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0:00 
1:13 How can vasculitis and the medication affect our physical and sexual interest?
7:11 After I began taking prednisone my mood swings, and especially my body image (I gained 15lbs) drained me of any interest in intimate or even romantic activity.  Is this normal?
12:57 My question is, how do you find a balance with loved ones when you feel like you are a burden?
16:02 I was dating a guy for three years. I was diagnosed with GPA during that time.  My boyfriend became resentful because I wasn’t the same person he knew when we began dating.  
18:44 For people having vasculitis, GPA for example, is their life expectancy shortened due to the disease always being there?
22:23 My husband and I want to have a baby, but I’m getting more anxious, concerned, and doubtful if we should do it.  I have active EGPA.  What are the physical risks to both myself and the baby?
25:29 How does vasculitis affect our GI systems?  I lost my colon; I have an ileostomy stoma. I have gastroparesis.  Intimacy has been a major problem.
30:29 I am a male with testicular pain from my vasculitis.  It makes intimacy almost impossible with my wife.  Is this common with men who have vasculitis?
35:24 How vasculitis helped me to find the perfect partner.

Asking Sensitive Questions about Vasculitis
October 2024

Additional Resources:
Webinar on Parenting with Vasculitis https://youtu.be/UJeNqz0EJVA

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

Webinar on Dating with a Chronic Illness https://youtu.be/OJYGkMxcbFQ

Webinar on Navigating Relationships with a Chronic Illness https://youtu.be/Dlz4HWFcb20

 Sex-Interrupted: Igniting Intimacy While Living with Illness or Disability by Iris Zink & Jenny Palter

Come As You Are by Emily Nagoski, her Podcasts, and her new book: Come Together

A free PDF guide  from the United Ostomy Associations of America
https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf

0:00
1:13 How can vasculitis and the medication affect our physical and sexual interest?
7:11 After I began taking prednisone my mood swings, and especially my body image (I gained 15lbs) drained me of any interest in intimate or even romantic activity. Is this normal?
12:57 My question is, how do you find a balance with loved ones when you feel like you are a burden?
16:02 I was dating a guy for three years. I was diagnosed with GPA during that time. My boyfriend became resentful because I wasn’t the same person he knew when we began dating.
18:44 For people having vasculitis, GPA for example, is their life expectancy shortened due to the disease always being there?
22:23 My husband and I want to have a baby, but I’m getting more anxious, concerned, and doubtful if we should do it. I have active EGPA. What are the physical risks to both myself and the baby?
25:29 How does vasculitis affect our GI systems? I lost my colon; I have an ileostomy stoma. I have gastroparesis. Intimacy has been a major problem.
30:29 I am a male with testicular pain from my vasculitis. It makes intimacy almost impossible with my wife. Is this common with men who have vasculitis?
35:24 How vasculitis helped me to find the perfect partner.

Asking Sensitive Questions about Vasculitis
October 2024

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

Sex-Interrupted: Igniting Intimacy While Living with Illness or Disability by Iris Zink & Jenny Palter

Come As You Are by Emily Nagoski, her Podcasts, and her new book: Come Together

A free PDF guide from the United Ostomy Associations of America
https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf

27 8

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLnA2YTgzY25NcmVF

Asking Sensitive Questions About Vasculitis

vasculitisfoundation October 23, 2024 8:04 pm

Q&A: Environment and Vasculitis

vasculitisfoundation October 10, 2024 5:00 pm

0:00
5:47 Lab testing.
7:11 Complete Blood Count (CBC)
9:58 Complete Blood Count in Vasculitis
11:52 CBC and treatment
12:49 Inflammatory markers
15:50 Increased ESR
17:52 Increased ESR:  Other influences on this test
21:00 Role of CRP
21:28 C-reactive protein
24:22 Urinalysis testing
28:14 Complete metabolic profile: kidney and liver function testing
31:15 ANCA Associated Vasculitis testing
32:41 c-ANCA  and p-ANCA
34:27 ANCA in non-vasculitis syndrome
35:53 IgA (immunoglobulin A) vasculitis
36:58 Cryoglobulinemic vasculitis
39:44 Q:  My MCV and MCH can fluctuate at times.  Can any of our medications cause this?
40:27 Q: Is the PR-3 test a good indicator of inflammation and vasculitis?
41:19 Q: What if p-ANCA and c-ANCA are negative, but MPO is positive? What could that indicate?
42:17 Q:  Should both a routine UA and a Comprehensive Metabolic Panel always be performed or will the latter suffice? 
43:34 Q:  How often should I have a urinalysis done?
45:20 Q: Why would 2 tests for urine protein/blood, reflexive microscopic show normal results but a 'clean catch' show abnormal results for the same urine sample? 
47:07 Q:  How are blood tests affected or reflected by Actemra, specifically CRP?
48:05 Q:  I am on Rituxan and my ANCA is negative, is that because I am on treatment.
48:43 Q:  How do I read B cell count in lab results? My doctor asked for this before next Rituximab infusion.
50:32 Q: Regarding eosinophils is absolute or percentage better for reporting?
51:33 Q:  My monocyte percent is always high and my lymphocyte percent is always low. Is that from Rituxan
52:19 Q:  Can COVID affect your inflammation rates on these tests?
53:26 Q:  Can you explain Anion Gap?
55:34 Q:  What is Albumin and does it mean anything to Vasculitis patients?
57:09 Q:  The doctor mentioned meds to mitigate urine protein, what are those?

