Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,941 members•6,973 posts

All posts for November 2024

Impact of meds on taste - best foods to eat

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...

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

Support_helps

•5 months ago

11 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

•5 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...

zoe69

Administrator•5 months ago

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Experience of Vasculitis and Statins

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...

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

Obscureclouds

•5 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

•5 months ago

7 Replies

Scotland support group

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

Chakra111

•5 months ago

5 Replies

Yorkshire local support group

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...

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

zoe69

Administrator•5 months ago

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Acute mesenteric ischemia

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...

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

DogHospiceMom

•5 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•5 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

•5 months 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

•5 months 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

•5 months 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...

Chakra111

•5 months ago

8 Replies

Surveys

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...

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

zoe69

Administrator•5 months ago

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Christmas Cards

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...

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

zoe69

Administrator•5 months ago

3 Replies

Blood levels high

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...

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

Chakra111

•5 months ago

8 Replies

B12 injections after loading dose

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

Chakra111

•5 months ago

3 Replies

newly diagnosed and seeking support

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....

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

ToeToe3

•5 months ago

32 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...

zoe69

Administrator•5 months ago

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VUK Autumn Newsletter is now available on line

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

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

Suzi70

Administrator•5 months ago

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update on reducing medication

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...

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

Main1234

•5 months ago

11 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...

zoe69

Administrator•5 months ago

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Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for November 2024

Impact of meds on taste - best foods to eat

I’m always hungry

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

Experience of Vasculitis and Statins

Benra and NICE

Scotland support group

Yorkshire local support group

Acute mesenteric ischemia

JCVI plans for Covid vaccine rollout 2025 onwards

Can vasculitis cause liver problems?

Movember - Thought I would have a go

Three years

Affecting Eyes?

Surveys

Christmas Cards

Blood levels high

B12 injections after loading dose

newly diagnosed and seeking support

Vasculitis Ireland Awareness

VUK Autumn Newsletter is now available on line

update on reducing medication

Patient and Carer Voice - Survey

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