Hello! Just joined the support group a few days ago. Here is my story

[NatriceRomeo]

Hi everyone! My name is Natrice. I was diagnosed with WG in 1996-1997. I was a teenager living in Australia at the time. My initial symptoms were very vague and it was thought I had a lacrimal gland tumour. Of course it turned out not to be so simple. I was placed on methotrexate & prednisone. I moved to Missouri in 2001. Since then he disease process has progressed & become sometimes difficult to deal with. I stopped responding to methotrexate & was placed on imuran. The imuran was initially terrible and would make me vomit until I got it all out. Drs forced my body to accept imuran with anti emetics & imuran worked well for several years. I then started to have chronic sinus infections that wouldn’t clear up, my joints swelled (“inflammatory arthritis”) & were painful. I have vasculitis induced reynauds. I was placed on cellcept. But cellcept unfortunately never worked. I then went on rituxin last year. My joints are still swollen. I was able to taper off prednisone... for a whole week. I am very lucky however, I do not have lung involvement. My kidney function is good though I have hematuria. Anyways.. that’s my condensed story of the last 20ish years.


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[andrew]

Welcome ex-pat Aussie :) Rituxan gets good reviews. How long have you been on it? Glad you're doing well though, just a pity about the prednisone. Are there any plans to taper off it again? How much are you on?

Thanks for posting your story! Again, welcome. Oh...do you still have an Aussie accent? :)

[mishb]

Hi Natrice and welcome.

Gosh you have been a survivor for such a long time. You are amazing.

It's a shame you are not still in Melbourne. We had a lunch on Monday and 21 people turned up. 12 of them have WG. It was a great afternoon.


Andrew, surely Aussies don't have accents - everyone else does :flapper:

[NatriceRomeo]

Thank you both for your kind words. I actually lived in Wagga Wagga-but that’s only 6 hours or so away from Melbourne. It would have been fab to join you all for lunch mishb! As for your question Andrew-I do not have an Aussie accent. To confuse you just a little more... I’m a military brat. My parents met while my father was on R&R in Oz. They got divorced so I didn’t move to Australia till I was 12. Clear as mud?? Haha. To answer your other question, I have been on Rituxin for a year. It isn’t helping with my joint pain and my ANCA is still positive. Weird. But I do feel better on it.


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[andrew]

Thank you both for your kind words. I actually lived in Wagga Wagga-but that’s only 6 hours or so away from Melbourne. It would have been fab to join you all for lunch mishb! As for your question Andrew-I do not have an Aussie accent. To confuse you just a little more... I’m a military brat. My parents met while my father was on R&R in Oz. They got divorced so I didn’t move to Australia till I was 12. Clear as mud?? Haha. To answer your other question, I have been on Rituxin for a year. It isn’t helping with my joint pain and my ANCA is still positive. Weird. But I do feel better on it.


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Clear. As. Mud. :biggrin1::biggrin1::biggrin1:

Good that you're feeling better but pity about your ANCA and the joints. That has to suck. Hope that can be sorted!

[MikeG-2012]

Oh...do you still have an Aussie accent? :)

Correction: Do you still have the COOL Aussie accent? :tongue1:

[Alysia]

Correction: Do you still have the COOL Aussie accent? :tongue1:

I am afraid that if I will meet for real, one of you, beautiful aussies, I will not be able to understand a word.. :w00t: it happenned to me with a lady from UK, I couldnt understand her....

Welcome to the forum, Natrice. I am glad they put you on rtx eventually. It is the only med that works for me, not including the pred, of course. Pred allways works, isnt it ?

[mishb]

I am afraid that if I will meet for real, one of you, beautiful aussies, I will not be able to understand a word..

Of course you will, Aussies don't have accents, everyone else do :flapper:

[Jaha]

Welcome to the best group of Weg's people ever. I am wishing you all the best with your treatments.