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

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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.


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

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