Hello from Minnesota

[MrsSchick]

Hello
I was diagnosed in August 2011 after an interesting spring and summer being diagnosed repetitively with a sinus infection. I spent 4 weeks in the hospital with every week bringing a new adventure. I did not take well to cytoxan so I was put on a rituxan 5 year plan (hopefully it will only be 5 years.)
In the last 2 years I have learned that what does not kill you, only makes you stronger!

[annekat]

Welcome, Mrs. Schick! It sounds like you got diagnosed quicker than some of us, after a string of sinus infections. That is a typical story, though certainly not universal, as Wegener's finds many ways to manifest itself and every case is a little different. Sounds like there must have been a lot more going on, if you were in the hospital for 4 weeks! Some of us don't have to go there at all, while others do spend weeks and can be in grave condition before pulling through. We'd like to hear anything about what went on in there that you'd like to share.

I was like you, had many sinus infections, but for a couple of years, along with some ear infections and joint pain. When it went into my lungs in winter of 2011, I got diagnosed and treated with cytoxan, which I was able to tolerate fine, along with prednisone, of course, and that combo cleared up my lungs in short order, while the sinus stuff also improved a lot but drags on due to permanent damage. I lost a good part of my hearing and wear hearing aids. But in general I'm pretty close to being back to a "new normal".

So how are you doing now? We'd love to hear, and this is a great place to ask and share anything, vent and rant, make friends and get support, and even to talk about things not related to the disease. If you have to have Wegener's, you have come to the right place!

[Dirty Don]

Welcome MrsSchick, you're probably a pro by now at this, but if you have questions/answers/sharing/rants...whatever...please share. Someone's always on somewhere in this world! Lots of good people on here to share experiences and info with. Best to you.

[DJS]

Hello
I was diagnosed in August 2011 after an interesting spring and summer being diagnosed repetitively with a sinus infection. I spent 4 weeks in the hospital with every week bringing a new adventure. I did not take well to cytoxan so I was put on a rituxan 5 year plan (hopefully it will only be 5 years.)
In the last 2 years I have learned that what does not kill you, only makes you stronger!

Where in Minnesota are you from and which hospital. It sounds like you have a great treatment plan. Hopefully by now you are off the pred and now getting to the "new normal"

Dennis from Monticello

[Alysia]

Hi,
you sound so positive, so I believe it helps you a lot.
if you have to have WG, you have come to the best place on the globe to be in.
all the best wg-experts in the world are just here, with so much knowledge and experience, and beyond that, with kindness and generosity, and awesome sense of humor.
I love the amazing people here. if you stay enough, you wil also fall in love with this weggie family

[annekat]

What Alysia says above is so true!

[Debbie C]

Hi and welcome to the "family" ! I have never heard of a 5 year plan of rtx. Do you get infusions every year and are you on any other meds?

[Allisonquast]

Hello mrs Schick. Where in mn are you from?
Allison

[windchime]

Hello MrsSchick. Glad you found us, sorry it had to be under these circumstances.

[mishb]

Hi MrsSchick,

I haven't seen you back on, so I thought it was about time that I said welcome..........I know that should bring you back

Seriously though, what everyone, above, has said, is true. This is a wonderful forum to be a member of and I am glad that you finally found us.

A five year plan hey........I would hope that you don't need RTX for as long as 5 years. Possibly you have more symptoms than just your sinuses.

I would love to hear your story - especially each weekly adventure