Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,779 members • 6,752 posts

All posts for January 2024

Rituximab experience?

Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT...

Hi all. I have had large vessel vasculitis for over three years which, despite s...

Kafkaontheshore

•3 months ago

Kidney biopsy confirms active GPA

Hi, Thought I'd update what has happened since my last post. I have seen my rheumatologist twice now, given pred and was put forward for rituximab. Due to...

Hi, Thought I'd update what has happened since my last post. I have seen my rh...

•3 months ago

anyone with Churg Strauss come off all medication?

hello I have a dilemma as I see 2 consultants from different hospitals- one is a rheumatologist from my local hospital and the other is a Vasculitis...

hello I have a dilemma as I see 2 consultants from different hospitals- one is...

•3 months ago

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GCA/Carotid Artery Calcification

Hello you wise people. Have any of you heard of GCA causing carotid bulb/arteries calcification.

Hello you wise people. Have any of you heard of GCA causing carotid bulb/arteri...

•3 months ago

Vasculitis Specialist Advice/Direction Please

Hi,I was diagnosed with IGA Vasculitis mid -December. This was diagnosed after a hospital stay and kidney biopsy. Upon reflection I think I have had this for...

Hi,I was diagnosed with IGA Vasculitis mid -December. This was diagnosed after a...

•3 months ago

Hemorrhagic vasculitis treatment

Hi My son 10 years, has been diagnosed Hemorrhagic vasculitis. We are searching for professionals for vasculitis treatment. Could you please advice any...

Hi My son 10 years, has been diagnosed Hemorrhagic vasculitis. We are searchin...

•3 months ago

uveitis autoimmunerkrankung

Hello, my girlfriend has received confirmation since 2019 that she has uveitis and she also uses all the medication from her ophthalmologist. I wanted to ask...

Hello, my girlfriend has received confirmation since 2019 that she has uveitis a...

•3 months ago

Measles outbreak

Hi, not sure if I'm being silly so looking for abit of reassurance. I'm on rituximab, azathioprine and prednisolone. I'm up-to-date with vaccinations bit...

Hi, not sure if I'm being silly so looking for abit of reassurance. I'm on ritux...

•3 months ago

Travel Insurance with GPA

Need to get Travel Insurance for Europe this year. Any recommendations ? Had a look at previous posts...anybody had a positive experience with a company...

Need to get Travel Insurance for Europe this year. Any recommendations ? Had ...

•3 months ago

iga vasculitis

hello my name is Marc I have been diagnosed with iga vasculitis. I’ve been struggling for twelve months trying not to let this beat me do you legs improve or...

hello my name is Marc I have been diagnosed with iga vasculitis. I’ve been strug...

Frosty_nights89

•3 months ago

Hi everyone and Happy New Year

my name is Jill and it’s been along while since I’ve posted anything. I was diagnosed in 1999. Aged 39. Despite being very unwell for months and being...

my name is Jill and it’s been along while since I’ve posted anything. I was d...

•4 months ago

CRP 220

Currently in hospital with Pneumonia. My CRP was 180 on Saturday and went up to 220 on Monday. Medics are going to do a procalcitonin blood test which I've...

Currently in hospital with Pneumonia. My CRP was 180 on Saturday and went up to...

•4 months ago

Tea & coffee chat/walks?

Hi I live in Kings Lynn, Norfolk and was just wondering if anyone who is in the area would like to meet up for chats and a rant! I have found it hard since...

Hi I live in Kings Lynn, Norfolk and was just wondering if anyone who is in th...

•4 months ago

shingrix

Does anyone know how long you have to leave it after rutuximab before having the shingles vaccine. I had infusion in December & my GP has never offered this...

Does anyone know how long you have to leave it after rutuximab before having the...

•4 months ago

prednisone

Hi, Could someone please tell me what is considered a high daily dose of prednisone? How long on a higher dose are you at risk of the side effects of...

Hi, Could someone please tell me what is considered a high daily dose of predn...

•4 months ago

Immunocompromised behavior

i am 82 and heading in May into my last infusion for microscopic polyangiitis. I am fully vaccinated for flu, covid, and RSV. I am reluctant to let people...

i am 82 and heading in May into my last infusion for microscopic polyangiitis. ...

•4 months ago

Hot Sweat

I have had a cold for a few weeks now but feel like I am on the mend now but last night I woke up & my body was like I had just stepped out of the bath. I was...

I have had a cold for a few weeks now but feel like I am on the mend now but las...

•4 months ago

Gpa chest infection

Hi all, I've been battling a chest infection on day 4 of antibiotics. Already on prednisolone, azathioprine and rituximab. Just doesn't seem to be shifting....

Hi all, I've been battling a chest infection on day 4 of antibiotics. Already on...

•4 months ago