Hello from New Zealand

[devonwrecked]

Hello everyone! I developed my first symptoms of GPA after a marriage breakup - deafness in both ears, nasal congestion and bleeding, and severe muscle pains, all with no evidence of infection. Unfortunately the Australian doctors dropped the ball, treated the symptoms, and left me struggling on for 3 more years before a complete collapse in 2014. I had the usual treatment, but too late to prevent lung and kidney damage. I was able to manage at work for a while but last year I was given an osteoporosis preventative and won another rare medical lottery - spontaneous fracture of the femur. So I packed my bags and came home to NZ where I am STILL waiting to see a specialist. It's all very frustrating as after a failed experiment with mycophenolate for maintaining remission (which I didn't want to try in the first place given the research) I am back on cyclophosphamide. I am mobile, but everything is an effort given my poor lung function and low blood volumes/anemia. I would be particularly interested to hear from any New Zealand members regarding their experiences with the system here.

[annekat]

Welcome to the forum, Devonwrecked! I'm sorry about your delayed diagnosis; mine was almost as long, 2.5 years, and others have gone longer than either of us! I've been lucky enough to avoid kidney involvement, so far, but did have to get lung involvement before anyone thought of GPA. Before that, it was all chalked up to allergies and recurrent sinus and ear infections. Well, I'm not from New Zealand, so can't comment there.... it seems like we might have some NZ members, and we have lots of Aussies. You might check this map: https://www.zeemaps.com/map?group=242717 to see forum members worldwide who have pinned themselves on it. I thought there was a link to this map at the top of every page, but I don't see it now; however it is at the bottom of any post by vdub, one of our moderators. Looking forward to seeing more responses and hearing more from you!

[vdub]

As Anne said, we have a few kiwi's on the forum, but I don't recall any of them as being real active. Lots of aussie's, tho, plus the forum is hosted from Sydney by Andrew.

It took me a long time to be dx'ed, too. I was about 24 mo and every doctor I saw put me on antibiotics and told me I had a sinus infection. We were traveling around the US in our RV at the time, so I saw a half dozen different doctors and got no where. It wasn't until I had brain surgery and they sent a biopsy to mayo that I was finally diagnosed with gpa. I think 24 mo for a dx is about average, but 3 years is a little much.

Why is it taking so long for you to see a specialist? In the meantime, what kind of drugs are you on? Normally, at the stage of the game your at, you would be on pretty high doses of prednisone and some sort of immune suppressant like methotrexate.

[drz]

Sorry to her about your plight. I think generally people are getting diagnosed quicker now than a few years ago. I got diagnosed in 2010 after seeing about a dozen doctors over a two or three year period or more and also had to knock on deaths door before finally getting a diagnosis and correct treatment. Of course I had lot of permanent damage but feel very lucky just to have survived and to improve enough to attain a drug induced remission.

It is difficult to know for certain when Wegs actually begins since it mimics so many other health problems. And it often seems to simmer or smolder for a long time with milder symptoms but then it can start moving quickly to a serious attack that is life threatening. Like, were those sinus infections years ago Wegs or not?

Any good conscientious doctor can consult with a GPA expert although most doctors still seem to call it by the old name of Wegener's. Such free consultation services is listed on the Vasculitis Foundation Website. Have you looked at it? I would encourage you to find a doctor willing to ask for such consultation on your case. Today with electronic communication telemedicine is very good even in the most remote areas. My treating care team consulted with three of the experts listed on that site which I believe contributed greatly to my fortunate survival from Wegs.

[mishb]

Hi devonwrecked and welcome the this forum.

We have already met on the Oz and NZ WG facebook page, but I just wanted to welcome you here as well.

A lot of fantastic information can be found via the search tool at the top of the page.

I hope you get in to see your specialist soon