Wegener's granulomatosis

Im so sorry, i had an infection like you describe in my sinus last december and it was painful. Majic mouthwash really helped heal the mouth sore on my top gum when i went thru it. It healed quickly with azithromyacin. What did they use to diagnose your infection? The sinus gave me a black eye overnight and i couldnt eat.. Hopefully you will heal this fast too. Take care and get some rest.
Julie

Hello @pamroe,

Welcome to Connect. I'm sorry to learn about your diagnoses, and we're so glad you've joined our community.
As you probably know, granulomatosis with polyangiitis, formerly called Wegener's granulomatosis, falls in a group of blood vessel disorders called vasculitis. Here is some information from Mayo Clinic:http://mayocl.in/23sbZcI

I sincerely encourage you to read Mayo Clinic patient Trish Byrd's story, about her journey with this condition; you can view it here: http://mayocl.in/2oewSsF
Let me also introduce you to @bobsconnect @kecaj @sodonnell @peggyj4411 @ccorrconro @kecaj @mswanda @emmur16 who, I'm sure will return with some more insight for you.
You can view their messages here: Looking for any food links regarding Vasculitis - Wegeners disease, http://mayocl.in/2oKd6pD

@pamroe, what symptoms did you have that led to this diagnosis? We look forward to getting to know you better.

Yes I have great results from Rituxan ..it took 4 x. IV ,,1,000 ut at a time .
4,000 for first treatments it took 3 1/2 months to kick in ..I didn’t think it was working it put me into remission with 10mg of Prednisone ..
then I have 1 treatment 500 ut every 3-6 months depending how I feel ..
So far it’s helped a lot ..but sometimes I have a bad day too

My mother was diagnosed with Wegeners and Kidney failure almost 9 years ago. They (or it) has taken a great toll on her and it seems she has several doctor appointments all year round. I am trying to be educated on the statement that if her kidney function continues to decline, they would not offer dialysis because it may make her condition worse. She is 74 and I don't believe to be healthy enough or a candidate for a kidney transplant.
Anything you can offer or suggest would be appreciated.

Believe it or not, you are very lucky to just have it in your sinuses! It started there, went quickly to my lungs and kidneys before I was even diagnosed after 4 months and losing 50 lbs. After Rituxan treatments I became stable and after a year I was at stage 3b. That was in 2020. Now in 2025 I have it in my urethra (surgery last year) my skin (psoriasis) and now I have stroke-like incidents because it is in the small blood vessels of my brain. I have infusions every 4 months, do next to nothing because I am so exhausted, and have lost another 20 lbs. I am now 74 and my life is completely upside down. Good luck to anyone who is doing better than I am!!!

Dialysis may be her only option. I believe 70 is the cut off age for transplants.

@mkt517 I’m going to ask fellow mentor @gingerw if she would comment on your post. She is currently on peritoneal dialysis, but a transplant is not out of the picture.

@becsbuddy @mkt517 @csp
I notice that @csp has not been active here since the end of February. As to kidney failure/ dialysis/transplant, there are many factors to consider. While I am on peritoneal dialysis, I recently received word that I may be considered for transplant evaluation at the young age of 71. Different transplant centers have different criteria for potential kidney recipients, and it bears looking into. Overall health, lifestyle, compliancy to handling a transplant effectively [including medications], mental health evaluation, caregiver accessibility, are all taken into account.

Some people opt to not have a transplant, for various reasons. For those who choose to explore their chance at a transplant, it can be a lengthy process, certainly more than a month or two, just for evaluation and placement on the list! Alternatively, some choose to pursue a living donor from family or friend.
Ginger