Videos

0:00
0:46 Introduction of Dr. Guy Katz
4:40 What is autoimmunity?
7:38 Genetics.
9:02 What are environmental triggers?
11:36 How to prove something causes vasculitis.
13:16 Observational studies.
14:32 Challenge with observational studies.
17:08 Trigger of disease onset vs. flares.
19:14 Environmental triggers of vasculitis.
19:57 Infections.
22:46 COVID-19
23:20 Seasonality.
24:45 Airborne exposures.
25:51 Occupational exposures.
27:01 Cigarette smoke.
28:27 Medications and drugs.
30:09 On an individual level.
31:51 Final thoughts.
35:42 Q: Is there more research into COVID possibly triggering vasculitis?
36:42 Q: Can changes in barometric pressure trigger symptoms?
37:40 Q: Can a medication exposure that triggers vasculitis only start to show certain symptoms a month later?
40:55 Q: Can exercise be considered an environmental trigger?
42:02 Q: What about silica as a possible environmental trigger?
44:18 Q: The environmental triggers of vasculitis that you mentioned initially - was that at disease onset or flares?
45:47 Q: Is autoimmune disease inherited since there is a genetic component?
47:21 Q: What about exposure to mold and jet fuel?
49:21 Q: I am confused about when something could cause vasculitis and when something requires the immune system.
50:39 Q: Can you name the top three possible environmental factors associated with ANCA-vasculitis?
52:19 Q: How can you get involved in the studies cited in the presentation?
54:44 Q: What about the Shingrix vaccine?
57:46 Q: Do you expect more researchers to look at this area of potential environmental triggers with vasculitis?
58:35 Q: Has the doctor ever seen a case where family members were both exposed to the same element—diagnosed with vasculitis?

Vasculitis and the Environment: A Closer Look
August 2024

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“How do I show up as a parent when I’m in a flare?” “How do I navigate sending my child to daycare when my immune system is compromised?” “How can I do my best not to miss out on important family events with my children?” In this discussion with Cassy Sims, MD, a rheumatologist at Duke Health; Heather Tam, a patient advocate and mother living with vasculitis; and Kayden Carter, a father living with vasculitis, we explore your most pressing questions about raising a young family when you have vasculitis.

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0:00
2:25 Project background: Steroid reduction.
4:36 Project objectives: Improve safety of treatment of AAV.
5:19 Provide alternative options for GC-sparing regimens.
6:01 Methods and steps.
8:57 Potential benefits of this study.
10:48 Support for this project.
12:11 What is meant by induction therapy? When a doctor first diagnoses a patient how does he/she determine the dosage of steroids needed to be most effective?
16:03 Is one of the goals where newly diagnosed patients could start on a much lower dose of steroids but still achieve control over the inflammation?
19:56 Does the doctor imagine a day when steroids will be eliminated and replaced with another type of therapy (medication) that will be just as effective as steroids, but without the side effects?
25:20 Steroid therapy—how low can we go?
26:07 Is the SAFE-T Study related to the PEXIVAS Trial?
29:23 Are you getting closer to the phase where you will be recruiting patients?
30:58 How did you become interested in nephrology?

The SAFE-T Study: How low can we go with steroid therapy?
August 2024

Addendum: Read a VF article about David Massicotte-Azarniouch
and his current study at: https://tinyurl.com/2sdrxcfb

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“Is it possible for me to get pregnant after a vasculitis diagnosis?” “Will pregnancy cause my disease to flare?” “How will the medications I’m taking impact my baby, from pregnancy through breastfeeding?” In this discussion with Cassy Sims, MD, a rheumatologist at Duke Health who focuses on reproductive rheumatology and preventative health, and Heather Tam, a patient advocate and mother living with vasculitis, we explore your most pressing questions about family planning, pregnancy, and breastfeeding with vasculitis. You’ll learn about the importance of clear and honest communication with your doctor, helping you make the best, most informed decisions around your unique needs, expectations, and risks.

