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! :smile1:

[mishb]

Hi dawncelest and welcome to the forum.

Wow that is a load of meds that you have tried :crying:

I love your way of telling your story............. but I don't like punk :tongue1:

[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. :wink1:

[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 ;)

[mrtmeo]

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 ;)

I hear ya with the time. I made my mom's appointments for her rituxan infusions for 11am. That was the earliest because they all went home at 4:30pm. The first infusion was the longest because they have to monitor everything to get the flow rate right. They gave my mom tylenol, benadryl and dexamethasone. The first time took about 6 hrs and after that, it took around 3-4 hours.
I have heard many folks find some symptom relief in as little as right after the 2nd infusion.

[LisaMac]

Welcome Dawn, I know you'll find amazing information and great support here. This is a wonderful, caring bunch and I feel so fortunate to have found them!

[dawncelest]

Thank you :) im very impressed with my warm welcome! !xoxo

[Jayne 14]

Welcome dawncelest
Great help & advice here
And as a Brit total respect to your daughter for The Smiths !!!!!!!


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[kimberley]

G'day all,

I have just stumbled upon this forum. I am from Sydney, Australia. and i have no idea how to start a new post or if i posted to the correct post.. very new with these types of forums :)

I don't suffer from Wegener's but my brother-in-law does and has been fighting this for almost 3 years now. This is the second time he is fighting this disease. The first time he had this disease i think he was 14 and when he had this disease then it affected all his joints and he had nose bleeds, he is now 36 and this time it has affected his sinuses and lungs. i have been talking to my sister (it is her hubby that is sick). the reason i am on here is because i am very curious to find out from other sufferers what side effects from all the drugs and everything that you have been told to take. my brother in law's (BIL) anchor was 6-8 for 3-4 months and now it has gone back up to 14. i'm not sure if we use the same terms as you guys but i am just curius. My BIL has had one of his lungs half collapsed and has been advised he has extreme emphysyma but has never smoked in his life (neither does my sister). he had to have a emergency trachiotomy done (thankfully that has since been removed) he is having dialatation done every month to help with his breathing, and his nose cavity disintegrated (i think that is the word).

I hope this is not the wrong thing to write. i am just trying to get my head around what is actually happening to him as it breaks my heart to see him like this. especially as he used to be a big runner and never smoked. at the moment i feel his overall mentality is stronger then his body, and it worries me as that can only last for so long. he has 3 young kids. 7, 5 and 3.(he got sick not long after his son was born.)

thanks for listening.

[annekat]

Hi, Kimberly, and welcome to the forum. Joining it is a great way to get a lot of questions answered and to help your BIL. You might want to post this under New Member Introductions, accessed from the main Forum page, link in upper left, so as to start your own thread and thereby get noticed a little more than here in Dawn's thread. I know the forum can be confusing to navigate at first but ask for help if you need it. I don't know how to move a post except by copying what you wrote and pasting it into a new thread. That would be easier than re-writing the whole thing. Everyone's case is a little different and we would need to know what meds he is taking to comment on that. He's a lucky guy to have you in his corner. BTW, there are several Aussies on here and you will get lots of special support from some of them, as soon as they see you on here. I look forward to hearing more about your BIL and how he is doing! Feel free to ask anything anytime or to rant and vent if you need to. We really do care about fellow WG sufferers.