Video Library

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Access the guidebook referenced in this webinar as well as additional helpful resources on movement with vasculitis on the physical movement page of the Vasculitis Foundation website
https://vasculitisfoundation.org/living-well/wellness-movement/

Living with pain and stiffness can be challenging, especially when we want to stay active and independent. This informative and supportive presentation is designed to help you maintain movement, activity, and exercise safely and effectively.
In this webinar, Dr. Anne O’Brien, a physiotherapy clinical-specialist and Senior Lecturer at Keele University in the UK discusses the best strategies for managing joint and muscle pain, maintaining joint mobility, and incorporating exercise into daily life. While much of Dr. O’Brien’s research has focused on the importance of maintaining movement and activity for those with polymyalgia rheumatica (PMR); the information is applicable to all forms of vasculitis.

Key Topics Include:
Adapting physical activity to your body’s needs
Safe exercises and stretches to improve mobility
Balancing activity with rest
Impact of exercise on mood

Additional Helpful Resources

 The Vasculitis Foundation website's Physical Wellness page has guides, videos, and more, to help you move safely with vasculitis. https://vasculitisfoundation.org/living-well/wellness-movement/

Working on Wellness Foundation offers free and accessible online fitness options https://www.workingonwellnessfoundation.org

Poster: Exercises to Keep You Moving https://www.versusarthritis.org/media/23932/keep-moving-poster.pdf

The U.S. Department of Health and Human Services has a Move Your Way activity planner to help guide you as you gradually build more activity into your day https://odphp.health.gov/moveyourway/activity-planner

Live in the United States and looking for free, local exercise programs? Your health insurance provider may offer a free gym membership through Silver Sneakers. You can also contact your local senior center or Area Agency on Aging to see what classes are offered in your area.

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Dr. Notas de Koreishi:
• Hacia el principio dije que la pupila es la parte blanca en lugar de "negra".
• Un par de veces dije "tijera" en lugar de "tejido" cuando me refería al tejido del ojo.

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0:00
5:11 Fun facts about the microbiome
6:39 What does your gut microbiome do?
8:30 Microbiome connections
15:15 Diet and the microbiome
15:49 Microbiome and autoimmunity
16:51 Microbiome and vasculitis
18:21 Inflammation of the nose and sinuses
21:02 Unanswered questions
21:45 A unique longitudinal biorepository focused on sinonasal disease
24:00 Focusing on what happens before relapse (pre-relapse)
24:52 Do nasal bacteria change prior to and during relapse of GPA?
26:15 Corynebacteria: an understudied bug
28:42 Molecular changes occurring in nasal tissue observed prior to relapse
31:13 Nasal cells of GPA are different from those of healthy patients
34:00 Long-term goal: unravel the relationships between microbes, sinonasal cells, and the immune system
35:14 Vasculitis Sino-Nasal Indicators For Flares (V-SNIFF) Study
37:07 Misconceptions about the microbiome
40:00 Risks of probiotics
43:31 Q&A

The Microbiome and Vasculitis
March 2025

View the slides from this presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/03/Microbiome_VF_Rhee2025.pdf

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0:00
3:58 What are Lymphocytes?
6:01 Understanding CAR T-Cells.
7:04 How CAR T-Cell therapy works.
9:53 CAR T-Cells approved in cancer.
10:55 The evolution of CAR T-cells.
12:09 CAR vs CAAR-T cells.
14 :36 Pros and cons with CAR-T therapy.
18:37 CAR and CAARs in autoimmune disease.
20:50 Clinical trials.


You can view the presentation slides here: https://vasculitisfoundation.org/wp-content/uploads/2025/03/CAR_T_VF_20250313.pdf

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Link to slide presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/03/Healthy-Hair-Healthy-You.pdf

In this webinar, we explore the connection between vasculitis and hair loss, and share practical, holistic strategies to help restore your hair and support your overall health. Whether you’re struggling with hair thinning, loss, or other scalp issues, you’ll learn with tools to boost hair growth, strengthen your body, and feel more confident in your vasculitis journey.