Find additional helpful resources on family planning, pregnancy, and vasculitis https://www.vasculitisfoundation.org/treatments-research/vasculitis-pregnancy-registry/

Questions on the Vasculitis Pregnancy Registry (VPREG) or on pregnancy and vasculitis? Email [email protected]

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Kacey Ableman's son Spencer was diagnosed with vasculitis as a young teenager. Kacey wants other parents of children with vasculitis to know that there are other parents eager to support you, and that there are many "good things to come."

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Maddie Swanson, who was diagnosed with EGPA as a teenager, wants others who are living with vasculitis to know that your "new normal" can still be joyful and fun.

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Spencer Ableman, a teen diagnosed with MPA vasculitis and anti-GBM disease, wants others living with vasculitis to know that there is "light at the end of the tunnel, it will get better."

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0:00
1:55 Introductions

3:42 Cringe Questions: “ How can you be sick when you look so good? / How bad can
vasculitis be?”

8:53 Cringe Questions: “ Isn’t vasculitis just a treatable skin disease?” / “Is vasculitis a form of cancer?”

12:41 Does chemotherapy treatment cause confusion that vasculitis is a form of cancer?

18:20 Is it better to call vasculitis an autoimmune disorder?

19:19 Cringe Questions: “What's the name of that disease you have and what does it do to you?”

27:36 Cringe Questions: “How long will it be for your vasculitis to go away?” / “Is there a
cure for vasculitis?”

30:23 Cringe Question: “Is vasculitis fatal?”

40:28 Cringe Questions: “ Why are you always so tired? Is that part of your illness?” / “ Are you sure you’re not exaggerating your symptoms?”

41:25 Powerful quote: “People with rare diseases don’t fake their symptoms. They fake being well.”

44:11 Dr. Banerjee explains why fatigue is a real and common part of vasculitis.

54:15 Cringe Questions: “Can’t you just eat healthier” / Can't you take Vitamins and eat
healthy to boost your immune system?”

58:58 Cringe Questions: “Why are you still wearing a mask?” / “Are you wearing a mask
because your disease is contagious?”

1:02:04 Cringe Question: “ I didn’t think people of color could get vasculitis.”

VF Patient Roundtable: Dealing with the Vasculitis Cringe Questions

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Links to helpful resources can be found at the end of the description.

Managing chronic pain and illness is difficult on the best of days, but when you find yourself facing these challenges within a relationship, it often makes things even harder. Not only are you having to manage your symptoms, but your partner is also having to learn and adjust as well. This can result in feelings of guilt, fear, resentment, and uncertainty for both parties. Kira Lynne, a clinical counselor and someone who has lived with chronic pain and illness for many years, shares information and skills to help you support your relationship in these difficult times.
• Needs Inventory https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Needs-Inventory.pdf
• Feedback Formula https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Feedback-Formula.pdf
• Feelings Inventory https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Feelings-Inventory.pdf
• Fighting Fairly Do's & Don'ts https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Fighting-Fairly-Dos-and-Donts-.pdf
• Listen, Summarize, Validate https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Listen-Summarize-Validate.pdf
• Additional Resources https://www.vasculitisfoundation.org/wp-content/uploads/2024/07/Additional-Resources.pdf

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0:00
3:24 How much does a pediatric patient’s body weight factor in with the treatment he/she gets? (And does this calculation factor in for adults, too?)
6:46 Sometimes it’s so difficult to get an accurate read on how my teenage daughter with EGPA is feeling. She is very vague and non-specific if she’s not feeling well. Any advice?
10:40 Thoughts on Avocopan instead of Rituximab for maintenance?
13:30 Any advice to a grandparent who sometimes has to watch a granddaughter who has vasculitis? I’m a bit nervous with the responsibility.
18:11 Do children get MPA or EGPA?
20:35 Isn’t Kawasaki Disease more often found in children?
25:58 Any advice on how I can help to ensure that my child is taking his medications?
29:55 How important is it for a neurologist to be a part of my son’s medical team?

