Author Topic: Eyelid Swelling Worsening  (Read 239 times)

Kris29

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Eyelid Swelling Worsening
« on: April 04, 2018, 08:19:32 AM »
Hi! First - I feel like I only post here with problems, and I'm sorry about that! I do come here and read through all of your stories sometimes, but I'm still pretty early in my Sjogren's journey (diagnosed three years ago) and don't have much advice to offer...

My diagnosis came about when symptoms other than dryness - fatigue, migraines, sores in my mouth, etc. - led to blood tests which came back for SSA antibodies. When I was diagnosed three years ago, I only knew my eyes were drier than other people's because the eye doctor told me so when I was sent to him to confirm the diagnosis. But it was very mild and very much overshadowed by my other symptoms.

Fast forward three years, and after giving birth in early December, my eyes have been taking center stage. The morning after I had my daughter, my upper eyelids were insanely swollen. I looked scary! And was obviously very comfortable. But my baby girl had been stillborn, and I had never, ever cried that much, so I thought it might be within the realm of normal and never talked to a doctor about it.

The swelling subsided, but since then my eyelids have been slightly swollen (and sometimes very itchy) on a regular basis. My eye dryness is definitely worse, and I'm using over-the-counter drops morning and night and have just started using overnight ointment. And that seems to help very little and very briefly. There's no redness, pain, or other signs of infection that I know of.

Does this sound like something dryness does? I'm wondering if I should make time to see my eye doctor again or just give it more time. (It's been 4 months, and seems to be getting worse instead of better.) He told me that when the over-the-counter stuff stops working (maybe that's what's happening?), we'd have to try prescription drops. Any advice on that?

Thanks!!! You guys are great. Still searching for a rheumy who has any real Sjogren's experience.
« Last Edit: April 04, 2018, 09:05:35 AM by Kris29 »

araminta

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Re: Eyelid Swelling Worsening
« Reply #1 on: April 04, 2018, 09:41:46 AM »
I'm wondering if you've got blepharitis - I had it badly for several months till another member suggested treating it with diluted tea tree oil, which worked brilliantly.   I think it might be a good idea to see your eye doctor again.
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Kris29

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Re: Eyelid Swelling Worsening
« Reply #2 on: April 04, 2018, 10:00:59 AM »
Thanks for the suggestion. I had seen blepharitis when I was researching swollen eyelids, but I didn't look much further after I saw it referred to as an infection since this isn't red or oozing or anything else I associate with infection. But after looking deeper and looking at pictures, I think it might be. Looks like some people have just the swelling without crustiness or redness. Thanks!

I have some therapeutic-grade tea tree, though I'm a little nervous about putting it near my eye, diluted or not!!! Would you mind sharing what you did? I've been going to doctors a lot lately, and if I can resolve this myself before I see my GP again so that I'm not asking for another referral, that would be awesome.

Also, I've been wearing eye makeup for the first time in my life lately. Not everyday though - maybe a few days a week. Looks like that can contribute to blepharitis. Maybe the Sjogren's just means no eye make-up for me. I guess I'll get bolder with my lip colors!
« Last Edit: April 04, 2018, 10:11:11 AM by Kris29 »

araminta

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Re: Eyelid Swelling Worsening
« Reply #3 on: April 04, 2018, 11:04:41 AM »
This is what I did (and still do every few days just in case).

Dilute the tea tree oil 1 part oil to 10 parts distilled water (I couldn't get hold of distilled water so use purified rosewater, which has been fine for me).   Keep that in a bottle.

When you want to treat your eyes, put 1 part of the above mixture to 5 more parts of distilled water.  Put in microwave for a few seconds until quite warm but of course not too hot.   Apply gently to upper and lower eyelids around the eylashes with a Q-tip.

It worked very quickly for me.   Good luck.   By the way I gave up wearing eye makeup, which I used to love. :(
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Kris29

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Re: Eyelid Swelling Worsening
« Reply #4 on: April 04, 2018, 11:56:50 AM »
Thanks so much for sharing that! Just did some warm compresses, and I'll give the tea tree a try tonight. After reading more about it, I'm almost positive it's blepharitis.

I just started playing around with makeup. (I'll be 30 in a few days, so I'm a little late to the makeup game.) I was really enjoying it and am pretty disappointed.  :-\   On the bright side, I guess now I won't have to worry about making sure my eye drops don't make my mascara run.

araminta

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Re: Eyelid Swelling Worsening
« Reply #5 on: April 04, 2018, 03:40:56 PM »
I should have added it's a good idea to shake the bottle of mixture before you use it just to make sure it's well mixed up.
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Carolina

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Re: Eyelid Swelling Worsening
« Reply #6 on: April 04, 2018, 04:00:28 PM »
I found out I have blepharitis about 8 years ago, during a routine eye exam.  One of the 'side effects' is that it made my eyelashes curly!   Now, however, the lower lashes are becoming very sparse.

