Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

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On behalf of Evolve Fieldwork

For parents with children with ANCA associated vasculitis (GPA,MPA, EGPA) Make a Difference in the Lives of Children with AAV! Do you have a child...

For parents with children with ANCA associated vasculitis (GPA,MPA, EGPA) Make ...

zoe69

Moderator•5 hours ago

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Rare Disease Day 2025 countdown

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like vasculitis is not only about fair and equal access to diagnosis, treatment and...

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like ...

zoe69

Moderator•10 hours ago

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Showcase event for children and their carers

For those with children with vasculitis (or other rheumatic diseases) The UK’s Experimental Arthritis Treatment Centre wil have a Children's Showcase Event on...

For those with children with vasculitis (or other rheumatic diseases) The UK’s ...

zoe69

Moderator•4 days ago

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Rare Disease Day 2025 Countdown

Rare Disease Day 2025 countdown, two weeks to go! 300 million people may sound a lot, but it is only 3.6% of the population and we are talking about more than...

Rare Disease Day 2025 countdown, two weeks to go! 300 million people may sound ...

zoe69

Moderator•8 days ago

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IgA vasculitis study

IgA vasculitis study led by Dr Oni at Alder Hey has now had approvals to support remote national recruitment. This will include courier collection of urine...

IgA vasculitis study led by Dr Oni at Alder Hey has now had approvals to support...

zoe69

Moderator•8 days ago

2 Replies

Anyone diagnosed with GPA and PMR?

Hi I know lots of people have GCA and PMR but has anyone been diagnosed with GPA (Wegeners) and PMR? I am sure I am in remission from GPA and strongly...

Hi I know lots of people have GCA and PMR but has anyone been diagnosed with GPA...

Pompey3

•9 days ago

2 Replies

For our members in Wales

From NHS Wales We are excited to announce the launch of our MSK Lived-Experience Group. To kickstart recruitment, we are hosting a webinar on Monday 3rd...

From NHS Wales We are excited to announce the launch of our MSK Lived-Experien...

zoe69

Moderator•9 days ago

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Best hospitals for Treatment of GPA

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been treated since by the Worcestershire acute hospitals Trust, but we are becoming...

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been tr...

Clairabella46

•9 days ago

7 Replies

EasyFundraising

A big thank you to our amazing supporters who raise free funds for us on #easyfundraising. If you're not signed up yet, please join today and you can raise...

A big thank you to our amazing supporters who raise free funds for us on #easyfu...

zoe69

Moderator•11 days ago

1 Reply

Iga vasculitic leg ulcers.

Hello I am Tor-Happy, I have had an ongoing issue for 18 years with Iga, Leucocytoclastic or HSP. For many years I have had ulcers on my lower legs and...

Hello I am Tor-Happy, I have had an ongoing issue for 18 years with Iga, Leuco...

Tor-Happy

•11 days ago

2 Replies

sural nerve biopsy

new rheumatologist is DEMANDING a sural nerve biopsy. Research found in NIH 2024 has shown many side effects 1. infection 2. long term healing 3. phantom...

new rheumatologist is DEMANDING a sural nerve biopsy. Research found in NIH 20...

irishponies

•12 days ago

5 Replies

Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

I feel so alone in all this

emmachamberlain

•13 days ago

8 Replies

Rare Disease Day 2025

The countdown is on, 3 weeks until Rare Disease Day 2025 Vasculitis, more common than you think, more serious than you know. There are 20 different forms of...

The countdown is on, 3 weeks until Rare Disease Day 2025 Vasculitis, more commo...

zoe69

Moderator•14 days ago

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Avacopan- tell me about your experiences

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with some serious potential side effects. I was hoping the group would share their...

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with s...

Chocolate78

•14 days ago

9 Replies

MPO ANCA Vasculitis - Feeling out of my depth…looking for any guidance please 🙏🏻

Thank you for letting me join this forum. This is the 1st time I have written on a forum, and have so many questions. Please do forgive my ignorance. In...

Thank you for letting me join this forum. This is the 1st time I have written on...

SparkleGinger

•16 days ago

33 Replies

Digestive and skin fungal issues?

I'm newly in medication remission from my GPA (after 4 Truxima infusions). I'm nearly off prednisone after 8 years (most of the recent years at 2mg daily...

I'm newly in medication remission from my GPA (after 4 Truxima infusions). I'm ...

SusanEleven

•20 days ago

3 Replies

Rare Disease Day 2025 countdown

February is here and the countdown to Rare Disease Day 2025 has begun! Vasculitis is a group of rare conditions, there are many different types. Vasculitis...

February is here and the countdown to Rare Disease Day 2025 has begun! Vasculi...

zoe69

Moderator•20 days ago

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Support for Rare Disease Day

Good morning all, Tomorrow is the start of the lead up to Rare Disease Day. Zoi Anastasa will be posting official content… but if you want to show your...

