I have red sore eyelids which I thought were sjogrens related but are not. They are - yet another - condition to add to the last. Any advice re treatment or coping please - I have a cleaning routine and antibiotic cream.
Does anyone suffer from an eye problem called Ble... - LUPUS UK
I thought I had this as I have red sore eyelids. Been to the optician and she said my eyes are just very dry. I use an eye bag that you heat up in the microwave twice a day which has helped loads with the dryness and it unblocks your eyelids as with bleforitus the oils can get blocked which causes the inflamed eye lids. After the heat i massage my eyelids to encourage the oils to come out. I also use blephosol to clean my eyelids and take off make up with which has helped and also artificial tears, using wet therapy drops and lacrilube at night time. This whole routine has helped a lot. Pain to do every day though! Like you say just another symptom to have to add to the list and deal with. Hope it feels easier for you soon.
Thanks Jo. I have lacrilube too and am using a hot flannel as an eye bag as we don't have a microwave. The hot flannel is soothing and as you say it's another routine - illness maintenance - to add to the list. I have glaucoma too so at night it takes around half an hour now as two lots of glaucoma eye drops, hot flannel, massage, cleanse, antibiotic ointment then lacrilube. By which time I have woken up - ha ha - so am going to move glaucoma drops to earlier in evening I think. I don't wear makeup and eye hospital have said cleanse with water and small amount of baby shampoo. Will look up the blephosol. Thanks again. Your support is just what I needed. This site is fantastic. Hope you have a good day xx sara
Yes, yet another condition, yet more fussing to do daily....
At my eye clinic last year, a consultant experienced in immune conditions diagnosed me with blepharitis + meibomian gland dysfunction & Punctate Keratoconjunctivitis Sicca + periorbital oedema which could be related to my Ehlers Danlos hypermobility type (I have infant onset SLE and am 60). The long term chronic dryness + redness of my eyes has been dreadful. He said this set of conditions often go together. He warned me that I must be conscientious about compliance with this treatment, or my yes will v quickly become much worse. Although i found this all a bit of a hassle, it has proven vvvv effective...in fact, the regime he put me on has changed my life vvvv much for the better. My version of blepharitis seldom needs antibiotics cream, but when antibiotics are needed I use Chloramphenicol Eyedrops 0.5% 4x daily. Here is my regime:
· MGDRx Eye Bag 1-2 times daily with the massage I think Joanne is doing too- available from amazon
· Hylotear sodium hyaluronate 0.1% day time eye drops - on NHS prescription
· Artelac Nightime Gel 2mg carbomer - on NHS prescription (he said lacrilube nightime ointment is his least favourite Rx. I hated it too. Artelac is less smeary and heavy)
Hope this is useful
Very useful and I am very grateful for the time you have taken to reply Barnclown. I am using chloramphenicol just at night for the moment. I shall ask GP next week for the artelac gel - although they seem quite tight on adding in new things to my script. My consultant rheumy had to write and insist I had fish oil as the GP had withdrawn prescribing it - told to by prescribing authority. I see the eye hospital again in 10 weeks and thanks for confirming the importance of keeping to a regime. I was very down last night about it - I am flaring a bit and fatigue makes anything extra seem really uphill. I will look into the eye bag. I am a very keen cook with a small kitchen so decided against a microwave for space reasons. May have to stick with warm flannel which is very soothing. Thanks again. Xx
You're so welcome -am vvvv much feeling for you...hard not to be in the dumps during flares! Giving you a gentle hug!
I don't have a microwave....Can't fit one in our kitchen! I heat the MGD bag on a dinner plate in the oven on 50 for 25 min...works fine...the damp flannel technique didn't work for me (goes cold too fast - my consultant advised keep warm pad on eyes for 10 min daily as maintenance). The MGB bags are full of flax...once you've bought one bag, when the flax in it wears out, you can unstich a corner of the bag to refill with flax you buy yourself...just sew refilled bag up again....more economical
Re vit D: you're so right! I forgot to mention I've also been advised to take high dose daily vit D for everything, including my eyes
Take care & take heart
Oh thank you for the hug. I am normally so positive but last few weeks had series of niggling additional health problems the eyes being the latest (I also have increased visual field damage and glaucoma pressure going up). So hugs are good. My Vit D levels very good, had them tested as part of research project and think rheumy tests too. Take VitD tablets every day. Thanks for oven tip. I will make my own eye bag as I like to sew - I already have flax seed ones I have made but they have lavender in them. Xxx
Hi Sjink, yes, it's another nuisance to deal with... (I have Sjogren's) Routine as recommended by Optometrist, I use a warm flannel on my lids as often as needed, Supranettes sterile wipes (they have plant extracts in), several times a day, I find them wonderfully soothing, then Systane drops. Tried Hypromellose but eyes protested by flaring, awful stuff. Unfortunately though Systane isn't on prescription. I found this quite an interesting read: aao.org/publications/eyenet...
