Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

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Leflunomide

Has anyone been on this for any forms of vasculitis? If so please could I have your feelings on it. Thanks.

Has anyone been on this for any forms of vasculitis? If so please could I have y...

Sherlock11

•5 hours ago

1 Reply

Cyclophosphamide for MPA Induction, Rituximab for Maintenance (any experience with this?)

Hello wondering if anyone has experience dealing with MPA/p-ANCA where initial induction was achieved with Cyclophosphamide and then after successful...

Hello wondering if anyone has experience dealing with MPA/p-ANCA where initial i...

Support_helps

•12 hours ago

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Rituximab treatment

Hello I’ve just finished my second dose of rituximab treatment and am so exhausted, have a cough and occasional fast heart beat but all I want to do is lie...

Hello I’ve just finished my second dose of rituximab treatment and am so exhau...

Anniw

•3 days ago

12 Replies

Want to take advantage of all our features? Just log in!

GCA patients we need your views!

Vasculitis UK is appraising a new medication for GCA. The medication is called Upadacitinib and it is used for other conditions already. In the next few days...

Vasculitis UK is appraising a new medication for GCA. The medication is called U...

zoe69

Administrator•6 days ago

23 Replies

Self-advocating

I’ve posted before about self-advocating and after reading Kendrew’s recent post about her long battle for a sound diagnosis I’m prompted to relate part of my...

I’ve posted before about self-advocating and after reading Kendrew’s recent post...

123-go

•6 days ago

5 Replies

Anyone with vasculitis having frequent migraines during flare up?

Am awaiting another rituximab infusion. However my eye pain is severe this time. Even though there isn't any inflammation in the eyes, I have been to hospital...

Am awaiting another rituximab infusion. However my eye pain is severe this time...

PreetyK

•7 days ago

10 Replies

Easter holidays

Don't forget to order your repeat prescriptions in time for the Easter holidays!

zoe69

Administrator•8 days ago

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shingles

hi looks like my OH has shingles. He has an appointment with GP for antivirals tomorrow morning. Feeling fatigued and generally unwell. Should he continue...

hi looks like my OH has shingles. He has an appointment with GP for antivirals...

Main1234

•9 days ago

8 Replies

I’m losing my hair

So I have been on the autoimmune suppressants for quite a few months and I have noticed my hair has started falling out and I don’t know what to do it about it...

So I have been on the autoimmune suppressants for quite a few months and I have ...

ToeToe3

•15 days ago

11 Replies

2025 VUK AGM

Please come along if you are able to

Allotmental

Administrator•15 days ago

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COVID vaccination after rituximab

I have a COVID vaccination booked for tomorrow but am not certain whether to go ahead. I have recently received two 1mg doses of rituximab and am aware that...

I have a COVID vaccination booked for tomorrow but am not certain whether to go ...

Sankster

•15 days ago

6 Replies

Scottish Covid vaccine self-booking option for immunosuppressed, Spring 2025

Hi folks, It's vaccine time again. Arrangements for Covid vaccines for immunosuppressed people vary around the UK. In Scotland we have generally been advised...

Hi folks, It's vaccine time again. Arrangements for Covid vaccines for immunosu...

vivdunstan

Volunteer•17 days ago

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Join us as a volunteer

Join the Vasculitis UK team as a volunteer! We are looking to expand our remote working group, could you support us? For more information scan the code on...

Join the Vasculitis UK team as a volunteer! We are looking to expand our remote...

zoe69

Administrator•17 days ago

3 Replies

Mother's Day in the UK

Mother's Day can be a happy, sad or mixed feelings day. To all of you, VUK is sending a hug and saying you are special!

Mother's Day can be a happy, sad or mixed feelings day. To all of you, VUK is se...

zoe69

Administrator•19 days ago

5 Replies

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•21 days ago

14 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

•22 days ago

5 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

Administrator•25 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

•26 days ago

19 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

•26 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

•27 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

•28 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

•1 month 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

•1 month 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

Administrator•1 month 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

•1 month 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

•1 month 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

•2 months 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

•2 months 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

Administrator•2 months 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

•2 months ago

14 Replies

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Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

Leflunomide

Cyclophosphamide for MPA Induction, Rituximab for Maintenance (any experience with this?)

Rituximab treatment

GCA patients we need your views!

Self-advocating

Anyone with vasculitis having frequent migraines during flare up?

Easter holidays

shingles

I’m losing my hair

2025 VUK AGM

COVID vaccination after rituximab

Scottish Covid vaccine self-booking option for immunosuppressed, Spring 2025

Join us as a volunteer

Mother's Day in the 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

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