Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for March 2020

COVID-19 Risk Assessment ( VUK )

https://www.vasculitis.org.uk/news/coronavirus-covid-19 There is a new COVID19 risk assessment page on the website for those who have not received an official...

https://www.vasculitis.org.uk/news/coronavirus-covid-19 There is a new COVID19 ...

Suzym2u

Moderator•5 years ago

1 Reply

Advice on Shielding

Hi All I have yet to get a letter telling me I'm high risk but am on rituximab and predisolone so know I am and just wanted advice on shielding. I live in a...

Hi All I have yet to get a letter telling me I'm high risk but am on rituximab a...

Galaxy2

•5 years ago

12 Replies

Cancelled Treatment

I have had GPA for four years and have changed from AZA to Rituximan infusions and received my first one early November. I was due to receive one every...

I have had GPA for four years and have changed from AZA to Rituximan infusions a...

Red-head44

•5 years ago

7 Replies

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Chart to work out if you are high risk

Please see picture it might help some people sort out weather you are high risk or not it has come from Addenbrooks Vasculitis

Please see picture it might help some people sort out weather you are high risk ...

buster1502

•5 years ago

6 Replies

Email from PatientMPower

Has anyone received an email from PatientMPower asking for name DOB Consultants name etc. I downloaded this app when I started my medications back in 2017. If...

Has anyone received an email from PatientMPower asking for name DOB Consultants ...

Longwilloe

•5 years ago

1 Reply

Corona virus

Morning all I am trying to clarify if I should have recieved a letter or text. I have Vasculitis GPA I am on methotrexate I have high blood pressure. On...

Morning all I am trying to clarify if I should have recieved a letter or text. ...

buster1502

•5 years ago

25 Replies

Waitrose priority

Hi there I got an email yesterday from Waitrose which said their records show I am over 70 so can be on a priority list for booking slots. The idea is that for...

Hi there I got an email yesterday from Waitrose which said their records show I ...

2534

•5 years ago

3 Replies

Does My Mom stay incompasated?

Hello- My Mother was diagnosed with Churg Straus in 2018 She stayed incompasated does anyone know if She'll ever get mobility back in Her hands and feet!?

Hello- My Mother was diagnosed with Churg Straus in 2018 She stayed incompasated...

Arizona55

•5 years ago

1 Reply

Mepolizumab and C19

My wife has EGPA and currently receives monthly injections of Mepolizumab at the local hospital. We are concerned that going to hospital may expose her to the...

My wife has EGPA and currently receives monthly injections of Mepolizumab at the...

Riff1954

•5 years ago

4 Replies

What after 12 Weeks (at least)?

Hi, I understand we should shield for at least 12 weeks to protect ourselves and the system (so it can deal with the onslaught) and let the pandemic peter out....

Hi, I understand we should shield for at least 12 weeks to protect ourselves and...

NacMacFeegle

•5 years ago

10 Replies

Chemo appointments?

Having read the advice on shielding for vasculitis patients, how do I manage the nurse’s visit to do blood test and a hospital appointment for regular chemo?

Having read the advice on shielding for vasculitis patients, how do I manage the...

Bowlsjack

•5 years ago

5 Replies

How do you train a husband?

As a chemistry undergraduate I was part of a research project trying to reproduce new molecules and find a use for them. My molecule made everyone in the lab...

As a chemistry undergraduate I was part of a research project trying to reproduc...

BronteM

•5 years ago

8 Replies

With MPA vasculitis

What does 'shielding' entail?

trebar

•5 years ago

3 Replies

Red marks on body

Hey guys I’ve got red marks appearing on my chest upper arms and back, it’s seems to be under my skin rather than a rash I asked my Vasculitis doctor and he...

Hey guys I’ve got red marks appearing on my chest upper arms and back, it’s seem...

Liverpool05

•5 years ago

5 Replies

NHS notifications

Hi I hope you’re all staying safe. Has anyone had the nhs notification of being identified as at risk yet? My son has asthma and he got his yesterday (he’s an...

Hi I hope you’re all staying safe. Has anyone had the nhs notification of being ...

Webbyj

•5 years ago

73 Replies

Coronavirus COVID-19 useful links for those who have a diagnosis of Vasculitis.

Clinical guide for the management of rheumatology patients during the coronavirus pandemic...

Clinical guide for the management of rheumatology patients during the coronaviru...

Suzym2u

Moderator•5 years ago

7 Replies

Guidance for Vasculitis Patients - COVID19

https://www.vasculitis.org.uk/news/coronavirus-covid-19 March 21st and March 22nd updates

https://www.vasculitis.org.uk/news/coronavirus-covid-19 March 21st and March 22...

Suzym2u

Moderator•5 years ago

1 Reply

What to do (although I think I know what to do)!

I have Tak (all be it in drug remission) and am on the dreaded but wonderful Methotrexate. I am overdue my monthly blood test but have one booked with the...

