Video Library

Visit the VF YouTube Channel to search our video collection.

There you will find videos covering a wide variety of topics such as:

  • Vasculitis treatments
  • Coping with the mental health impact of vasculitis
  • Making the most of your doctor’s appointments
  • The impact of vasculitis and vasculitis treatments on your heart, lungs, kidneys, sinuses, ears, eyes, bones, and skin
  • Pregnancy and family planning with vasculitis
  • Exercise and nutrition with vasculitis
0:00
2:15  Integrative and functional approach to pain.
3:15  Six pillars of lifestyle medicine.
7:06  Understanding the “blue zones”.
9:07  Caloric restriction / dietary fasting.
11:37  What is the optimal diet?
15:49 Exercise: What does the literature suggest?
20:18  The importance of sleep.
22:45  Sleep and immunity.
27:57  Two brain networks to help us understand mindfulness.
29:10  The Default Network, and the Task Positive Network.
31:55  Grounding techniques.
35:02  What are some apps and resources to tap into these programs?
36:04  What about the effects of steroids that make sleep so difficult?
37:24   How important is it to track our oxygen levels especially when exercising?
39:55  Any recommendations on what kind of vitamins to take?  And, what about vitamins that boost immunity—should they be avoided?
42:09  Any advice on taking melatonin to help our sleep?

The Art and Science of Living
Recorded July 2023

Dr. Agarwal looks at the integrative and functional approach to pain, focusing on lifestyle. By making positive lifestyle changes, we can reduce the risk of developing chronic diseases, and can potentially treat and reverse these conditions.  Deepti Agarwal, MD, is Director of Interventional and Integrative Pain Management at Case Integrative Health.

View presentation slides:  http://tinyurl.com/3xps44n7

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
2:15 Integrative and functional approach to pain.
3:15 Six pillars of lifestyle medicine.
7:06 Understanding the “blue zones”.
9:07 Caloric restriction / dietary fasting.
11:37 What is the optimal diet?
15:49 Exercise: What does the literature suggest?
20:18 The importance of sleep.
22:45 Sleep and immunity.
27:57 Two brain networks to help us understand mindfulness.
29:10 The Default Network, and the Task Positive Network.
31:55 Grounding techniques.
35:02 What are some apps and resources to tap into these programs?
36:04 What about the effects of steroids that make sleep so difficult?
37:24 How important is it to track our oxygen levels especially when exercising?
39:55 Any recommendations on what kind of vitamins to take? And, what about vitamins that boost immunity—should they be avoided?
42:09 Any advice on taking melatonin to help our sleep?

The Art and Science of Living
Recorded July 2023

Dr. Agarwal looks at the integrative and functional approach to pain, focusing on lifestyle. By making positive lifestyle changes, we can reduce the risk of developing chronic diseases, and can potentially treat and reverse these conditions. Deepti Agarwal, MD, is Director of Interventional and Integrative Pain Management at Case Integrative Health.

View presentation slides: http://tinyurl.com/3xps44n7

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

5 1

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS41NTZEOThBNThFOUVGQkVB

The Art and Science of Living Well

0:00
3:50  Are you a newly diagnosed patient?  
4:15  Vasculitis 101: A beginner’s overview.
5:46   What is a typical journey?
8:02   Here are some ways to learn more about your disease.
12:09  How do I know if I’m in remission or if I’m flaring?
16:15  The key question: What is active disease?
19:47   How do I find balance between being aware of my disease, but not to the point of anxiety?
22:31   How do you deal with the challenges when a patient with vasculitis has to go into the emergency department for help?  
31:00  I live in an area that doesn’t have many vasculitis specialists.  What options are there to 
get one on your team?
37:29  We are looking for trouble in all the right places.
40:05  Are there triggers that make vasculitis flare?  Are there things we should avoid?
42:40  How do you deal with doctors who don’t know what to do with you?  How do we trust and know that we’re seeing the right doctor?

Navigating Your Journey: Newly Diagnosed Patients
Recorded July 2023

In this webinar, patients who are newly diagnosed with vasculitis are given a clinical roadmap to navigate their disease. Drs. Fusser, Merkel and Micheletti provide an overview on the different types of vasculitis, a typical journey to diagnosis, how to find reliable information, and treatment strategies and their side effects.