Recorded July 2024

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0:00
2:21 The ED process. Triage. Room assignment. Evaluation and treatment.
5:21 The patient protocol.
12:14 Dr. Wilson’s perspective as both physician and parent.
16:13 Ben Wilson’s perspective.
20:51 Dr. Wilson: Navigating the ED process as a parent.
27:12 Evaluating a patient in the ED.
27:46 Evaluating the symptoms.
29:04 Nobody comes in with a label on their head saying what is wrong.
29:21 Vasculitis is one of those big mysteries from the symptoms.
31:23 Medicare patients get a private room because the patient is immune compromised.
33:28 Challenge of coordination among specialists.
35:11 What is the best method to present the medical information that I bring with me?
37:50 Is there a better way to explain my vasculitis to the attending doctor so they understand?
41:55 Kathy’s teachable moment from the emergency department
44:35 Does it help if your physician has admitting privileges in the ER that you go to?

Navigating the Emergency Department
July 2024

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0:00
2:16 Is there any skin involvement with MPA?
4:51 Is there typically eye involvement with MPA?
7:38 Do you see any correlation between MPA and ocular migraine?
9:39 As a patient with MPA, my kidney health is stable right now, I worry that one day, it
will suddenly get worse and be hospitalized. Is it true that once you are in
remission, if you are being monitored, it will not come back as aggressively as it did
in the beginning.
12:51 I'm in remission off treatment, can I take vitamins and things? I heard that I
shouldn't try to strengthen my immune system, but that is how I lived my life before
diagnosis, to prevent flu, colds and viruses.
14:46 I have MPA which is in remission. I have just been diagnosed with ITP. how worried
should I be? (What IS ITP?)

Q&A: MPA
July 2024

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Chronic pain and illness can be lonely and isolating, particularly if you’re not in a relationship. It may be overwhelming to contemplate how to meet someone and form an intimate connection. If you are wondering if it’s possible to date while living with chronic health conditions like vasculitis and how to go about it, join Kira Lynne, a clinical counselor and someone who has lived with chronic pain and illness for many years, as she talks about the ins and outs and the up and downs of dating with what are oftentimes
debilitating health conditions.

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0:00
6:18 What happens to the body when taking corticosteroids?
8:57 What is adrenal insufficiency?
10:34 Risks.
13:35 Symptoms of corticosteroids.
15:37 Testing: Basal Cortisol Levels.
16:37 ACTH Stimulation test.
19:11 Adrenal insufficiency vs. prednisone withdrawal.
23:09 Q&A: What are some symptoms of adrenal insufficiency vs those symptoms for
weaning too fast from steroids?
24:48 Q&A: Is Adrenal Insufficiency inevitable if you reduce prednisone slowly over two
years? At what dosage will it appear?
27:49 Q&A: If one of the symptoms is fatigue, and fatigue is one of the most common
lingering symptoms of ANCA vasculitis, how can my team determine if I
have adrenal insufficiency without the ATCH test?
32:31 Q&A: What happens to adrenal glands in the case of a transplant?
33:40 Q&A: Are there forms of vasculitis that can cause primary adrenal insufficiency?
34:51 Q&A: If you decrease prednisone to 0 do you always develop adrenal
insufficiency?
36:04 Q&A: Is a person at risk for adrenal insufficiency while they are reducing and then
12 months after stopping completely?
36:40 Q&A: Is there a method that works to reduce steroid dependence because a small
reduction causes steroid withdrawal?
39:09 Q&A: What can patients do as they taper off prednisone to get the adrenal glands to
'kick in' and start making sufficient amounts of cortisol again?
41:36 Q&A: If repeated cortisol tests show the return of cortisol levels to normal levels
then there is no longer adrenal insufficiency. Is this correct?
43:20 Q&A: Can you recover from adrenal insufficiency or can it be a permanent
condition?
47:11 Q&A: What is meant by a “rescue dose”?
47:43 Q&A: Budesonide is reported as having fewer systemic effects than Prednisone-
does it have the same risk of AI?
48:54: Q&A: Does advanced age affect the ability to recover from adrenal insufficiency?
49:45 Q&A: Is DHEA a steroid?