I only use warm compresses, but I have heard of more interventional treatments, including something done in a doctor's office to compress the glands and express the contents.  This was discussed in an earlier topic, several years ago. 

I have some tea tree oil (over the years I have bought so many things to try to address my various conditions!).  So I may try Araminta's recipe.   
 
Having problems with our eyes is so difficult, isn't it?

Regards, Elaine
 


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araminta

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Re: Eyelid Swelling Worsening
« Reply #7 on: April 05, 2018, 03:28:47 AM »
Elaine:  I used warm compresses for several months as advised by my optician, it had absolutely no effect.   Nor did cleaning my eyelids with Blephasol, also recommended by optician.

The tea treee oil advice came from BlueGardenia on this forum. 
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Sharon

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Re: Eyelid Swelling Worsening
« Reply #8 on: April 07, 2018, 02:54:20 PM »
Since you mentioned they're itchy it could be an allergic reaction.
We're prone to allergic reaction with dry eyes since we don't have the protection
tears give the eyes and not much to wash out allergens.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Sooki

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Re: Eyelid Swelling Worsening
« Reply #9 on: April 13, 2018, 03:31:00 PM »
I have swollen upper lids as well.  They came after eyelid surgery a year and a half ago and have remained.  My triggers for increased swelling include stress, warm dry air, spicy food, chocolate, crying (even just the urge - happy or sad), soap, makeup, and more.  Stress can be as small as changing lanes in traffic, or paying extra attention when sewing multiple layers of fabric!  These are also rosacea triggers, so I've tried rosacea fixes - Cliradex wipes (active ingredient in tea tree oil), doxycycline, and ivermectin (oral or topical).  These seem to help for awhile; they are also treatments for Demodex mites.  One thing that helped quite a bit was an OTC antihistamine, but it made me so drowsy and foggy, it was scary and I was unsafe.  For awhile wearing orange blue-blocker glasses when on the computer helped.

It could be an allergy, maybe to Demodex, maybe to dust mites (esp. in our house).  It could also be some kind of tissue memory (?) of the post-surgical stress (I went back to work too soon and seared my eyes on the computer).  I can't imagine the stress you must have felt.

Palliatives have included Alaway drops (until I started reacting to the BAC preservative) and Similisan allergy drops.  The latter are very mild and just help wash out my eyes when they're irritated.  I'm going to try just a boric acid rinse (homemade) one of these days.

Meditation helps me keep calm and I'm also trying to calm my eyes in meditation in case it's some tissue memory. Can trauma leave tissue memory?  I'm being proactive and creative as you can see.

It's really uncomfortable and I often feel like a freak with those swollen upper lids.  I sympathize with you and hope you'll post updates with any remedies you've found.
« Last Edit: April 13, 2018, 03:35:00 PM by Sooki »
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, black current seed oil, D-mannose, Paleo AIP, fish oil, eye ice packs, Cliradex wipes

irish

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Re: Eyelid Swelling Worsening
« Reply #10 on: April 13, 2018, 10:40:42 PM »
There is an allergic type reaction that can affect people. This can affect the tissues in the face, neck, throat and eyes, etc and probably other places also. I am unable to pull the name of this condition out of my brain right now.

Treatment is usually something like Zyrtec daily. This usually works for most people. There is also another antihistamine that has now been made over the counter. It is called Xyzal and is taken once a day. I was prescribed this many years ago by my immunologist after having a bad allergic reaction to an IVIG product. Any time I get a slight itch or blotchy area on my skin I take one of these tabs and it takes care of it quite fast. The good thing about this pill is that it doesn't have the sedating effect that some of the other antihistamine tabs do.

It used to be spendy when it first came on the market and is a little more costly than other OTC, However, if you only take one pill a day compared to some of the others that need 2 pills a day it might even out in the end. Whenever one has swelling anywhere on the face and neck they should be aware that swelling of the airway could happen also. This can make breathing difficult and constitute a medical emergency. Just to encourage you to pursue diagnosis of this.Good luck Irish

araminta

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Re: Eyelid Swelling Worsening
« Reply #11 on: April 16, 2018, 07:24:04 AM »
Hi Kris - just wondering if you've had any joy with treating your eyelids?
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Sharon

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Re: Eyelid Swelling Worsening
« Reply #12 on: April 16, 2018, 10:10:29 AM »
Irish- do you mean "Angioedema'?
I was convinced this was causing my eyelid swelling but antihistamines had very limited effect on it
and I couldn't get the diagnosis.
What does help is any med with pseudonepherine which some antihistamines contain.
It constricts the blood vessels in the eyelid so it helps visibly for the swelling.
However, this ingredient is also very drying!
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...