Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,780 members • 6,752 posts

All posts for July 2022

Evusheld campaign

Vasculitis UK, 17 other charities and over 120 clinicians are urging @SteveBarclay to deliver #Evusheld as soon as possible to protect those who are still...

Vasculitis UK, 17 other charities and over 120 clinicians are urging @SteveBarcl...

zoe69

Administrator•2 years ago

9 Replies

Update on Insurance Claim - Staysure

Remember this post about a fortnight ago? Hi Beaver. I am insured with Staysure and had to make a claim when we had to return from Scotland due to testing...

Remember this post about a fortnight ago? Hi Beaver. I am insured with Staysure...

Investigator1

•2 years ago

17 Replies

GPA and prostate cancer

I am in the unfortunate position that I have just been diagnosed with prostate cancer, Only went into remission for my GPA at the beginning of the year What...

I am in the unfortunate position that I have just been diagnosed with prostate c...

stuc

•2 years ago

18 Replies

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Rituximab

has anybody experienced flue like symptoms or fevers on Rituximab? Or chronic sinusitis?

has anybody experienced flue like symptoms or fevers on Rituximab? Or chronic si...

Hidden

•2 years ago

7 Replies

Vasculitis itch

what is the best treatment to control the itch , or cream to use

Golf0852

•2 years ago

12 Replies

general practice and hospital doctors

I need some clarity please preferably from a medical professional. 3 years into my microscopic polyangitis I’m still baffled of which doctor to approach for...

I need some clarity please preferably from a medical professional. 3 years into...

Hidden

•2 years ago

30 Replies

Follow up to Rituximab COVID paxlovid...

Follow up: I finished paxlovid 7/16. Felt ok until 7/22 with Different symptoms from 7/11 ED visit but similar to pneumonia and sinus congestion. First...

Follow up: I finished paxlovid 7/16. Felt ok until 7/22 with Different symptoms ...

irishponies

•2 years ago

7 Replies

thanks

thanks for your replies 👍🏼

Hidden

•2 years ago

Be the first to reply

Newbie ANCA blood test

Hi Not sure if this is the right group but if story…. I was told I had adult asthma in 2018 which I never used an inhaler unless exercising. Then end of...

Hi Not sure if this is the right group but if story…. I was told I had adult ...

Casey_87

•2 years ago

13 Replies

vasovagal syncope fainting - anyone else have this?

I’m in a Gpa flare up of extreme nasal, breathing,coughing, choking episodes, reflux especially at night.I went to go to bathroom in the morning and without...

I’m in a Gpa flare up of extreme nasal, breathing,coughing, choking episodes, re...

egre

•2 years ago

7 Replies

prednisalone

Has anyone had breathing issues while on high dose prednisalone,60-80mg and did the breathing issues continue when prednisalone was stopped?

Has anyone had breathing issues while on high dose prednisalone,60-80mg and did ...

Hidden

•2 years ago

4 Replies

Joint and muscle pain after remission.

Hi. I'm very interested in the fact that so many people with vasculitis get joint and muscle pain. I've read so many posts here on HealthUnlocked where people...

Hi. I'm very interested in the fact that so many people with vasculitis get join...

Willmebe

•2 years ago

19 Replies

Rituximab covid paxlovid etc...

Hello, I managed to get COVID despite precautions such as vaccinations, mask wearing, isolation, etc. I had a fever, and painful, loud breathing, etc....

Hello, I managed to get COVID despite precautions such as vaccinations, mask wea...

irishponies

•2 years ago

14 Replies

Well Worth Looking Into

Dear Everyone, Yesterday I had one of my routine, three or four times a year, 'Check Ups' with my Consultant. Ordinarily my Mother, who accompanies me, Drives...

Dear Everyone, Yesterday I had one of my routine, three or four times a year, '...

AndrewT

•2 years ago

4 Replies

Has anyone come off prednisolone completely for Vasculitis GPA?

Hi everyone, I have been diagnosed for a year with GPA, I was very ill by the time I was diagnosed with an ANCA count of >177, it has just got down to 0 and I...

Hi everyone, I have been diagnosed for a year with GPA, I was very ill by the ti...

Wyllow

•2 years ago

23 Replies

Travel Insurance with cover for GPA

Hi I am looking for suggestions for travel insurance going to Europe & possibly on a cruise next year. If anyone has had the unfortunate experience of having...

Hi I am looking for suggestions for travel insurance going to Europe & possibly ...

Beaver

•2 years ago

12 Replies

Managed to avoid COVID for two years then…

Tested positive Sunday morning with flu type symptoms. Phoned 111 and had the Intravenous treatment on Monday. I cannot fault the system it’s nice to think...

Tested positive Sunday morning with flu type symptoms. Phoned 111 and had the In...

Dave34

•2 years ago

1 Reply

UPDATE: More than hundred responses! We did it!

I have posted this before. They have only 28 responses from vasculitis patients, if we want to be seen as a different cohort we need to have 50+ responses....

I have posted this before. They have only 28 responses from vasculitis patients,...

zoe69

Administrator•2 years ago

15 Replies

Alternative name for high dose Prednisone = Chemotherapy

I started on my journey of horror 8 months ago with GCA and a script for 60 mg Prednisone, which I dutifully took for 10 weeks and then started a gradual...

I started on my journey of horror 8 months ago with GCA and a script for 60 mg P...

MarksPoint

•2 years ago

23 Replies

A Very Useful 'Mistake'

Dear All, a few weeks ago the 'TOP' Part, of my Alcohol Gel Dispenser, Broke on me- such that it wouldn't Operate. I had a 'Spare' Pump, from a Spray Bottle,...

