GPA granulomatosis with polyangiitis

Hello @rphillips85,

Welcome to Connect. I’m sorry to learn about your son's diagnosis. We are glad you’ve joined our community. 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 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

I am tagging our moderator Kanaaz @kanaazpereira to see if we should move your post to the following discussion which will give your post more visibility.

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

@rphillips85 thank you for being an advocate for your son. The more you and your son can learn about his health condition, the better you can work with your doctors on a treatment plan. Have his doctors come up with any treatment plans that have helped?

John

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?

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.

Hello!

I was diagnosed with GPA a year ago and I found this online support group: https://www.wegeners-granulomatosis.com/forum/. There are members the same age as your son. There are also local support groups affiliated with the Vasculitis Foundation either currently in your area or you could start one. I have found both of these to be tremendously helpful as I navigate my “new normal.”

Anna

Hello @annao175, I see that are a new poster but have been a member for awhile and I would like welcome you to Connect. Thank you for sharing the link and that it has helped you navigate your new normal.

Are you able to share a little more how you've been helped? I'm sure it would help other members here on Connect.

John

@rphillips85 hi! I was 21 when I was diagnosed with GPA, same with me, I was an athlete!

@rphillips85 sorry I should mention I am only 23 right now so I too was diagnosed very young

How old are you now? Where are you from? And, what meds are you on?

Hi! I just turned 23, I’m from Buckeye AZ and for GPA I am on prednisone and azathioprine (imuran) 150 mg. Since I was so strongly immunosuppressed when I was first diagnosed, I caught Valley Fever and it turned into valley fever meningitis which is an uncureable meningitis so I am on a lot of medication for that as well!

I was diagnosed with GPA in 2007. I am currently 70 and live near Dallas
Texas. Initially I was diagnosed by a very good rheumatologist who started me on methotrexate while he referred me to a pulmonologist for blood in the lungs. I was also exhibiting blood in the urine and general weakness with coughing. The pulmonologist immediately hospitalized me for testing and substituted cytoxin and prednisone for the methotrexate (massive doses of each). I received a blood transfusion and when stabilized was released. It turns out the kidney damage also affected red blood cell production. For one year I received quarterly injections of Procrit to force RBC production until the kidneys recovered sufficiently. I stayed on cytoxin for a year when I was transitioned to 2 grams a day of Mycophenylate and 20mg per day of prednisone. Over the years my urologist has slowly decreased the dosage of each while monitoring, primarily my ANCA levels. The ANCA readings have been below detectable levels since release from the hospital. Currently I take 250 mg of Mycophenylate each day and 2.5 mg of prednisone every other day. In January I am going to cease taking the Mycophenylate and in 30 days have lab work done to check the ANCA levels. I have had no adverse reactions to any meds except some hair loss on the cytoxin (it later came back and somewhat darker). While on cytoxin I developed pneumocystis pneumonia (compromised bacterial immune system). That was nasty and I was on Smz/TMP for years, until the mycophenylate dosage was significantly reduced.