View the slide presentation:  http://tinyurl.com/4347r858

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
3:50 Are you a newly diagnosed patient?
4:15 Vasculitis 101: A beginner’s overview.
5:46 What is a typical journey?
8:02 Here are some ways to learn more about your disease.
12:09 How do I know if I’m in remission or if I’m flaring?
16:15 The key question: What is active disease?
19:47 How do I find balance between being aware of my disease, but not to the point of anxiety?
22:31 How do you deal with the challenges when a patient with vasculitis has to go into the emergency department for help?
31:00 I live in an area that doesn’t have many vasculitis specialists. What options are there to
get one on your team?
37:29 We are looking for trouble in all the right places.
40:05 Are there triggers that make vasculitis flare? Are there things we should avoid?
42:40 How do you deal with doctors who don’t know what to do with you? How do we trust and know that we’re seeing the right doctor?

Navigating Your Journey: Newly Diagnosed Patients
Recorded July 2023

In this webinar, patients who are newly diagnosed with vasculitis are given a clinical roadmap to navigate their disease. Drs. Fusser, Merkel and Micheletti provide an overview on the different types of vasculitis, a typical journey to diagnosis, how to find reliable information, and treatment strategies and their side effects.

View the slide presentation: http://tinyurl.com/4347r858

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

11 4

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS4xMzgwMzBERjQ4NjEzNUE5

Navigating Your Journey: Newly Diagnosed Patients

0:00
1:04  Advances in treatment research and treatment of GPA/MPA.
2:20  New 2022 EULAR/ACR classification criteria.
3:51  Induction treatment of ANCA-associated vasculitis.
5:48  Glucocorticoid-sparing regimens.
8:00  Avacopan
9:11  Rituximab vs. azathioprine for maintenace of remission.
9:50  Spotlighting B-cell targeted therapy. 
12:14  Advances in treatment and research for EGPA.
12:36  Clinical presentation of EGPA.
14:59  Classificaton critera for EGPA.
16:52  Treatment of EGPA.
20:05  Advances in treatment and research of LLV, and Polymyalgia Rheumatica
21:12  EULAR recommendations for the use of imaging in large vessel vasculitis.
22:20  Latest research into Polymyalgia Rheumatica.
24:10  Effect of Tocilizumab on disease activity in patients with active PMR.
26:51  Have you found there are discrepancies between the EULAR and ACR findings and recommendations?

Report from EULAR Advances in Research and Treatments
Recorded July 2023

Drs. Cornec, Berti, and Moura look at EULAR/ACR classification criteria and the demographics for vasculitis, as well as advances in research and treatments of GPA, MPA, EPGA, LVV, and PMR.  Diagnostic techniques are presented along with an overview of therapies including induction treatment, glucocorticoid-sparing regimens, plasma exchange, avacopan, rituximab versus azathioprine, B cell targeted therapy, personalized medicine, and more.

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
1:04 Advances in treatment research and treatment of GPA/MPA.
2:20 New 2022 EULAR/ACR classification criteria.
3:51 Induction treatment of ANCA-associated vasculitis.
5:48 Glucocorticoid-sparing regimens.
8:00 Avacopan
9:11 Rituximab vs. azathioprine for maintenace of remission.
9:50 Spotlighting B-cell targeted therapy.
12:14 Advances in treatment and research for EGPA.
12:36 Clinical presentation of EGPA.
14:59 Classificaton critera for EGPA.
16:52 Treatment of EGPA.
20:05 Advances in treatment and research of LLV, and Polymyalgia Rheumatica
21:12 EULAR recommendations for the use of imaging in large vessel vasculitis.
22:20 Latest research into Polymyalgia Rheumatica.
24:10 Effect of Tocilizumab on disease activity in patients with active PMR.
26:51 Have you found there are discrepancies between the EULAR and ACR findings and recommendations?

Report from EULAR Advances in Research and Treatments
Recorded July 2023

Drs. Cornec, Berti, and Moura look at EULAR/ACR classification criteria and the demographics for vasculitis, as well as advances in research and treatments of GPA, MPA, EPGA, LVV, and PMR.  Diagnostic techniques are presented along with an overview of therapies including induction treatment, glucocorticoid-sparing regimens, plasma exchange, avacopan, rituximab versus azathioprine, B cell targeted therapy, personalized medicine, and more.

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

2 0

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5ENjI1QUI0MDI5NEQzODFE

Report from EULAR Advances in Research and Treatments

0:00
0:22  Functions of the immune system.
2:21  Target molecules in vasculitis.
3:19  American College of Rheumatology (ACR) vaccine guidelines for patients with rheumatic and musculoskeletal disorders.
4:05  Influenza vaccine.
5:30  Pneumococcal vaccine.
6:01  Immunosuppressants and vaccines.
6:33  COVID-19 infection.
9:25  Who are at risk for COVID-19 infection?
10:48  The COVID-19 vaccine.
14:46  Outpatient management strategy of immunocompromised patients for COVID-19.
15:34  Anti-viral therapy for COVID-19 infection.
18:30  Is it recommended to pause treatment before getting the COVID-19 vaccine?
19:57  Can we become resistant to Plaxlovid?
21:09  Do you wait to get the COVID vaccine after you’ve had COVID and how long should you wait?
22:25  What do you say to patients who have concerns about the COVID vaccine possibly triggering a flare?
25:27  Are there any issues with the shingles vax causing vasculitis?
27:22  Is there a particular time for immunocompromised patients to get the pneumococcal vaccine?

