Vasculitis UK | HealthUnlocked

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...

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...

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...

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...

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...

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...

I feel so alone in all this

🌸 Flor

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...

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...

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, 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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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