Reproductive Health

Minimizing Pregnancy Complications in Vasculitis
Recorded December 2022

The Vasculitis Patient-Powered Research Network (VPPRN).
The goal of the VPPRN’s research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis. The secondary objective is to assess the impact that vasculitis activity and medical therapy has on pregnancy outcomes.
If you are pregnant and have vasculitis, consider enrolling in our vasculitis pregnancy registry (VPREG).
Visit: www.vasculitisfoundation.org/vpreg/

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Fertility and Vasculitis
Recorded December 2022


The Vasculitis Patient-Powered Research Network (VPPRN).
The goal of the VPPRN’s research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis. The secondary objective is to assess the impact that vasculitis activity and medical therapy has on pregnancy outcomes.
If you are pregnant and have vasculitis, consider enrolling in our vasculitis pregnancy registry (VPREG).
Visit: www.vasculitisfoundation.org/vpreg/

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Vasculitis and Planning for Birth Control
Recorded December 2022

The Vasculitis Patient-Powered Research Network (VPPRN).
The goal of the VPPRN’s research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis. The secondary objective is to assess the impact that vasculitis activity and medical therapy has on pregnancy outcomes.
If you are pregnant and have vasculitis, consider enrolling in our vasculitis pregnancy registry (VPREG).
Visit: www.vasculitisfoundation.org/vpreg/

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Birth Control Options for Men with Vasculitis
Recorded December 2022

The Vasculitis Patient-Powered Research Network (VPPRN).
The goal of the VPPRN’s research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis. The secondary objective is to assess the impact that vasculitis activity and medical therapy has on pregnancy outcomes.
If you are pregnant and have vasculitis, consider enrolling in our vasculitis pregnancy registry (VPREG).
Visit: www.vasculitisfoundation.org/vpreg/

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Birth Control Options for Women with Vasculitis
Recorded December 2022

The Vasculitis Patient-Powered Research Network (VPPRN).
The goal of the VPPRN’s research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis. The secondary objective is to assess the impact that vasculitis activity and medical therapy has on pregnancy outcomes.
If you are pregnant and have vasculitis, consider enrolling in our vasculitis pregnancy registry (VPREG).
Visit: www.vasculitisfoundation.org/vpreg/

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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://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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“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
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

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After a vasculitis diagnosis, it often feels like you are navigating the unknown. But that’s when people living with vasculitis tap into their superpowers of strength, hope, and resilience – and they get connected to the vasculitis community. Meet our 2023 Patient Hero winners. Their stories inspire hope and help others feel less alone.
Watch their stories: https://vasculitisfoundation.org/vf-patient-heroes-2023-links/

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This presentation will cover how vasculitis may effect women differently from men including the reproductive life cycle and hormonal impact.

Welcome and introductions. 0:17
Health-related quality of life issues for patients with vasculitis. 5:35
Impact on Women: Four dimensions. 8:07
Treatment of ANCA-Associated Vasculitis 8:24
Fertility and Cyclophosphamide. 10:49
The Effect of Vasculitis on Pregnancy 13:33
Pregnancy and Treatment. 18:02
Pregnancy and Biologics. 19:24
Pregnancy Tips. 20:23
Menopause and Cyclophosphamide 21:44
Menopause Tips. 25:53
Sexuality in Rheumatic Diseases 26:28
Sexual Dysfuction and Behcet’s Disease. 28:42
Vascular Impairment and Sexual Dysfunction. 29:43
Summary of key points on fertility and vasculitis. 31:10
Q&A: I no longer have monthly bloods taken because my numbers for ANCA don’t spike. Should I be concerned that I’m not being monitored? 32:48
Q&A: Is it common to feel extremely hot and overheated when I exercise. Is this common with vasculitis? 35:04
Q&A: How can EGPA affect menopause? 37:29
Q&A: Do you know what the long term effects are for the biologic, Q&A: Do you know what the long term effects are for the biologic XOLAIR® (omalizumab) 39:35
Q&A: Is pregnancy a concern for people with only minor symptoms of Behcets? 42:12
Q&A: Do you have any suggestions on how to gain weight when managing vasculitis? 45:07
Q&A: What are concerns with small cell vasculitis? 47:16

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