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Thread: I love this disease!

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    Cool I love this disease!

    Went for a checkup with my Ophthalmologist yesterday and came home with Steroid Drops. Seems my flare I was dealing with over the weekend extended to my eyes. I went blind for 7 days causing my initial admission to the Hospital prior to diagnosis. Got my vision back but guess it's always lurking in the background; ready to take it away again. I have regular checkups with my Ophthalmologist because of this.

    Anybody else have eye issues from their Wegeners?

    I also found out I have substantial bone mass loss due to the Prednisone. For those of you on Pred who aren't taking it; get on Calcium and D3 NOW!

    GunnyL

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    I have Non-Ischemic Central Retinal Vein Occlusion in my right eye but the top docs say it is not related to Wegs.
    Phil Berggren, dx 2003

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    In June, the white part of my eye was inflamed in both eyes. It's called uvitis, I believe. Anyway, I went to the opthamologist, she saw the inflammation and gave me steroid drops. My rheumatologist (the one I don't use anymore) told me that it's absolutely not related to Wegener's. He said it was most likely because my eyes were dry and just irritated.
    Huh.
    I've never had that problem in 33 years of life, glad it's happening now and "unrelated" even though I'm in mid-diagnosis of a condition that could cause that. Whatever. So glad he's not my doc anymore.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    My Ophthalmologist and Rheumatologist will tell you that mine are related. Also if you are on long term prednisone use then you should be getting the pressure checked in your eyes regularly as it can affect that. Also, Wegeners can affect the inside of the eyes as well. I am gifted to have some very good doctors who stay on top of it. I was in for a pressure check when she found this, I attributed the redness to being tired.

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    As well as the Calcichew D3 I'm also prescribed alfacalcidol.
    The calcichew is the only tablet I don't take religiously. I didn't mind them for 10 years or so, now they make me really nauseous. It only lasts for a minute so I really am been an idiot.

    I've had issues with my eyes but nothing too serious. In the dark bright objects have an extra ghost image, not to the side, but in front and above the real image. this happens in both eyes independantly, which my Dr says is impossible (i.e. if I cover one eye I still get this extra ghost duplicate). I had this before WG diagnosed so prob not connected.
    In the last 3 years my night vision has lessened. Dr seemed quite concerned, but never got to bottom of it (no idea if WG connected).
    I get bouts of very dry sore eyes. My mother has Sjogrens disease (also auto-immune) and my symptoms are the same but mine lasted for 3 years and has been almost normal for the last 3.

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    I had scleritis early on and needed treatment for that. I have glaucoma and take drops for that for many years. I developed cataracts and had surgery for that two years after Wegs hit me.

    I was given calcium (two different kinds) along with vitamin D right away and have been on it since Wegs. I still have some bone loss so have a bone scan every year or two.

    Pred messes with your vision and dry eyes seem endemic to Wegs. I use Refresh eye drops for dryness.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Weg the gift that keeps on giving...

    Is just calcium enough? I was prescribed Alendronat, a medicine that should help the bones which I take once a week. The note that came with the meds is pretty iffy though, you have to take it first thing in the morning at the same day of the week and can drink exactly 2dl of water (even says to avoid sparkling water) and are not allowed to lie down for 30 minutes or take any other drugs or food prior to it or 30 min after. Some have told they get nauseous of it, but I haven't noticed anything. Wasn't told to eat any D-vitamin, but I have been taking some C, D and Omega 3 in addition to the calcium and stomach pills they prescribed to alleviate the effects of the Pred. Been on 60-80mg of daily pred for almost 1.5 months. Gonna ask the doc tomorrow if I could cut the dosage down a bit.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    I think you need the Vitamin D to absorb or use the calcium. Ask your pharmacist since both are available over the counter with out any prescription.
    Last edited by drz; 09-13-2013 at 01:47 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default I have the same thing

    Quote Originally Posted by gunnyl View Post
    Went for a checkup with my Ophthalmologist yesterday and came home with Steroid Drops. Seems my flare I was dealing with over the weekend extended to my eyes. I went blind for 7 days causing my initial admission to the Hospital prior to diagnosis. Got my vision back but guess it's always lurking in the background; ready to take it away again. I have regular checkups with my Ophthalmologist because of this.

    Anybody else have eye issues from their Wegeners?

    I also found out I have substantial bone mass loss due to the Prednisone. For those of you on Pred who aren't taking it; get on Calcium and D3 NOW!

    GunnyL
    Funny, I have the same thing. My eyes have been operated on 4 times and I am going Monday for another operation. My eyes are always bothering me and my vision comes and goes. I was blind for a year until they did a transplant from a doner in the end. I just saw the ex rays of my chest area and all of my ribs are much thinner than they were and the Doc told me it was from the Pred My eyes will continue to be bad because the WG eats the membrane around the eye and under the lids and they have to keep replacing it or the eye lid sticks to the eye ball. I use gels and drops and liquid tears but nothing works. As far as the bone goes this is the first time I have hear of it. There is usually some kind of ear problem associated and off balance issues.Next week I go to Madrid to see a handful of specialists, I hope I come home with a bunch of answers.
    My blog: Animo

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    Barbara, the bone issue is due to long term Pred use, not WG.
    drz is correct about D3. Having masses of calcium is only half the issue, you need the D3 to absorb the calcium.
    Out of the 19 years since being diagnosed, I've been on pred for about 17 years. It's been a few years since my last scan, but it showed an approximate "bone age" of mid 40's. So it looks like (with me at least) for every year I've been on Pred, my bones have aged by about 80% quicker.
    Don't know how relevant those statistics are to anyone as everyone is one different doses and for different periods of time.

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