Vivienne DunstanFeb 28
It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
Viv Dunstan's Story - Vasculitis UK

I’ve been ill with cerebral vasculitis for a very long time. I was only 22 in 1994, had newly started a full-time funded science PhD. And I started to get ...

Vasculitis UK
Show threadSwapnil Hiremath 🍁🇨🇦Feb 23
Plus cases of Vanishing bile duct syndrome? Eg www.acpjournals.org/doi/10.7326/... And academic.oup.com/rheumatology... #NephSky #Vasculitis #Avacopan

Avacopan Causing Vanishing Bil...
Swapnil Hiremath 🍁🇨🇦Jul 31, 2025
Vitamin R + Cyclophosohamide in ANCA vasculitis A case series from Edinburgh suggesting this allows faster steroid withdrawal? @kireports.bsky.social www.kireports.org/article/S246... #NephSky #Vasculitis
Swapnil Hiremath 🍁🇨🇦Jul 27, 2025
Local study from Ottawa colleagues Reduced dose steroids in ANCA vasculitis is safe, in @kireports.bsky.social www.kireports.org/article/S246... #NephSky #Vasculitis
Dr Priya Sammani ( MBBS ,DFM )Jun 9, 2025

I recall a young patient, let's call her Maria. She was in her early thirties, usually so full of life, but she came to me feeling utterly exhausted for months. #aortainflammation #Arteryinflammationsymptoms #Autoimmunevasculitis #Pulselessdisease #TakayasusArteritis #TakayasusArteritistreatment #vasculitis

https://priya.health/takayasus-arteritis/

Dr Priya Sammani ( MBBS ,DFM )Jun 8, 2025

Imagine this: you’ve got these hives. Not the kind that pop up after a new soap and vanish by morning. No, these stick around. They’re itchy, sure, but they also hurt. And they just... linger. #autoimmunedisease #corticosteroids #hives #inflammation #skinbiopsy #UrticarialVasculitis #vasculitis

https://priya.health/urticarial-vasculitis/

Vivienne DunstanFeb 28, 2025
Rare Disease Day 2025 - some thoughts as a vasculitis patient. My annual post about Rare Disease Day, including links to further thoughts from me about related topics. https://vivsacademicblog.wordpress.com/2025/02/28/rare-disease-day-2025-some-thoughts-as-a-vasculitis-patient/ #RareDiseaseDay #health #disability #NHS #medicine #vasculitis
Rare Disease Day 2025 – some thoughts as a vasculitis patient

Today is the annual awareness day around the world for rare diseases. I’ve lived with a rare disease for 31 years now, and always like to promote awareness at this time of year. I have a form…

Viv's Academic Blog
eliaJan 25, 2025
I am inside a very small set of unlucky people who got a very rare #vasculitis (#EGPA), but in the luckiest subset where people achieved remission with #mepolizumab and no need for oral corticosteroids in 26% of cases.

A new monoclonal antibody called #benralizumab will rise that number to 41% of cases.

I'm really grateful and happy that this is happening. I love big pharma :-)

https://www.astrazeneca.com/media-centre/press-releases/2024/fasenra-approved-in-the-eu-for-eosinophilic-granulomatosis-with-polyangiitis.html

https://www.researchgate.net/figure/Mechanism-of-action-of-mepolizumab-reslizumab-and-benralizumab_fig1_332339731
Vivienne DunstanSep 11, 2024
So heavily sedated and sleeping at mo (among other increased neuro symptoms) as latest consultant-pushed try at getting my immunosuppression dose a bit lower fails. Glum from it all! Grateful to manage anything productive in the circumstances :) Happy managed historical research late this afternoon. #neuro #autoimmune #immunosuppression #vasculitis #cerebralVasculitis #illness #chronicIllness
ACR JournalsMar 25, 2024

Patient-reported sinonasal symptoms are associated with increased risk of relapse in ANCA-associated #vasculitis

In Arthritis Care & Research
https://loom.ly/xHhXkSY