Dear All, a few weeks ago the 'TOP' Part, of my Alcohol Gel Dispenser, Broke on...

AndrewT

•2 years ago

Be the first to reply

hair loss?

My diagnosis with MPA was confirmed in January 2022. In March I had 4 infusions of Truxima, and have been tapering prednisone from 60mg to 5 mg. Sleeping...

My diagnosis with MPA was confirmed in January 2022. In March I had 4 infusions...

GinnyMa

•2 years ago

8 Replies

Please help me

Hi. Nobody said this was going to be so hard. I feel like I am loosing my mind. Forgetting to do things that I should know. Cyclo drip yesterday was not the...

Hi. Nobody said this was going to be so hard. I feel like I am loosing my mind. ...

Twin7

•2 years ago

25 Replies

Rheumatology patient survey from the University of Cambridge and patient groups

An opportunity to put our point of view forward with a patient survey. All the details are to be found here on the Lupus forum....

An opportunity to put our point of view forward with a patient survey. All the d...

Hoofprints

•2 years ago

2 Replies

Viral meds for EGPG

Help, my husband and I are on a cruise, we managed to go ashore to beautiful place Cadiz. After visiting Cadiz we had a sea day but my husband developed a...

Help, my husband and I are on a cruise, we managed to go ashore to beautiful pla...

alybill

•2 years ago

4 Replies

Predisolone one year on

Hi I have been diagnosed with Vasculitis now for just over a year and I am still taking about twenty odd tablets per day and I know everyone says it’s going to...

Hi I have been diagnosed with Vasculitis now for just over a year and I am still...

Dave34

•2 years ago

8 Replies

Rheumatology patient survey from the University of Cambridge and patient groups.

SURVEY I did it - it took me 43 minutes in total. Rheumatology patient survey from the University of Cambridge and patient groups. This survey asks about your...

SURVEY I did it - it took me 43 minutes in total. Rheumatology patient survey f...

zoe69

Administrator•2 years ago

3 Replies

New to vasculitis

Hi there from Canada looking for advice as newly diagnosed with systemic anca vasculitis at 52 yrs young. Lonely journey with little to no direction from...

Hi there from Canada looking for advice as newly diagnosed with systemic anca va...

Twin7

•2 years ago

20 Replies

Hospital madness

I’m pretty shocked tonight. I’ve been quite ill this year, spent some time in hospital, had a few trips to a and e, had multiple outpatient appointments over...

I’m pretty shocked tonight. I’ve been quite ill this year, spent some time in ...

Galaxy2

•2 years ago

15 Replies

An Update on my previous post. Just started Cyclophosphamide infusions.

Just an update on my previous post. Had my first Cyclophosphamide infusion on Monday, 4 days ago. First 2 days felt OK, just a little quizy at times, they...

Just an update on my previous post. Had my first Cyclophosphamide infusion on M...

HappyLung

•2 years ago

16 Replies

Made it through the other side of Covid

Hi everybody, I submitted a post a couple of weeks ago explaining I had tested positive for Covid and the following Day I had received Monoclonal Antibody...

Hi everybody, I submitted a post a couple of weeks ago explaining I had tested p...

Investigator1

•2 years ago

13 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2022

Evusheld campaign

Update on Insurance Claim - Staysure

GPA and prostate cancer

Rituximab

Vasculitis itch

general practice and hospital doctors

Follow up to Rituximab COVID paxlovid...

thanks

Newbie ANCA blood test

vasovagal syncope fainting - anyone else have this?

prednisalone

Joint and muscle pain after remission.

Rituximab covid paxlovid etc...

Well Worth Looking Into

Has anyone come off prednisolone completely for Vasculitis GPA?

Travel Insurance with cover for GPA

Managed to avoid COVID for two years then…

UPDATE: More than hundred responses! We did it!

Alternative name for high dose Prednisone = Chemotherapy

A Very Useful 'Mistake'

hair loss?

Please help me

Rheumatology patient survey from the University of Cambridge and patient groups

Viral meds for EGPG

Predisolone one year on

Rheumatology patient survey from the University of Cambridge and patient groups.

New to vasculitis

Hospital madness

An Update on my previous post. Just started Cyclophosphamide infusions.

Made it through the other side of Covid

Search posts

Pinned Posts

Latest poll

If you have had covid and contacted a medical professional/hospital what medication/treatments were you offered?

Topics

Archive

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2022

﻿Evusheld campaign

Update on Insurance Claim - Staysure

GPA and prostate cancer

Rituximab

Vasculitis itch

general practice and hospital doctors

Follow up to Rituximab COVID paxlovid...

thanks

Newbie ANCA blood test

vasovagal syncope fainting - anyone else have this?

prednisalone

Joint and muscle pain after remission.

Rituximab covid paxlovid etc...

Well Worth Looking Into

Has anyone come off prednisolone completely for Vasculitis GPA?

Travel Insurance with cover for GPA

Managed to avoid COVID for two years then…

﻿UPDATE: More than hundred responses! We did it!

Alternative name for high dose Prednisone = Chemotherapy

A Very Useful 'Mistake'

hair loss?

Please help me

Rheumatology patient survey from the University of Cambridge and patient groups

Viral meds for EGPG

Predisolone one year on

Rheumatology patient survey from the University of Cambridge and patient groups.

New to vasculitis

Hospital madness

An Update on my previous post. Just started Cyclophosphamide infusions.

Made it through the other side of Covid

Search posts

Pinned Posts

Latest poll

If you have had covid and contacted a medical professional/hospital what medication/treatments were you offered?

Topics

Archive

Evusheld campaign

UPDATE: More than hundred responses! We did it!