What You’ll Learn:
*How vasculitis affects hair health and the scalp
*The impact of steroids on hair loss
*Key nutrients and supplements that promote hair regrowth
*Stress management techniques to reduce hair loss
*Scalp care routines for healthier, stronger hair
*Lifestyle changes that can aid in hair restoration and growth

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0:00
2:24 March is Autoimmune Disease Awareness Month
3:14 Test your knowledge! How much do you know about autoimmune diseases?
7:51 Multiple sclerosis and other rare demyelinating diseases
8:40 Neuromyelitis optica spectrum of disorders (NMOSD)
13:32 Stiff person syndrome
15:34 IgG4-related disease
16:44 Cogan’s Syndrome
18:17 Vogt-Koyanagi-Harada Syndrome (VKH)
19:18 Can pain be considered as a rare type of autoimmune disease?
20:03 Antibodies associated with autoimmune pain
20:44 Autoimmune pain
22:00 Take home points!
23:53 Why patients with vasculitis should learn about autoimmunity.
24:32 How are so many rare autoimmune diseases ever diagnosed?
27:06 Could research into autoimmune diseases lead us to find common threads among different
diseases that could lead to treatment?

Autoimmune Diseases
February 2025

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0:00
3:24 Understanding medication access.
4:20 Brands, generics, & branded generics.
5:42 What is a specialty medication?
6:13 What is a biologic vs. a biosimilar?
8:14 Biosimilars vs generic drugs.
10:06 Biosimilar updates.
11:15 Insurance payers.
13:31 Important terms you should know.
14:14 Prior authorization.
20:51 Navigating pharmacy options.
24:03 Patient Support Programs.
26:34 Medicare
28:21 Enrollment Period.
29:03 What is new in Medicare Part D in 2025.
31:47 Online tools and resources.
34:35 Can you give tips on navigating the prior authorization process?
38:22 My medication has been denied. What do I do now?
39:53 Can you explain again what is meant by a manufacturer co-pay card?

Navigating the Medical Access Process
February 2024

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0:00
9:10 The skin and vasculitis
13:52 Case 1
17:00 Case 2
22:21 How rare is UT?
27:42 Treatment
31:40 Hemorrhagic edema of infancy. Cockade purpura.
32:30 There are types of vasculitis that have UT-type legions, but not UT (EGPA)
33:58 With any Vasculitis that affects the skin, is it possible that a limited area will be affected? I have been told to return when I am covered with the issue, instead of several small spots.
36:09 Can you be in remission if you have no symptoms but have vasculitis in your system?
37:12 How does this work with Behcet's and Sjorgrens?
39:23 Can maternal exposure to Rubella cause any of this?
40:22 How rare is UT in black people?
41:39 Is there any evidence that COVID-19 has led to an increase in UT
42:44 Can you discuss the difference between urticaria and panniculitis
45:04 Is it possible that pressure from exercise could cause increased sensitivity with UT
46:10 When GI issues are involved with UT what are the symptoms?
48:08 Do you recommend any topicals or ointments to help maintain UT?
49:36 Is there a connection between UT and Lichen planus
52:58 Can chemo and radiation cause UT
54:16 Do the eruptions that occur with UT every crust or harden. If so could they be surgically removed?

Overview of Urticarial Vasculitis
February 2024

View Dr. Foulke's slide presentation here: https://vasculitisfoundation.org/wp-content/uploads/2025/02/urticarial-vasculitis.pdf

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0:00
4:54 Explanation of Takayasu Arteritis (TAK)
9:09 Diagnosis of TAK
11:47 Classification Criteria of TAK
12:30 Treatment
14:06 Children and TAK
20:45 Pediatric Vasculitis Activity Score 2008
24:26 Challenges in kids
25:36 Prior studies on childhood Takayasu Arteritis
27:32 International Collaboration on Childhood-Onset Takayasu Arteritis
31:56 Childhood Arthritis and Rheumatology Research Alliance (CARRA)
Paediatric Rheumatology European Association (PRES)
34:55: Q: How is the response to treatment monitored in children with TAK?
37:04 Q: What about lab work that’s needed with childhood TAK?
37:59 Q: Has there been an increase in the diagnosis of childhood TAK in recent years?
39:07 Q: Can you talk about some long-term implications of childhood TAK. And, can children with TAK live a normal life?