Vasculitis, Vaccinations, and Beyond
Recorded July 2023

View the slides:  http://tinyurl.com/yc78bc44

Dr. Yaseen begins her presentation by describing the functions of the immune system, target molecules in vasculitis, and infections in an immunocompromised host. She goes on to share her thoughts on recommendations for the COVID-19 vaccines for vasculitis patients and vaccines in general.

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
0:22 Functions of the immune system.
2:21 Target molecules in vasculitis.
3:19 American College of Rheumatology (ACR) vaccine guidelines for patients with rheumatic and musculoskeletal disorders.
4:05 Influenza vaccine.
5:30 Pneumococcal vaccine.
6:01 Immunosuppressants and vaccines.
6:33 COVID-19 infection.
9:25 Who are at risk for COVID-19 infection?
10:48 The COVID-19 vaccine.
14:46 Outpatient management strategy of immunocompromised patients for COVID-19.
15:34 Anti-viral therapy for COVID-19 infection.
18:30 Is it recommended to pause treatment before getting the COVID-19 vaccine?
19:57 Can we become resistant to Plaxlovid?
21:09 Do you wait to get the COVID vaccine after you’ve had COVID and how long should you wait?
22:25 What do you say to patients who have concerns about the COVID vaccine possibly triggering a flare?
25:27 Are there any issues with the shingles vax causing vasculitis?
27:22 Is there a particular time for immunocompromised patients to get the pneumococcal vaccine?

Vasculitis, Vaccinations, and Beyond
Recorded July 2023

View the slides: http://tinyurl.com/yc78bc44

Dr. Yaseen begins her presentation by describing the functions of the immune system, target molecules in vasculitis, and infections in an immunocompromised host. She goes on to share her thoughts on recommendations for the COVID-19 vaccines for vasculitis patients and vaccines in general.

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

5 10

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS40QzRDOEU0QUYwNUIxN0M1

Vasculitis, Vaccinations, and Beyond

0:00
0:52   Early use of glucocorticoids in vasculitis.
2:11   The Pexivas Trial.
3:08   The ADVOCATE Phase III Trial.
4:08   Targeted therapy in Giant Cell Arteritis.
5:16   Glucocorticoids:  The best/worst medication.
8:17   Are corticosteroids always necessary?
12:22  Adrenal insufficiency: why we taper so slowly.
15:11  Withdrawal symptoms vs. adrenal insufficiency. 
19:15   Can adrenal function be tested before you get to zero milligrams of prednisone?
20:24   Does taking prednisone result in an elevated lipid profile?
21:08   What is the eligibility to be on Avocopan if they have been on steroids for a long time?
23:11   What options exist if the adrenals no longer work?
24:51   What is considered a high dose of steroids?
26:26   What about the effect of steroids on bones and a loss of calcium?
28:38   What is considered “long-term use of steroids?”
29:34   Why do steroids cause weight gain?
30:13   What is the connection between fatigue and steroids?
31:35   Could you elaborate when you say that we’re getting closer to not needing steroids? Is this because of new medications?

Steroids, Adrenal Insufficiency, & Toxicity
Recorded July 2023

Dr. Villa-Forte and Dr. Kinanah Yaseen review the purpose and necessity of corticosteroids, side effects, tapering doses, and withdrawal symptoms versus adrenal insufficiency. They discuss treatment for vasculitis without steroids.

View slide presentation: http://tinyurl.com/3nr3hs7u

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
0:52 Early use of glucocorticoids in vasculitis.
2:11 The Pexivas Trial.
3:08 The ADVOCATE Phase III Trial.
4:08 Targeted therapy in Giant Cell Arteritis.
5:16 Glucocorticoids: The best/worst medication.
8:17 Are corticosteroids always necessary?
12:22 Adrenal insufficiency: why we taper so slowly.
15:11 Withdrawal symptoms vs. adrenal insufficiency.
19:15 Can adrenal function be tested before you get to zero milligrams of prednisone?
20:24 Does taking prednisone result in an elevated lipid profile?
21:08 What is the eligibility to be on Avocopan if they have been on steroids for a long time?
23:11 What options exist if the adrenals no longer work?
24:51 What is considered a high dose of steroids?
26:26 What about the effect of steroids on bones and a loss of calcium?
28:38 What is considered “long-term use of steroids?”
29:34 Why do steroids cause weight gain?
30:13 What is the connection between fatigue and steroids?
31:35 Could you elaborate when you say that we’re getting closer to not needing steroids? Is this because of new medications?

