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Thread: Eye lid ulcerations.. Wegs? RTX? Steroids?

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    Default Eye lid ulcerations.. Wegs? RTX? Steroids?

    The morning after my 2nd infusion (May 5th) I woke with some tenderness in left lower eye lid area. It worsened over the weekend and I visited my Opthamologist the following Tuesday.

    He found me with a small ulceration on my left lower lash line and prescribed preventative Amoxcillan (no sign of infection at that time). He also noticed conjunctive in both eyes seemed 'rough' and gave me a new type of over the counter dry eye drop. Also prescribed Bacitracin ointment for use beneath lower lid and on the ulceration itself.

    There was not much change over the following week, so third infusion took place last Thursday. All seemed to stay the same until this morning, when I noticed the ulceration appears to have grown a bit, and lower eye lid is now red and burning. I will be trying to see Opthamologist tomorrow rather than waiting until Tuesday afternoon.

    My Opthamologist is/was unfamiliar with GPA but has done some study on it now and has already been in contact with my Rheumatologist at OHSU. But really isn't sure what to do, other than treat the symptom.

    Has anyone seen or heard of this type of eye symptom? From my research, Wegs eye issues seem to present as deep muscle issues or optic nerve problems.

    Could it it be the RTX? I see possible side effects include skin/mouth sores.


    regards, and grateful for any advice.

    Karen

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    I have had sores or inflammation on eyelids or near them. I have used ointments and drops from local eye doctors to treat them and they usually got better in a few days. I don't know if they are related to Wegs or not. I also use drops daily for glaucoma and thought the sores might be a reaction to the drops when I miss my eye and get them onto my eyelid or skin near by.

    Generally I view them as similar to the sores that sometimes show in my mouth or tongue. I think these sores like the skin problems are mainly due or a result of having a suppressed immune system. This puts us at risk for many extra issues. I had such problems before my diagnosis of Wegs but then my immune system was also already compromised due to having diabetes for many years but the frequency and types of problems increased after getting Wegs.

    I take acyclovir daily to try reduce or prevent some of these and also use extra mouth rinse PRN which my dentist prescribed when I have sores in my mouth. Same as ointments and drops for sores or inflammation in or near the eyes.
    Last edited by drz; 05-18-2016 at 06:45 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Just a little note: check the dry eye drops. If it contains preservative stuff, dont use it. Go for those in little ampules, for one use only each.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
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    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Thanks for the feedback Drz and Alysia!

    I stopped using bottled eye drops and moved to the single vials a few years ago.. For anyone using a good amount of eye drops, that is an excellent piece of advice. I was amazed what a difference getting rid of the preservatives made!

    My usual Opthamologist is baffled, with my only issue being the small ulceration on the lid.. The eyeball itself is clear and all looks well. The ulceration has gotten a tiny bit bigger, and eye doctor felt it must be a result of the vasculitis. He gave me a steroid ointment to use on the ulceration, bacitracin for beneath lid and continued Augmenton orally trying to keep the nasties away.

    while at my OHSU Rheumatology visit, my doctor brought in a couple other Doctors that have actually seen/ treated Wegener's and at least one had been consulting on my case. The other was an eye specialist with Wegs experience. He didn't feel it was the Wegs, and approved of the new steroid ointment, oral antibiotics, hot packs, ect. Feeling that we are on the right track and with my high steroid use the healing will just take time.

    Also had blood work and a chest X-ray to check the lungs.. Anxious to hear on that X-ray!

    Thanks again,

    Karen

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    For what it's worth, while I'm thinking of it - x-Rays have not been as useful as CT scans for our daughters lung nodules.

    Its probably not not the same thing, but our daughters WG really hits her skin hard. At diagnosis she had sores on her eyelids (and all over too.) in her flares there are serious granulomas on her elbows, and light blemishes you wouldn't think twice about on her face. She is 17. Just FWIW.

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    The same thing started with me and it is was the little tube that drains the tear duct into the sinuses that was clogged. I had to have it surgically re-routed but since then all is good... have them check that too. Good luck. And as far as preservatives.. I can't do flu vaccines or pneumonia vaccines because of preservatives.. I have allergic reaction to them.. I have since ruled out as many preservatives in medication as possible.

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