43:38 Q: Does the treatment change for a patient diagnosed in childhood and as they become adults?
45:10 Q: Do children diagnosed at an early age tend to have more issues from TAK as they get older (as opposed to adults diagnosed with TAK later in life?

Disease Assessment in Pediatric-Onset Takayasu Arteritis
February 20245

Click here to view Dr. Gagne's slide presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/02/VF-Presentation-Evening-Out-the-Score-in-cTAK.pdf

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Explore this guide for helpful links and tips https://vasculitisfoundation.org/wp-content/uploads/2025/01/Working-with-Vasculitis-Resource-Guide.pdf

A panel of people who are living and working with vasculitis share tips and resources. The panel discusses helpful tools for determining when and what to disclose as well as tools for you and your employer that can help you find accommodations that allow you to continue to thrive in your career. The panelists also discuss understanding your rights as an employee with a chronic illness, how to request workplace accommodations to continue your career, strategies for managing fatigue and brain fog, and more . . .

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3:24 Key questions: Is vasculitis “genetic”? What genetic testing should be sent?
9:28 Design of genetic studies.
10:26 Giant Cell Arteritis genetic study.
13:16 What do the results from this GCA genetic study tell us?
17:27 What is a genetic risk score?
20:59 Takeaways so far.
22:41 Vasculitis as a single gene disease.
24:52 DADA2
27:31 Takeaways
28:42 Vasculitis due to acquired mutations.
29:35 VEXAS
32:22 As we go through life our DNA acquires mutations.
35:06 Takeaways
37:15 Does vasculitis run in families?
42:08 Takeaways
43:20 What genetic testing should be sent?
45:45 Summary
47:48 Q: Where is most of this genetic research happening?
48:41 Q: My husband and his brother both have GPA. Should they be tested?
50:54 Q: Can DADA 2 be related to Factor V Lieden mutation?
51:54 Q: If you develop an autoimmune disease but do not have vasculitis but have a parent with vasculitis, does that autoimmune disease put you at higher risk of developing vasculitis?

Genetics and Vasculitis
Recorded December 2024

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0:00
3:36 Understanding the biology of steroids.
9:34 Historical background of using glucocorticoids to treat human diseases.
23:39 Side effects of glucocorticoids.
26:26 Known effects on the immune system.
27:01 Key knowledge gaps.
28:23 Our research platform.
29:17 Each cell responds very differently to glucocorticoids.
37:21 We need to study glucocorticoids in specific disease states.
40:42 How can this knowledge to the development of safer therapies?
41:22 Can we selectively deliver glucocorticoids to specific cell types?
41:48 Advantages of nanobodies as drug-delivery vehicles.
46:50 Summary
49:05 Q&A: Do most autoimmune diseases require steroid therapy?
50:03 Q&A: How do we know when to have a conversation with our doctor about our steroid dosage?
52:16 Q&A: Can you explain one of your summary points about pinning down the molecular mechanisms responsible for specific effects of glucocorticoids. What does this all mean to the average patient on steroid therapy?
54:23: Q&A: Does using topical steroids affect the dosage of glucocorticoids begin given to the patient?
57:38 Q&A: Below 15mg of prednisone my symptoms begin to return on taper. Is this common?
59:32 Q&A: Why do so many patients have difficulty reducing dosage. Also, the issue of adrenal insufficiency and tapering.
1:03:13 Q&A: When determining dosage does a person’s body weight factor into the dose level?
1:04:24 Q&A: Can you imagine a day when the dose of steroids needed could be cut in half?
1:06:22 Q&A: Are the side effects of steroids permanent?