I have Tak (all be it in drug remission) and am on the dreaded but wonderful Met...

PaddyPop

•5 years ago

3 Replies

Mothering Sunday concert

Just had a wonderful time being entertained by my grandchildren for Mothering Sunday. We were able to connect via an app called zoom. It was really easy to...

Just had a wonderful time being entertained by my grandchildren for Mothering Su...

BronteM

•5 years ago

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Vasculitis and immunosuppressants

I have GPA, diagnosed 7 years ago and currently kept under control with azathioprine. I am now on a very low dose and my consultant has occasionally considered...

I have GPA, diagnosed 7 years ago and currently kept under control with azathiop...

MAC12

•5 years ago

4 Replies

Latest information - COVID19 - Government Publication March 21st Guidance on Shielding and Protecting those who are Vulnerable

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-...

John_Mills

Volunteer•5 years ago

2 Replies

High risk or not with cerebral vasculitis and the virus

Hi my husband had cerebral vasculitis nearly 7 years ago. He has not been on any drugs for a few years now, but did start getting seizures about 2 years ago....

Hi my husband had cerebral vasculitis nearly 7 years ago. He has not been on an...

Simmonds797

•5 years ago

15 Replies

Vasculitis chest probs

Hi had my first infusion of rituximab days ago, not expecting miricles but was wondering why I still have a husky voice and feel as though when I get like that...

Hi had my first infusion of rituximab days ago, not expecting miricles but was w...

Cookyboy1

•5 years ago

2 Replies

Virus Concerns

I have MPA and take MMF daily and have done now for 5 years, currently have reduced my dosage down to one and half gr a day. All the advice out there for...

I have MPA and take MMF daily and have done now for 5 years, currently have redu...

tisme2

•5 years ago

10 Replies

Online shopping, home delivery, click and collect, first hour in store priority for elderly, disabled, self-isolating

Hi all. I hope you are all holding up during this period of mayhem. My partner received an email from Sainsbury's early today setting out measures to help...

Hi all. I hope you are all holding up during this period of mayhem. My partner...

Hoofprints

•5 years ago

3 Replies

Nerve damage, tremors, shaking

How do you know if you have nerve damage with mpa vasculitis? Is that what causes tremors and shaking ?

How do you know if you have nerve damage with mpa vasculitis? Is that what cause...

Hidden

•5 years ago

12 Replies

Lincolnshire Support Group

Sandy and I have cancelled the meeting that we had arranged for April 4th at the Kings Head in Navenby. We are very sorry that we won’t be able to catch up...

Sandy and I have cancelled the meeting that we had arranged for April 4th at the...

BronteM

•5 years ago

Be the first to reply

A Change, from Doom & Gloom

Dear All, It's Mother's Day, on Sunday, and I have been Looking/ Working towards it.... I have Today, Finished my Mothers Day Place Mat, Bought her a 'Cottage'...

Dear All, It's Mother's Day, on Sunday, and I have been Looking/ Working towards...

AndrewT

•5 years ago

5 Replies

Coronavirus- self isolation, do I remove my child from school?

What do I do...I'm immune supressed and coronavirus has been confirmed in my town. (Currently one case, probs more tho) I'm a single mum with a 4 year old. Do...

What do I do...I'm immune supressed and coronavirus has been confirmed in my tow...

jolittle93

•5 years ago

8 Replies

Scrub-a-dub-dub vasci peeps. Here's how:

https://www.npr.org/sections/health-shots/2020/03/14/811609026/the-new-coronavirus-can-live-on-surfaces-for-2-3-days-heres-how-to-clean-them

https://www.npr.org/sections/health-shots/2020/03/14/811609026/the-new-coronavir...

michichgo

•5 years ago

Be the first to reply

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for March 2020

COVID-19 Risk Assessment ( VUK )

Advice on Shielding

Cancelled Treatment

Chart to work out if you are high risk

Email from PatientMPower

Corona virus

Waitrose priority

Does My Mom stay incompasated?

Mepolizumab and C19

What after 12 Weeks (at least)?

Chemo appointments?

How do you train a husband?

With MPA vasculitis

Red marks on body

NHS notifications

Coronavirus COVID-19 useful links for those who have a diagnosis of Vasculitis.

Guidance for Vasculitis Patients - COVID19

What to do (although I think I know what to do)!

Mothering Sunday concert

Vasculitis and immunosuppressants

Latest information - COVID19 - Government Publication March 21st Guidance on Shielding and Protecting those who are Vulnerable

High risk or not with cerebral vasculitis and the virus

Vasculitis chest probs

Virus Concerns

Online shopping, home delivery, click and collect, first hour in store priority for elderly, disabled, self-isolating

Nerve damage, tremors, shaking

Lincolnshire Support Group

A Change, from Doom & Gloom

Coronavirus- self isolation, do I remove my child from school?

Scrub-a-dub-dub vasci peeps. Here's how:

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