Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for May 2022

Your help is needed - experiences of Avacopan

VasculitisUK are looking for real life patient experiences of Avacopan. If you have #Vasculitis and have been prescribed Avacopan we would like to hear about...

VasculitisUK are looking for real life patient experiences of Avacopan. If you h...

John_Mills

Volunteer•3 years ago

8 Replies

TOTALLY 'Lost The Plot' Today!

Dear All, I 'did' my normal Local Shop, earlier on..... Ham, Chicken Slices and a few Other Odds & Ends- including a set of 'Assorted Binder Clips'. Under £2...

Dear All, I 'did' my normal Local Shop, earlier on..... Ham, Chicken Slices and ...

AndrewT

•3 years ago

5 Replies

Rituximab and tetanus (etc.)

This is to all my fellow immune suppressed folks about rituximab. I've been unable to find solid information, and my consultants aren't sure, so wondered if...

This is to all my fellow immune suppressed folks about rituximab. I've been unab...

Grizzly-bear

•3 years ago

7 Replies

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Trying my new anti tremor spoon

First go trying a meal with the anti tremor spoon I bought recently. It’s mainly designed for people with Parkinson’s, but can also help other neurological...

First go trying a meal with the anti tremor spoon I bought recently. It’s mainly...

vivdunstan

Volunteer•3 years ago

8 Replies

RAISE STUDY recruitment

RAISE STUDY recruitment (I have personally taken part in one focus group earlier this year) Are you a person with systemic vasculitis, systemic lupus...

RAISE STUDY recruitment (I have personally taken part in one focus group earlier...

zoe69

Moderator•3 years ago

Be the first to reply

Evushield debated in the Commons

Hi Everybody, I just happened to turn the news on at lunchtime yesterday and during the discussion (bun fight) regarding the PMs non compliance with Covid...

Hi Everybody, I just happened to turn the news on at lunchtime yesterday and dur...

Investigator1

•3 years ago

6 Replies

Diagnosed with MPO ANCA August 2021, following 1st Covid vaccine. Started on 25mg Prednisolone and had 3 doses of Rituximab, last one 1/3/22

I have been following this forum for a little while and I have found it very informative and helpfull so much so, that I thought I might put my case out there...

I have been following this forum for a little while and I have found it very inf...

HappyLung

•3 years ago

15 Replies

Insights into ANCA vasculitis Tx, etc

I was "officially" diagnosed by tests, surgeries, biopsies, exams, labs, etc. in fall of 2021. At that time, Specialists' review of past 5 years of my history...

I was "officially" diagnosed by tests, surgeries, biopsies, exams, labs, etc. i...

irishponies

•3 years ago

18 Replies

Skin problems

Hi I am a year now since being diagnosed with Vasculitis and the consultant says my condition is stable. I am on the usual meds like prednisolone and 2.5grams...

Hi I am a year now since being diagnosed with Vasculitis and the consultant says...

Dave34

•3 years ago

4 Replies

GPA, azathioprine and biopsy

I am on azathioprine for GPA, which is currently in remission, Urologist wants to take me off these for a few days to carry out a biopsy on my prostate, I am...

I am on azathioprine for GPA, which is currently in remission, Urologist wants t...

stuc

•3 years ago

8 Replies

Eyes and ears

Hello Does anyone on here, get severe pain around their eye socket, and around the base of the ear, where your ear canal goes into the skull. I usually have...

Hello Does anyone on here, get severe pain around their eye socket, and around ...

Ianflashdavies

•3 years ago

8 Replies

A but 'Off Subject', Sorry but Does anyone know about this?

Dear All, sorry this IS rather 'Off Subject', please forgive this once, but I went into a Web site- that I had used, probably many times, and it asked me to...

Dear All, sorry this IS rather 'Off Subject', please forgive this once, but I we...

AndrewT

•3 years ago

3 Replies

Vasculitis UK Spring 2022 Newsletter now available on line.

https://www.vasculitis.org.uk/news/autumn-2021-newsletter-out-now

John_Mills

Volunteer•3 years ago

2 Replies

EGPA treatment

I was diagnosed with EGPA I’m August last year - nasty experience as fellow EGPAers will know. After 6 nights in hospital we started off with lots of...

