Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

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Reverting from full osteoporosis to osteopenia

Wonderful news from the rheumatologist. My latest bone density scan 2 weeks ago in Perth showed that I have improved, going back from full blown osteoporosis 8...

Wonderful news from the rheumatologist. My latest bone density scan 2 weeks ago ...

vivdunstan

Volunteer•13 hours ago

10 Replies

inflammation/heat

Struggling with body temperature these days. I have a real time with it. It makes me feel on fire. The palms of my hands, my tongue, my head and spine. It gets...

Struggling with body temperature these days. I have a real time with it. It make...

Tuffymason

•1 day ago

4 Replies

Online event for those with IgA vasculitis (HSP)

The UK Kidney Ecosystem at the University of Liverpool is hosting an online event on April 4th (12 PM - 1 PM) for individuals with lived experience of IgA...

The UK Kidney Ecosystem at the University of Liverpool is hosting an online even...

zoe69

Moderator•5 days ago

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Autoimmune Conditions

Hi everyone. I had a Rheumatologist tell me last week that if I have one autoimmune condition that I cannot have another. This comment stunned me as I have...

Hi everyone. I had a Rheumatologist tell me last week that if I have one autoimm...

HiveMind

•6 days ago

15 Replies

dental problems

in 2022, I was diagnosed with vasculitis, MPA. Two years of prednisone followed, along with 8 infusions of Rituximab. As I was finishing up and going into...

in 2022, I was diagnosed with vasculitis, MPA. Two years of prednisone followed,...

GinnyMa

•6 days ago

3 Replies

In the wee hours

OMG dears, it is 2:30 am and my mind won’t shut off and my eyes won’t close. I saw my rheumy on March 14 where she increased my prednisone to 15 mg a day for...

OMG dears, it is 2:30 am and my mind won’t shut off and my eyes won’t close. I s...

Tuffymason

•6 days ago

16 Replies

repressed anger and the results on your body.

https://apple.news/A8SLMoXp7Sim1ejlma6cdLw This post this morning has resonated with me. As a child and young adult I had what was termed ‘a temper’ (never...

https://apple.news/A8SLMoXp7Sim1ejlma6cdLw This post this morning has resonated...

Red-head44

•8 days ago

4 Replies

Rituximab - Itchy Skin

Hi all hope everybody is ok. I had me last infusion nearly 4 months ago but have been on Rituximab nearly 4 years. But itchy skin blimey it’s driving me mad....

Hi all hope everybody is ok. I had me last infusion nearly 4 months ago but have...

Investigator1

•10 days ago

10 Replies

What do you think?

I feel saddened and quite shocked that even on these deeply personal and sensitive forums, we have to be on our guard against people like these (Post sent...

I feel saddened and quite shocked that even on these deeply personal and sensit...

SparkleGinger

•17 days ago

10 Replies

Research publication

'I still can’t forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses A research...

'I still can’t forget those words': mixed methods study of the persisting impact...

zoe69

Moderator•22 days ago

8 Replies

Steroid Weight Gain

hi everyone. Been back on 40mg steroids and coming back down. I’m at 15 at the mo. I’d lost 2 stone from weight gain from initial steroids from 2016 but have...

hi everyone. Been back on 40mg steroids and coming back down. I’m at 15 at the m...

Red-head44

•24 days ago

17 Replies

IgA Vasculitis & eye ulcer

Hi all, Just looking for advice. Diagnosed IgA Vasculitis, recently had eye problems, seen at eye clinic. It is an eye ulcer & infection. Does anyone know...

Hi all, Just looking for advice. Diagnosed IgA Vasculitis, recently had eye pr...

Chakra111

•24 days ago

3 Replies

husband diagnosed with wegeners

my husband (68) was diagnosed with Wegeners in December. He was in stage 4 kidney disease.He was given a plasma exchange and started on Rituximab. Due to...

my husband (68) was diagnosed with Wegeners in December. He was in stage 4 kidn...

Peacefulfrog

•26 days ago

28 Replies

Antioxidants

I have recently tried anti oxidants to reduce prednisalone use.resveratrol seems promising.my rheumatologist is advising me to stop just in case it reacts with...

I have recently tried anti oxidants to reduce prednisalone use.resveratrol seems...

orthotist

•27 days ago

1 Reply

Rare Disease Day 2025

#RareDiseaseDay2025 is TODAY! Vasculitis, is rare, vasculitis is (usually) chronic, vasculitis can be severe even fatal. Living with a rare...

#RareDiseaseDay2025 is TODAY! Vasculitis, is rare, vasculitis is (usually) chro...

zoe69

Moderator•29 days ago

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so I’m going to be having anca blood test Wednesday

so a bit of back ground, I have struggled with pins and needles in my arms and numbness in my lips at night when I sleep for quite some time however fades...

so a bit of back ground, I have struggled with pins and needles in my arms and n...

