Vasculitis UK | HealthUnlocked

Hey, I got diagnosed last week with vasculitis and I have started meds and I am feeling super overwhelmed and don’t know what to do or how to deal with it....

I was misdiagnosed with PMR for years. It was eventually diagnosed as vasculitis and it's attacked my kidney. I am not suitable for dialysis and my prognosis...

My husband was diagnosed in 2019 with EGPA. He's on a variety of meds and currently trying to reduce prednisone managing to reduce from 15mg to 11mg before...

I was recently diagnosed with IgA Vasculitis getting my bloods checked for my b12 levels and again it is still showing high for the infection tests.I'm not...

Hello, I had a liver biopsy, following deranged LFTs, which showed "perivenular sinusoidal dilation and congestion with associated collapse". My hepatologist...

Hi recently diagnosed with IgA Vasculitis.Have dr appointment at end of month however I'm here again to ask has it affected anyone's eyes and quite quick after...

Hi all I decided to have a go and raise some money. There is a connection for me because Vasculitis among the physical issues I have had has brought with it...

OH went to see consultant and reducing medication ( MMF) was discussed as we thought. He was initially diagnosed 7 years ago. before deciding reduction of...

In September I went to the ED with acute abdominal pain which continued to worsen for 20 hours. After several tests I was taken by ambulance to the hospital...

Statement from the JCVI vaccines group about plans for NHS Covid vaccines in the UK from Spring 2025 onwards. Basically they intend to cut out the broad at...

Hi all, I have had GPA for over 3 years and am on methotrexate and prednisolone among many others. I have never been offered Rituximab although did have a...

Hi looking for advice. After getting biopsy being diagnosed with IgA Vasculitis we find I was deficiency in b12. Had my 6 loading doses last one on 6th...

Hi everyone, I am due to travel long haul over the Xmas period celebrating big birthday. I am due my rutuximab infusion in December which is maintenance...

Hey guys any groups that meet in these areas? Would be lovely to meet people with the same difficulties and have a cup of tea!

Hi Just wondering if there are any support groups in Scotland for Vasculitis

If you live in Yorkshire and you are interested in meeting fellow vascies, email Rachel and Mark at vasculitis.yorkshire@gmail.com It is lovely to see local...

Hello, 6 months ago my daughter was finally diagnosed with IgA Vasculitis after a couple of years' of debilitating stomach pain and an outbreak of purpura in...

Finally! Christmas cards on sale! We are sorry for the delay -there's a story behind it: In error the last years design was reprinted and we only found out...

Having a registry of patients with a rare disease is very beneficial and helps drive research and improve care. In the UK we have the UKIVAS registry. In...

VUK Christmas cards on sale at https://vasculitisuk.myshopify.com/ Both 2024 and 2023 designs can be ordered from the shop. First come, first served - so...

If you live in Ireland, Vasculitis Ireland is having a patient conference on the 9th and 10th of this month. You have to buy tickets to attend - it is not...

Via the Vasculitis UK website - https://www.vasculitis.org.uk/news/autumn-newsletter-out-now

The first public consultation on a draft set of quality statements for rare disease has just been launched. You have the opportunity to have an input....

Vasculitis UK participated in the AAV Patient Summit organised by Vasculitis International in Netherlands.Doctors, nurses and patients from 10 different...

Hi All, I’ve sent out the link for the AGM on Sunday to those who have registered. Please check your email. And if you cannot see it have a look in junk...

We've had 25 donations in the last 30 days, thanks to our supporters using #easyfundraising when they make online purchases! Please keep up the good work, your...