Swelling soft tissue under both eyes. Query Be... - Behçet's UK

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Swelling soft tissue under both eyes. Query Behcets related?

NikD
NikD

Hello, I was diagnosed with Behcets in 2017 following a stroke to my left parietal lobe from which I’m fully recovered. I have recently had a repair to a hole in y heart for a patent PFO which was the source allowing the blood clot to get to my brain. Blood clot caused by Behcets.

I’m taking Azathioprine and this is controlling symptoms however the soft tissue under my eyes has become swollen and sore on several occasions. My Rheumatologist thinks this is unrelated to Behcets and is unable to find another cause. I’m not convinced as at the times this has happened I have either had an active infection or joint pain with fatigue. I also take other medication which is stroke related.

Has anyone had a similar issue, hoping someone can help?

Thanks

13 Replies
oldestnewest

Sorry to hear your story. No helpful advice I’m afraid other than to say it looks more like an allergic reaction? I’ve never known similar in Behcets. Hope you find an answer x

NikD
NikD
in reply to Juliauk10

Thank you for your reply x

I get this too. It’s a,ways linked to a flat. Type of ski. Inflammation I think

NikD
NikD
in reply to sian35

Hi Sian thank you for your reply. Please could you explain what you mean by flat type of ski?

I have swelling under both eyes as well but not as bad as yours. This only happens when I have a flare. My first symptoms are dry eyes. I put drops in them every 2 hours until it goes down. Xx

NikD
NikD
in reply to 2106

This is really interesting to hear as my eyes only swell up if I have an active infection or flare! My rheumatologist said that it isn’t Behcets related however there is a relationship between being unwell and swollen eyes which can’t be ignored. Thanks for your reply interesting to hear how this affects others 😊

Hi NikD

If this were me I would get the periorbital edema checked by a eye specialist to make sure my eyes are all ok.

The following has a few suggestions and advice on treatments etc.

carolinavisioncenter.com/co...

Gillian

NikD
NikD
in reply to gillianTS

Thanks Gillian I have already been seen by a Eye Specialist and there is no signs of Behcets in my eyes. My rheumatologist agreed and said that it is most definitely Behcets related and prescribed steroids which has helped. Thanks

gillianTS
gillianTS
in reply to NikD

Ok NikD only I thought you had said your rheumatologist thought your eye swelling was unrelated to Behcets. I have not come across this before in Behcet's.

Meant to ask did you see the eye specialist whilst you had the swelling, if not it might be worth sending him/her a picture of your eye to see if they have a suggestion to the diagnosis.

NikD
NikD
in reply to gillianTS

Hi Gillian yes I have consulted an eye specialist for this and they have seen the photos. There was no evidence of uveitis at the time of the swelling. I have had other relevant blood tests which has ruled out conditions associated with this which were all negative.

I have since seen my rheumatologist following the first post and she agreed the peri orbital Swelling is Behcets related as this happens when I’m having a flare of my condition although the dr I seen last year said it was not. More laterally she disagreed with that dr due to the timing and history of flares and eye swellings. Hope this makes sense 😀

gillianTS
gillianTS
in reply to NikD

Hi NikD

Yes this definitely makes sense although a rheumatologist simply stating it's because of a Behcet's flare does not provide you with a diagnosis of what is actually physically happening around your eyes and there will be a correct diagnosis for this condition. Like many of the things that happen with flares whether ulcers, gastric issues etc there is generally a diagnosis for each part of Behcet's issues, I have usually had to get these diagnosed by individual specialists generally arranged by my rheumatologist.

Gillian

Hi I also have this problem with my eyes and skin around them. I also get really bad ulcers in my eyes underneath my eyelids and they are so painful.

NikD
NikD
in reply to pete11

Hi Pete I was prescribed steroids by my rheumatologist which has helped with this issue.

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