Leanne19862

•1 month ago

14 Replies

On behalf of Evolve Fieldwork

For parents with children with ANCA associated vasculitis (GPA,MPA, EGPA) Make a Difference in the Lives of Children with AAV! Do you have a child...

For parents with children with ANCA associated vasculitis (GPA,MPA, EGPA) Make ...

zoe69

Moderator•1 month ago

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Rare Disease Day 2025 countdown

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like vasculitis is not only about fair and equal access to diagnosis, treatment and...

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like ...

zoe69

Moderator•1 month ago

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Showcase event for children and their carers

For those with children with vasculitis (or other rheumatic diseases) The UK’s Experimental Arthritis Treatment Centre wil have a Children's Showcase Event on...

For those with children with vasculitis (or other rheumatic diseases) The UK’s ...

zoe69

Moderator•1 month ago

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Rare Disease Day 2025 Countdown

Rare Disease Day 2025 countdown, two weeks to go! 300 million people may sound a lot, but it is only 3.6% of the population and we are talking about more than...

Rare Disease Day 2025 countdown, two weeks to go! 300 million people may sound ...

zoe69

Moderator•1 month ago

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IgA vasculitis study

IgA vasculitis study led by Dr Oni at Alder Hey has now had approvals to support remote national recruitment. This will include courier collection of urine...

IgA vasculitis study led by Dr Oni at Alder Hey has now had approvals to support...

zoe69

Moderator•1 month ago

2 Replies

Anyone diagnosed with GPA and PMR?

Hi I know lots of people have GCA and PMR but has anyone been diagnosed with GPA (Wegeners) and PMR? I am sure I am in remission from GPA and strongly...

Hi I know lots of people have GCA and PMR but has anyone been diagnosed with GPA...

Pompey3

•1 month ago

2 Replies

For our members in Wales

From NHS Wales We are excited to announce the launch of our MSK Lived-Experience Group. To kickstart recruitment, we are hosting a webinar on Monday 3rd...

From NHS Wales We are excited to announce the launch of our MSK Lived-Experien...

zoe69

Moderator•1 month ago

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Best hospitals for Treatment of GPA

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been treated since by the Worcestershire acute hospitals Trust, but we are becoming...

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been tr...

Clairabella46

•1 month ago

7 Replies

EasyFundraising

A big thank you to our amazing supporters who raise free funds for us on #easyfundraising. If you're not signed up yet, please join today and you can raise...

A big thank you to our amazing supporters who raise free funds for us on #easyfu...

zoe69

Moderator•2 months ago

1 Reply

Iga vasculitic leg ulcers.

Hello I am Tor-Happy, I have had an ongoing issue for 18 years with Iga, Leucocytoclastic or HSP. For many years I have had ulcers on my lower legs and...

Hello I am Tor-Happy, I have had an ongoing issue for 18 years with Iga, Leuco...

Tor-Happy

•2 months ago

2 Replies

sural nerve biopsy

new rheumatologist is DEMANDING a sural nerve biopsy. Research found in NIH 2024 has shown many side effects 1. infection 2. long term healing 3. phantom...

new rheumatologist is DEMANDING a sural nerve biopsy. Research found in NIH 20...

irishponies

•2 months ago

6 Replies

Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

I feel so alone in all this

emmachamberlain

•2 months ago

13 Replies

Rare Disease Day 2025

The countdown is on, 3 weeks until Rare Disease Day 2025 Vasculitis, more common than you think, more serious than you know. There are 20 different forms of...

The countdown is on, 3 weeks until Rare Disease Day 2025 Vasculitis, more commo...

zoe69

Moderator•2 months ago

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Avacopan- tell me about your experiences

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with some serious potential side effects. I was hoping the group would share their...

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with s...

Chocolate78

•2 months ago

9 Replies

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Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

Reverting from full osteoporosis to osteopenia

inflammation/heat

Online event for those with IgA vasculitis (HSP)

Autoimmune Conditions

dental problems

In the wee hours

repressed anger and the results on your body.

Rituximab - Itchy Skin

What do you think?

Research publication

Steroid Weight Gain

IgA Vasculitis & eye ulcer

husband diagnosed with wegeners

Antioxidants

Rare Disease Day 2025

so I’m going to be having anca blood test Wednesday

On behalf of Evolve Fieldwork

Rare Disease Day 2025 countdown

Showcase event for children and their carers

Rare Disease Day 2025 Countdown

IgA vasculitis study

Anyone diagnosed with GPA and PMR?

For our members in Wales

Best hospitals for Treatment of GPA

EasyFundraising

Iga vasculitic leg ulcers.

sural nerve biopsy

Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

Rare Disease Day 2025

Avacopan- tell me about your experiences

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