Video Library

Watch this informative, insightful webinar exploring the impact of urticarial vasculitis (UV), a rare condition where small blood vessels in the skin become inflamed, leading to persistent, hive-like rashes that may burn or sting, often accompanied by systemic symptoms like joint pain or fatigue.

This live webinar brings together two patients living with UV, sharing their personal experiences, alongside Dr. Galen Foulke, a renowned vasculitis specialist.

0:00
2:43 Poll on impact of UV
7:34 Roundtable question: What are some of the biggest challenges you face with UV?
7:48 Jessica’s response.
9:14 Julie’s response.
13:47 What management strategies have you tried and how have they impacted your core quality of life?
18:02: What would your advice be to someone who has just been diagnosed with UV?
26:53: Q: I’ve read that UV can be part of a neoplastic syndrome for cancer. How much of a risk is this, and does it increase with autoantibodies also associated with neoplastic syndromes? Should we be having additional screenings or tests?
29:23: Q: The majority of my outbreaks are caused by medications. Due to this, I am “allergic” to many medications. Is this common to have most, if not all, outbreaks due to reactions to medications?
32:55 Q: Do you have advice on how to manage a work life or career when you are dealing with UV?
35:50 Q: My doctor diagnosed me with HUVS because I have lupus, so he said there is probably multiorgan involvement. However, I question if that is true based on that. Can that statement be made or do the complement levels have to be tested to diagnose HUVS after being diagnosed with UV?
40:04 Q: Can vaccinations like flu or COVID cause UV flare-ups?
43:35 Q: Do you have experience with prescribing Tacrolimus ointment?
45:01 Q: . Have you seen or do you believe GLP-1s can trigger and flare up? 2) Does microdosing of GLP-1s help decrease flare symptoms?
47:22 Q: Do you know of any research currently going on that could potentially help UV patients?
48:42 Q: Any last words of advice from Jessica and Julia?
51:58 Learn about VF Resources, including Find-A-Doctor

Visit the Vasculitis Foundation website to find more resources on Urticarial Vasculitis: https://vasculitisfoundation.org/education/vasculitis-types/urticarial-vasculitis/

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Treatment Access Resources: https://vasculitisfoundation.org/wp-content/uploads/2025/10/Treatment-Access-Resources_10.2025.pdf

https://vasculitisfoundation.org/wp-content/uploads/2025/10/Overcoming-Barriers-to-Vasculitis-Treatment_1008225_FINAL.pdf

Living with vasculitis can bring challenges—not just with symptoms, but with getting the treatments you need. Victory over Vasculitis patient ambassadors, Jennifer Gordon and Molly McManus, share practical strategies patients can use to advocate for care and overcome barriers such as:
Appealing insurance denials and strengthening your case for coverage
Finding and using copay assistance programs (and navigating copay accumulators)
Lowering treatment costs through proven tips and resources
Together, we’ll explore how to break down barriers and make care more accessible for people living with vasculitis.

0:00
6:25 Navigating insurance. The system is broken.
9:33 First steps when a claim is denied.
12:58 Work closely with your doctor.
15:55 Insurance drug tiers.
17:57 Co-pay assistance.
21:42 HELP Copays Act. Get involved.
22:30 Co-pay accumulators.
23:00 Treatment access assistance.
28:22 Medication shortages.
29:40 Seeing specialists.
30:46 Avoiding Pre-Authorization Pitfalls
31:45 Tips for saving on out-patient tests.

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0:00
2:34 The audience poll on remission
6:49 Oncology definition of remission
10:29 Remission examples
14:55 Considerations for remission
15:44 Monitoring for relapse
24:16 Monitoring for disease complications
27:59 Monitoring for treatment toxicity/complications
33:12 Summary
34:27 Newly diagnosed. How do you know when you are in remission?
37:19 How long does remission usually last?
39:53 What imaging is routinely used for GCA?
41:51 What cancer tests are needed if you were on Cyclophosphamide?
43:31 What should I know about why my liver function test is trending upward when I’m in remission?
46:30 Where is research at with B-Cell therapy?
47:29 Any thoughts on having hip surgery when I’m on prednisone?
51:02 For young children who have GPA (age 14) , have you taken the child off all medications when in remission? Do you usually keep them on all medications for longer (Rituximab and Azathioprine )? Wasn’t sure if it’s different for children.
52:04 How can you call it remission if the disease is still requiring immunosuppressives or biologics to keep it under control?
55:20 GPA - once you stop treatment (Rituximab), what is the most common interval for relapse of remission?
56:40 Is there any research being done on how to prolong remission?

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0:00
2:42 Results of webinar survey of pulmonary involvement.
5:24 Structure and vessels of the lungs.
8:20 Our diagnostic tools.
10:50 Asthma.
17:16 Airway management: Mucosal Inflammation.
22:31 Lung nodules and cavities.
25:09 Interstitial lung disease.
27:59 Diffuse Alveolar Hemorrhage.
29:55 Vascular stenoses & aneurysms.
32:00 Potpourri
33:18 Complications of treatment.
35:09 Key points.
36:00 Are pulmonary embolisms a potential result/symptom of GPA?
37:28 If you have part of your lung removed, can it regenerate?
38:30 In Dr. Fussner's career, how often has she seen or known a person needing a lung transplant due to vasculitis?
39:22 If you have minimal lung scarring from bleeding in the lungs, what is the long-term effect of this scarring?
40:44 Is a bronchoscopy painful?
42:06 Has non-tuberculosis been a common diagnosis?
42:49 Would you recommend a biopsy if imaging picks up a ground-glass nodule?
44:48 How much of a factor does a prior history of smoking play in treating pulmonary issues in vasculitis?
46:28 How long would vasculitis have to be untreated for some of these pulmonary complications, such as scarring?
47:39 Does Rituxan relieve inflammation in lung tissue and/or improve breathing

View Dr. Fussner's webinar slide presentation here. https://shorturl.fm/NoYFi

Watch this informative overview led by Dr. Lynn Fussner on vasculitis and its impact on the lungs (the pulmonary system). Vasculitis is a condition where your blood vessels become inflamed, which can affect various parts of the body, including the lungs. This can lead to breathing issues and other complications.

Visit the Vasculitis Foundation to learn about our other resources at www.vasculitisfoundation.org.

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0:00
3:36 How has fatigue affected you physically?
11:46 How has fatigue affected you mentally?
20:50 How have you learned to cope and deal with the fatigue?
35:50 Q: Is there a link between chronic pain and fatigue?
36:33 Q: How has fatigue affected your relationship with friends and family?
41:24 Q: Can Actemra cause fatigue?
41 :59 Q : Can lung damage cause fatigue ?
43 :30 Q : How do patients manage to work and have a career with the fatigue?
53:53 Q: Can Rituximab contribute to fatigue?
54:58 Q: What gives you hope to go on despite the struggle with fatigue and pain from vasculitis?

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0:00
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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0:00
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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0:00
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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0:00
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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0:00
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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0:00
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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0:00
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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0:00
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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