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Vasculitis UK

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CUTANEOUS VASCULITIS

Hi! I have these red spots on my legs every time I have long flights. Lately, it became horrendous since they appeared again when I wore tight jeans. I went to...

Hi! I have these red spots on my legs every time I have long flights. Lately, it...

ii0303

•2 years ago

2 Replies

Long Covid Vasculitis

Hi, I'm a newbie here. Is there anyone else out there who has vasculitis from contracting covid please. I caught covid in March and I have just been newly...

Hi, I'm a newbie here. Is there anyone else out there who has vasculitis from co...

M3LZY

•3 years ago

49 Replies

Masks.

Thanks everyone who replied to my query. Your suggestions varied from - attend with mask - don’t under any circumstance go.. I did what I should have done in...

Thanks everyone who replied to my query. Your suggestions varied from - attend w...

wobblypat

•4 years ago

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Nausea with Azathioprine

Hi all, I was diagnosed with GPA last December and after being on Prednisolone and Cyclophosphomide for 4 months the Steroids are greatly reduced and I have...

Hi all, I was diagnosed with GPA last December and after being on Prednisolone ...

Investigator1

•4 years ago

12 Replies

Cyclophosphamide

Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis My Immunologist and Neurologist put me on Cyclophosphamide for two years and without...

Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis My Immu...

Vrainbird

•4 years ago

4 Replies

Severe pain in my right chest and can't take my breath .. having UC and taking 60mg prednisone a day

Having severe pain in my right chest while using prednisone 60mg a day .. does it a side effect of pred? My doc tell me to take paracetamol two pills in...

Having severe pain in my right chest while using prednisone 60mg a day .. does i...

Rama22

•4 years ago

4 Replies

Does anyone else with egpa feel like a ground shaking motor chugging somehow right beside the house when you go to bed at night?

I know now that it’s not real but it sure feels like I’m living beside a rumbling freight train. It only happens at night. I think it is my ears but who...

I know now that it’s not real but it sure feels like I’m living beside a rumblin...

Cathywp2

•4 years ago

2 Replies

Can Prolia trigger vasculitis

I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and...

I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on l...

Corcaigh

•4 years ago

22 Replies

is it a risk to stay on imuran when i have had 4 skin cancer surgeries in the last 8 month's

i have GPA Valastitis for 3 years have been in remission for 1 year. i take imuran 150ml a day. i have had 4 skin cancer surgeries in the last 8 months. My...

i have GPA Valastitis for 3 years have been in remission for 1 year. i take imu...

1943bonnie

•5 years ago

3 Replies

MPO with impaired kidneys

Hi I was diagnosed with MPO Vasculitis in August 2015 with impaired kidneys Had a course of cyclophosphomide, steroids and now on azathioprine. I'm on...

Hi I was diagnosed with MPO Vasculitis in August 2015 with impaired kidneys Had ...

xz3sgn

•5 years ago

3 Replies

My mother just diagnosed GPA, help needed

Dear patients and specialists, I am currently working and living in the UK and my mother has been diagnosed as GPA vacuities on November in China....

Dear patients and specialists, I am currently working and living in the UK and ...

Iris311

•5 years ago

11 Replies

How rare am I?

What club do I belong to? What's lurking? Autoimmune disease "club" for certain. "Your complicated" is what I've been told—"smoldering" and "atypical...

What club do I belong to? What's lurking? Autoimmune disease "club" for certain....

Canygirl61

•6 years ago

1 Reply

LDN sounds too good to be true

Has anyone heard of LDN? Maybe it is just a scam from the internet but it sounds like a miracle cure for a bunch of autoimmune disorders plus cancer and...

Has anyone heard of LDN? Maybe it is just a scam from the internet but it sound...

Cathywp

•6 years ago

4 Replies

Iodine Contrast - content

I had swelling of the feet within a few days after CT with iodine with contrast. This could be coincidence but the following link states that some contrast...

I had swelling of the feet within a few days after CT with iodine with contrast....

BeesMom

•6 years ago

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Maybe it really is anxiety?

My rhumatologist suggested to me today that I should see a shrink. Not the answer I was wanting. She saws no more tests because I have already had too many....

My rhumatologist suggested to me today that I should see a shrink. Not the answ...

Cathywp

•6 years ago

13 Replies

Egpa questions

After further reading I have more questions that perhaps the group can help to clarify.... Are ANCA positive and ANCA negative egpa both forms of vasculitis?...

After further reading I have more questions that perhaps the group can help to c...

Cathywp

•6 years ago

14 Replies

Azathioprine ?

Just would like to hear about your experience with azathioprine. i developed more sheathing despite 12.5 mg Prednisone. Also interested in suggestions....

Just would like to hear about your experience with azathioprine. i developed mo...

arcr

•6 years ago

13 Replies

Vasculitis – GPA

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis – GPA. I am a white female. I was hospitalized until April 15, 2017. During my stay I...

