Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for July 2021

Develop a testing tool - the link is no longer valid. I presume they have enough answers John. If not let me know.Jennifer

Develop a testing tool

Red-head44

•3 years ago

3 Replies

What does it mean if you have Paucci Immune Vasculitis?

I was hoping the consultant might be more specific in telling me the type of vasculitis I have. My own research seems to suggest Microscopic Polyangilitis but...

I was hoping the consultant might be more specific in telling me the type of vas...

Dave34

•3 years ago

5 Replies

Checking for flare when on tocilizumab

Hi has anyone come across how they can check inflammation levels when on tocilizumab?

Hi has anyone come across how they can check inflammation levels when on tociliz...

Devoid

•3 years ago

8 Replies

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

For those members who live in Wales in the U.K.

Have you experienced problems getting referrals to other hospitals in Wales? Have you experienced problems getting a cross border referral to England to a...

Have you experienced problems getting referrals to other hospitals in Wales? Ha...

John_Mills

Volunteer•3 years ago

1 Reply

Post Covid Vasulitis

Long Covid Vasculitis. I feel stuck my aorta is sore. Possible intestinal bleeding. I've pushed for a scan which is next Monday. Suspect calf clot today. It...

Long Covid Vasculitis. I feel stuck my aorta is sore. Possible intestinal bleedi...

M3LZY

•3 years ago

2 Replies

Mycophenolate

I have just started on mycophenolate . I am having some awful side effects . Severe diarrhoea and stomach pains . I can eat very ill . I have only been on them...

I have just started on mycophenolate . I am having some awful side effects . Sev...

artists

•3 years ago

18 Replies

Working in schools with Vasculitis

Hi I am a teacher who has been recently diagnosed with Vasculitis. I must admit I am really worried about returning to school in September, especially how the...

Hi I am a teacher who has been recently diagnosed with Vasculitis. I must admit ...

Dave34

•3 years ago

5 Replies

Blood tests

Can I ask you all a fairly simple question how often should I have my blood profiling carried out. I was diagnosed in May ANCA positive with GPA Spent over 2...

Can I ask you all a fairly simple question how often should I have my blood prof...

Hidden

•3 years ago

6 Replies

I think l have shingles & l have GPA & can’t get to a doctor..

Anyone know what’s needed?

Chamad

•3 years ago

4 Replies

Freedom Day Message from Jane Edwards and VUK. Daily Mirror 16th July 2021

https://www.vasculitis.org.uk/news/freedom-day-message-from-vuk

John_Mills

Volunteer•3 years ago

Be the first to reply

Updated COVID19 page - Vasculitis UK website - 20th July 2021

This page has been recently updated https://www.vasculitis.org.uk/news/coronavirus-covid-19

This page has been recently updated https://www.vasculitis.org.uk/news/coronavi...

John_Mills

Volunteer•3 years ago

1 Reply

Do you feel your present health status would have been better if you had:

a) Been diagnosed earlier b) received more appropriate treatment and care c) or both Please leave any appropriate replies below. Thank you John

a) Been diagnosed earlier b) received more appropriate treatment and care c) or...

John_Mills

Volunteer•3 years ago

38 Replies

Waning antibody levels over time

The Guardian this afternoon ran an article about waning antibody levels after the vaccine, and why boosters are so important....

The Guardian this afternoon ran an article about waning antibody levels after th...

vivdunstan

Volunteer•3 years ago

4 Replies

Newly Diagnosed

I'm a 68 year old female diagnosed with EGPA November 2020. I had adult-onset asthma plus years of sinusitis and rhinitis. After sudden excruciating pain in my...

I'm a 68 year old female diagnosed with EGPA November 2020. I had adult-onset as...

sophierenee114

•3 years ago

10 Replies

Self injection query

Can anyone who is currently on Mepolizumab or Benralizumab who are self-administering help? My wife is on Benra and has to attend the local hospital every...

Can anyone who is currently on Mepolizumab or Benralizumab who are self-administ...

Riff1954

•3 years ago

9 Replies

CEV Protection - An Alternative View

Last week I started a Conversation about the CEV being forgotten and I thank you all for your honest and passionate responses, I enjoyed reading (as everybody...

Last week I started a Conversation about the CEV being forgotten and I thank you...

Investigator1

•3 years ago

9 Replies

Cytokine with Immunostimulatory and Immunoregulatory Functions

I got this in an email from the New Scientist. I don't pretend to understand it but I recognised some of the compounds mentioned on my consultant's updates....