Steroids, Adrenal Insufficiency, & Toxicity
Recorded July 2023

Dr. Villa-Forte and Dr. Kinanah Yaseen review the purpose and necessity of corticosteroids, side effects, tapering doses, and withdrawal symptoms versus adrenal insufficiency. They discuss treatment for vasculitis without steroids.

View slide presentation: http://tinyurl.com/3nr3hs7u

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

13 5

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS4yQUJFNUVCMzVDNjcxRTlF

Steroids, Adrenal Insufficiency, & Toxicity

0:00 Welcome and introductions.
1:55 Current state of treatment for AAV. 
3:51 What are Monocytes? 
7:24 What is Alpha-1 Antitrypsin (A1AT)? 

Role of Monocytes
Recorded July 2023

Pulmonologist Lynn Fussner goes into detail on the work she is doing in ANCA-associated vasculitis (AAV), looking at advances in treatment, the role of monocytes and their relationship with alpha-1 antitrypsin, progress that has been made and next steps. Recorded July 2023 Presenter: Lynn Fussner, MD

------------------------------------------------------------------------------------------------
18:58 Welcome and introductions
19:09 Objective and background 
23:47 Conclusions 
26:27 Q&A: Do you think the time it will take to do research will be shortened or enhanced by artificial technology? 
28:42 Q&A: Should all patients with ANCA vasculitis see a cardiologist? 
30:14 Q&A: Do you think research into other autoimmune diseases will help us find breakthroughs in vasculitis?
 32:36 Q&A: Is it common for patients with MPA to first present with atrial fibrillation (AFib)

Alpha-1 Antitrypsin in ANCA-Associated Vasculitis
Recorded July 2023

Dr. Arévalo discusses the aim of her study, which is to assess the cardiovascular risk in patients with vasculitis and diabetes mellitus and understand whether the risk of cardiovascular disease in patients with vasculitis is as high as in those with diabetes mellitus. 

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00 Welcome and introductions.
1:55 Current state of treatment for AAV.
3:51 What are Monocytes?
7:24 What is Alpha-1 Antitrypsin (A1AT)?

Role of Monocytes
Recorded July 2023

Pulmonologist Lynn Fussner goes into detail on the work she is doing in ANCA-associated vasculitis (AAV), looking at advances in treatment, the role of monocytes and their relationship with alpha-1 antitrypsin, progress that has been made and next steps. Recorded July 2023 Presenter: Lynn Fussner, MD

------------------------------------------------------------------------------------------------
18:58 Welcome and introductions
19:09 Objective and background
23:47 Conclusions
26:27 Q&A: Do you think the time it will take to do research will be shortened or enhanced by artificial technology?
28:42 Q&A: Should all patients with ANCA vasculitis see a cardiologist?
30:14 Q&A: Do you think research into other autoimmune diseases will help us find breakthroughs in vasculitis?
32:36 Q&A: Is it common for patients with MPA to first present with atrial fibrillation (AFib)

Alpha-1 Antitrypsin in ANCA-Associated Vasculitis
Recorded July 2023

Dr. Arévalo discusses the aim of her study, which is to assess the cardiovascular risk in patients with vasculitis and diabetes mellitus and understand whether the risk of cardiovascular disease in patients with vasculitis is as high as in those with diabetes mellitus.

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

6 0

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS4yQjZFRkExQjFGODk3RUFD

Role of Monocytes and Alpha-1 Antitrypsin in ANCA-Associated Vasculitis

0:00
1:21  Understanding inflammation.
3:50   What is remission in vasculitis?
4:09   Remission with the skin, kidney, and lungs.
5:37   How long does it take to go into remission?
6:18   Is remission the same as a cure?
6:47   How can we tell if remission is present?
7:53   Looking at Giant Cell Arteritis.
8:49   Looking at GPA.
10:35  If I’m in remission why don’t I feel that great?
11:06  What is damage in vasculitis?
13:51  Does damage always occur?
14:02  Can the damage be reversed?
14:36  What is the relevance of damage to remission?
15:00   Why is it so important to determine if remission is present?
15:15   Will I have a relapse?
15:51   What triggers a relapse?
16:12   If a relapse occurs will it be the same as my diagnosis?
16:26   Something is new or worse.  Does that mean I’m having a relapse?
16:52   How do I achieve remission?
17:40   How long does maintenance medication need to be continued?
18:49   Is there anything I can do to prevent a relapse?
21:36   How do I know if my symptoms are indicating a relapse?
22:51   How would a patient know what symptoms need to be reported to their rheumatologist as opposed to just their PCP?
24:04   Can you be in remission if some of your consistently positive?