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis – GPA. I ...

cpierce1016

•6 years ago

8 Replies

My Christmas Fairy

There is a fairy upon my tree, that little angel is as old as me. Although she's a bit tatty, her wings a bit frayed, I won't part with her, and on the...

There is a fairy upon my tree, that little angel is as old as me. Although s...

hamble99b

Volunteer•6 years ago

7 Replies

Dizziness from Prednisone & Rituxan infusions....

After being diagnosed in March '17 with acquired autoimmune hemolytic anemia I've had a series of 7 IV infusions of Rituxan (2 'wimpy' doses & 5 high powered...

After being diagnosed in March '17 with acquired autoimmune hemolytic anemia I'v...

luvretmt

•7 years ago

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Living with Churg Strauss - video

Last December GSK pharmaceutical company asked Vasculitis UK if they could put them in touch with people living with Churg Strauss Syndrome who would help them...

Last December GSK pharmaceutical company asked Vasculitis UK if they could put t...

Katie18

•7 years ago

10 Replies

Strongly Suspected Vasculitis Awaiting Specialist Appointment With rheumatology and hematology... Which form that is the question..

Hi everyone, Jeez where do I start... hmm I've never joined a group before & I am at my wits end.. I have felt so unwell & even that doesn't give justice to...

Hi everyone, Jeez where do I start... hmm I've never joined a group before & I...

LauraMk30

•7 years ago

32 Replies

Trying to connect the dots

Hello friends and encouragers. I have a rare bone disease called Kienbock's. Wondering if anyone has been diagnosed with this along with vascultis or lupus OR...

Hello friends and encouragers. I have a rare bone disease called Kienbock's. Won...

autoimmunemystery

•7 years ago

10 Replies

Diagnosed with Panca Vasculitis, Rhumatoid, and Osteoarthritis

I'm sorta new at this, I was diagnosed with polymyositis in 2014. I couldn't use my hands or stand up straight. It hurt to walk, sit stand, or even to lay for...

I'm sorta new at this, I was diagnosed with polymyositis in 2014. I couldn't use...

deebeau

•7 years ago

1 Reply

Vasculitis a lifelong mystery ?

Recently had dramatic admission to hospital presenting with right upper body chest pain and left temple pain and tenderness Blood tests confirmed raised ESR...

Recently had dramatic admission to hospital presenting with right upper body che...

Juneelizabeth

•8 years ago

6 Replies

Surviving vasculitus

How to educate people as to what vasculitus is. SURVIVING VASCULITUS

ken13

•8 years ago

1 Reply

For those with vasculitis AND pain in the stomach

Hi all, I recently have been undergoing tests to get a specific diagnosis of GPA/Wegeners & have been told that I do have a generalise ANCA positive small...

Hi all, I recently have been undergoing tests to get a specific diagnosis of GP...

Jools52

•8 years ago

4 Replies

I'm ill and can't get benefits

5 years ago I lost my husband to Brian hemorrhage I was left his pension from a job he retired from due to ill health 11 years before death I ended up with...

5 years ago I lost my husband to Brian hemorrhage I was left his pension from a ...

Hidden

•8 years ago

5 Replies

Second attack of cerebral vasculitis

Has anyone with cerebral vascultis had a second attack of it? After 7 years relatively free certainly from any new neurological symptoms, I have just spent two...

Has anyone with cerebral vascultis had a second attack of it? After 7 years rela...

milliewin

•8 years ago

7 Replies

Vascular or Sjogrens

I have idiopathic pulmonary fibrosis and Sjogrens. I've had several painful vasculitis occasions have suddenly lost my sense of smell and have reoccurring...

I have idiopathic pulmonary fibrosis and Sjogrens. I've had several painful vas...

Muffinhead

•8 years ago

1 Reply

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Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

Creative Corner posts

CUTANEOUS VASCULITIS

Long Covid Vasculitis

Masks.

Nausea with Azathioprine

Cyclophosphamide

Severe pain in my right chest and can't take my breath .. having UC and taking 60mg prednisone a day

Does anyone else with egpa feel like a ground shaking motor chugging somehow right beside the house when you go to bed at night?

Can Prolia trigger vasculitis

is it a risk to stay on imuran when i have had 4 skin cancer surgeries in the last 8 month's

MPO with impaired kidneys

My mother just diagnosed GPA, help needed

How rare am I?

LDN sounds too good to be true

Iodine Contrast - content

Maybe it really is anxiety?

Egpa questions

Azathioprine ?

Vasculitis – GPA

My Christmas Fairy

Dizziness from Prednisone & Rituxan infusions....

Living with Churg Strauss - video

Strongly Suspected Vasculitis Awaiting Specialist Appointment With rheumatology and hematology... Which form that is the question..

Trying to connect the dots

Diagnosed with Panca Vasculitis, Rhumatoid, and Osteoarthritis

Vasculitis a lifelong mystery ?

Surviving vasculitus

For those with vasculitis AND pain in the stomach

I'm ill and can't get benefits

Second attack of cerebral vasculitis

Vascular or Sjogrens

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