affordable, it may work. My eyelashes and eyebrows and scalp itched. You say you may have Alopecia? Another poster mentioned demodex mites. They are on every human being but on certain groups of people like us autoimmune folks their numbers are out of control. A good test is to sit in a dark room and wait to see if the itch begins after several minutes. This product used every day for 30 days should eliminate the problem. You can trim each towelette in half to save money. Even though it may sting keep your chin up and get under the lid. Many people will feel the mites crawling to escape to hair or eyebrows. Then of course you need to begin swiping those. I literally swiped my head for a month. They do return at some point. Eventually with these tea tree oil wipes the mites are killed. Truly it is worth a try. They are a sneaky and pesky problem that opthomologists here in US are finally beginning to concede to it’s validity Best, MrsMarigold
I have to add that if you treat with these very effective wipes, no makeup and no moisturizer. Aquaphor gel is all. The mites use your lotions and makeup as food. 😬
Think the immune system attacks and deposits immune complex in hair follicles sometimes. Why else do we get hair loss, and rashes that are around where hairs are..Eye lashes are similar except the follicle is releasing moisture.. when we blink.
So logically this might fit in. Where my eye ash follicles are blocked, they get itchy.
I look in magnifying mirror and can see the blocked eye lash glands.
May be worth taking a photo, closed or open eyes and forwarding to your GP giving symptoms etc
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