Remission: How Do We Get There
July 2023

In this presentation, Dr. Langford delves into what is meant by the idea of “remission.” She examines the interrelated terms of damage and relapse and briefly touches upon getting to remission and staying there, using questions and answers to illustrate the meaning of these concepts.

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
1:21 Understanding inflammation.
3:50 What is remission in vasculitis?
4:09 Remission with the skin, kidney, and lungs.
5:37 How long does it take to go into remission?
6:18 Is remission the same as a cure?
6:47 How can we tell if remission is present?
7:53 Looking at Giant Cell Arteritis.
8:49 Looking at GPA.
10:35 If I’m in remission why don’t I feel that great?
11:06 What is damage in vasculitis?
13:51 Does damage always occur?
14:02 Can the damage be reversed?
14:36 What is the relevance of damage to remission?
15:00 Why is it so important to determine if remission is present?
15:15 Will I have a relapse?
15:51 What triggers a relapse?
16:12 If a relapse occurs will it be the same as my diagnosis?
16:26 Something is new or worse. Does that mean I’m having a relapse?
16:52 How do I achieve remission?
17:40 How long does maintenance medication need to be continued?
18:49 Is there anything I can do to prevent a relapse?
21:36 How do I know if my symptoms are indicating a relapse?
22:51 How would a patient know what symptoms need to be reported to their rheumatologist as opposed to just their PCP?
24:04 Can you be in remission if some of your consistently positive?

Remission: How Do We Get There
July 2023

In this presentation, Dr. Langford delves into what is meant by the idea of “remission.” She examines the interrelated terms of damage and relapse and briefly touches upon getting to remission and staying there, using questions and answers to illustrate the meaning of these concepts.

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

13 2

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS41MzY4MzcwOUFFRUU3QzEx

Remission: How Do We Get There

0:00
1:26  How do your medical visits go?  A question to start this discussion.
3:01  Your health journey.
6:20   Self-advocacy.
11:09  Go to your doctor's visit prepared!
13:54  Telehealth visits.
15:09  What if things get tense?  What if we disagree?
17:32  Working with providers.  Are you being honest?
18:47  Effective communication: Is your provider listening?
22:18  Can we talk about second opinions?
24:41  The breakup.
28:13  Don’t be Columbo at the end of your doctor's visit!
30:45  What should I do if my symptoms do not appear in my medical chart?
37:21  Who is ultimately responsible for tracking and knowing when my regular safety labs need to be done?  Is that my responsibility or my doctor’s?
39:01   Accessing the doctor's appointment.  Did it achieve my goals of understanding past, present, and future?
40:43   I’m a nurse recently diagnosed with vasculitis.  It has been a life-changing journey.

Making the Most of Your Appointment  What to Know and How to Communicate
Recorded July 2023

Your relationship with your doctors takes on greater importance as a patient with vasculitis. Dr. Amudala shares her tips on how to make the most of a 15-minute, in-person or telehealth visit. Other topics include how to ask the right questions, keeping a record of your symptoms, and your rights as a patient.
Naomi Amudala, RN, FNP-BC, Nurse Practitioner, Penn Scleroderma Center  
Jenn Gordon, PhD, Co-Investigator, VPPRN

View the slides:  http://tinyurl.com/bdffpfnx

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
1:26 How do your medical visits go? A question to start this discussion.
3:01 Your health journey.
6:20 Self-advocacy.
11:09 Go to your doctor's visit prepared!
13:54 Telehealth visits.
15:09 What if things get tense? What if we disagree?
17:32 Working with providers. Are you being honest?
18:47 Effective communication: Is your provider listening?
22:18 Can we talk about second opinions?
24:41 The breakup.
28:13 Don’t be Columbo at the end of your doctor's visit!
30:45 What should I do if my symptoms do not appear in my medical chart?
37:21 Who is ultimately responsible for tracking and knowing when my regular safety labs need to be done? Is that my responsibility or my doctor’s?
39:01 Accessing the doctor's appointment. Did it achieve my goals of understanding past, present, and future?
40:43 I’m a nurse recently diagnosed with vasculitis. It has been a life-changing journey.

