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suska (@suska)

GPA granulomatosis with polyangiitis

Autoimmune Diseases | Last Active: Mar 18, 2022 | Replies (44)

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Hello @rphillips85,

I am truly sorry to learn about your son's struggles; as a parent, I can only imagine how difficult this must be for you.
As @johnbishop suggested, I moved your discussion and combined it with this existing discussion so that you can meet @suska @cpierce101604q @mikedurham34 @jjtaylor95 @tomr; I'm certain they will join us and share their insights and experiences with granulomatosis with polyangiitis (Wegener's granulomatosis).
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Even though this condition is rare, and most often affects people between 40 and 60 years of age, it can occur at any age. Here is a published study that you might wish to view:
– Long-term remission in pediatric Wegener granulomatosis following allo-SCT after reduced-intensity conditioning https://www.nature.com/articles/bmt2010126

@rphillips85, may I also ask if it has affected only the lungs for your son? What treatment options has he been given?

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Replies to "Hello @rphillips85, I am truly sorry to learn about your son's struggles; as a parent, I..."

So far only the lungs. Each time we go to the hospital they do a thorough exam on his muscles to make sure they have not been affected by this. He stays pretty active. He takes Methotrexate once a week, we did the injections for a year but for some reason those made him really sick. He started on the 10 tablets a week this year and has been doing well on those until a couple of weeks ago and was sick again the day after.