What You Need to Know about Adrenal Insufficiency
Recorded June 2024

If you’re living with vasculitis and on corticosteroid medication, we have what you need to know about adrenal insufficiency. In this webinar, Alexandra Villa-Forte, MD, MPH, FACP, from the Center for Vasculitis Care and Research at the Cleveland Clinic, addresses your most pressing concerns and explain why tapering off corticosteroids needs to be done in a precise way. Dr. Villa-Forte will discusses how to discern between withdrawal symptoms and adrenal insufficiency, and how to monitor yourself for potential adverse effects during a taper.

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0:00
2:47 The back story about this study on Vitamin D and vasculitis.
8:49 What is Vitamin D?
9:41 Effects of Vitamin D deficiency?
11:23 How much is right for you?
12:56 Research on the benefits of supplementing Vitamin D.
14:47 The Vitamin D controversy.
17:03 Exploring the Vitamin D status in ANCA-Associated Vasculitis.
24:34 Q&A: How was your research presentation received at the 2024 Barcelona Workshop?
31:55 Q&A: How much Vitamin D should we be taking?
33:58 Q&A: Should I be taking Vitamin D if I have active EGPA?
35:46 Q&A: Is there a genetic link to Vitamin D deficiency?
37:01 Q&A: How did this study about the benefits of Vitamin D originate?
40:13 Q&A: Is absorption of Vitamin D affected if a patient has GI involvement with their vasculitis?
41:33 Q&A: What type of Vitamin D should I buy?
44:01 Q&A: Any research to share about the use of Vitamin D to offset the effects of COVID-19?
45:50 Q&A: What are the outcomes that you would like to see from this research?
48:46 Q&A: What are the next steps for this study?

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O:00
2:04 I would like to get a tattoo but I also have active vasculitis. What are the risks?
Should I wait to achieve remission before getting it done?
4:19 Can patients who have gained weight on steroids take injectables such as
Ozempic®, or Wegovy®.
7:02 Do you tend to lose weight as you taper off of Prednisone?
8:59 Is it true these medications like Ozempic® affect your appetite? And, doesn’t that
work against you when you have active vasculitis?
10:56 Vaping.
13:05 Drinking alcohol when you are under treatment.
15:52 Sometimes I’m tempted to taper or increase my steroids on my own. Why is this a
bad idea?
18:48 CBD and active vasculitis.
20:58 How to ask your doctor the tough questions.
24:36 I want to ask my doctor to increase my pain medication, but I am hesitant to do so.
Any advice?
27:01 Acupuncture.
28:16 Medical marijuana and vasculitis.
28:49 Can I be around a newborn baby who is getting vaccinations?

Awkward Questions to Ask Your Doctor
Recorded June 2024

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0:00
2:40 Welcome to the new and improved VF website.
3:29 Find information about each type of vasculitis.
5:47 Exploring the Treatment and Research section.
6:22 Your treatment plan.
6:34 Participate in clinical trials.
8:04 Find a Doctor.
9:56 The VF Video Library
12:37 Subscribe to VF E-News the monthly VF newsletter.
13:05 Find the latest VF events.
14:43 Vasculitis in the News: The VF News Feed
15:34 Contact the VF!

Researching Online: Tour of the new and improved VF Website
Recorded June 2024

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0:00
2:37 Go to the Vasculitis Foundation at www.vasculitifoundation.org. Click on the newly
diagnosed tab.
3:34 Finding a Doctor section.
4:44 Learn About Vasculitis tab.
4:49 Find information on specific types of vasculitis.
5:15 Build Your Treatment Plan section.
5:50 Understanding Glucocorticoids.
7:29 Finding Support.
9:16 Care for Mind and Body.
10:15 Contact the VF.