Making the Most of Your Appointment What to Know and How to Communicate
Recorded July 2023

Your relationship with your doctors takes on greater importance as a patient with vasculitis. Dr. Amudala shares her tips on how to make the most of a 15-minute, in-person or telehealth visit. Other topics include how to ask the right questions, keeping a record of your symptoms, and your rights as a patient.
Naomi Amudala, RN, FNP-BC, Nurse Practitioner, Penn Scleroderma Center 
Jenn Gordon, PhD, Co-Investigator, VPPRN

View the slides: http://tinyurl.com/bdffpfnx

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

6 3

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5DNkMwRUI2MkI4QkI4NDFG

Making the Most of Your Appointment What to Know and How to Communicate

0:00
1:26  After a diagnosis: Fear of illness returning or getting worse.
4:55  Uncertainty with mental health in systemic autoimmune rheumatic diseases.
6:47  Fear of cancer returning: A model examination of physical symptoms and emotional distress.
9:51  Use of mind-body practices among cancer survivors.
14:00  Stress management and resiliency training.
18:22  Grand Rounds: “Taming the fear of recurrence monster” in cancer.
21:39  Managing fear and worry in illness.
22:18  Brief techniques to induce the relaxation response.
23:30  Setting aside a “worry time”.
26:01  Idealized self-imagery.
28:15 Cognitive Behavioral Therapy for insomnia.
30:45  Skill 1:  Stimulus Control.
31:42  Skill 2:  Sleep restriction.
32:52  Skill 3:  Sleep hygiene.
33:43: Skill 4:  Relaxation training.
35:17  Can a lack of sleep increase pain?
36:49  Is it possible to participate in your SMART Program virtually? 

Approaches to Managing Sleep, Pain, Fatigue and Uncertainty in Vasculitis
Recorded July 2023

After the diagnosis of a chronic or life-threatening illness, it’s quite common for there to be stress. Patients often don’t have a clear explanation for what’s going on in their bodies, there’s a lack of information, and a complex medical system to navigate, which can cause a lot of uncertainty. Dr. Hall looks at the types of uncertainties experienced by rheumatological patients, their association with anxiety, depression, and sickness impact, and how to address these feelings.
Daniel Hall, PhD, Staff Psychologist 
Massachusetts General Hospital

View the slide presentation:  http://tinyurl.com/2xhkkx4v

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
1:26 After a diagnosis: Fear of illness returning or getting worse.
4:55 Uncertainty with mental health in systemic autoimmune rheumatic diseases.
6:47 Fear of cancer returning: A model examination of physical symptoms and emotional distress.
9:51 Use of mind-body practices among cancer survivors.
14:00 Stress management and resiliency training.
18:22 Grand Rounds: “Taming the fear of recurrence monster” in cancer.
21:39 Managing fear and worry in illness.
22:18 Brief techniques to induce the relaxation response.
23:30 Setting aside a “worry time”.
26:01 Idealized self-imagery.
28:15 Cognitive Behavioral Therapy for insomnia.
30:45 Skill 1: Stimulus Control.
31:42 Skill 2: Sleep restriction.
32:52 Skill 3: Sleep hygiene.
33:43: Skill 4: Relaxation training.
35:17 Can a lack of sleep increase pain?
36:49 Is it possible to participate in your SMART Program virtually?

Approaches to Managing Sleep, Pain, Fatigue and Uncertainty in Vasculitis
Recorded July 2023

After the diagnosis of a chronic or life-threatening illness, it’s quite common for there to be stress. Patients often don’t have a clear explanation for what’s going on in their bodies, there’s a lack of information, and a complex medical system to navigate, which can cause a lot of uncertainty. Dr. Hall looks at the types of uncertainties experienced by rheumatological patients, their association with anxiety, depression, and sickness impact, and how to address these feelings.
Daniel Hall, PhD, Staff Psychologist
Massachusetts General Hospital

