Videos

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2:18 PMR is not always PMR
3:05 2022 ACR / EULAR classification GCA
3:38 HALO Count Diagnostics
4:55 Ultra high frequency imaging for GCA
5:31 Diagnostic Work Up Giant cell arteritis
7:56 Prednisone and GCA / PMR
10:29 PMR treatment studies summary
12:34 TOPAZIA Trial: Treatment of GCA with ultra-short steroids and Tocilizumab
14:28 titAIN Study
16:30 Session Summary
17:28 Q: Tell us again about the key highlights from EULAR about PMR and GCA
18:22 Q: What does a Delphi Exercise mean?
19:29 Q: Can you tell us what you heard about precision medicine and use of AI in imaging at EULAR?

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5:42 Airway disease in GPA: Laryngeal Stenosis, Subglottic Stenosis, Bronchial Stenosis
7:14 Why does GPA occur?
8:51 Bacteria (Staph Aureus) Are Associated With Airway Disease Relapse.
9:34 How Do You Treat Airway Obstruction in GPA?
14:17 Representative Case of Airway Obstruction in GPA
18:00 Airway Stents
19:51 Airway Stents Can Migrate
20:25 Airway Treatment Considerations
23:02 Q: With EGPA-AAV, what is the significance of a decreased DLCO? How is it determined which pathway could be? causing the decreased DLCO -if it is not Pulmonary hypertension?
24:32 Q: Can you review the symptoms of airway disease?
25:52 Q: Can disease also cause swallowing difficulties with food and liquids?
26:56 Q: Do you see patients who have GPA under control according to blood work but have airway restriction in the bronchial tube?
28:26 Q: Is an increase in presentation of thick mucus an indication of airway narrowing that should be concerning?
29:22 Q: If someone has MPA could this be part of their disease
31:17 Q: Does Rituxin, which I take for my GPA help prevent these breathing issues?
32:26 Q: How many airway subglottic stretches can be done? I've had two and suspect that I may be due for another.
33:33 Q: How soon can subglottic stenosis come back after endoscopic treatment?
34:12 Q: Would a speech therapist help with breathing issues?
35:49 Q: When considering having these symptoms checked out, who is the best person to try to be seen? Currently, I am being followed by a rheumatologist. Is there a different specialist to seek support for these specific concerns?
36:56 Q: Is there a relation to an increased production of mucus (i.e., coughing and clearing throat more frequently) post SGS dilation?
38:10 Q: Can you tell the difference between inflammation and an infection vs GPA?

August 2025

Visit the Vasculitis Foundation (www.vasculitisfoundation.org).

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2:09 GCA: What to measure if the drug is working
4:05 Demographics of patients
4:24 12 key items to help measure how patients are responding to treatment for GCA
7:45 GCA Fast Track Clinics
17:05 More tools to help diagnose GCA. Understanding the cause of vision loss.
20:23 Possible use of AI technology in diagnosing GCA with ultrasound
22:11 Upadacitinib (UPA) once daily pill for GCA. Is UPA safe compared to steroids?
27:32 Preliminary study: Can Avacopan be used to treat GCA? Much more work to be done.

EULAR stands for the European League Against Rheumatism. It is an organization dedicated to enhancing the treatment, prevention, and research of rheumatic and musculoskeletal diseases. EULAR brings together healthcare professionals, researchers, and patients to advance clinical care, scientific research, and education in rheumatology across Europe and beyond. It is known for developing guidelines, hosting annual congresses, and supporting initiatives like outcome measures for diseases such as rheumatoid arthritis.

Learn more about Giant Cell Arteritis. Visit the Vasculitis Foundation webpage at: https://vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/

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1:12 Can TAVNEOS® be used in children?
2:04 How does TAVNEOS® help patients to achieve and sustain remission?
3:26 Is TAVNEOS® appropriate for patients with liver disease or a kidney transplant?
4:26 Concerning TAVNEOS® vs. Rituximab for Maintenance---In sustained remission, which drug is typically tapered first—and why?
5:24 Does TAVNEOS® need to be tapered, or can it be stopped abruptly?
6:23 Can patients resume TAVNEOS® if they flare after stopping?
7:12 Was prednisone used together with TAVNEOS® in clinical trials?
8:55 What is the status of the ongoing long-term (5-year) trial? Can patients enroll?
10:21 Are there specific lab tests to track if TAVNEOS® is “working”?
11:28 We got several questions from patients related to affordability and insurance
coverage. Do you have any comments about this issue?

