Advice Appreciated: Hello everyone I have suddenly... - LUPUS UK

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Advice Appreciated

misty14 profile image
misty14
β€’31 Replies

Hello everyone

I have suddenly got a swelling on my right eyelid on a blood vessel. I can have bruises there but never had this and wondered has anyone else?. The same eye does water first thing in a morning then stops. It can also feel itchy and be red. I've recently had my eyes tested and all is healthy. I'm on 9 mg steroids daily and feeling flarey after the flu jab!.

Any thoughts and experiences greatly welcomed as not sure if I should be concerned about it?.

Many thanks

MistyX

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misty14 profile image
misty14
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31 Replies
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Littlegrass profile image
Littlegrass

If it's itchy and happens over night, it's most likely allergy! Us who has autoimmune problems are very prone to allergies. I had something similar happened to me too. Maybe take some antihistamine see if it works? Hope it goes away soon! xxx

misty14 profile image
misty14β€’ in reply toLittlegrass

Hi little grass

Thank you for your reply. Interesting thought , allergy, does make sense. Did yours go quickly?. Mine isn't getting bigger and bigger luckily , I'm keeping an eye on it, pardon the pun!. Ha!. I will try an anti histamine. Hope your keeping well. X

β€’ in reply tomisty14

Hi Misty - yes I agree with littlegrass about it probably being an allergy -especially after a flu jab, which often seems to make people feel rubbish even though it's not a live vaccine. Hope antihistamine sorts it -otherwise I was thinking blepharitis but ask the GP otherwise - especially as you are on steroids. X

misty14 profile image
misty14β€’ in reply to

Hi Twitchy

Thanks for your very helpful reply. I'm going to try an anti histamine and I'm keeping an eye on it Ha!. I've a GP apt next Friday(4th) so will discuss it then if needed. Eyes are a new area for me luckily hence wanting advice. How are you?.. Are you keeping next months Rheumy Appt?. Need to chase mine.X

Littlegrass profile image
Littlegrassβ€’ in reply tomisty14

Just saw your reply for some reason! Hope your eye has got better! Mine took a couple of days to get back to normal. Xx

misty14 profile image
misty14β€’ in reply toLittlegrass

Hi little grass

My eye has got much better thank you for asking. Hope your well. X

frog profile image
frog

Hi, don't rule out a stye on your eyelid. I would say go back to the optician, they are eye specialists and will either refer you to your GP or prescribe a remedy. Usually hot compresses and lid wipes. Blepheritis is caused by flaky skin around your lashes, these flakes can go into your eyes causing a sore burning sensation, but usually not swelling.

Your optician could normally fit you in between patients especially if you have had a recent sight test.

Take care, Sandy.

misty14 profile image
misty14β€’ in reply tofrog

Hi frog

Thank you for your very helpful reply. I will research a stye, thought of it too although I think blephritis may be it as the other symptoms fit. Hope your well. X

PMRpro profile image
PMRpro

My query would be blepharitis and possibly a blocked meibomian gland:

patient.info/health/blephar...

nhs.uk/Conditions/Blepharit...

The watering is a sign of dry eyes (yes, I know, no logic) and that is also a sign of lack of production of "proper" tears.

People over on the PMRGCA forum have been saying recently how much the eyelid hygiene instructions have helped them.

misty14 profile image
misty14β€’ in reply toPMRpro

Hi PMpro

Thank you for your very helpful reply and links. Had a look last night and I definitely think blephritis could be it. How bizarre to have watery eyes due to dry eye.!. My other eye watered first time yesterday and I've got dryness elsewhere, particularly my mouth. I had a go at the eyelid hygiene and the warmth felt lovely on them. Glad it isn't a condition that affects sight but sorry it's something else to cope with. These illnesses throw up so much don't they?. Hope your PMR is responding to steroids and your well at the moment. X

PMRpro profile image
PMRproβ€’ in reply tomisty14

The watery eyes is because your eyes know they need tears to keep them in good condition - so when there is something wrong with production of the high quality viscous tears we usually make they produce large quantities of thinner ones.

If you are having dryness other places then this may be the start of sicca or Sjogren's syndrome (the same symptoms in general except in Sjogren's they can identify antibodies.