View the slide presentation: http://tinyurl.com/2xhkkx4v

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

8 0

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS4zQzFBN0RGNzNFREFCMjBE

Approaches to Managing Sleep, Pain, Fatigue and Uncertainty in Vasculitis

0:00
1:34  Remarkable changes in the treatment of GPA.
2:34  The role of Rituximab.
4:57  In your practice what markers do you look at to make your decisions?
8:23  Putting out the fire of inflammation. But what about the “embers”?
9:18  Induction and maintenance therapy.
11:15  The issue of not having GPA come back again.
13:10  Managing sub-glottic and tracheal stenosis when flaring.
17:12  Clinical features of ANCA-associated vasculitis.
18:44   GPA and MPA
19:06  Subclassifying AAV:  clinical and prognostic information
20:32  Treatment of ANCA-associated vasculitis
21:55  Could you comment on the use of bactrim in the treatment of subglottic stenosis?
25:00  Explaining Bactrim.
27:29  Is there any updated information on Avocopan and combining it with prednisone, or rituximab?
31:06  Avocopan has been well-studied with ANCA-positive patients.  Can you comment on testing Avocopan with ANCA-negative vasculitis?
39:11  What are the long-term effects of rituximab on young adults?
42:17  Research into possible treatment for people allergic to rituximab.
42:46  Looking into CAR T-cell therapy.
44:06  What do you think of a chronic low dose of prednisone?
52:44  What are some early symptoms of sub-glottic stenosis?

Granulomatosis with Polyangiitis
Recorded July 2023

In a Q&A format, Drs. Merkel, Berti, and Stein answer general questions from the audience about GPA, treatments, new ideas in research, individual manifestations and the progress that has been made over the years.  Peter A. Merkel, MD, MPH University of Pennsylvania.

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
1:34 Remarkable changes in the treatment of GPA.
2:34 The role of Rituximab.
4:57 In your practice what markers do you look at to make your decisions?
8:23 Putting out the fire of inflammation. But what about the “embers”?
9:18 Induction and maintenance therapy.
11:15 The issue of not having GPA come back again.
13:10 Managing sub-glottic and tracheal stenosis when flaring.
17:12 Clinical features of ANCA-associated vasculitis.
18:44 GPA and MPA
19:06 Subclassifying AAV: clinical and prognostic information
20:32 Treatment of ANCA-associated vasculitis
21:55 Could you comment on the use of bactrim in the treatment of subglottic stenosis?
25:00 Explaining Bactrim.
27:29 Is there any updated information on Avocopan and combining it with prednisone, or rituximab?
31:06 Avocopan has been well-studied with ANCA-positive patients. Can you comment on testing Avocopan with ANCA-negative vasculitis?
39:11 What are the long-term effects of rituximab on young adults?
42:17 Research into possible treatment for people allergic to rituximab.
42:46 Looking into CAR T-cell therapy.
44:06 What do you think of a chronic low dose of prednisone?
52:44 What are some early symptoms of sub-glottic stenosis?

Granulomatosis with Polyangiitis
Recorded July 2023

In a Q&A format, Drs. Merkel, Berti, and Stein answer general questions from the audience about GPA, treatments, new ideas in research, individual manifestations and the progress that has been made over the years.  Peter A. Merkel, MD, MPH University of Pennsylvania.

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

62 10

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5GNDg1Njc1QzZERjlFRjE5

Granulomatosis with Polyangiitis

0:00
1:06  Introducing Sebastian Unizony, MD.
2:39  What is Giant Cell Arteritis (GCA)?
4:28  How GCA commonly presents.
9:46  Options to make a diagnosis.
12:34  Current treatments.
13:38  Questions about GCA. 
14:20  Q:  After being on a treatment plan for two years with no flares is there a chance of losing vision as prednisone is reduced?
16:42   Q: Temporal artery ultrasound and other advanced imaging techniques are they not subject to the “skipping” that biopsies can be subject to, and miss the diagnosis?
18:18  Q: What is the most common diagnostic test used for monitoring ongoing disease?
20:11  Q:  Are there any genetic depositions for GCA?
21:38  Q:  Can you talk about the relapse rate for GCA?
23:57  Audience Survey: Experience with clinical studies.
25:06  Understanding clinical trials.
26:27  Studying treatment options for GCA.
27:08  Understanding random controlled  trials (RCT)
28:23  Clinical Trials 101-- A Glossary.
34:46  Ethical and scientific principles and guidelines.
38:30  Vasculitis clinical trials.
39:41  Recent clinical trials, current clinical trials, future perspectives.
40:34  Abatacept (orenica) for GCA.
41:25  Mavrilimumab for GCA.
42:06  Secukinumab (consentyx) for GCA.
43:53  Ongoing study of abatacept.
44:13  Ongoing study of upadacitinib (rinvoq).
44:20  Ongoing study of guselkumab (tremfya).
44:37  Ongoing study of tozcilizumab and methotrexate.
44:52  GUSTO Study (Switzerland) Can we use less than six months of steroids?
47:30  Ultimate goal of clinical trials in GCA in the near future.
49:03  Three online resources.
50:06  What is the difference between clinical studies and research?
51:27  Are newly diagnosed patients allowed to participate in clinical studies?
            What role does a treating physician play in clinical studies?
54:27  Why should I participate in a clinical study if my current treatment protocol is working?
57:21  Are there any post-morten studies being conducted?
58:47   Thank you and wrap up.