How do glucocorticoids (‘steroids’) work?
January 2025

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0:00
2:34 Audience poll on neurological issues with vasculitis.
9:01 Systemic vasculitis vs. Nonsystemic vasculitis.
12:00 An illustration of our nervous system.
16:03 Imaging: Chronic Peripheral Nerve Vasculitis.
16:50 Symptoms with neuropathy and vasculitis.
18:29 When to suspect vasculitic neuropathy.
19:58 Why does early diagnosis matter?
20:43 Investigations: Clinical examinations.
22:10 Nerve conduction studies /EMG
23:47 Lab testing.
24:33 Nerve biopsy.
26:21 Treatment strategies.
31:48 Summary.
33:14 Q&A: What is it like to get a nerve conduction study?
36:16 Q&A: Can numbness in limbs be a sign of neuropathy?
38:33 Q&A: I have LVV Giant Cell Arteritis but I have been dealing with burning toes (not big toes just small) and also my ankles ache.
39:43 Q&A: Can prednisone mask mobility issues, and then show up later after being weaned off of prednisone?
41:06 Q&A: Is it unusual for a patient whose MPA, as far as serious kidney damage is concerned, is in check by rituximab but who has confirmed asymmetrical nerve damage and resulting neuropathy of hands and feet to have continued worsening of the neuropathy?
43:08 Q&A: What should be done if exercise or massage of the affected area worsens the symptoms of tingling, burning, etc.?
44:01 Q&A: How to find a neurologist who works with vasculitis and sees me as the whole person rather than only a certain part?
45:22 Q&A: I have ANCA vasculitis and had a drop foot in both of my feet two years ago. Now I only have neuropathy in one foot. I don't take any medicine was on gabapentin two years ago. My question is can it go away or does it get worse as we age?
48:14 Q&A: Why does neurotherapy make your feet and legs cold?
49:21 Q&A: Should a patient be referred to physical therapy when he/she has neuropathy?
49:51 Q&A I struggle with neuropathy in my hands and feet but have recently been diagnosed with the same issue in my rib cage. Is this rare?
50:32 Q&A I've been told that 600 mg of Alpha Lipoic Acid daily helps. Do you agree? Are there any supplements that you recommend?
51:40 Q&A Is Raynaud’s considered neuropathy?
52:00 Q&A How is it possible for a patient with a historical diagnosis of carpal tunnel to know if tingling is vascular neuropathy?
53:18 Q&A Does a foot drop from peripheral neuropathy due to vasculitis require wearing a splint for life?
54:39 Q&A Is an ongoing relationship with a neurologist necessary if you have been diagnosed with neuropathy?

Neurologic Manifestations of Vasculitis
Recorded January 2025

View the slide presentation: https://tinyurl.com/ycy4b333

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0:00
5:44 Survey question: Are you currently taking any anti-IL-5 drugs

6:25 Understanding EGPA

10:08 Cumulative clinical manifestations in 354 patients with EGPA

12:31 Treatment of EGPA

17:34 Survey question: Is asthma and/or sinus/nasal disease a significant part (problem) of your EGPA?

18:46 Treating asthma

22:06 Survey: Are you stuck on prednisone to control your EGPA?

23:48 The role of interleukin 5 (IL-5) in asthma / EGPA

25:05 How anti-IL-5 drugs work chemically in the body

27:03 The MIRRA Trial / Comparing mepolizumab to placebo

31:03 Summary of the MIRRA Trial

32:24 The MANDARA trial of benralizumab vs. mepolizumab for treatment of EGPA

36:07 Summary of the MANDARA trial

37:31 Data from the VCRC EGPA Registry

39:12 Tips for prescribing benralizumab or mepolizumab for EGPA

42:17 Q: Is there a difference between the doses of the anti-IL-5 drugs for asthma and EGPA?

43:34 Q: If Nucala doesn’t work what about switching to Fasenra?

