Treating Granulomatosis Polyangiitis (GPA) formerly Wegener's

@bnharrod, Good Morning (It is morning where I live) and Welcome to Mayo Connect. I am not familiar with Wegener's disease, however I have located a discussion where members are sharing their experiences. The discussion mentions treatment with both methotrexate and prednisone, so I want to refer you to it. You just need to click on this link and you will be taken directly to the discussion where you will meet others with this condition.
https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/?orderby=ASC#chv4-comment-stream-header
Here is some information that I have located about Granulomatosis with polyangiitis
https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088
If I can be of any assistance, please let me know. To direct a question or comment to a particular individual, use the @name at the beginning of your message. I am happy that you have joined Connect because you are among others who journey with you. I wish you well.

Hello @bnharrod, I would like to add my welcome along with @rosemarya and others. There is another discussion where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post here:

> Groups > Autoimmune Diseases > GPA granulomatosis with polyangiitis
-- https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/

You might also be interesting in the following patient story.

Diagnosis and Treatment for a Rare Disease Brings Back Trish Byrd’s Hearing and Optimism
-- https://sharing.mayoclinic.org/2017/01/03/diagnosis-and-treatment-for-a-rare-disease-brings-back-trish-byrds-hearing-and-optimism/

Do you have specific questions you are trying to get answered on methotrexate and prednisone treatments or side effects?

Hello I am new to this group and would like to introduce me.
I was diagnosed with GPA (Granulomatosis with Polyangiitis) formally known as Wegeners, July 4th 2022.
I have gone through all treatment options available and have not been successful in stopping the progression of my disease.
I am wondering if there might be other members diagnosed with the same autoimmune disease and what is working for them/what hasn't.

Welcome @dukebluegirl21, You are not alone. There is an older discussion with some active members that you might want to scan through to learn what they have shared.
-- GPA granulomatosis with polyangiitis: https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/

You might also find it helpful to scan through the comments that mention GPA in discussions other than the one above. Here's a link that shows the comments - https://connect.mayoclinic.org/search/comments/?search=GPA

The Vasculitis Foundation has a lot of information on GPA if you haven't already seen it - https://www.vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/.

Have you done any research on available clinical trials?

I’ve been having problems with nose and eyes almost 2 years. I also have lupus but this other my doctor said that if my sinus doctor wouldn’t have recognized it at my surgery Monday, that I would be dead in 1 month ,
So about to start infusion and need advice, earnings anything that’ll help
I’m so scared.

rockinrobin, were you diagnosed with GPA by tissue biopsy. Nasal and sinus symptoms overlap with Lupus and GPA. Cheers to the sinus doctor, but death at one month is a little suspicious.
Will the infusion be Rituxan? https://www.rituxan.com/gpa-mpa.html Steroid?
It's just that you are having the early symptoms of GPA and have been having them for almost two years.

More information 🙏 please

I have an autoimmune disease and have been having almost like an allergic reaction, but not. My nose and eyes feel like they are swelling up. Then it goes away. Is this what you are talking about? Doc says it’s from steroids, thankfully stopped them last week.

Much needed info. I had my first infusion yesterday and went on… got sick to my stomach kinda quick
But about 2 hours ago, I feel like I’ve been punched in the chest. Right between my breasts. Should I be concerned or it this a reaction

@rockinrobin12 If the pain continues, go to the Emergency Room and let the doctors decide. In the meantime, did the doctors or nurses give you any printed material when you left? What oral information did they give you? It’s best to read the manufacturer’’s printed info and see if it’s listed as something you should worry about. It’s best if you don’t drive yourself. Ask spouse, neighbors or ambulance to take you there.
This has happened to me at least 3 times in the past six years. I did everything I should and finally went to the ER via ambulance. I was given a full cardiac workup and then told to make an appointment with the cardiologist on call. I was given every test imaginable and they showed ‘no cardiac dysfunction.’
Let’s hope for the best!