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View Full Version : Hello from Melbourne :)



danny
11-16-2009, 08:10 PM
Hello everyone. I was diagnosed with Wegners 2 years ago but had sleritis in eyes and joint inflammatory problems for 2 years before that. I was lucky the eye guy I saw put me on Prednisone straight away which I think put me into remission back then without knowing the danger I was in. They did the ANCA test when I 1st got the eye problems but it was negative so they thought I had Rheumatoid Arthritis. 2 years ago I had sinus bloackges, eye problems, blood noses, joint inflammation etc and they redid the ANCA and hey presto - Wegners I am. Have been good for the past 18mths on 30mg methitrixate and even got off the prednisone for a year but just had a flare so back on 15mg of prednisone as well as the methitrixate. Have had AF heart rhythum problems and just started to get tingling and numb toe problems. I am lucky I havent had trackie and nose bridge problems like others and my kidneys are OK. Great to find this forum and hear from other Wegners people. If anyone in Melbourne I would love to meet for a coffee (beer out of question these days unfortunatley with Methitrixate which is a bummer), share experiences etc. Am looking for the Wegners expert in Melb or Aust to get the best treatment moving forward, but looking at other peoples stories looks like my journey hasnt been to tough yet. :)

elephant
11-16-2009, 09:48 PM
Welcome Danny,
So glad you are doing well. Sounds like your on the right track with the right medicines. As you probably know you have to keep on top of this disease and listen to your body. I live in the states, South Carolina. I love coffee. Darn :D

Sangye
11-17-2009, 02:15 AM
Hi Danny,
Welcome to the group! I'm glad they finally diagnosed you properly. It can take awhile for an ANCA to go (+) and some Weggies never do. Yes, yours sounds like a much milder case than many. No lung and no kidney involvement makes it much easier to stay strong and bounce back from the meds, so you should do well.

Do your docs know Wegs can affect the heart? A yearly echocardiogram is routine for Weggies. Heart involvement is silent, so you have to stay on top of it.

I hope Andrew can help you find a good Wegs doc. :)

katwoman
11-17-2009, 05:54 PM
Welcome to the group Danny,
Nice to welcome another aussie to the site! If you're are going to have a coffee anywhere in australia Melbourne is definately the coffee capital, have friends down there and get down there every now again...loved to meet another weggie next time I am down that way.
kat

timbo vic aust
11-29-2009, 12:01 AM
hi danny i too am in melbourne if you look at new introductions you will see my storey timbo vic aust and i would love to meet up for a coffee at some stage and talk to not only share experiences but i have an excellent professor at rheaumatology talk soon mate oh and if your ever down this way katwomen would love coffee and a chat too . thanks guys Tim

Doug
12-01-2009, 01:32 AM
Danny- Welcome to the site. Australia is well-represented here, and I see you already have a coffee date and some good advice on a weggie specialist! Way to go! I went six years before I met another weggie.