Posts - Vasculitis UK | HealthUnlocked

Moderator•7 days ago

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....

Urgent help 😢 eye uveitis

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

Avocado_deb

•8 days ago

8 Replies

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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...

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...

Moderator•11 days ago

3 Replies

Who should I request a referral to?

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

EA_24

•12 days ago

10 Replies

Dentist and vasculitis

Hi looking for advice. I am currently waiting on confirmed diagnosis of anca vasculitis but based on my symptoms and anti-mpo test it looks like I have it....

Hi looking for advice. I am currently waiting on confirmed diagnosis of anca ...

Wegeners88

•13 days ago

9 Replies

Headaches - is ANCA Coming Back

Happy New Year to everybody hope you all stay well this year now I need some advice. So I had my bloods done 6 weeks ago, my ANCA marker was really low and...

Happy New Year to everybody hope you all stay well this year now I need some adv...

Investigator1

•16 days ago

20 Replies

Happy New Year

Wishes for health and prosperity!

Moderator•17 days ago

Hello, I just wanted to ask if anybody has experience of blisters under the skin being caused by vasculitis. My 21-year-old daughter has a diagnosis of IgA...

Blisters under skin - caused by vasculitis?

Hello, I just wanted to ask if anybody has experience of blisters under the ski...

RedPoppy2

•18 days ago

28 Replies

Vasculitis and Acute Pancreatitis

Hello I recently achieved the Induction phase with my renal limited vasculitis and was about to start Maintenance when I was hit with acute pancreatitis....

Hello I recently achieved the Induction phase with my renal limited vasculitis a...

Support_helps

•20 days ago

We, from Vasculitis UK are wishing you Happy Holidays!

Season's Greetings

hi everyone, I’m not yet diagnosed with vasculitis, but it has been raised as a possibility following a positive anca blood test. I’m waiting for some more...

Moderator•25 days ago

2 Replies

Positive anca and uveitis, does this mean I have vasculitis? Seeking advice pre-diagnosis

hi everyone, I’m not yet diagnosed with vasculitis, but it has been raised as a...

EA_24

•28 days ago

21 Replies

Severe mouth ulcers

I was diagnosed with GPA in March and have been undergoing treatment with steroids and rutixumab Infusions (last one in August) and next one pla ned for Feb...

I was diagnosed with GPA in March and have been undergoing treatment with steroi...

LRM001

•29 days ago

13 Replies

Young Behcets patients

If you are a young person with Behcets or if you have a child with Behcets you can help create resources to support fellow sufferers. Vasculitis UK works...

If you are a young person with Behcets or if you have a child with Behcets you c...

Moderator•30 days ago

Important! Vasculitis, rheumatology and other autoimmune diseases patient survey from the University of Cambridge. This survey asks about your...

Survey

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

Moderator•1 month ago

Hello, everyone! I’m Alex, 41 years old, from Romania, and I’m looking for support and insights from others who may have faced similar challenges. Here’s a...

Seeking Support: APS Suspicions, Lymphocytic Vasculitis, and Persistent Skin Lesions (No Ulcerations)

Hello, everyone! I’m Alex, 41 years old, from Romania, and I’m looking for supp...

Alex_ro

•1 month ago

2 Replies

Please support the VOICES study

The Versus Arthritis Research Highlight of the Year competition is open. We have supported one of these research projects and it is the first to collect data...

The Versus Arthritis Research Highlight of the Year competition is open. We have...

I’m not from the UK, the US unfortunately but this is the only forum i’ve found that have many people with this issue so i figured i’d be welcomed anyway!!...

Moderator•1 month ago

12 Replies

Takayasu Arteritis?

I’m not from the UK, the US unfortunately but this is the only forum i’ve found ...

miloriviera

•1 month ago

3 Replies

Bilirubin levels.

Hi, has anyone else had high bilirubin levels. I was diagnosed 4 years ago with gpa. This is the first time my bilirubin has came back very raised. I have an...

Hi, has anyone else had high bilirubin levels. I was diagnosed 4 years ago with ...

Vqueen

•1 month ago

Vasculitis UK is appraising benralizumab. I would welcome quotes from EGPA patients who are on benra, or have been refused benra to include in...

Benralizumab for EGPA patients

Vasculitis UK is appraising benralizumab. I would welcome quotes from EGPA pati...

Hello I am being treated for MPA, renal-limited vasculitis. I'm 4 months into daily 50mg cyclo teatment after initial Rituximab treatment failed. I'm also...

Moderator•2 months ago

8 Replies

Impact of meds on taste - best foods to eat

Hello I am being treated for MPA, renal-limited vasculitis. I'm 4 months into d...

Support_helps

•2 months ago

9 Replies

I’m always hungry

I have been on my new meds for a few weeks now and they are making me staving and no matter how much I eat I’m still hungry has anyone got any suggestions how...

I have been on my new meds for a few weeks now and they are making me staving an...

ToeToe3

•2 months ago

27 Replies

Manchester Vasculitis Patient and Public Involvement and Engagement (PPIE) Group meeting

Sorry for the last minute notice. This is for vasculitis patients (and family members/carers) from Manchester: Tea and Biscuits and Vasculitis Meeting - at...

Sorry for the last minute notice. This is for vasculitis patients (and family...

Moderator•2 months ago

Since an initial visit to a consultant in August to confirm Large Cell Vasculitis I have had no further contact apart from his summary letter which arrived...

Experience of Vasculitis and Statins

Since an initial visit to a consultant in August to confirm Large Cell Vasculiti...

Obscureclouds

•2 months ago

17 Replies

Benra and NICE

Calling to everyone with EGPA being treated with Benralizimab. For me it has been life changing and hope to soon be off pred completely having tapered down to...

Calling to everyone with EGPA being treated with Benralizimab. For me it has bee...

EGPAGuy

•2 months ago

7 Replies

Scotland support group

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

Avocado_deb

•2 months ago

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...

Yorkshire local support group

If you live in Yorkshire and you are interested in meeting fellow vascies, email...

Moderator•2 months ago

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...

Acute mesenteric ischemia

In September I went to the ED with acute abdominal pain which continued to worse...

DogHospiceMom

•2 months ago

4 Replies

JCVI plans for Covid vaccine rollout 2025 onwards

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...

Statement from the JCVI vaccines group about plans for NHS Covid vaccines in the...

vivdunstan

Volunteer•2 months ago

3 Replies

Can vasculitis cause liver problems?

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

Hello, I had a liver biopsy, following deranged LFTs, which showed "perivenular...

RedPoppy2

•2 months ago