Understanding Your Lab Results
October 2024

Download a PDF of the slide deck from this webinar:  https://www.vasculitisfoundation.org/wp-content/uploads/2024/10/Vasculitis-webinarUpdated_.pdf

0:00
5:47 Lab testing.
7:11 Complete Blood Count (CBC)
9:58 Complete Blood Count in Vasculitis
11:52 CBC and treatment
12:49 Inflammatory markers
15:50 Increased ESR
17:52 Increased ESR: Other influences on this test
21:00 Role of CRP
21:28 C-reactive protein
24:22 Urinalysis testing
28:14 Complete metabolic profile: kidney and liver function testing
31:15 ANCA Associated Vasculitis testing
32:41 c-ANCA and p-ANCA
34:27 ANCA in non-vasculitis syndrome
35:53 IgA (immunoglobulin A) vasculitis
36:58 Cryoglobulinemic vasculitis
39:44 Q: My MCV and MCH can fluctuate at times. Can any of our medications cause this?
40:27 Q: Is the PR-3 test a good indicator of inflammation and vasculitis?
41:19 Q: What if p-ANCA and c-ANCA are negative, but MPO is positive? What could that indicate?
42:17 Q: Should both a routine UA and a Comprehensive Metabolic Panel always be performed or will the latter suffice?
43:34 Q: How often should I have a urinalysis done?
45:20 Q: Why would 2 tests for urine protein/blood, reflexive microscopic show normal results but a 'clean catch' show abnormal results for the same urine sample?
47:07 Q: How are blood tests affected or reflected by Actemra, specifically CRP?
48:05 Q: I am on Rituxan and my ANCA is negative, is that because I am on treatment.
48:43 Q: How do I read B cell count in lab results? My doctor asked for this before next Rituximab infusion.
50:32 Q: Regarding eosinophils is absolute or percentage better for reporting?
51:33 Q: My monocyte percent is always high and my lymphocyte percent is always low. Is that from Rituxan
52:19 Q: Can COVID affect your inflammation rates on these tests?
53:26 Q: Can you explain Anion Gap?
55:34 Q: What is Albumin and does it mean anything to Vasculitis patients?
57:09 Q: The doctor mentioned meds to mitigate urine protein, what are those?

32 6

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLm90OVN6aVpHOGZV

Understanding Your Lab Results

vasculitisfoundation October 8, 2024 6:00 pm

Is Your Vasculitis Well Controlled and Which Doctors Should be Involved

vasculitisfoundation October 3, 2024 5:49 pm

0:00
4:05 Varicella Zoster Virus
5:40 Herpes Zoster/Shingles
6:32 Lifetime risk of Herpes Zoster (HZ)
7:30 Complications after Herpes Zoster (HZ)
8:27 Treatments
9:27 Immunosuppression and HZ
10:30 Recombinant Zoster Vaccine – Shingles
12:37 Current recommendations for vaccination
13:02 Understanding Reactogenicity
14:06 Adverse Effects – Clinical Trials
14:51 Safety in immunocompromised patients
15:55 Results: IMID flares
17:40 Commonly heard from patients: “I don’t need/want RZV because….”
18:27 Common patient concerns
21:26 Q: What is the efficacy after you received the two vaccines?
23:04 Q:  I am on Rituxan regiment every 6 months  What is the optimal time to receive the vaccine?
24:09 Q: Why did I get sick after each of the two Shindrex shots?  it was like the flu with each one.
25:42 Q:  How long after you’ve had the shingles should you receive Shingrix?
26:24 Q:  Is there a time frame once a shingles outbreak begins in which you should get a starter on acyclovir or the other medicine to maximize effectiveness?
27:10 Q: Can the doctor explain why shingles can just affect one-half of the body?  How is this tied into the brain and neurological function?
28:40 Q:  Is there a risk to the eye from shingles?
29:44 Q: I had shingles in 2019, a shingles vaccine (2 shots) in 2022 and then I was just diagnosed with shingles in 2024.  Is that common?
30:30 Q:   I had my 2 shingles vaccines in 2022. I was diagnosed this year with Vasculitis this year. I had 2 infusions of Rituximab and was told they worked (whatever that means) and no more infusions. Currently on Imuran for the Vasculitis. Am I still prone to shingles?
31:26 Q:  How does the occurrence break out by gender?
31:47 Q:  Is it okay to take the shingles vaccine while getting the COVID or flu vax?
32:59 Q:  Can stress by itself cause an outbreak of shingles?
34:26 Q:  Is it true that shingles can be transmitted through the air, or by touch?
35:36 Q:  Is there any relationship between herpes zoster and herpes simplex?
37:03 Q:  Is it true that parents used to hold chickenpox sleepovers to help children get chickenpox?
39:46 Q:.I was the one that had singles, the vaccine and then I got shingles again this year.  Should I get another vaccine?
41:24 Q:  Are those who tend to get cold sores (and had chicken pox as a child) on the mouth also more prone to get shingles?

