Eye swelling

[PollyO]

Both eyes swollen on the upper lids. Docs are all certain it is the PBC. Also incredibly short of breath mostly at night. Right eye swelling goes clear back behind my eye as per MRI.

Anyone?

[shadowme2]

Both of mine are swollen also. I've asked my reg doc bout it, she referred me to eye specialist...been to two of them and each time told I'm fine as my vision hasn't changed and there is no pressure in the inside.....asked my Gastro about it and he tested thyroid which came out normal, I finally went to a Dermatologist who had no clue but gave me some doxycycline...I haven't started that yet because I'm not sure antibiotics are good for us. I'm struggling more with this issue than the PBC. It feels like someone is constantly pushing at my eyes from the outside, my blue has a white ring around the edge now and the whites look a bit swollen. So done with this. Please let me know if you find out anything that helps?

[donna01 in reply to shadowme2]

Hi Shadowme2- I too have the white ring around the the upper portion of my eye. My eyes are hazel but look blue now. My doc said it is the cholesterol believe it or not! Get you cholesterol checked.

[shadowme2 in reply to donna01]

Funny how doc's differ so much. The eye specialists I saw said that was an unproven myth. ?...who knows. I have had high cholesterol since I was 40, am now 56. I was taken off lipitor over a year ago because it was raising liver enzymes and at least that was proven true by lab work. At last check my LDL remains high but HDL is also a good high at around 80 so the ratio she says is acceptable. Who knows, just hope she is right as that's one less thing to worry about. My eyes unfortunately remain a mystery, all I know is my immune system started showing signs of stress about two years ago when I went in for a physical and at that time my eyes had become dry. They just keep saying I have dry eye syndrome which I can't believe because I can't bear putting drops in them, it makes the pressure ramp up to where I feel sick and dizzy. So I just try to live with it the way it is. Here I am 2 years later diagnosed with PBC, so because I can track the numbers from lab work from then to now I can see that it is auto-immune related. Like the rest of us I just wish I knew what occurred at that time to cause my system to attack....

[donna01 in reply to shadowme2]

If you google "ring around eye", you will see all about cholesterol as well. Also, maybe you have Sjrogens? FYI, since you are off cholesterol medicine, read up on celery juice benefits. I juice mine with an apple and fresh ginger to make more palatable.

[shadowme2 in reply to donna01]

Thanks, yes I'm a firm believer in eating well. I have a huge veg garden each summer and freeze tons of veggies so I can make healthy soups and I also have learned to make all sauces myself (spaghetti, pizza, stewed tomatoes, ect....). I haven't tried anything with celery tho so I'll give it a shot! Beets are great too And yes I've read about cholesterol rings and have been tested for Sjrogens and other thyroid issues...all are normal so far.

[Hidden]

Hi Polly. Are you certain it's not an allergy? I've had Sjogren's and the Cholesterol ring for years, but never had swelling. Maybe you need a second or third opinion. I also had another autoimmune disease called Superior Limbic Keratoconjuctivitis, which is now in remission, but never had any swelling. Best Wishes.

[PollyO in reply to Hidden]

My eye lubrications glands are really swollen and the MRI shows they go WAY back toward my brain. My Oncologist/Hemotolgist just called after looking at that and he says he sees no cancer which I am grateful for. But that deep cavity of fluid cannot be good for my retina I wouldn't think?

Twice doctors I have tried to triangulate have mentioned a rhuemetologist...great...I have PBC, maybe Sojgrens and now arthritis...

I am possitive as heck, up until now that is, but it sounds like there are lots of auto immune effects I don't have so have to be grateful for that.

[PollyO in reply to Hidden]

It is also effecting my breathing so I started an inhaler that is a steroid...helps.

[gwillistexas in reply to PollyO]

Question about steroid inhaler...I had bad upper respiratory infection a year ago December. I was given Qvar 80, steroid inhaler to keep mucous out of my bronchial area. I stopped using it when diagnosed with PBC June 2017. I was afraid of it because it said it can affect the liver. What is your drs guide on that?

[PollyO in reply to gwillistexas]

Well...I have used it off and on for a long time due to seasonal breathing issues...in fact I just stopped using it about the time my eye lids really started swelling. I only just the last few days got back on it because whatever the auto immune is doing to my eyes it is affecting my lungs...I couldn't even roll over in bed without getting short of breath. Much better now on that count.

I think I just need to cut out any stress! Too surgeries back to back might have gotten this started? Along with selling my Mom's house and everyday kinds of things too.

I find walking in the chemical aisle at the grocery store really throws up caution flags from my body. It is probably worse than that inhaler. I did ask my doc about that and my liver and he wasn't concerned. But anything we all throw at that organ is not good. Thanks

[gwillistexas in reply to PollyO]

Thank you 🌸