Hi, I'm Matt.

[mattm]

Hello, i'm Matt. born in Plymouth, U.K. Currently living in Germany (for work purposes only). Before i was diagnosed with W.G. i loved astrophotography, playing guitar, going to the gym, writing poetry & interests in science and generally anything that sparks the imagination. I was diagnosed with W.G. in July 2022, and it's hungry appetite has taken all of the above from me and 90 percent of septum. Aggressive bastard. Looking to get some info and talk to people to see how we live with this, whilst we still can! Btw, i am a positive person. Nice to meet you all.
I would love to start talking with other people so we can relate and discuss this hard time. This is really new to me. Its really hitting me. Hard. So, if you are open and would like to chat. Please reach out. There is a firm grip with a good heart who will grab you and listen. Namaste.

[gunnyl]

Welcome aboard Matt


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[mattm]

Thanks man. Respect.

[Pete]

Hi @mattm, and welcome to the club nobody wants to join.

What is your current treatment regimen? Are your symptoms abating at all? Where are you located in Germany? (I was stationed at Kitzingen am Main near Würzburg in the late 60s.) Do you have access to the British National Health Service? They have some renowned vasculitis docs at Addenbrooke’s Hospital near Cambridge (I think).

My current treatment regimen is 500 mg of rituximab twice a year. I was diagnosed fairly quickly, which minimized the damage the disease can do. I started with cytoxan and high dose prednisone. Progressed to methotrexate before transitioning to rituximab in 2014. I lead a reasonably active life for a 76 yo.

Let us know how you’re progressing. Good luck!!

[John S]

Hi Matt,
By the time that GPA was finally diagnosed, I had given up playing guitar, ukulele and singing. My radio control airplanes were gathering dust. I stopped running a company that I had founded. I anticipated death within a year, possibly by my own hand.
‘A great rheumatologist at Cleveland Clinic finally diagnosed Wegeners and got me on a Rituximab treatment every 6 months.
At this point, I get 500 mg twice a year and don’t take any Prednisone. All my hobbies have returned. Interest in life is stronger than it ever was before.

I hope that your recovery goes as well.