Shingles: What you need to know.
Recorded September 2024

Download Dr. Calabrese's slide presentation:  https://www.vasculitisfoundation.org/wp-content/uploads/2024/09/HZ-for-Vasc-foundation-9.9.24-final-CC.pdf

0:00
4:05 Varicella Zoster Virus
5:40 Herpes Zoster/Shingles
6:32 Lifetime risk of Herpes Zoster (HZ)
7:30 Complications after Herpes Zoster (HZ)
8:27 Treatments
9:27 Immunosuppression and HZ
10:30 Recombinant Zoster Vaccine – Shingles
12:37 Current recommendations for vaccination
13:02 Understanding Reactogenicity
14:06 Adverse Effects – Clinical Trials
14:51 Safety in immunocompromised patients
15:55 Results: IMID flares
17:40 Commonly heard from patients: “I don’t need/want RZV because….”
18:27 Common patient concerns
21:26 Q: What is the efficacy after you received the two vaccines?
23:04 Q: I am on Rituxan regiment every 6 months What is the optimal time to receive the vaccine?
24:09 Q: Why did I get sick after each of the two Shindrex shots? it was like the flu with each one.
25:42 Q: How long after you’ve had the shingles should you receive Shingrix?
26:24 Q: Is there a time frame once a shingles outbreak begins in which you should get a starter on acyclovir or the other medicine to maximize effectiveness?
27:10 Q: Can the doctor explain why shingles can just affect one-half of the body? How is this tied into the brain and neurological function?
28:40 Q: Is there a risk to the eye from shingles?
29:44 Q: I had shingles in 2019, a shingles vaccine (2 shots) in 2022 and then I was just diagnosed with shingles in 2024. Is that common?
30:30 Q: I had my 2 shingles vaccines in 2022. Was diagnosed this year with Vasculitis this year. I had 2 infusions of Rituximab and was told they worked (whatever that means) and no more infusions. Currently on Imuran for the Vasculitis. Am I still prone to shingles?
31:26 Q: How does the occurrence break out by gender?
31:47 Q: Is it okay to take the shingles vaccine while getting the COVID or flu vax?
32:59 Q: Can stress by itself cause an outbreak of shingles?
34:26 Q: Is it true that shingles can be transmitted through the air, or by touch?
35:36 Q: Is there any relationship between herpes zoster and herpes simplex?
37:03 Q: Is it true that parents used to hold chickenpox sleepovers to help children get chickenpox?
39:46 Q:.I was the one that had singles, the vaccine and then I got shingles again this year. Should I get another vaccine?
41:24 Q: Are those who tend to get cold sores (and had chicken pox as a child) on the mouth also more prone to get shingles?

Shingles: What you need to know.
Recorded September 2024

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YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLkVBTFJOMm0wdGZR

Shingles: What You Need to Know.

vasculitisfoundation September 10, 2024 7:05 pm

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

Download a PDF of Dr. Katz's slide presentation:  https://www.vasculitisfoundation.org/wp-content/uploads/2024/08/NEW-VF-Environmental-Triggers-002.pdf

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

35 0

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLkxfNFBDMFZpRm1j

The Environment and Vasculitis: A Closer Look

vasculitisfoundation August 26, 2024 5:32 pm

VF Patient Roundtable: Dealing with Vasculitis Cringe Questions

vasculitisfoundation July 31, 2024 6:40 pm

Aches, Pains, and Love: Navigating Relationships While Living with Chronic Illness

vasculitisfoundation July 24, 2024 9:21 pm

VF Quick Learn: What is Plasma Exhange?

vasculitisfoundation July 3, 2024 12:47 pm

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.

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.

39 4

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLlNwa2xmZWtSSExj

What You Need to Know About Adrenal Insufficiency

vasculitisfoundation June 29, 2024 2:33 pm