Five Things to Know about Granulomatosis with polyangiitis (GPA)

0:00
0:39 Introducing Dr. Jason Springer.
2:04 Manifestation / Symptoms of GPA.
5:10 A treatment medical team for GPA.
6:59 General treatment (induction and maintenance phases)
7:55 Specific medications.
11:10 What phase of research about GPA should be getting the most attention? Is it an
earlier diagnosis? Is it achieving and maintaining remission? Is it about steroid
reduction?
12:13 What are a few of the current studies that you think are most promising for GPA?
13:45 Is it common to be initially diagnosed with one of the other types of vasculitis, but
then have it re-classified to GPA?
Five Things to Know About Granulomatosis with polyangiitis (GPA)
Recorded June 2024

[@carh8069]

I've had gpa for over 16 years now , I take 5mg prednisolone every other day .My fatigue is really bad , im.in my 70s

[@vasculitisfoundation]

We are so sorry to hear that you are still experiencing such overwhelming fatigue, but happy to hear you have been able to stay in remission with low dose prednisolone. The VF has some wonderful virtual support groups where you can connect with other people who understand the struggle of living with vasculitis. You can find out more about them here www.vasculitisfoundation.org/living-well/find-support/

[@4u2nv847]

I feel your pain. I was diagnosed with GPA in 2019 and im tired of being used as an experiment..

[@firstcomment2801]

I was drowning in my own blood in the lungs. Never had blood in urine. Muscle soreness, YES. Felt like my arms were tore off. My bottom looked like a spotted leopard.

[@vasculitisfoundation]

We are so sorry to hear about the horrible symptoms you experienced but glad you received an accurate diagnosis so that you got the proper treatment. If you have not already connected with some of the other resources the Vasculitis Foundation offers such as in-person conferences, virtual support groups, and live webinars you may find them helpful. Many people mention that meeting other people with vasculitis on the support groups or at in-person conferences has been especially helpful and validating. You can find out more on our website www.vasculitisfoundation.org/

[@ishitamajumdar5277]

When do we say patient is in remission?

[@vasculitisfoundation]

Here is a webinar we did on remission that covers this question, and other issues related to flares and remission. Thank you. kzbin.info/www/bejne/pKuvYXanasydm7s

[@ishitamajumdar5277]

How can know its organ damage or flare? If there is traces of blood in urine, does that mean kidney damage??

[@vasculitisfoundation]

Blood in the urine is an important symptom to discuss with your doctor who will probably want to run more tests to determine what is causing the blood in your urine. There are different lab tests which can give your doctor a good idea of how well your kidneys are working so if you are worried that you might have kidney damage you should make an appointment as soon as possible. Flare is a term used to describe when the inflammation from vasculitis returns after being under control. During a flare, the inflammation can cause new damage to blood vessels and possibly major organs so it is important to find out if you are having a flare so you can begin treatment to control the inflammation. Your doctor may use imaging tests, lab work, and your own description of your symptoms to help determine if you are having a vasculitis flare. You may find these resources helpful: Preventing Progressive Kidney Disease in Vasculitis: kzbin.info/www/bejne/e4PEfZqGnqdqfM0 Vasculitis and the Kidneys: kzbin.info/www/bejne/aKmuZ3uImrlseqc You can also contact our Patient Support Coordinator if you have additional questions and she can steer you to resources to help answer your questions. www.vasculitisfoundation.org/connect/

[@firstcomment2801]

1st thing is you don't want this disease. Red spots below the waist and nasal discharge. Fatigue was my major problem. So tired.

[@4u2nv847]

I was diagnosed with Granulomatosis with polyangiitis in 2019, and it's been a horrible disease to deal with and cope with. I get infusions every 6 months, Rituxin and I've been receiving these infusions since 2020 and I was doing OK with it but now here in 2024 I feel the Rituxin isn't working so well. What can I do or better yet what can my Dr. do for me, I was methotrexate, prednisone, Rituxin, im still fighting this illness. Someone please if you have updated info please let me know 🙏

[@vasculitisfoundation]

We are so sorry to hear that you feel like your treatment isn't working. Here is a link to our webpage with treatment guidelines for GPA in both plain language versions and in the original format that was written for healthcare providers. www.vasculitisfoundation.org/anca-associated-vasculitis-gpa-mpa-egpa-guidelines/ You can find out more information about GPA (including treatments) here www.vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/ We also have online (Zoom) support groups www.vasculitisfoundation.org/living-well/find-support/ and an online chat community where you can connect with others who have GPA www.inspire.com/groups/vasculitis-voices/ Don't hesitate to reach out to us with other questions www.vasculitisfoundation.org/connect/