Vasculitis Remission and Relapse Q&A

0:00
2:43 Is Rituximab still one of the best treatments for vasculitis?
5:50 What are the long-term effects of methotrexate used for maintenance?
7:05 Are ANCA fluctuations in my labs a sign of relapse?
8:51 Is remission possible after being symptomatic for 20+ years?
10:05 Should we come up with a better term than remission when it comes to vasculitis?
12:06 I’ve had two infusions of Rituximab two weeks apart. How soon could it be until there is an effect from the Rituximab?
13:12 Can blood markers from MPA indicate whether it’s no longer in remission?
15:01 After 13 years I’m completely off of my meds. How often should I see my rheumatologist?
15:50 I have a saddle nose deformity. Is it a bad idea to do surgery before remission?
19:16 Kathy, when you started to relapse what labs changed that indicated a problem?
22:01 Kathy, what was your best support during relapse? 22:01
Vasculitis Remission and Relapse Q&A
Recorded May 2023

[@Hilophil]

Thank you for this presentation by Doctor Jayne, Doctor Hinojosa, Doctor Nares and thank you Kathy Olevsky. I just watched it on KZbin and will stay tuned for the upcoming presentations. Very helpful and very appreciated.

[@vasculitisfoundation]

We are so glad you found this presentation helpful. If you are not already aware, you can find additional resources such as videos, information about virtual support groups, and more on our website www.vasculitisfoundation.org

[@christinahanson6789]

Wow, great info... My heads spinning, my wife is recently diagnosed with vasculitis, and we know nothing about it. So we are trying to learn as much as possible.. thank you for these videos!

[@vasculitisfoundation]

We are glad you found this video helpful. It is a lot to take in. Sorry to hear about your wife's recent diagnosis, but you will both find a very supportive vasculitis community at the vasculitis foundation. We have several virtual support groups for people living with vasculitis and their families/care partners as well as additional resources on our website. Find out more about support groups here www.vasculitisfoundation.org/virtual-support-meetings/ Sign-up for our monthly Enews letter to stay on top of the latest vasculitis information here www.vasculitisfoundation.org/subscribe-to-vf-e-news/

[@boloto_moe]

thank you for your hard work! you are very helpful

[@vasculitisfoundation]

We are glad you found this helpful. You can find additional resources on our website www.vasculitisfoundation.org

[@paigemccormick6519]

What about nutrition and GPA? As an in-patient I was kept on the "renal" diet with regard to sodium, phosphorus, and potassium, but ignoring intake of carbs, chemical substitutes, and the value of healthy fats. There is so much available to promote kidney, insulin, and biome health that is not addressed by allopathic treatment. Is it simply a matter of overcoming the the autoimmune storm, and then applying careful nutrition principles, including intermittent fasting, elimination of suspected sensitivities (gluten, lectins, oxylates)? And another thing: my sense of taste and appetite are way off! Taste: disgusting. Appetite: very little. I have my own tricks to explore and eat about 1000 calories per day. I was diagnosed 4 months ago at this writing. I have been very surprised by this whole experience, although appreciative of the support and above-average body of literature and care.

[@vasculitisfoundation]

Great questions. Vasculitis inflammation, especially at the level of inflammation that is found in active GPA, cannot be controlled though diet alone. However, many people have found that applying principles of nutrition can help their bodies heal and may help keep the vasculitis inflammation controlled once they have been able to achieve remission. As much as we wish we could say that vasculitis could be cured by changes in diet as well as stress reduction techniques, that is not the case. While these practices are beneficial, many people who are very careful about their nutrition and who also practice stress reduction techniques such as mindfulness, yoga, etc. still get vasculitis and still find that their vasculitis becomes active again after being in remission even when they are very careful about what they eat. At the end of November, we are holding a webinar on diet and vasculitis focusing on some of the principles of the anti-inflammatory diet and in December there will be a webinar on integrative medicine. You can find out more about these webinars here: www.vasculitisfoundation.org/events/ Recordings of all webinars can be found here: www.vasculitisfoundation.org/educational-videos/