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Any experiences with swelling around the eyes?

Posted , 5 users are following.

eileen49269
eileen49269

Hello

For about 2 weeks I've had swelling and purplish coloring under my eyes. The usual dark circles one might get under the eyes look as if they are swollen and now extend to to the outer corner of the eye.

Went to the eye doctor and he performed an exam and said he couldn't find any problems and that it was probably due to the Prednisone that I'm still on.

Woke up this morning with swelling above my eyes. When my eyes are open, I can't see my upper lids or eyelashes because of the swelling. So far there is no discoloration of the upper eye area.

Anyone else ever have this type of swelling and did you find out what was causing it? I have never had it, even at my sickest. The face bloating due to Prednisone went away when my Prednisone was lowered to 10 mg/week and that was some time ago.

Background: I'm 54 and was diagnosed in Dec '16 with Wegener's. Last two blood test results have come back negative for the first time for Vasculitis. Am still on 4 mg of Prednisone a day, which will probably be increased back up to 5 mg because of inflammation numbers are too high. Take 10 mg Methotrexate a week, and two Acthar injections a week. After two infusions of Rituxan last Sept, the plan is to do one infusion every six months while vasculitis numbers are still good. 

0 likes, 11 replies

11 Replies

  • linda38899
    linda38899 eileen49269

    Posted

    Yes, I have had swollen eyes and still get them . When I work alot I am under more stress I will have puffy eyes and darker circles. I am 56. The weekend prior to my diagnosis my entire face was so swollen that the sungllasses I wore left hug indentations on my face. I will also notice more swelling dependent on how much salt in my food and how much I have kept myself hydrated. A fine balance is hard to maintain.
    • eileen49269
      eileen49269 linda38899

      Posted

      Thanks very much. This makes me feel better knowing that others have the swelling and it's just that and not a sign that something else is wrong. I'll try to pay close attention to my water and salt intake and note what happens. Thanks again for responding!

  • clare88367
    clare88367 eileen49269

    Posted

    Hello Eileen,

    This sounds rather distressing.  I certainly get puffy eyes and face with prednisolone especially when I've slept on my front and in the morning I'm extra puffed, but if this usually subsides on a low dose for you I would expect that to be unlikely.

    I would go back to the doctor, I think, or a different one if you have that kind of practice.  Perhaps the vasculitis is not being controlled as much as it should, despite the blood test results.  (Didn't know there was a blood test for this????)  How's your blood pressure? Have you had your kidney and liver function tested?

    Clare.

    • eileen49269
      eileen49269 clare88367

      Posted

      Hi Claire,

      Thanks a lot for your reply. I'm on blood pressure medication to keep my blood pressure under control and I get blood tests every three weeks, including liver and kidney function. As of the last blood test, my liver is back to normal for the first time since I started on medication over a year ago and my kidney test results continue to be normal.

      I thought it was strange as well since my bloated face went away months ago when my prednisone was lowered to 10 mg. It's now 4 mg. I plan to report the additional swelling to the eye doctor on Monday and I'll see what they say. 

      I heard from a woman on another Vasculitis forum who said she gets swollen around the eyes as well and it's water retention. She said it gets worse if she's not properly hydrated and/or her salt intake has been too high. I hope that this is all that's wrong with me as well but I'm just nervous about inadvertently letting something more serious go unchecked.

       

    • clare88367
      clare88367 eileen49269

      Posted

      Sounds like you're on it.  But what a pain that we have to do this, eh?

      All I can add is that if it's not working for us then we need to keep asking the doctors for something more or something different.  

    • linda38899
      linda38899 eileen49269

      Posted

      Eileen,

      I was wondering how you did after seeing your doctor about your swollen eyes? It is very upsetting that we have so many issues with this disease and the fact that we don't have a known cure and there are so many variables that you have to really be vigilant and have a good support team especially a good doctor that listens and doesn't just take the status quo position. Anxious to hear

    • eileen49269
      eileen49269 linda38899

      Posted

      Hi Linda,

      Thanks for asking. I called the doctor's office to tell them about the additional swelling ,etc., and they said they had me come in the next morning. The doctor examined me and counted out any more common eye problems that might be causing it and repeated his original thoughts about the the cause. He said if I was still worried, he could refer me to a lid specialist (who knew such a speciality existed?). I told him my concerns were about vasculitis and possibly inflamed blood vessels. He said he was doubtful about that but offered again to send me to the specialist. I asked him to hold the referral until after my next blood test results are (appt with rheumatologist is next week). If my numbers are still good (negative), I guess I'll go with the water retention explanation.

      I like this eye doctor -- he has an autoimmune disease himself and is very empathetic and had done research on vasculitis before my first appt so that he was knew what to look for and what to tell me to look out for.

    • linda38899
      linda38899 eileen49269

      Posted

      Eileen,

      I am so glad you saw the doctor and he is empathetic and knowledgeable. My eye doctor as I like him for his skillset his bedside manner not so much. In fact he argued with me when I first saw him after my diagnosis and basically grilled me to explain the evidence that  determined my GCA. He had just listened to a webinar and it was on GCA and the information was that it was found in older women and patients , in their 70's so younger than 70 was not a concern.

      Well I proved that theory wrong.I was seeing the eye doctor every 6 months to keep an eye on the inflammation. One of the challenges I feel with this disease is it is very tricky. When I feel bad, runny eyes, puffy face, stomach pains, achey muscles- I go to the lab and my numbers are great-  When I feel good, no real symptoms, and have labs drawn they are not as good as I think they should be. Hard to figure out , it is an elusive disease that means we have no choice but to be very vigilant and attentive to our own bodies warnings. Thank you for sharing and have a good week-

    • tricia30777
      tricia30777 eileen49269

      Posted

      I, too, have experienced the swelling in the eyes.  I tried to insert a picture to no avail.

      Every time I have a flare up, I will have one or both eyes swell.

      I was told it is directly related to the vasculitis.  My hives start on my head and gravity takes over and the swelling loves to settle in my face.  How attractive!

      My dr is talking about the chemo drug.  

      Happy with results still?  

    • eileen49269
      eileen49269 tricia30777

      Posted

      Hello tricia30777

      Thanks so much for sharing your experiences. 

      When I went back to the Rheumatologist, she confirmed that the swelling above my eyes was from the Prednisone and is referred to as "hooded eyes."  So i guess as long as I'm on Prednisone, I'll have this above my eyes. 

      Sometime later, I happened to see a largish picture of a 75-year old politician in the news who happened to have the same swelling under her eyes that I have. My eye doctor had said the changes to the under eyes sometimes happens in older women who aren't necessarily sick. I couldn't recall ever seeing it before so was a little skeptical. But then I happened to the see this photo and realized that other women do have have this. I'm only in my early 50s so maybe the Prednisone makes it a little worse or maybe it's just something I'm naturally prone to. So even though the swelling doesn't look good, I'm relieved that it doesn't appear to be due to illness. 

      Good luck to you with the new drug!

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