Hi SazzyB. Great article thanks, really interesting. It sounds wrong somehow to say glad I am not alone but there is a comfort in knowing others are there to reach out to. I would not wish this wretched illness on anyone but the support group is fantastic. I shall look up those wipes. My income is limited so if not on prescription it may just be baby shampoo and water for me. My optometrist said to use flat cotton wool pads to wipe with a dilute mix do shampoo and sterile (boiled) water. Thanks again. Xx
Does anyone's eyes water uncontrollably? Usually worse in the morning or when the air is cold? I have very dry eyes (as I do not close my eye properly when I sleep) which results in me "crying" all day long. My hankerchief gets soaked by the end of the day. Have not tried the hot flannel thing might give that a try.
yes!!! that is, my eyes watered almost all the time for years until i got that regime (in my reply above) going on my eye consultant's recommendation. my version of dry eyes affected the eye ball and inner lids and the watering also seemed to dry out the outer corners of my eyes, leaving a white grainy deposit on the skin there....really sore and unpleasant.....no fun at all
So it sounds like a Lupus thing. Did not know half the small things that are up with me relate to Lupus.
I get a cloudy layer of clunk (my best description) on my eyes every now and then, which I can feel on my eyes, then I have to wipe it away. Have noticed it has got worse over the years. my eyes used to water only in the morning and during cold months. Now everyday sometimes all day. Luckily my eyes dont get sore, just the area of skin around my eyes because I am constantly wiping tears away.
No, mine are just very dry and feel sore. But that may be the sjogrens symptoms on top of the blepharitis (or t'other way round). The hot flannel is amazingly soothing and I use it as a 10 minute meditation. xx
Hi Sjink I get blepharitis often. It's an infection of the eyelashes. The best way to treat it is to put a small drop of baby shampoo in warm water and bathe the eyes for a few days. Its a pain but it works x
Yes I too suffer from blepharitis. I also have sjogrens. Not sure whether the sjogrens actually flares up my blepharitis or not. The advice I was given is to bathe your upper & lower inner eyelids using a cotton bud with a mixture of 1 part baby shampoo with 5 parts luke warm pre boiled water twice a day. I try not to wear makeup but if i do I only use hypoallergenic makeup on my eyes now. Hope that helps.
Yes, I have been diagnosed with blepharitis, but it is secondary to SLE and caused by the lack of moisture, which is part of the SLE.
GP sent me to Eye Casualty as I could not even open my eyes my lids were so inflamed. I saw the dry eye specialist there who diagnosed the blepharitis.
I have hypromellose and viscotears drops but my optician suggest I ask for another one called lacrilube to use at night.
I have also been tested at the CTD clinic where they stuck blotting paper under my eyelids to see how much moisture was naturally produced.
This problem is "par for the course" with lupus.
Also I use the hot cloth routine to keep them clean. I can't wear eye make up and I have to be careful not to get makeup or any skin cream near my eyes. Dust and grit really sets them off too, as do the chemicals in swimming pools.
It is par of the course for RA too - which I have a diagnosis of but feel much more affinity with you Lupus people as mine is more systemic than about swollen painful joints. My eyes have been very dry for a few years now but, although I used to get Blepharitis when I was younger and suffered from chronic eczema - these days it is just about lack of tear production. I'm 51 and I did ask the optician if it could be age related but he said no I was far too young to suffer from such a "pathalogical lack of tears". My rheumy just shrugged and said "yes this is rheumatology related" and I know many with RA suffer from Sjogrens too. My GP gave me Hylo Forte preservative free eye drops which are great if you have sore or weak hands because they are in a pump bottle rather than fiddly little sachet bottles I had previously. I am very lazy about getting them cleaned using the baby shampoo method and tend to only do this once a week as it takes time but it is really good although I don't really have the Blepharitis - mine just feel very tight and I blink constantly. I also use Lacri-Lube gel at night and this makes them feel less dry and scratchy in the mornings which is a bonus. Twitchy
Thanks for you reply and thanks everyone. I work Wednesday to Saturday so am too tired for being online when i get home so bit late replying. I really appreciate the support - all the eye washing, eye bag etc is working a bit so trying yo keep it up. Last night was straight to bed and too tired to lift head off pillow and missing the routine meant eyes worse this morn, so will keep on keeping on. Thanks Twitchy and everyone else that replied xxx
I agree..Blepharitis is associated with RA. Lupus, sjogren's, hashi / grave's etc. I have it.
I am SLE Lupus patient for 16 years now aged 48years. In addition to Kidney problems I too experience dry eyes. My routine - Morning 1 drop of Restatis, Hylo-Forte throughout the day as often as necessary. Night time again 1 drop of Restatis and before going to bed Lacrilube. Additional I have had my lower tear ducts blocked. Tried temporary blockers first but they dissolve after 3 months. As this was successful I now have permanent blockers. My Eye Doctor is reluctantly to surgically block my tear ducts as it may result in excessive tears flowing down my face. Hope my experience to date may be of some use. Kind regards.
I was recently diagnosed with Lupus in Nov, I am 51 years old. I have been experiencing dry red burning eyelids, both on the top and bottom, as well as upper eyelid swelling in the morning. My rheumy said he doesnt believe it is related to the lupus and sent me to a dermatologist. I am currently having the patch allergy testing done this week. The dermatologist thinks it may be from my face products..I really believe it is from the lupus, but like every other symptom doctors dont want to link them to the lupus.