Wegener's granulomatosis

Posted by pamroe @pamroe, Apr 6, 2017

I have recently been diagnosed with granulomatosis. It is in my sinuses. I will start infusions of Rituximab in May. It would be so helpful to hear about others' experiences with this disease and with the treatment. How soon might symptoms be relieved? How did you feel after the infusions and how long did the side effects last? etc TIA

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

jewel8888 | @jewel8888 | Apr 6, 2017

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

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 6, 2017

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.

carolyn999 | @carolyn999 | Jul 9, 2022

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

csp | @csp | Jan 2 8:49pm

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.