Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for September 2019

Tocilizumab and rash

For the last nine weeks I’ve been self injecting with tocilizumab.....and really pleased with the result. It’s taken time to settle in, but I’m a lot better...

For the last nine weeks I’ve been self injecting with tocilizumab.....and really...

BronteM

•5 years ago

9 Replies

Central lines?

What is the best line for vasculitis patients : Central line , portacath , Picc line , proline ??? Anyone have extremely difficult cannulation ?

What is the best line for vasculitis patients : Central line , portacath , Picc...

samakaaaa

•5 years ago

5 Replies

European Vasculitis Course & Workshop - Cambridge September 2019

We have just returned from the 3 day annual European Vasculitis Course, (EUVAS) which was held in Cambridge this year. John Mills, as a Vasculitis UK patient...

We have just returned from the 3 day annual European Vasculitis Course, (EUVAS) ...

Suzym2u

Moderator•5 years ago

3 Replies

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Lincolnshire Vasculitis Support Meeting / coffee / lunch October 19th

Please follow this link for more detail https://www.vasculitis.org.uk/events/lincssg-2019-09. coffee and tea will be available to purchase. If anyone wants...

Please follow this link for more detail https://www.vasculitis.org.uk/events/lin...

Suzym2u

Moderator•5 years ago

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Oxfordshire Vasculitis Support Group Lunch - October 13th

The next informal lunch for the Oxfordshire Vasculitis Support Group will be at 12 noon on Sunday 13th October 2019 ... for more details please follow this...

The next informal lunch for the Oxfordshire Vasculitis Support Group will be at ...

Suzym2u

Moderator•5 years ago

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Vasculitis Support Group West Midlands Meeting October 6th

Speakers on this occasion are:- Anjali Crawshaw, a Consultant Respiratory Physician from UHB (Queen Elizabeth Hospital) who will talk to us about the...

Speakers on this occasion are:- Anjali Crawshaw, a Consultant Respiratory Physi...

Suzym2u

Moderator•5 years ago

4 Replies

Northamptonshire Vasculitis Support Group Meeting - October 5th

Northamptonshire Vasculitis Support Group Meeting will be held at 13.00 on Saturday 5th October- at at the Kiaros Centre, Wilks Walk, Grange Park, Northampton...

Northamptonshire Vasculitis Support Group Meeting will be held at 13.00 on Satur...

Suzym2u

Moderator•5 years ago

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York Support Group

We’ve booked Huntington Memorial Hall as usual, for Sunday the 13th of October between 2:30pm and 5:00pm. The hall is just off the A1237, to the north of York...

We’ve booked Huntington Memorial Hall as usual, for Sunday the 13th of October b...

RichardE

Volunteer•5 years ago

2 Replies

West Yorkshire Support Group

The next West Yorkshire support group meeting will be on Sunday the 20th of October between 2:00pm and 5:00pm. The meeting will be held at the Gomersal Park...

The next West Yorkshire support group meeting will be on Sunday the 20th of Octo...

RichardE

Volunteer•5 years ago

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What I did on Holiday, as promised.

Dear All, I went to 'Sandpipers', which is Run by ReVitalise, formerly the Winged Fellowship Trust- founded by Joan Brander MBE. (If anyone want more details,...

Dear All, I went to 'Sandpipers', which is Run by ReVitalise, formerly the Winge...

AndrewT

•5 years ago

2 Replies

Vasculitis & heart problems

Hi everyone Ive recently been diagnosed with atrial tachycardia following an EPS so waiting for an ablation. I also have ANCA associated vasculitis which was...

Hi everyone Ive recently been diagnosed with atrial tachycardia following an EP...

Mish-da

•5 years ago

31 Replies

I'm Back!

Dear All, I'm Back, from my Holiday, yes I DID have a 'Good' Time. I, absolutely Promise, to tell you ALL about it as, the Americans would say, 'Real Soon'....

Dear All, I'm Back, from my Holiday, yes I DID have a 'Good' Time. I, absolutely...

AndrewT

•5 years ago

1 Reply

Private vasculitis specialist

Does anyone see a vasculitis specialist, privately anywhere in the south west UK

Devoid

•5 years ago

1 Reply

Apixaban and WG

Hi, Is there anyone else who has WG and has a blood clot that is taking apixaban? If so can you drink alcohol or like all medications now do you have to stick...

Hi, Is there anyone else who has WG and has a blood clot that is taking apixaban...

Haggiss

•5 years ago

4 Replies

Azathioprine side effects

Hi I have EGPA and have been taking azathioprine and prednisolone for 10 years. These have managed my symptoms so I lead a fairly normal life but not the same...

Hi I have EGPA and have been taking azathioprine and prednisolone for 10 years. ...

Chipper03

•5 years ago

4 Replies

Egpa neurological question

Does anyone have experience with egpa affecting them neurologically? I had brain issues/damage three years ago and I am recovered to the point that I have...

Does anyone have experience with egpa affecting them neurologically? I had brai...