I got this in an email from the New Scientist. I don't pretend to understand it ...

eh66

•3 years ago

Be the first to reply

Harris1629

Hi, I feel a little fraudulent as it’s not myself who has recently been diagnosed with GPA (Granular Metosis with Polyangitis) but my husband. However, I work...

Hi, I feel a little fraudulent as it’s not myself who has recently been diagnose...

harris1629

•3 years ago

12 Replies

Help.

Is anybody else having trouble getting an appointment with a Rheumatologist who has knowledge of GPA. I’ve been fighting to get an appointment, 5 months late...

Is anybody else having trouble getting an appointment with a Rheumatologist who ...

valwood

•3 years ago

9 Replies

New Member

Hi I am new to the forum because I have just been diagnosed with Vasculitis. I have been tested, diagnosed and started treatment all in the matter of 10 days!...

Hi I am new to the forum because I have just been diagnosed with Vasculitis. I h...

Dave34

•3 years ago

2 Replies

Covid-19 vaccine efficacy in immunocompromised patients/gov.uk announcement

This was published by the government today. I would say it is quite good news, but please have in mind that *the data used is Real World Data (derived from...

This was published by the government today. I would say it is quite good news, ...

zoe69

Moderator•3 years ago

9 Replies

Massively unhappy

I have voted ‘unhappy’ but this is a massive understatement. I have no spleen ( due to childhood ITP) SLE, athsma , hypothyroidism and numerous allergies. I...

I have voted ‘unhappy’ but this is a massive understatement. I have no spleen ( ...

Chicky12

•3 years ago

1 Reply

Floating oil on urine

Has anyone experienced having what looks like oil on the surface of their urine at all. TIA ❤

Has anyone experienced having what looks like oil on the surface of their urine ...

M3LZY

•3 years ago

5 Replies

VasculitisUK is looking for people to join the Board of Trustees in Autumn 2021.

#VasculitisUK is looking for people to join the Board of Trustees in Autumn 2021. We are particularly keen to recruit forward thinking people who believe they...

#VasculitisUK is looking for people to join the Board of Trustees in Autumn 2021...

John_Mills

Volunteer•3 years ago

1 Reply

July 19th - Have we been forgotten?

I don’t know whether it’s me and believe me it’s great news of lifting restrictions on July 19th I.e. Social Distancing and Facemasks well for those who...

I don’t know whether it’s me and believe me it’s great news of lifting restricti...

Investigator1

•3 years ago

27 Replies

Vaccinations

I read that Pfizer is the better vaccination to have if you have Vasculitis or Lupus? Bit confusing.

I read that Pfizer is the better vaccination to have if you have Vasculitis or L...

shella

•3 years ago

9 Replies

Could you help develop guidelines for the management of IgA vasculitis( HSP ) in children?

Could you help develop guidelines for the management of IgA #vasculitis #HenochScholeinPurpura in children?...

Could you help develop guidelines for the management of IgA #vasculitis #HenochS...

John_Mills

Volunteer•3 years ago

Be the first to reply

Just been diagnosed with myocarditis on top of vasculitis. Feeling vulnerable and scared. Anyone else been diagnosed with this. TIA ❤

Myocarditis with vasculitis

M3LZY

•3 years ago

4 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2021

Develop a testing tool - the link is no longer valid. I presume they have enough answers John. If not let me know.Jennifer

What does it mean if you have Paucci Immune Vasculitis?

Checking for flare when on tocilizumab

For those members who live in Wales in the U.K.

Post Covid Vasulitis

Mycophenolate

Working in schools with Vasculitis

Blood tests

I think l have shingles & l have GPA & can’t get to a doctor..

Freedom Day Message from Jane Edwards and VUK. Daily Mirror 16th July 2021

Updated COVID19 page - Vasculitis UK website - 20th July 2021

Do you feel your present health status would have been better if you had:

Waning antibody levels over time

Newly Diagnosed

Self injection query

CEV Protection - An Alternative View

Cytokine with Immunostimulatory and Immunoregulatory Functions

Harris1629

Help.

New Member

Covid-19 vaccine efficacy in immunocompromised patients/gov.uk announcement

Massively unhappy

Floating oil on urine

VasculitisUK is looking for people to join the Board of Trustees in Autumn 2021.

July 19th - Have we been forgotten?

Vaccinations

Could you help develop guidelines for the management of IgA vasculitis( HSP ) in children?

Just been diagnosed with myocarditis on top of vasculitis. Feeling vulnerable and scared. Anyone else been diagnosed with this. TIA ❤

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