hi from MA

[D.B.]

hello everyone. thank you for letting me introduce myself and participating in this community. i have already learned a few ythings since arriving here and its greatly appreciated.
i'm Dina. D.B. is just acronymn ( lol like we need anymore of those) for nickname given to me by awesome friend who i met around the same time as i started presenting symptoms (2005). i was diagnosed w GPA a few weeks ago at mass general hospital boston. currently o60 mg prednisone aiting for insurance to approve rtx infusions. this disease is so exhausting and challenging. new really i feel like its full time job res earching and educating myself. so grateful to find SO much vvaluable info here.
in october i decided to consult w facial plastic surgeon to reconstruct my nose. its very messed up and besides being upsetting to look at i am getting nervous its just going to collapse. surgeon says ok if i get rheumy clearance, which i didnt think would b an issue. but no! new rheumy sats i do have Wegs even though old rheumy said i didnt in 2010. so more waiting. TG i am patient by nature. well i am when not hopped up on prednisone and manic moody pod person lolc
latest labs have pANCA around 1,600 (mpo). reading that wegs more % for cANCA w pr3. also now finding blood in urine. we are "keeping an eye on it"
having dealt w health issues for such a while without knowing whats wrong w me has changed me in some ways, but i still am outgoing and love to laugh. total foodie and hate when i go for long periods of time not being able to taste food. ben really trying to step it up in the nutritional area w lots of new recipes.
just a couple more things to know about me...major NE/boston sports fan. ya WS champs Brady & Bruins! and i LOVE my pampered cat. hes been there for me when i was feeling my worst and would just lay next to me and make things a litle better. i

[Alysia]

Hi Dina,
you finally did it and write your introduction. welcome to the forum

if your nose is a saddle nose, I think it is undoubtly wg.
how old are you ? are you only on pred ?
if you think that rtx can help you and you dont have the way to pay for it, there was here a link considering such cases. if you want, i will search where we wrote it.
good luck and continue to write.

[D.B.]

hi Alysia. yup got intro done lol now i guess will work on my story. its long. i am 46. prednisone, fosamax, bactrim. thank u for offer to research but hopeful for insurance approval so hold off on that. i did 1 year on plaquinel, then mtx for a few to control arthritis. wegs was considered but biopsy was inconclusive. i was up front w drs about prior use of recreational drugs fearing i had made myself sick but most drs agreed it was not source of what was going on w nasal destruction. its been difficult dealing w med professionals who labeled me and put in a "box" anc made it more difficult to get diagnosed.
did i read that you are clinical physcologist?

[Alysia]

Hi Dina,
yes, I work as clinical psychologist. Alysia is my weggie name. I don't want my patients to know about me.
I had 2 biopsies from the nose. both were false negative. I def have wg. so don't built on biopsies.
I hope you can get the rtx. It is helping me like a miracle. no med stopped deterioraion I had but rtx.
take care and continue writing.

[annekat]

Welcome to the forum, Dina. It is really the best place to be for anyone with WG... you will get a ton of support, info, friendship, and a place to vent, where no one will mind if you tell your story in a lot of detail. I don't know how I would live without it. I know I would feel a lot more alone and confused and would know very little about WG and its treatment. Reading the experiences of others can be very enlightening, and there is always someone there to address whatever concern you have. Good luck with the RTX, and keep us updated.

[D.B.]

Welcome to the forum, Dina. It is really the best place to be for anyone with WG... you will get a ton of support, info, friendship, and a place to vent, where no one will mind if you tell your story in a lot of detail. I don't know how I would live without it. I know I would feel a lot more alone and confused and would know very little about WG and its treatment. Reading the experiences of others can be very enlightening, and there is always someone there to address whatever concern you have. Good luck with the RTX, and keep us updated.

hi annekat. beautiful state of Wa. are thosr blackberries in your puc? i make a lovely scallop dish w blackberries i have read alot so far and yes so much great firsthand knowledge here. been fortunate in a way til now w no renal involvement but finding blood in urine scaring me. cant share too much w BF cause it mskes me too sad to see him worry so much.

[D.B.]

im analytical chemist so its been hard trying to figure out this whacky disease which is far from exact science. false pos, cANCA vs pANCA. very encouraged though by the prospect of rtx. good to hear its working for you.