I love this disease!

[gunnyl]

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

[pberggren1]

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

[NikkiNicole]

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.

[gunnyl]

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.

[gilders]

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.

[drz]

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.

[Wegetarian]

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.

[drz]

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.

[Barbara N]

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.

[gilders]

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.

[Wegetarian]

gliders, how much Pred are you on, and is it a daily dose?

[gilders]

At the moment I am on the least medication that I have been on in the last 19 years. Currently I'm not taking any medication to treat WG directly (i.e. no chemo, pred, azathioprine, etc). The first time I came off pred I only went a fortnight before relapse. Then second time I came off pred I managed 2 months before a relapse. The third time I lasted 6 months and I've now been off it for approx 2 years.
There is a strong chance that I'm at the start of a relapse at the moment. But at least the trend seems to be I'm lasting longer off pred before a relapse.
I guess when I said 17 out of the 19 years I've been on Pred, it should have been 16years and 3-4 months rather than 17 years.
My Pred always starts as a 1000mg IV dose, then I'm on it for years. If results are looking good/stable then it fairly quickly gets reduced to 5-10mg/day. At this point it is usually decreased VERY slowly over a 24 months period until I'm off it completely.

[Alysia]

Hi,
when my wg was more active, I had red eyes. I went to 4 eyes doc, one of them even very experinced in AI illnesses, and all of them said it is not related to wg.
BUT - my wg doc said it is. and after the rtx started to work, the redness almost disapeared. prob it was wg.

[Alysia]

I am going Monday for another operation.
Next week I go to Madrid to see a handful of specialists, I hope I come home with a bunch of answers.

Hi Barbara, good luck in your operation and counseling in Madrid :hug2:

[Barbara N]

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.
I must have been diagnosed with dry eye syndrome by at least 15 ophthalmologist it turned out my cornea had been destroyed.So much for tears and gels and drops etc. You really have to shop around until you find someone you feel comfortable with.

[Barbara N]

Hi Barbara, good luck in your operation and counseling in Madrid :hug2:

Thanks Alysia. I will carry your spirit of healing with me. Take care of yourself.

[Debbie C]

I'm confused (which isn't unusal ) but is D-3 the same as vit D ? And when I was told by my ent that my calcium level was a little high and that I was going into renal failure so my kidney dr. told me to stop talking Vit D.But when he saw my results he said I was fine. I don't take calcium pills,but I drink Silk milk that has 50% more calcium in it than reg. milk also o.j. and other calcium products. Sooo....I do this for my bones but can it cause renal failure and what does stop taking Vit. D have to do with the calcium.:w00t:

[Debbie C]

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.

I was prescribed that too and found it to be too much of a pain in the ass to take ! Had to take it so long before food and any other drugs and couldn't lay down for 1/2 hr after taking. It's also in the box with my other meds I found I could do without. I think if you eat the right food and drink plenty of water and juices ...your good.

[Wegetarian]

Well since its known that Pred makes your bones weaker I will certainly be taking anything that will prevent me from getting osteoporosis. I heard some people had issues, like stomach pain, or something when taking that drug. Haven't noticed anything so I'll take it as long as the doc thinks its needed. Nice though that I'm only taking half the amount of Pred I took a month ago.

[Meredith]

Redness in one eye is the way I recognize I am having a flare (this has occured at least 4 times since I was diagnosed with Weg's approx. 8 years ago). Went to one eye doctor first time it happened when it had just started getting red thinking I only had an eye infection and they misdiagnosed (I was wearing contacts at the time and no longer doing that). Next morning when it was redder I went immediately to my Weg doctor and he immediately started me on higher preds and called another eye clinic to have them checked. Now I go to the eye doctor then the Weg doctor the same day to take care of it. If the Weg doctor ups the Pred's then we do not use pred. drops in the eye.

[Barbara N]

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.

I am allergic to fish and a lot of these vitamins that <I should take contain fish oil and I have to be careful and read the instructions carefully first.