Avacopan (Tavneos®) Q&A
July 2025

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3:58 Key features of EGPA
5:40 A few words about eosinophils
9:52 Management of EGPA before eosinophil-targeting TX
14:52 What is Benralizumab?
15:58 MANDARA Study Design
20:00 Asthma remission: an exploratory analysis
24:11 Heatmap of Glucocorticoid dose over time
25:14 What does BENRALIZUMAB do?
26:37 Are there side effects?
29:03 Among patients with EGPA who is eligible?
30:32 The future of benralizumab: ongoing studies
31:09 Take-home messages
33:38 Q: Is it common to switch between Fasenra® and other biologics in the course of
EGPA?
35:44 Q: Could you please clarify what eosinophils are?
37:00 Q: How quickly do patients typically see improvement in symptoms after starting
Fasenra®?
41:12 Q: What are the side effects? Is joint pain common?
45:41 Q: How does a patient's ANCA status affect the decision to use Fasenra®?
48:21 Q: Are there any long-term safety concerns with Fasenra® use?
50:11 Q: Is Fasenra® safe to use during pregnancy or breastfeeding?
52:13 Q: Is the drug approved in Belgium? Could you explain how that works?

Note:
Fasenra® is a prescription medicine used to treat people 18 years and older with EGPA. It is not known if Fasenra®is safe and effective in children with EGPA under 18 years of age. Fasenra® is injected under your skin (subcutaneously) one time every 4 weeks for EGPA.

What you need to know about Benralizumab (Fasenra®) for treating EGPA, June 2025

Download the presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/06/What-you-need-to-know-about-Benralmizumab-24JUN2025.pdf

Visit the Vasculitis Foundation (www.vasculitisfoundation.org).

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2:37 What is Sarilumab?
5:53 What does Sarilumab do?
6:20 Possible side effects and risks.
7:49 Lab tests before starting this drug.
8:17 Who can take this drug?
9:05 What have we learned about Sarilumab since it was approved?
10:41 Interesting facts about Sarilumab.
12:59 Q: What happens if Sarilumab raises your LDL and HDL?
14:17 Remember: Sarilumab is the only FDA-approved drug for PMR.

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2:05 What is IVIG?
4:34 What does IVIG do?
6:20 Possible side effects and risks.
7:26 Who can be treated with IVIG?
8:47 What have we learned about IVIG since we started using it for Kawasaki disease?
11:10 What is the dosing frequency for IVIG?
13:19 Why hasn’t the FDA approved IVIG for other forms of vasculitis?
16:05 Was IVIG used during COVID?

What you need to know about IVIG Therapy
July 2025

Visit the Vasculitis Foundation (www.vasculitisfoundation.org).

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2.22 What is Apremilast?
4:54 What does Apremilast do?
5:38 Apremilast dosing.
6:05 Possible side effects.
6:43 Lab tests before starting the medication.
7:22 Who can take this drug?
7:48 What have we learned about Apremilast since it was approved?
10:40 Learn more about Apremilast from these resources.
11:27 Q: Is there a reason it’s only used for Behcet's Syndrome?
12:01 Q: Do you take this medication for very long?

What you need to know about Apremilast (Otezla®)
July 2025

Give us your feedback on this VF webinar
https://www.surveymonkey.com/r/7R8DFZV

Visit the Vasculitis Foundation (www.vasculitisfoundation.org).

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Do you know what palliative care is and how it might benefit people with vasculitis? In this virtual presentation with Michael Goodblatt, MD & Kimberly Brown Rechner, RN, you’ll learn about the medical specialty called palliative care, and how it can give you an extra level of support and improve your quality of life.

Additional Resources
Palliative Care: A State Resource Guide https://nashp.org/palliative-care-a-state-resource-guide/
Palliative Care Provider Directory https://getpalliativecare.org/provider-directory/
Getpalliativecare.org https://getpalliativecare.org/

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1:45 What is tocilizumab?
3:46 The GiACTA Study
6:48 2021 ACR/VF guideline for management
7:08 Studies in Takayasu
8:56 2021 ACR/VF Guidelines
9:19 Tocilizumab specifics
10:33 Possible side effects and risks
12:13 Who should use caution with this medication
12:53 What has been learned about tocilizumab