The VF Website for Newly Diagnosed Patients
Recorded June 2024

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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

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Presentation Slides: https://www.vasculitisfoundation.org/wp-content/uploads/2024/06/Grief-Vasculitis.pdf

Living with vasculitis brings not just physical challenges but also deep emotional ones. Noelle Creamer, a Board-Certified Health and Wellness Coach who’s also living with vasculitis, dives into the grief that comes with a vasculitis diagnosis and how it affects more than just our health. She explores what this grief looks like, why it's so hard to talk about, and how we can move forward with hope.

What you will learn in this workshop:

Understanding Grief’s Many Forms: Gain a deeper insight into the various types of grief one may encounter with a vasculitis diagnosis, including loss of control, loss of trust in one's body, or loss of personal identity, purpose and direction.

Unveiling Disenfranchised Grief: Discover what disenfranchised grief is and why it's significant, especially when your feelings of loss go unrecognized by society.

Recognizing the Symptoms: Learn to identify the symptoms of disenfranchised grief and understand how they might differ from those of traditional mourning.

Physical Manifestations of Grief: Explore how grief can be embodied, learning to recognize the physical signs and symptoms that grief may be affecting your wellbeing.

Self-Reflection Prompts for Tough Days: Arm yourself with thoughtful questions to guide you through difficult moments, fostering introspection and self-compassion.

Cultivating Self-Care: Learn about practical self-care strategies for challenging days, designed to nurture both body and spirit.

Embracing Your 'MVP': Engage with key practices—Mindfulness, Visualization, and Purpose—as tools to center yourself and find peace amidst the turmoil.

Applying the 3-H's Approach: Determine which type of support you need at any given moment and learn how to communicate these needs to others.

Community and Support: Learn the importance of sharing your story and finding a community that understands and supports you.

About Noelle:

Noelle Creamer is a Board-Certified Health and Wellness Coach with training from Duke University, and the Co-Founder of BrightlyThrive™, a community-based app that supports those living with autoimmune conditions, inspired by Noelle's own victory over Granulomatosis with Polyangiitis. Noelle’s credentials also extend to certifications in breathwork, mind/body connection, lifestyle medicine, nutrition and yoga, enriching her holistic approach to wellness.

Her mission is clear: to empower people to transcend health challenges and live fully today without fearing tomorrow. Noelle specializes in cultivating a positive mindset and building healthy habits in nutrition, exercise, sleep, and community connection. She is a guide, mentor, and advocate for thriving health and wellness.

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0:00
0:46 Introduction
2:07 My GPA led to permanent hearing loss, however, I don't well understand what
happened. Are you able to provide some common reasons for this permanent
loss?

6:35 What are your thoughts on less invasive balloon sinuplasty for vasculitis patients?

8:16 Is it common for GPA to start in sinusitis and then that clears and moves to other
symptoms joint pain and eye pain but no sinusitis?

9:35 How can eustachian tube dysfunction present when GPA is the culprit? Is this a
common presentation?

11:03 You say to avoid surgery, but in the presence of invasive polyps is that the case? I
had two surgeries within 12 weeks for severe presentations of polyps. were they
potentially avoidable?

12:41 I use hydropulse nasal irrigation and it is effective. I had no relief with the 6oz
bottle. Do you recommend hydro pulse?

14:00 How do you know if the crusting and mucus is normal and not inflammation or
residue from the GPA damage?

15:19 What does a sinus biopsy show when it is positive for vasculitis?

16:55 Once you’re diagnosed and mostly under control, how common is it to develop
saddle nose?

18:44 Can sinus involvement also affect the teeth or mouth?

19:43 Have you ever dealt with a patient who had sinus involvement with vasculitis and
they wanted to get a nose ring, or a small metal stud. If so, how did you advise
them on risks?

21:50 Can you share the key points that you would tell a patient who has sinus
involvement?