Sorry to disappoint you though - IF it gets bad enough or IF it is Sjogren's it CAN affect your sight if not managed well. So start with the stuff I recommended and keep an eye out for other areas of dryness (and they can be all over!!!).

misty14 profile image
misty14β€’ in reply toPMRpro

Thank you PMpro for your very helpful advice and info. Had often been confused between Shogrens and sicca so now I know. I realise I've caught this early as it's quite mild so will do the self help measures to ensure it doesn't worsen. Am so used to being health vigilant that it won't be a problem. You have a lot of medical knowledge, are you a health professional?. Hope your well and thanks again, do appreciate it. X

PMRpro profile image
PMRproβ€’ in reply tomisty14

I worked in the NHS for a long time on and off. I started in the biochemical medicine labs after deciding not to continue with medicine (so so glad I didn't!) but then did a physiology degree and did various things including research alongside my husband. I'd learned German when he worked there and started translating, specialising in medical and science texts and got into pharmaceutical market research - done to see how trials are impacting on healthcare workers perception. That all resulted in a LOT of background knowledge. And PMR/GCA are my specialist subjects!

misty14 profile image
misty14β€’ in reply toPMRpro

Hi Pmpro

Your replies are so good I knew you had to have a background in healthcare somehow. Must have been so hard being ill and having to give it up/or modify what you wanted to do. Lucky for us that your so willing to impart some of your clever knowledge on forum to benefit others. Many thanks and be as well as possible.X

PMRpro profile image
PMRproβ€’ in reply tomisty14

The only thing I miss is skiing! That's why we live where we do. But hey-ho - now we just do apres-ski...

misty14 profile image
misty14β€’ in reply toPMRpro

Hi PMpro

Where do u live?. It's hard isn't it when we're used to being active and sporty!. X

PMRpro profile image
PMRproβ€’ in reply tomisty14

Half way up a mountain in northern Italy. About a 5 min drive from the bottom of the gondolas, bus or train from the village...

misty14 profile image
misty14β€’ in reply toPMRpro

Gosh PMpro, must be tough seeing the skiers and you can't partake!.Idyllic place to live though, just assumedyou were in UK!. Thank you again for the blephritis info. I'm another fan of the eyelid hygiene regime as it's definitelyhelped my symptoms. Would never have thought inflammation could get to our eyelashes.!.X

PMRpro profile image
PMRproβ€’ in reply tomisty14

There were other factors - there are too many tourists who think they are brilliant skiers but really it is down to carving skis making it easy to turn. They may be able to do perfectly reasonable turns - but when they go faster they are out of control and, worst of all, are unaware of their lack of ability. I've come close to being wiped out several times - and it takes away a lot of the pleasure when you have to watch in all directions! Haven't got eyes in the back of my head...

misty14 profile image
misty14β€’ in reply toPMRpro

Hi PMpro

BUT your working on having eyes in back of head!. Sounds extremely hazardous and annoying!. You must want to scream at them specially if your having a bad day yourself!.How long have you been there?. X

PMRpro profile image
PMRproβ€’ in reply tomisty14

We bought the flat nearly 12 years ago and got the key exactly 10 years ago. We spent a couple of years just here most of the time but registered as residents 5 years ago - and have just collected our pieces of paper granting us permanent residency - just in case the UK doesn't get that bit of Brexit right for people who already live here. My husband already has full healthcare entitlement as an Italian pensioner (tiny pension but better than a slap in the face) - I have another 2+ years to wsit so the longer Brexit takes the better!

misty14 profile image
misty14β€’ in reply toPMRpro

Hi PMpro

Must be good to finally get your residency papers!. About the right time for you re Brexit, looks like it will take several years for us to leave EU , if we do it at all!. X

PMRpro profile image
PMRproβ€’ in reply tomisty14

I only went to ask for them because of Brexit! Wasn't bothered before.

Once they trigger Article 50, or whatever it is called, anything not agreed in 2 years won't be. Because as you will have seen with the CETA stuff, it is difficult to do things without getting a veto if someone feels like it. Don't imagine that there aren't countries who will delight in refusing the UK what they want - just like children in the playground won't give way to the child who wouldn't play to the majority's rules. I would love to dream it won't happen...