What you need to know about Actemra
June 2025

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2:54 What is avacopan?
3:40 Background and development.
6:30 Key Study.
8:37 What does avacopan do?
9:48 Possible side effects and risks.
11:36 Drug interactions.
13:05 Patient selection considerations.
14:49 Monitoring and follow-up.
15:50 What have we learned about avocopan since 2021?
18:28 Pros and cons
19:53 Learn more about avacopan from these resources.
20:38 Q: Can you explain induction therapy?
22:37 Q: Can you talk about this drug for pediatrics?
23:22 Q: Talk about balancing kidney vs liver when taking avacopan.
25:28 Q: Is avacopan effective with an EGPA diagnosis?
26:21 Q: Is avacopan ever used in place of prednisone for the treatment of GCA?
26:53 Q: How far are they into the Stage 4 five-year trial to understand long-term implications?
28:13 Q: When you are first diagnosed, are there some patients who start with a drug like Rituximab and just avacopan, or does everyone get some steroids?
28:43 Q: With liver toxicity being an issue would taking a liquid liver supplement be suggested?
29:11 Q: When trying to do a reeducation off of Rituximab and avacopan would you try to taper off Rituximab or avacopan first?
29:56 Q: How can I enroll in the Phase Four trial?
30:30 Q: In the Advocate Trial, were the patients matched on their intolerance to steroids?
31:03 Q: Can you clarify whether avacopan was used in conjunction with prednisone in the trials?
33:10 Q: If you’ve lost one of your own kidneys and have a transplanted kidney is avacopan indicated along with it?
34:09 Q: The drug makes me feel so much better, but the cost factor is so out of reach.
36:09 Q: Is there a blood test to see if avacopan is making a difference?
37:09 Q: What does it mean when you say, active severe disease?
37:56 Q: Do we have data from those who have been on avacopan for a year?
38:43 Q: What should I do if I miss a dose of avacopan?
39:02 Q: Can you just stop cold turkey with taking avacopan?
40:42 Q: What is a flare?

What you need to know about Avacopan
June 2023

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In this engaging webinar, six vasculitis patients share valuable tips and perspectives on navigating life with vasculitis. They explore how they handle fatigue, the mental stress of living with a chronic illness, tips for dealing with health insurance companies, and more . . .
In this webinar a reference is made to another webinar on Fatigue and Vasculitis, you can watch that webinar here https://youtu.be/-ClJ55o_O9g

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2:26 What is osteoporosis?
4:12 Hip fracture: The Devastating Toll.
6:06 The impact of steroids.
6:55 How do you test for osteoporosis?
8:09 Reasons that Medicare will pay for DXA Bone Density Testing.
9:56 What’s a T-score?
12:23 Your bone density and choices.
19:36 Regular weight-bearing exercise.
23:08 Bone nutrition: Beyond calcium and vitamin D.
25:40 Lab tests to look at secondary causes of bone loss.
27:16 FDA-approved osteoporosis medications.
30:19 What should I do first?
31:18 What if I already have osteoporosis?
33:26 Q: How prevalent is AVN with vasculitis?
35:05 Q: What are the risks of inhaled steroids?
36:07 Q: I fractured my pelvis. Does the doctor have any suggestions on what I can do?
38:20 Q: How often should I get the DEXA test?
39:35 Q: Do Rituxan or immunosuppressants affect our bone loss?
40:23 Q: What do you do to lessen the risk of bone loss in young people?

Bone Loss and Vasculitis
May 2025

Download the slides from this presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/05/OP-Bone-and-steroids-Vasculitis-Foundation-webinar-002.pdf

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1:55 The FDA has approved IVIG for which type of vasculitis?:
3:17 The FDA approved Avacopan® for the treatment of which types of vasculitis?

5:38 Which of the following two types of vasculitis are ANCA-associated vasculitis (AAV)?

7:25 Large vessels are affected in in these types of vasculitis.

10:10 Giant Cell Arteritis (GCA) is most closely associated with what other type of vasculitis?

11:36 People from the Mediterranean, the Middle East and Asia are more likely to get this type of vasculitis.

13:52 May is known for what awareness campaigns?

14:13 May is Vasculitis Awareness Month (VAM). Here’s how you can connect to VAM events and activities through the VF.

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May is Vasculitis Awareness Month! Joshua Roberts' remarkable journey embodies the transformative power of connections through the Vasculitis Foundation's support programs and educational resources.

Learn more about Vasculitis Awareness Month and ways you can help create life-changing connections by visiting https://www.vasculitisfoundation.org/living-well/raise-awareness/!

Help us connect more patients to expert care, peer support, and vital resources by donating today at https://vasculitisfoundation.org/ways-to-give/make-a-donation/.

Thank you to our #VAM2025 sponsors: Amgen and AstraZeneca

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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