Hello :)

[dawncelest]

Hi to all just recently firmly diagnosis with Wagners .. i was diagnosed with severe SLE 2 1/2 years ago and relapsing polycondritus and year after that so im definitely not new to being very sick lol.. I've been on several different high dose immunosuppressives including a 6 month round cytoxin chemo therapy at 750 but have only had short lived success with lung function improvement ( lung /airway vasculits calmed down) and no slowing down the progression of my polycondritus. . As of 10/2014 the vasculits starting affecting my mastoid aircell causes some erosion,sclerosis and partially filled with fluid (mastoiditis ). The sinuse issues started with a painful pop in the top outter left of nose. A severe nose bleed follow (never had nose bleeds ) that last at least 10 minutes ,it felt like i was punched:/ since that day i started having severe , pricing left temple "headaches " and then pain and discomfort from the nose bleed never went away. . I've had relapsing mucosal inflammation and or enlarged vasculature with a chronic drip in my left nose too. So with all my symptoms, images and enlarged vessels seen with the naked eye in my nose added to the fact i already have vasculits in my lungs (aging imaging, symptoms ) my rheumatologist, pulmanologist and now ENT all agree i have ANCA negitive Wagners. . Looking forward to connecting with everyone xo

[me2]

My very first symptom 30 some years ago was nose bleeds that wouldn't stop.

Welcome to our merry little band. It sounds like you have quite a unique story. What other immunosupressives have you been on?
Where do you go for your medical care?

What is your favorite kind of music? ha I just wanted to ask one normal type question. You don't have to answer.

[dawncelest]

Thank you for my welcome yeah I have a story alright lol... I've been on methotrexate injt, embrel injt, averia, immuran,benlysta, cellcept, cyclosporine, cytoxin and now starting rituxan on 2/23/15.. i see all of my specialist at the University of Miami Sylvester comprehensive cancer treatment center. . I was referred there to an orthopedic oncologist about 3 1/2 years ago because i had a "random " cystic tumor develop in my left patella behind my knee cap. . Thankfully it was benign but about 10 days before that surgery i development superficial thrombophlebitis in the same leg ... my ortho dr knew then something systemic was definitely brewing and 3 months later i was hospitalized with the first episode with my lungs .. before all this i was a supper successful hairstylist /colorist, super mom and social butterfly lol.. im disability now, i have to use a walker because the polycondritus has made most of the cartilage in all of my large joints to disappear. Im partially dependant on O2 . . Im back on 1500 of cellcept right now and fortunately it really helps keep my airways functional with reduced shortness of breath ,coughing and weezing. I love that your asking normal questions! ! Well i have a endless love for early 80s punk ,new wave and industrial .. being a young adult of the 90s i LOVE grunge! Thankfully my 16 yr old daughter has the same love for this music, her favorite band is The Smiths so im very proud lol..

[me2]

Wow, you have really taken on a full course load. I can relate to that. I have had some of the same treatments and some not.
If not for Rituxan I would probably not still be here. I have maxed out on Cytoxan. I am due for a Rituxan 'tune up' next month. I was taking it before it had approval.

I like your choices in music. I occasionally travel through the town of Aberdeen, WA. The motto of the town is posted as you drive in "Come as you are". Of course this is borrowed from their favorite son Curt Cobain of Nirvana fame. One of my few regrets is that I didn't get to see Nirvana live in some local venue. That would have been so cool.


I'll have to check out the Smiths . Funny I don't know them - its my last name. There's always something new to learn.

Good luck with your Rituxan infusion. I remember how scared I was when I got my first one. Now I just get bored and take lots of things to read and eat. The infusion takes at least 5 hours. Keep us posted on how you do with it.

[annekat]

Welcome, dawncelest. Every story seems to be a little different. We are glad to have you on board, if you have to have Wegener's. This place has been indispensable to me in dealing with the reality of it all. The people here are the best, and you will find info, support, friendship, and a place to rant or vent or tell stories about whatever you want (we also have an off-topic discussion forum). We'd all like to know where you are from, and there is a link to the Weggie members map at top right of page, where you can add your pin, if you'd like. Looking forward to hearing from you on a regular basis!

[mishb]

Hi dawncelest and welcome to the forum.

Wow that is a load of meds that you have tried

I love your way of telling your story............. but I don't like punk

[lag713]

Welcome Dawn! Thank you for sharing your story. I'm glad you have a diagnosis. I'm sure being ANCA-negative delayed that process. It sounds like you're getting good care. I've never been into punk but I like alternative rock thanks to the 90s.

[dawncelest]

Thanks for all my welcomes everyone! ! It's really great to know i have lots of great people to talk to wishing everyone well xoxo

[mrtmeo]

Welcome to the family, Dawn!
Wow, you have been thru a ton and am so sorry you have so much to deal with.
Did you ever have plasma exchange?
Have you had an immunoglobulins test?
I pray that the rituxan works!

Not sure if this would help, but here is a study using IVIG
http://www.ncbi.nlm.nih.gov/pubmed/10663019

[dawncelest]

I have no idea about plasma exchange but it sounds heavy :/ my drs have been so focused on trying to save my cartilage, keep me breathing and keep my blood from clotting so the Wegener’s is a fairly new addition to my cornucopia of autoimmune diseases lol.. my rheumatologist is also a vasculits/lupus specialist .. she's always been very good at explaining medical treatment options and or certain issues that i don't have any options. I will definitely ask her about plasma exchange and immunoglobulin testing when I see her again on the March 3rd. I have my first Rituxan Monday the 23rd at 8am yaaay! I can't even remember the last time I've had to wake up soooo early for an appointment besides surgery. . I totally get its a long infusions plus pre labs and gets all the orders from the pharmacy can take all day but my sick little bones cant get up till at least 10am