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Eyelid swelling

Posted , 11 users are following.

shira75032
shira75032

Hi all, new here and in need of help.

I've just been diagnosed with Sjorgen's and my main complaint is eyelid swelling in one of my eyes that acts up every single day from the afternoon until I go to sleep. I've been to 5 eye docs already and they say that besides the dryness my eyes are perfectly healthy (no sign of blepharitis) and had no suggestions for the swelling besides topical steroids which did not help. Eye drops and moisturizing ointments and Protopic have not helped either.

Has anybody found relief for this distressing symptom?

1 like, 48 replies

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  • dre57
    dre57 shira75032

    Posted

    Hi Shira,

    Wondering if you have found some relief from your swelling eyelids... I have inflammation in my lacrimal glands and it has caused dry eyes etc.  Using steroid eyedrops for almost 3 weeks now and it is better... not gone but better.  Wish I knew why this is happening.  I had it years ago and it eventually went away, but something triggered it and I've had it going on for 8 months... 

  • jamie1985
    jamie1985 shira75032

    Posted

    Wondering if you have found a cure or treatment for your eyelid swelling? I have had a swollen left eyelid (top and bottom) for 11.5 months now. I am currently on Protopic for 3 months now, which doesn't seem to be doing anything for me.. And also on Restasis, for my dry eye. I've been on so many different medications and drops, I've lost count. I hope you have found some relief, as I haven't heard of anyone having whatever condition I have sad I need to know there is hope
    • mandy95
      mandy95 jamie1985

      Posted

      Hi Jamie,

      I had this 2 months ago. I went to my opticians who has the hospital Dr in once a week. Made an appointment to see him, and just as I thought no eye infection, but eye extremely dry. He had just come back from a Seminar on Sjorgrens and they recommended the use of Ikervis 1mg drops (Ciclosporin) use every evening before bedtime and my settled within 3 weeks.

      Hope this helps,

      Mandy x

    • shira75032
      shira75032 mandy95

      Posted

      Jamie- What's the difference between Ikervis and Restasis? They're both Cyclosporin. Only difference I detect is the strength: 0.1% vrs. 0.05%.

       

    • shira75032
      shira75032 jamie1985

      Posted

      Hi Jamie and Dre:

      I'm still struggling with this: Protopic and Restasis have not helped me with this either. Numerous eye docs, rheumys and even neurologists have not been able to help.

      What I have discovered:

      1- For me the swelling beneath the eyebrow seems to be from Lacrimal gland inflammation. Putting ice on it usually causes a short lived improvement. I believe systemic meds to treat SJS inflammation will be needed to control this. No supplements have helped either and tried many!

      2- The swelling on the lid itself seems to stem from dilation of the blood vessels. This may be the result of inflammation of the blood vessels from SJS or from some allergic reaction.

      I have noticed I get this in some environments more than in others and suspect it may be related to dust allergies but am not certain.

      Antihistamines seemed to help for awhile and then stopped having an effect. The only one that really still works in Clarinase and that's because it contains a high dose of Pseudoephedrine which is a vasoconstrictor.

      The only other treatment I have found that is foolproof is cosmetic and temporary: Visine eye drops or any other vasoconstrictor will help for a short while. Iopidine eye drops (off label) will in addition even give your eyelids a little lift and last longer than regular vasoconstricting drops.

      You can't use these tricks on a regular basis or they will stop working for you.

      Let me know if anyone finds anything else that helps with this, including actual meds! 

    • shira75032
      shira75032

      Posted

      Sorry, meant Mandy above!
    • shira75032
      shira75032

      Posted

      Another thing: I've found that Aspirin 500mg reduces my eyelid swelling fro about 4 hours. Again, you can't take this on a regular basis at such a high strength as it's a blood thinner and can have other side effects. 
    • jamie1985
      jamie1985 mandy95

      Posted

      I also have no infection, and I do have dry eye and have been taking restasis for my dry eye for 2 months now, alongside the protopic. No change as of yet sad
  • jennifer09136
    jennifer09136 shira75032

    Posted

    Welcome Shira and i hope you find some answers here. Sorry but I have not experienced any eylid swelling, but, when i experience severe dryness or any infections etc the symptoms always increase as the day progresses towards evening. Then it "resets" after sleep and the patter repeats the next day.
  • janet20769
    janet20769 shira75032

    Posted

    Hi Shira,

    I used to have terrible trouble with eye allergies, conjunctivitis and redness and swelling. Ever since I changed to preservative free eye drops, the ones which suit me best are the separate phials of Melophthal, and I've never had a problem with allergic eyes since. 

    • shira75032
      shira75032 janet20769

      Posted

      Thanks for the suggestion Janet, the only eye frops I'm currently taking iis the Restasis.

       

  • janet20769
    janet20769 shira75032

    Posted

    Hi Shira I don't know if Restasis are preservative free. It was a Specialist at Moorfields Hospital, London who said he thought I was allergic to preservatives in the drops - he found lots of pustules under my eyelids and I was getting allergic conjunctivitis regularly. I'm also allergic to preservatives in nasal drops and sprays. 
    • janet20769
      janet20769 shira75032

      Posted

      Hi Shira, I've tried lots of preservative free drops, but can only tolerate Melopthal for some reason - must also be allergic to some ingredients. Hope they never stop making it!
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