Possible Sjogerns/ deffinetely chemosis

[ajohnson19]

My first occurrence with chemosis happened just a few months ago. When I woke up my eye way swollen shut, I couldn't open my eyelids, a few hours later the swelling started to decrease so I could open my eye; however my vision was temporarily gone for about 6 hours before I could distorted images. It took an additional four days for all of the swelling to subside. My vision when I'm not experiencing eye problems is 20/15 (better than 20/20) when chemosis occurs it's usually around 20/80, sometimes worse. Prior to this event I had no history or chemosis, or sjogerns. After seeing 3 ophthalmologists they had me on and off lotamax (steroid eye drops). I'm currently back on it to prevent the severe flare ups. I also take a steroid topical cream for my eyelids which quickly decreases any swelling. These medications helps prevent major flare up but the pain is still present and I still get blurred vision even without the swelling.

My pcp did additional tests which identified that I have a high ANA 1:160. My rheumatologist performed additional lab work, everything came back normal except the ANA was the same and I have low vitamin D which I contribute to pcos. Both doctors believe I have sjogerns  syndrome.  I was under the impression sjogerns is just a dry eye problem. Is chemosos a common symptom with sjogern's? I'm seeing ophthalmologist number four tomorrow, hopefully I'll have better luck.

I was just curious do is it common to experience such intense pain even my eye isn't swollen and is chemosis is a common symptom of sjogerns?

Thanks for your help in advance.

[Joe S.]

Welcome to the forum. Can you explain a little more about what "chemosos" is? I am not finding English links to its description.

[Narablueeyes]

http://www.nlm.nih.gov/medlineplus/ency/article/003038.htm

[A66eyroad]

Welcome, AJ!

I have never heard of chemosis, but I'm pretty new to this whole Sjogren's thing.

Have you seen a rheumatologist yet? If not, you might think about that as being your next step.

[Joe S.]

Thank you Nara. Then, YES this could be part of Sjogren's. Like some of the other side effects of this illness.

[Scottietottie]

Hi Ajohnson 

Welcome to Sjogren's world. I don't think chemosis is very common with Sjogren's because it's the first time i've seen it mentioned here in 6 years. That, however, does not mean it is not connected. I simply don't know. SjS is a very individual disease and we all seem to be affected slightly differently by it with common factors like dryness.

Sjogren's is a lot more than a dry eye problem as you will find if you browse some of the posts in this forum.

I hope you find the site useful.

Take care - Scottie 

[olmphoto2]

I didn't know the word for it.  Yes I have it, it's the worse in the morming usually.  As the swelling goes down on the surface of the whites of my eyes, the outer corner surfaces (where it is more noticable to begin with) tend to 'deflate' a bit and show wrinkling.  That uncomfortable too.

[olmphoto2]

Here's another pic:

[A66eyroad]

Yowee!

[olmphoto2]

There are much worse pics that come up for google images for chemosis.  I usually don't get too much worse than the second pic and general just have the swelling.  Notice the near absence of lashes?  Mine are  mess and eyebrows are worse, outer 2/3rds not there.
I feel for ya ajohnson19...sounds like you had a bad episode.

[Bucky]

Ajohnson - hi and welcome to the forum.   

There's a lot of helpful information here - I hope you find it useful to you on your Sjogren's journey.

Bucky

[Bucky]

Mary Ann - ouch, that looks painful.   

Notice the near absence of lashes?  Mine are  mess and eyebrows are worse, outer 2/3rds not there.

Eyebrow loss is a classic symptom of hypothyroidism.  Birth control pills can also change the hormonal balance enough to cause eyebrow loss.

I have hypothyroidism and I too, am missing part of my eyebrows.  If I look close, there is very, very fine hair there - but, it's not like the rest of my eyebrow.      

Bucky

[Patze]

Hi Ajohnson,

Let me also welcome you to the SJS World and family!  Please continue to look around the board as there are just scads of topics to be had by using the search engine located in the upper right hand side of this page.

If you don't find what you're looking for, don't be shy and post away as there is usually someone about that just might be able to help.

Take care of yourself -

Patze

[Narablueeyes]

Here's another pic:

OOOOHHHH!!!  I've had that!!!!!!  Holy cow!!!!  I didn't know it was called that and mine wasn't that bad and was many moons ago.  ACK!!

[Meld256]

Hi AJohnson,

Let me also welcome you to Sjogren's World!   

I haven't heard of chemosis either, but it certainly looks as painful as it must feel.  I'm glad that you're under the care of an opthamologist and hope this can be kept under control.
As mentioned before, we all have different symptoms with Sjogren's, although many of us have some problems with either eyes, mouth, or both.

Did you have any better luck with the last optho. you just saw?  Just curious if they had done any testing for dryness.
Please keep us posted.  Feel welcome to ask anything at all. We look forward to hearing more from you.
Take care,
Melinda