EOLHPC profile image
EOLHPC

Hello misty: am so sorry this is happening & I hope it resolves easily & quickly. You've got great replies. Not much for me to add πŸ˜‰

For what it's worth (you know how many hassles my medics & I have had & still have with my eyes generally): If there is anything I've learned over the years, it's to take photos & see my GP ASAP so that issues are well documented & treated promptly...and referral organised if appropriate

Have you ever had other trouble with your eyes & periorbital tissues diagnosed? Where are your eyes tested...i.e. Do you already attend an NHS ophthalmology/eye clinic, or just an optometrist? I ask because the symptoms you're describing do also sound v like Sjogrens dry eye to me too....and the other day I attended a BSSA lecture on Sjogrens by one of the senior consultants at my univ hospital rheumatology clinic. I asked her a question about my cornea inflammation (which is mainly due to SS so active that years of conscientious front line dry eye treatments haven't got my version of dry eye adequately under control). Her reply was along these lines: the ecosystem of each immune dysfunction/connective tissue disorder patient's eyes is highly complex & individualised & treatment needs to be given personalised care designed by ophthalmic experts - including monitoring re the side effects of meds e.g. Pred, hydroxy etc etc. so if/when you do see your GP, might be worth discussing this angle, if you haven't already

Hope you'll keep us posted

πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

misty14 profile image
misty14β€’ in reply toEOLHPC

Hi Barnclown

Thank you for your lovely reply, so appreciate it. Have you had a swelling on your eyelid before?. So sorry you have had so many problems with your eyes. This is all new to me and I hope I'm not starting anything new. I have my eyes tested by an optometrist only once a year. I am due to see my GP next Friday(4 th Nov) so pardon the pun I'm keeping an eye on it between now and then!. I'm also due a Rheumy Appt so will have to chase that I think, to go before Xmas!.

Hope your recovering well.X

EOLHPC profile image
EOLHPCβ€’ in reply tomisty14

I like the way you're thinking! Please give us updates when you can

Yes, my long time version of Sjogrens dry eye includes chronic periorbital oedema, swelling & rashes inc of the eye lids...sometimes so bad that I can hardly see.

5+ years ago, rheumatology started me on lacrilube at night due to sicca symptoms. Lacrilube didn't help me much. 4 years ago my GP finally referred me to hospital ophthalmology eye clinic where an immune dysfunction expert consultant nearly blew his top: told me I was in a bad way & should'be been referred years ago (this all became a bad daily prob in the early 1990s). Anyway, he diagnosed Sjogrens punctuate keratocunjlunctivitis sicca + abacterial blepharitis + meibomian gland dysfunction & prescribed an extra special combined therapy treatment plan which soothed & seemed to damp down everything reasonably well until this year when, to my surprise, the eye clinic's surgeon opthalmologist cornea expert told me my Sjogrens cornea inflammation wasn't damping down enough to prevent cornea ulceration and so he added fancy new immunosuppressant eye drops to my treatment plan....Eyes are so precious...this was a big wake up call for me....

So, take care dear misty...I hope your eyelids feel much better ASAP

πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

PS in case it helps, here is my Sjogrens dry eye combined therapy treatment plan:

. MGDRx Eye Bag 1-2 times daily

Β· Hyloforte sodium hyaluronate 0.2% day time eye drops

Β· Artelac Nightime Gel 2mg carbomer

.ikervis ciclosporin eye drops 1mg/mL

misty14 profile image
misty14β€’ in reply toEOLHPC

Hi Barnclown

Thank you for all your very helpful eye info. It is all very sobering when our precious senses are involved!. I had a look at PMpro's blephritis info which includes the dry eye part and symptoms do fit!. It's such a paradox that your eyes can water due to dryness and it makes sense as battled dryness elsewhere for years now!. Wouldn't have believed that eyelashes could become inflamed!. They loved the warm facecloth last night so looks like I shall be following your daily routines, another coincedence for us but feel happy I can ask you anything about it all. You paid such a price for not knowing what your health problems were!. TAKE CARE X

EOLHPC profile image
EOLHPCβ€’ in reply tomisty14

So v Glad you're seeing πŸ˜‰ your way forward dear misty...the BSSA mag had a great piece on dry eye recently: even now reading this sort of info amazes & impresses me with the complexity of our powers of vision & how our immune dysfunction harms it...please let us know how you get on πŸ€πŸ˜˜πŸ€πŸ˜˜

EOLHPC profile image
EOLHPCβ€’ in reply tomisty14

PS here is a link to probably THE BEST article I've found yet on ocular manifestations of autoimmune disease...please don't be put off by the horrid pics πŸ˜‰πŸ˜˜πŸ€

aafp.org/afp/2002/0915/p991...

misty14 profile image
misty14β€’ in reply toEOLHPC

Hi Barnclown

Thank you for this very detailed article and photo warning, they were very graphic!. I think I'm catching this at its earliest stage symptoms seem to be very mild luckily. I know though I must look after my eyes properly to stop them getting worse. Knowing your experience will help me do this thanks so much. I do appreciate this fab forum!. X

EOLHPC profile image
EOLHPCβ€’ in reply tomisty14

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