I love this disease!

[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

[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

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.

[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.