45:31 Q: Jennifer Gordon’s story with EGPA and treatments.

47:05 Q: How do you make the decision to try the drug, or switch to these drugs?

51:05 Q: Will I have to take these drugs for the rest of my life?

55:12 Q: Is Tezepelumab being used to treat EGPA?

56:38 Join the VPPRN to get involved in clinical studies.

Fasenra® and Nucala®: Approved Therapies for EGPA
Recorded December 2024

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0:00
1:59 Survey questions about PMR
6:22 Introduction to PMR
8:39 What does the name PMR mean?
10:49 What imaging studies have taught us about PMR.
12:10 Incidence of PMR.
13:17 The challenges of diagnosing PMR.
15:36 Primary care physicians and referral study for PMR.
21:46 Closer look at imaging used in PMR diagnosis.
24:34 GCA and PMR: A meaningful association?
26:07 PMR – Corticosteroids (glucocorticoids) treatment.
29:22 PMR – GC-sparing agents
30:28 PMR: Current treatment landscape.
31:34 Tocilizumab in patients with new-onset of PMR.
32:44 SAPHYR: Sarilumab in relapsing PMR.
33:31 Changing the paradigm of treatment.
34:21 PMR treatments under investigation.
39:35 Q&A What is the role of biopsies in diagnosis of PMR.?
40:40 Q&A If you had PMR 18 years ago, and now you have GCA now, is there a chance you’ll have PMR again?
43:05 Q&A Do you know of cases where PMR has been associated with other types of vasculitis besides GCA?
46:46 Q&A Can you talk about challenges of exercising when you are dealing with the pain from PMR?
51:42 Q&A Do epigenetic factors play a role in PMR and GCA?
52:48 Q&A How do you know if you’re having a PMR flare or if it’s a prednisone withdrawal.
55:54 Q&A Why is the pain from PMR sometimes worse in the morning?
57:11 Q&A When do you think the new drugs in development will be available for PMR?

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0:00
0:37 Introductions
2:38 Charlie Granger introduction.
5:01 Greg Patterson introduction.
9:34 The mental and emotional impact of chronic pain with vasculitis.
13:05 A clinical perspective about the emotional toll of chronic pain.
17:33 The challenges of getting treatment for the pain.
23:59 Discussing opioids with pain specialists.
27:21 Doctors' perspective on these challenges to pain management.
28:41 A good explanation of chronic pain and the nervous system.
32:37 Charlie: Using distraction as a pain management strategy.
33:53 Challenges of pain management for the medical professional.
36:49 Charlie: A spinal cord stimulator implant.
44:51 Greg’s perspective as a physical therapist who also deals with chronic pain.
49:28 Do the different types of vasculitis cause pain in unique ways or impact certain body parts. For example, does pain from PAN manifest differently than in GPA?
50:30 Question from Charlie: Do you think that opioids are an effective treatment option for chronic pain from vasculitis?
52:37 Are there any future treatments to address the vasculitis before it can progress and cause chronic pain?

VF Patient Roundtable: Chronic Pain and Vasculitis
December 2024

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0:00
1:57 What are the latest CDC COVID guidelines and recommendations?
3:02 Tell us about the new vaccine called Novavax. How does it differ from the other COVID-19
vaccines?
8:19 Is the new Novavax vaccine safe and recommended for immunocompromised patients?
8:46 Clarifying about the timing of when to get the COVID booster.
10:00 Is there a new vaccine that combines both the COVID-19 and influenza vaccines? Is it safe for patients with vasculitis?
10:53 What is Pemgarda?
13:50 What are the guidelines to get the COVID-19 vaccine when you’re under treatment for vasculitis?
16:52 What is RSV? Should autoimmune patients get the RSV vaccine?
22:02 Are we going to need a COVID booster every six months?
22:33 Is it recommended that patients with vasculitis get Paxlovid?
24:06 What can you tell us about all of the other vaccines such as the one for shingles?

Vaccines Update for Patients with Vasculitis
November 2024

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