I was diagnosed with EGPA I’m August last year - nasty experience as fellow EGPA...

Reboundman

•3 years ago

17 Replies

Hi, just wondering if anyone has needed a general anaesthetic who has GPA and also has lung involvement?

GPA & Anaesthesia

Vqueen

•3 years ago

6 Replies

CT Colonoscopy

I'm going for a CT colonoscopy next week I'm really apprehensive. I have long covid and contracted diffused vasculitis through this. Looking for reassurance...

I'm going for a CT colonoscopy next week I'm really apprehensive. I have long c...

M3LZY

•3 years ago

7 Replies

Vasculitis UK AGM and Webinar

Vasculitis UK AGM and online webinar this Sunday for those who have an interest. First AGM post COVID19. 😊 Speakers are Dr Fiona Pearce Consultant...

Vasculitis UK AGM and online webinar this Sunday for those who have an interest....

John_Mills

Volunteer•3 years ago

1 Reply

New to ANCA Vasculitis

I have searched the site for new information but notice that most entries are several years old. In January I was diagnosed with ANCA Vasculitis and have...

I have searched the site for new information but notice that most entries are se...

GinnyMa

•3 years ago

13 Replies

Questions after infusion of anticlonal antibodies - can you help?

I'm hoping someone in my situation can give me some information! How safe am I to go out and about (within reason) - I was CEV. I have had 4 jabs, none gave...

I'm hoping someone in my situation can give me some information! How safe am I t...

Jjoy

•3 years ago

11 Replies

Update on my Holiday

Dear All, thank you all, for you Best Wishes, for my Holiday. Yes it was 'lovely' thank you, only I never did get to see the River! I saw Old Friends and made...

Dear All, thank you all, for you Best Wishes, for my Holiday. Yes it was 'lovely...

AndrewT

•3 years ago

1 Reply

Rheumatoid Vasculitis

Hi, does anyone have Rheumatoid Vasculitis and lung problems as well? My hubby has both along with RA, bronchiectasis, asthma, peripheral neuropathy and...

Hi, does anyone have Rheumatoid Vasculitis and lung problems as well? My hubby ...

sunshineday

•3 years ago

5 Replies

5th Vaccine - No problem

Hi everybody, had my spring booster a week last Friday which was my 5th dose. When my 3rd primary dose was due in October last year I posted how much...

Hi everybody, had my spring booster a week last Friday which was my 5th dose. Wh...

Investigator1

•3 years ago

10 Replies

Mpa and HPV vaccine

Has anyone diagnosed with microscopic polyangitis received the HPV vaccine? My daughter has microscopic polyangitis and should get the vaccine? Do you have a...

Has anyone diagnosed with microscopic polyangitis received the HPV vaccine? My d...

tamidi

•3 years ago

4 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for May 2022

Your help is needed - experiences of Avacopan

TOTALLY 'Lost The Plot' Today!

Rituximab and tetanus (etc.)

Trying my new anti tremor spoon

RAISE STUDY recruitment

Evushield debated in the Commons

Diagnosed with MPO ANCA August 2021, following 1st Covid vaccine. Started on 25mg Prednisolone and had 3 doses of Rituximab, last one 1/3/22

Insights into ANCA vasculitis Tx, etc

Skin problems

GPA, azathioprine and biopsy

Eyes and ears

A but 'Off Subject', Sorry but Does anyone know about this?

Vasculitis UK Spring 2022 Newsletter now available on line.

EGPA treatment

Hi, just wondering if anyone has needed a general anaesthetic who has GPA and also has lung involvement?

CT Colonoscopy

Vasculitis UK AGM and Webinar

New to ANCA Vasculitis

Questions after infusion of anticlonal antibodies - can you help?

Update on my Holiday

Rheumatoid Vasculitis

5th Vaccine - No problem

Mpa and HPV vaccine

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