Posts - Vasculitis UK | HealthUnlocked

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 days ago

6 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

•5 days ago

9 Replies

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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

•6 days ago

24 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•7 days 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

•8 days 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

•12 days ago

7 Replies

Scotland support group

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...

•16 days ago

5 Replies

Yorkshire local support group

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

Moderator•17 days 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

•20 days 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•20 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

•21 days ago

5 Replies

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 because Vasculitis among the physical issues I have had has brought with it...

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

Investigator1

•21 days ago

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...

Three years

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

eyeBRing

•22 days ago

11 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...

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...

•23 days ago

8 Replies

Surveys

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

Moderator•24 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•27 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...

•27 days ago

8 Replies

B12 injections after loading dose

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

•29 days ago

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....

newly diagnosed and seeking support

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

ToeToe3

•29 days ago

28 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•1 month 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•1 month 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

•1 month ago

7 Replies

Patient and Carer Voice - Survey

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....

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

Moderator•1 month 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

•1 month ago

2 Replies

Christmas cards

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...

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

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

Moderator•1 month ago

2 Replies

AAV Patient Summit

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

Moderator•1 month 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•1 month 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

•2 months 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•2 months ago