Good morning all, Tomorrow is the start of the lead up to Rare Disease Day. Zoi...

JaneLE

Administrator•21 days ago

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Hello! how are they? I am new to the disease and I still have a hard time controlling my diet, so do you have any recommendations? Thank you

🌸 Flor

Florencia93

•24 days ago

9 Replies

Sores and blisters on right leg

High everyone , I have pr3 anca positive vasculitus, (GPA)?. Am in medical remission but my lower right leg has gradually getting worse as of late with...

High everyone , I have pr3 anca positive vasculitus, (GPA)?. Am in medical remis...

Cookyboy1

•26 days ago

7 Replies

newly diagnosed and very confused, any advice appreciated

hi So pleased to find this board I’m 60 and was fit and well . Last Tuesday one elbow started aching a bit and my feet were a bit sore . Wednesday morning I...

hi So pleased to find this board I’m 60 and was fit and well . Last Tuesday on...

Smiggy2

•27 days ago

5 Replies

National Institute for Health and Care Excellence survey - NHS Talking Therapies

From NICE (National Institute for Health and Care Excellence) If you’ve used NHS Talking Therapies, please complete our survey, about your experience of...

From NICE (National Institute for Health and Care Excellence) If you’ve used NH...

zoe69

Moderator•1 month ago

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Rituximab infusion

Hi, I’ve had 6 Rituximab infusions now and I have to say it a life saver. I think I just felt tired from the first one but after that all good. And I have my...

Hi, I’ve had 6 Rituximab infusions now and I have to say it a life saver. I thi...

Olive456

•1 month ago

5 Replies

Rituximab

Hi. I'm new to this platform and tomorrow I have my first Rituximab infusion. I was diagnosed with Vasculitis GPA last month. I've never had any hospital...

Hi. I'm new to this platform and tomorrow I have my first Rituximab infusion. I ...

Chocolate78

•1 month ago

35 Replies

Zoledronic Acid Infusion

Unable to take the prescribed drug to protect my bones from ongoing use of steroids , I received a Zoledronic Acid Infusion last Friday. I was told I might...

Unable to take the prescribed drug to protect my bones from ongoing use of ste...

Obscureclouds

•1 month ago

21 Replies

ANCA titer ranges

Hi, I've posted a couple of times regarding my 21-year-old daughter and had lots of helpful replies, thank you. We have finally managed to get a copy of her...

Hi, I've posted a couple of times regarding my 21-year-old daughter and had lot...

RedPoppy2

•1 month ago

21 Replies

Fundraising opportunity for runners

Vasculitis UK has places available for runners who would like to take part in the Great North Run on Sunday 7th September. We can offer a free place on the...

Vasculitis UK has places available for runners who would like to take part in th...

zoe69

Moderator•1 month ago

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Urgent help 😢 eye uveitis

Hi I have Iga Vasculitis and iv had problems with my eye for a few mo this.The optometrist seen me at home and said I have an ulcer and uveitis in tight eye....

Hi I have Iga Vasculitis and iv had problems with my eye for a few mo this.The o...

Avocado_deb

•1 month ago

8 Replies

Survey

Important! Vasculitis, rheumatology and other autoimmune diseases patient survey from the University of Cambridge. Thank you to those who have already...

Important! Vasculitis, rheumatology and other autoimmune diseases patient surve...

zoe69

Moderator•2 months ago

3 Replies

Who should I request a referral to?

Hi everyone, I'm not yet diagnosed, and looking for advice in getting a diagnosis. Last month I had a positive c-anca test (but nothing else of concern in my...

Hi everyone, I'm not yet diagnosed, and looking for advice in getting a diagnos...

EA_24

•2 months ago

11 Replies

Write a post or ask a question

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

On behalf of Evolve Fieldwork

Rare Disease Day 2025 countdown

Showcase event for children and their carers

Rare Disease Day 2025 Countdown

IgA vasculitis study

Anyone diagnosed with GPA and PMR?

For our members in Wales

Best hospitals for Treatment of GPA

EasyFundraising

Iga vasculitic leg ulcers.

sural nerve biopsy

Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

Rare Disease Day 2025

Avacopan- tell me about your experiences

MPO ANCA Vasculitis - Feeling out of my depth…looking for any guidance please 🙏🏻

Digestive and skin fungal issues?

Rare Disease Day 2025 countdown

Support for Rare Disease Day

Hello! how are they? I am new to the disease and I still have a hard time controlling my diet, so do you have any recommendations? Thank you

Sores and blisters on right leg

newly diagnosed and very confused, any advice appreciated

National Institute for Health and Care Excellence survey - NHS Talking Therapies

Rituximab infusion

Rituximab

Zoledronic Acid Infusion

ANCA titer ranges

Fundraising opportunity for runners

Urgent help 😢 eye uveitis

Survey

Who should I request a referral to?

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