Posts - Vasculitis UK | HealthUnlocked

•1 hour 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•12 hours 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

•3 days ago

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...

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JCVI plans for Covid vaccine rollout 2025 onwards

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

vivdunstan

Volunteer•4 days ago

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

Can vasculitis cause liver problems?

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

RedPoppy2

•4 days ago

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...

Movember - Thought I would have a go

Hi all I decided to have a go and raise some money. There is a connection for me...

Investigator1

•5 days ago

3 Replies

Three years

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...

I was misdiagnosed with PMR for years. It was eventually diagnosed as vasculitis...

eyeBRing

•6 days ago

10 Replies

Affecting Eyes?

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 recently diagnosed with IgA Vasculitis.Have dr appointment at end of month ho...

•6 days ago

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...

Surveys

Having a registry of patients with a rare disease is very beneficial and helps d...

Moderator•7 days ago

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...

Christmas Cards

VUK Christmas cards on sale at https://vasculitisuk.myshopify.com/ Both 2024 an...

Moderator•11 days ago

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...

Blood levels high

I was recently diagnosed with IgA Vasculitis getting my bloods checked for my b1...

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...

•11 days ago

8 Replies

B12 injections after loading dose

Hi looking for advice. After getting biopsy being diagnosed with IgA Vasculitis ...

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....

•12 days ago

3 Replies

newly diagnosed and seeking support

Hey, I got diagnosed last week with vasculitis and I have started meds and I a...

ToeToe3

•13 days ago

26 Replies

Vasculitis Ireland Awareness

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...

If you live in Ireland, Vasculitis Ireland is having a patient conference on the...

Moderator•15 days ago

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

VUK Autumn Newsletter is now available on line

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

Suzi70

Administrator•17 days ago

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...

update on reducing medication

OH went to see consultant and reducing medication ( MMF) was discussed as we tho...

Main1234

•17 days ago

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....

Patient and Carer Voice - Survey

The first public consultation on a draft set of quality statements for rare dis...

Moderator•17 days ago

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...

IgA Vasculitis with positive ANCA

Hello, 6 months ago my daughter was finally diagnosed with IgA Vasculitis after...

RedPoppy2

•19 days ago

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...

Christmas cards

Finally! Christmas cards on sale! We are sorry for the delay -there's a story...

Moderator•22 days ago

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

AAV Patient Summit

Vasculitis UK participated in the AAV Patient Summit organised by Vasculitis Int...

Moderator•23 days ago

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...

Vasculitis AGM

Hi All, I’ve sent out the link for the AGM on Sunday to those who have register...

JaneLE

Administrator•25 days ago

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!

Vasculitis support groups Hampshire/Surrey/Berkshire/Wiltshire

Hey guys any groups that meet in these areas? Would be lovely to meet people wit...

Sweetpea0508

•1 month ago

4 Replies

Thank you!

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...

We've had 25 donations in the last 30 days, thanks to our supporters using #easy...

Moderator•1 month ago

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...

EGPA x Heart

My husband was diagnosed in 2019 with EGPA. He's on a variety of meds and curren...

Beaniebabe

•1 month ago

18 Replies

Rutuximab & Travel

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...

Hi everyone, I am due to travel long haul over the Xmas period celebrating big b...

juli-pa

•1 month ago

4 Replies

Not being offered Rituximab for GPA

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 all, I have had GPA for over 3 years and am on methotrexate and prednisolone ...

Wyllow

•1 month ago

A reminder to register at agm@vasculitis.org.uk to participate on Vasculitis UK's AGM on Sunday the 27th of October online.

Vasculitis UK AGM

A reminder to register at agm@vasculitis.org.uk to participate on Vasculitis UK'...

Moderator•1 month ago

Morning troops After being diagnosed in 2016 and taking 6 years to go into remission and off all meds I am having a relapse which isn't as bad as it was...

GPA query

Morning troops After being diagnosed in 2016 and taking 6 years to go into remi...

Red-head44

•1 month ago

10 Replies

Today NHS Wales launched the National Strategic Clinical Network for Musculoskeletal Conditions

Today NHS Wales launched the National Strategic Clinical Network for Musculoskeletal Conditions (...

Today NHS Wales launched the National Strategic Clinical Network for Musculoskel...

If you live in Wales, could you register for online attendance to the MSK network launch tomorrow? It is the first step of the NHS Wales to support people...

Moderator•1 month ago

1 Reply

For those living in Wales

If you live in Wales, could you register for online attendance to the MSK networ...