GCA and GCA Clinical Trials
Recorded January 2024

A diagnosis of Giant Cell Arteritis (GCA) often brings more questions than answers. It also presents an opportunity for patients to change the trajectory of living with this disease for themselves and others. As patients seek to navigate this disease, they can join the collective effort for better treatments and a cure by participating in research, like the current GCA clinical studies through the National Institute of Health (NIH).  

In this one-hour live webinar, Sebastian Unizony, MD, will take audience questions about GCA. He will also discuss some of the exciting GCA clinical research studies. 
 You will learn:
·       A brief, clinical overview of GCA, covering diagnosis, treatment, and management of this vasculitis. A Q&A will follow the presentation.
·       What is typically involved in clinical studies and why patient participation is so critical for their success?
Finally, Dr. Unizony will discuss a few of these studies especially focused on GCA. 

Download a PDF copy of the webinar presentation: https://www.vasculitisfoundation.org/wp-content/uploads/2024/01/Unizony_GCA-webinar-01_26_2024FV.pdf

Expand your knowledge of vasculitis.  Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

0:00
1:06 Introducing Sebastian Unizony, MD.
2:39 What is Giant Cell Arteritis (GCA)?
4:28 How GCA commonly presents.
9:46 Options to make a diagnosis.
12:34 Current treatments.
13:38 Questions about GCA.
14:20 Q: After being on a treatment plan for two years with no flares is there a chance of losing vision as prednisone is reduced?
16:42 Q: Temporal artery ultrasound and other advanced imaging techniques are they not subject to the “skipping” that biopsies can be subject to, and miss the diagnosis?
18:18 Q: What is the most common diagnostic test used for monitoring ongoing disease?
20:11 Q: Are there any genetic depositions for GCA?
21:38 Q: Can you talk about the relapse rate for GCA?
23:57 Audience Survey: Experience with clinical studies.
25:06 Understanding clinical trials.
26:27 Studying treatment options for GCA.
27:08 Understanding random controlled trials (RCT)
28:23 Clinical Trials 101-- A Glossary.
34:46 Ethical and scientific principles and guidelines.
38:30 Vasculitis clinical trials.
39:41 Recent clinical trials, current clinical trials, future perspectives.
40:34 Abatacept (orenica) for GCA.
41:25 Mavrilimumab for GCA.
42:06 Secukinumab (consentyx) for GCA.
43:53 Ongoing study of abatacept.
44:13 Ongoing study of upadacitinib (rinvoq).
44:20 Ongoing study of guselkumab (tremfya).
44:37 Ongoing study of tozcilizumab and methotrexate.
44:52 GUSTO Study (Switzerland) Can we use less than six months of steroids?
47:30 Ultimate goal of clinical trials in GCA in the near future.
49:03 Three online resources.
50:06 What is the difference between clinical studies and research?
51:27 Are newly diagnosed patients allowed to participate in clinical studies?
What role does a treating physician play in clinical studies?
54:27 Why should I participate in a clinical study if my current treatment protocol is working?
57:21 Are there any post-morten studies being conducted?
58:47 Thank you and wrap up.

GCA and GCA Clinical Trials
Recorded January 2024

A diagnosis of Giant Cell Arteritis (GCA) often brings more questions than answers. It also presents an opportunity for patients to change the trajectory of living with this disease for themselves and others. As patients seek to navigate this disease, they can join the collective effort for better treatments and a cure by participating in research, like the current GCA clinical studies through the National Institute of Health (NIH).

In this one-hour live webinar, Sebastian Unizony, MD, will take audience questions about GCA. He will also discuss some of the exciting GCA clinical research studies.
You will learn:
· A brief, clinical overview of GCA, covering diagnosis, treatment, and management of this vasculitis. A Q&A will follow the presentation.
· What is typically involved in clinical studies and why patient participation is so critical for their success?
Finally, Dr. Unizony will discuss a few of these studies especially focused on GCA.

Download a PDF copy of the webinar presentation: https://www.vasculitisfoundation.org/wp-content/uploads/2024/01/Unizony_GCA-webinar-01_26_2024FV.pdf

Expand your knowledge of vasculitis. Visit the Vasculitis Foundation website at: https://www.vasculitisfoundation.org/

19 7

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS4xOTEzQzhBQzU3MDNDNjcz

GCA and Current Clinical Trials

The Heart and Vasculitis_ Q&A

Thank You To Our Webinar Sponsors