More Q&A on Sinuses and Vasculitis
Recorded June 2024

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0:00
1:40 How do you know where to go online to find information about vasculitis?
2:28 What does a sponsored website mean?
3:30 Foundation websites.
6:48 Medical organization websites: American College of Rheumatology (ACR)
7:32 ACR / VF Clinical Practices Guidelines
9:16 Government online resources.
9:34 National Institutes of Health (NIH)
12:55 Academic medical centers
15:10 Other educational sites.
15:32 ANCA Vasculitis News
17:19 UptoDate Online
19:41 What about websites / advice to avoid?
24:32 Good news site: VF’s RSS News Feed

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0:00
0:34 Introducing Dr. Alicia Rodrigue-Pla
1:51 What is EGPA?
4:44 Pathogenesis
8:17 Epidemiology
9:15 Patient case study
10:16 Symptoms
11:31 Phases of EGPA
12:57 ANCA- vs ANCA +
13:57 Diagnosis
16:50 Differentiating features.
18:36 Treatment
19:28 Treatment timeline.
20:45 Treatment: Refractory disease.
21:00 ACR / VF Guidelines.
23:26 Anti-il5/il5r biologic therapies
25:53 Anti-il-5 therapies in EGPA
26 :43 Mepolizumab (I)
27 :52 Benralizumab (I)
29:33 Phase 2 reslizumab study for EGPA
29:47 Take home messages

31:23 Q: Many of us have no eosinophils b/c of pred, Nucala, etc. but still have flares, or
need additional meds to manage the epga. What can cause flares in EGPA when the
EOS are 0?
34:30 Q: What does DAH mean?
36:28 Q: What is the youngest patient the doctor has treated for EGPA?
37:23 Q: Could you tell us again how the drug Mepolizumab could help patients?
39:39 Q: Have you experience with EGPA patients successfully maintaining remission
off all treatments?
41:15 Q: Are vaccines such as flu, covid, and shingles recommended?
41:53 Q: Do you know the timeline of approval for the use of bevacizumab to treat
EGPA? What was the dosing frequency in the study - was it 30 mg every 4
weeks?
43:03 Q: Is it normal having a lot of surgeries in the sinuses? Every year? And
inflammation in other organs?
44:06 Q: What percentage of patients develop antibodies to Benralizumab over time?
44:54 Q: Rituximab was not listed on the IL-5 inhibitor slides. In addition to B cell
interaction, does Rituximab also inhibit IL-5?
45:39 Q: How common is neuropathy?
47:23 Q: How is asthma treated when someone has EGPA?
48:12 Q: Thoughts about diet and vasculitis?
50:15 Q: Why is tavneos only for ANCA positive? We cannot use it right?
52:37 Q: Who should be on my medical team? Should I have a pulmonologist with
EGPA?

Overview of EGPA
Recorded June 2024

In this webinar, Alicia Rodriguez-Pla, MD, PhD, MPH, a rheumatologist at Sierra Pacific Arthritis and Rheumatology Centers in Fresno, California, helps you to understand the symptoms, diagnosis, and available treatment strategies for EGPA. She also review spotential complications from the disease, as well as what’s on the horizon—current research and ongoing clinical studies.

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Join us for a floor-based or bed-based nurturing SomaYoga class designed specifically for individuals living with vasculitis. Led by experienced Yoga Therapist, Molly McManus who understands the unique challenges of managing fatigue and exhaustion, this class offers a gentle yet effective approach to restoring energy levels and promoting overall well-being.

SomaYoga combines gentle movement, simple breathwork, and relaxation techniques to help release tension, improve circulation, and cultivate a sense of inner calm. Through accessible low-load somatic movement sequences, participants will learn how to honor their bodies' needs and find balance amidst the demands of daily life.

Whether you're experiencing acute fatigue or managing chronic exhaustion, or just simply want to find more ease, this class provides a safe and supportive space to explore reconnecting to your body and mind. You'll leave feeling refreshed, replenished, and empowered to navigate today’s journey with vasculitis with greater ease and resilience.

No prior yoga experience is necessary. All levels of mobility are welcome. Come as you are and take the first step towards reclaiming your vitality.

Requirements: Floor space with a mat or a space in your bed if you are experiencing acute fatigue. A pillow or two, a blanket, and a small towel.

You can find more nurturing yoga classes on Molly's website https://www.yoganorthduluth.com/

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