Cathywp2

•5 years ago

2 Replies

Critical illness

Hi there - I’ve been diagnosed with vasculitus (GPA) - is this classed as a critical illness?

Hi there - I’ve been diagnosed with vasculitus (GPA) - is this classed as a crit...

Lme1970

•5 years ago

3 Replies

Is this rash Vasculitis?

Hi, I have had this rash for 4.5 years and was initially told it was pityriasis Rosea. After repeated visits to the gp I get a referral to dermatology. All I...

Hi, I have had this rash for 4.5 years and was initially told it was pityriasis ...

HP11

•5 years ago

4 Replies

Dropping pred

I have been diagnosed with large vessel vasculitis and recently dropped from35 to30mg pred. My symptoms have all come back. Does anyone think this is just due...

I have been diagnosed with large vessel vasculitis and recently dropped from35 t...

Freeman12

•5 years ago

8 Replies

Buzzing/vibrating sensation in foot?

Hello again everyone. Hope you’re all as well as you can be given whatever life is currently throwing at you :)).Strange question. Does anyone else get a...

Hello again everyone. Hope you’re all as well as you can be given whatever life ...

FeelingGreatNot

•5 years ago

12 Replies

Changing from Prednisone to Hydrocortisone

I am in remission for at least 6 years, Vasculitis (MPA) have gone from 6mg Prednisone to 20mg Hydrocortisone, I became really ill quite quickly and it was...

I am in remission for at least 6 years, Vasculitis (MPA) have gone from 6mg Pre...

dizzy49

•5 years ago

3 Replies

First Rituximab Infusion

Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my...

Hi all I am waiting on blood tests to come back to see if I can have Rituximab i...

russellk3

•5 years ago

14 Replies

the poll

With reference to the poll, vasculitis to cancer, could it work the other way round, cancer first. best to all Tony

With reference to the poll, vasculitis to cancer, could it work the other way ro...

Tony-LakeDistrict

•5 years ago

5 Replies

Lincolnshire Support Group

Have you been diagnosed with vasculitis? Are you struggling to reduce your steroid dose? Do you need to talk to someone who has similar problems to yours? Do...

Have you been diagnosed with vasculitis? Are you struggling to reduce your stero...

BronteM

•5 years ago

2 Replies

Vasculitis and Cancer

Has anyone been diagnosed with Vasculitis and then maybe a few years later been diagnosed with cancer? If so what type of cancer? did it come on quickly...

Has anyone been diagnosed with Vasculitis and then maybe a few years later been ...

Suzym2u

Moderator•5 years ago

29 Replies

A bit of a ramble..

I'm hoping what I'm about to write will resonate with someone. Having chronic illness/es can be so debilitating at times and very few people seem to understand...

I'm hoping what I'm about to write will resonate with someone. Having chronic il...

Vo321

•5 years ago

11 Replies

Cutaneous Vaskulitis epilation

curtaneous vasculitis. Hi there. First of all: sorry for Bad english. I cant find similar webcommunity in switzerland, so i am here. I had diagosted by Biopsie...

curtaneous vasculitis. Hi there. First of all: sorry for Bad english. I cant fin...

Pokimoki

•5 years ago

15 Replies

Inspiration

I thought I would like to share the following and welcome people's comments.I briefly was diagnosed with ANCA (formerly Wegeners) Vasculitis which has left me...

I thought I would like to share the following and welcome people's comments.I br...

Keithtim10

•5 years ago

6 Replies

Methotrexate,day after

Hi I’m on week 5 of methotrexate for LVV, still on 40 of pred, finding today very difficult,pain in upper chest, left side of neck and left arm, general...

Hi I’m on week 5 of methotrexate for LVV, still on 40 of pred, finding today ver...

Devoid

•5 years ago

9 Replies

Frequent sneezing and a cough

Hi looking for some advice for my husband who is in medical remission for GPA. He is now only on AZA 100 Mgs he was on 150 and has successful reduced and...

Hi looking for some advice for my husband who is in medical remission for GPA. ...

Main1234

•5 years ago

5 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for September 2019

Tocilizumab and rash

Central lines?

European Vasculitis Course & Workshop - Cambridge September 2019

Lincolnshire Vasculitis Support Meeting / coffee / lunch October 19th

Oxfordshire Vasculitis Support Group Lunch - October 13th

Vasculitis Support Group West Midlands Meeting October 6th

Northamptonshire Vasculitis Support Group Meeting - October 5th

York Support Group

West Yorkshire Support Group

What I did on Holiday, as promised.

Vasculitis & heart problems

I'm Back!

Private vasculitis specialist

Apixaban and WG

Azathioprine side effects

Egpa neurological question

Critical illness

Is this rash Vasculitis?

Dropping pred

Buzzing/vibrating sensation in foot?

Changing from Prednisone to Hydrocortisone

First Rituximab Infusion

the poll

Lincolnshire Support Group

Vasculitis and Cancer

A bit of a ramble..

Cutaneous Vaskulitis epilation

Inspiration

Methotrexate,day after

Frequent sneezing and a cough

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