First Symptom

[maria garcia]

What was your first symptom that your doctor made you check to see if you have an Auto Immune disorder? I feel alot of my daughters symptoms are so close to allergies and we all have them here. When to know? Also if you have this desease when are you put on med?

[renidrag]

Everyones symptoms are different. Probably the most common would be joint pain and sinus problems. I had joint pain but also lung pain. Some folks suffer from what Docs initially think is a sinus infection for a long time. I suffered from joint pain and I mean really bad joint pain for probably a year at least. When my cough would not go away, after a few months I ended up at a pulmonologist office on a Saturday morning. He tried to make me have TB but when that was ruled out, two bronchoscopies and bingo. If you are having recurring symptons, please have them checked out. Wegs can be masked. What are your daughters symptoms? Meds would start immediately upon positive diagnosis.

[LilyPony]

My first symptom was my eye swollen shut but I think I am similar to a lot of people on here that an autoimmune disorder was pretty much the LAST thing that crossed anybody's mind. In my case, it was a good year of demanding a biopsy of the mass protruding from above my eye and dozens of doctors. Finally got a biopsy which came back as intense vasculitis, most likely wegs. And even then (and to this date) it is a constant struggle to get anyone to accept that it is anything other than stubbornly untreatable allergies - including the rheums! I am ANCA-negative though, which "proves" to the inexperienced docs that it's not wegs.

[Sangye]

Maria, there are a lot of autoimmune diseases and the initial symptoms can be just about anything. Even for Wegs the list is very long. I had only increasingly severe joint pain and weakness for about 8 months.

[ScreaminMeanie]

Initial disease onset I had only skin lesions. Most recent flare had skin lesions and joint pain. It's frustrating - it actually took me longer to be diagnosed with the 2nd flare than with the initial disease onset because the symptoms are so random!

[Chris G]

My earliest symptoms would have been years of sinusitis and sinus infections. But the symptoms that lead to ANCA testing, and eventual diagnosis, would by all of my eye symptoms, eyelid swelling, episcleritis, scleritis, keratitis.

[Jack]

Mine started with a headache due to sinus problems. It was not until I was suffering from multiple organ failure that I was diagnosed and treatment started the same day.

[maria garcia]

My earliest symptoms would have been years of sinusitis and sinus infections. But the symptoms that lead to ANCA testing, and eventual diagnosis, would by all of my eye symptoms, eyelid swelling, episcleritis, scleritis, keratitis.

Chris that means you have lived with Wegners for a longer time with just sinus infections and eye swelling. Did they put you right away on meds? Have you had any other symptons. Your symptoms are just like my daughter.

[maria garcia]

Do they put you on meds right away? If you have Positive Anca but no diagnosis like my daughter says. WE are waiting for test.

[NicShaf]

What was your first symptom that your doctor made you check to see if you have an Auto Immune disorder? I feel alot of my daughters symptoms are so close to allergies and we all have them here. When to know? Also if you have this desease when are you put on med?

My first symptoms were like a common cold; runny nose, fever, fatigue...but they didn't go away for months. My symptoms started in Sept2010. I was hospitalized for a couple days in December after I saw my PCP for a follow up on pneumonia, and they saw cavitary lesions in my lung x-ray. They weren't sure if it was a fungus or cancer, but they were keeping me until they could figure it out. Wegs was on the list of about 5 things that could cause lesions like that.
I had a lung and sinus biopsy done, but both came back inconclusive. My Pulmonary doc and Rheumy both explained that with Wegs, you can't look at one thing, you have to look at the big picture of symptoms to get a diagnosis.
They wanted me on meds the first day out of the hospital. I was told I could hold off for about a week so that I could meet with a fertility specialist and make some decision on treatment from there. I started Prednisone a couple days out of the hospital, and Cytoxan about 1.5 weeks after being released from the hospital.