Posts - Vasculitis UK | HealthUnlocked

Last night I woke up choking like my sputum had "gone down the wrong hole" and had a coughing fit. When I got my breath back I had a horrific taste in my mouth...

Has anyone had any experience of a terrible taste in the mouth (like having swallowed perfume)?

Last night I woke up choking like my sputum had "gone down the wrong hole" and h...

Kelly_Jefferies

•13 years ago

Sunday 20th November 2011 11.am - 3.00pm Holiday Inn Impington "Talking About Vasculitis" Dr Sapna Trivedi, Specialist Registrar Addenbrooke's Hospital...

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Cambridge Support Group Meeting Nov 2011Dr Sapna Trivedi, Specialist Registrar Addenbrooke's Hospital talking about vasculitis

Sunday 20th November 2011 11.am - 3.00pm Holiday Inn Impington "Talking Ab...

Volunteer•13 years ago

This firm specialises in finding insurance cover fo people who are medically compromised. Go to www.conditionscovered.co.uk or tel. 08002315535 and ask for...

Holiday Insurance for pre-existing medical conditions, no age limit

This firm specialises in finding insurance cover fo people who are medically com...

A doctor once told me that Wegener's can "...burn itself out." In other words, the patient can consider that they no longer suffer the condition. Is this...

Volunteer•13 years ago

9 Replies

Is there a point when WG can be considered to have left the system?

A doctor once told me that Wegener's can "...burn itself out." In other words, t...

shanat19

•13 years ago

9 Replies

Please support Julie....she is running for V-Uk in memory of Clare Grossman who died New Years Eve 2010 due to Wegeners Granulomatosis

Please support Julie if you feel you can... she is running for vasculitis-uk on October 9th 2011.....follow the link to Julie's page on the Just Giving...

Please support Julie if you feel you can... she is running for vasculitis-uk on ...

Volunteer•13 years ago

NHS direct is going to be replaced by a new 111 service for patients to access healthcare services when they need medical help fast, but it’s not a...

Has anyone who has been diagnosed with Wegener's for more than five years, ever been diagnosed with a cardiovascular disease?

Hidden

•13 years ago

4 Replies

NHS direct is to be replaced by a new 111 service.

NHS direct is going to be replaced by a new 111 service for patients to access h...

Volunteer•13 years ago

How would i approach this diplomatically with my Gp and would be able to refer me to one?

I have been seen by a Rheumatologist for my WG since being diagnosed in 2009 but would like to see a Vasculitis Specialist.

How would i approach this diplomatically with my Gp and would be able to refer m...

moira

•13 years ago

Jo runs for Vasculitis UK Congratulations to Jo Jones who raised £465 for Vasculitis UK via just-giving in memory of Clare Grossman who lost her battle with...

Jo runs 13 miles for Clare and Vasculitis-uk September 25th 2011

Jo runs for Vasculitis UK Congratulations to Jo Jones who raised £465 for Vas...

Volunteer•13 years ago

This is not really a question but a word of encouragement, I have WG and have recently had my third course of Rituxan, and for the first time in 4yrs am...

Results of Rituxan,

This is not really a question but a word of encouragement, I have WG and have re...

Theresak

•13 years ago

Join the American Autoimmune Related Diseases Association (AARDA) in partnership with the Vasculitis Foundation as we host the first of a series of three...

Vasculitis in Autoimmunity: A Common Thread Wednesday, October 19, 2011 7:00 PM - 7:45 PM EDT

Join the American Autoimmune Related Diseases Association (AARDA) in partnership...

•13 years ago

i was diagnosed with WG 13 years ago and have always remained ANCA negative. My saddle nose deformity and nasal biopsy confirmed WG. I wondered how many...

Are any members with WG ANCA negative ?

i was diagnosed with WG 13 years ago and have always remained ANCA negative. My ...

Essex-jill

•13 years ago

5 Replies

Dr Neil Holden is running the Birmingham half Marathon...please support Neil...thank you

For people who don't know ...Vasculitis-uk (SSVT) supported Neil Holden's research project at Birmingham into the role of ANCA in vasculitis from June 2007 to...

For people who don't know ...Vasculitis-uk (SSVT) supported Neil Holden's resear...

Volunteer•13 years ago

Please use this Communty Blog to share your experiences and personal stories. These will be kept for others to read while ever this site is available. These...

Personal stories and experiences

Please use this Communty Blog to share your experiences and personal stories. Th...

Volunteer•13 years ago

This subject has been brought up many times.......some people understand that the disease is in remission because there is no evidence of disease activity but...

What is the definition, you understand of the term often used by doctors when they say "your vasculitis is in remission".

This subject has been brought up many times.......some people understand that th...

I've tried lots of treatments over the years, since being diagnosed in 1997 (ill since 1994). Cyclophosphamide was ruled out initially for fertility concerns...

Volunteer•13 years ago

9 Replies

Trying Thalidomide for cerebral vasculitis

I've tried lots of treatments over the years, since being diagnosed in 1997 (ill...

vivdunstan

Volunteer•13 years ago

Has anyone been told they have Limited Wegeners and if so what explanation was given and what treatment was given?

Volunteer•13 years ago

Dr David Jayne's team led by Dr Rona Smith at Addenbrookes are undertaking research into an existing drug, Alemtuzumab, to see if it proves to be effective in...

Vasculitis-uk support research at Addenbrookes for a new drug trial for treatment of vasculitis.

Dr David Jayne's team led by Dr Rona Smith at Addenbrookes are undertaking resea...

Volunteer•13 years ago

Has anyone experienced any side effects from having Rituximab?

JANINE EMMA BROWN is fundraising for Vasculitis UK http://shar.es/HNoG9 Janine's friend Clare Grossman lost her battle with WG and died on New Years Eve...

Volunteer•13 years ago

7 Replies

Fundraising for Vasculitis-uk Janine is going to New York

JANINE EMMA BROWN is fundraising for Vasculitis UK http://shar.es/HNoG9 Janine...

Volunteer•13 years ago

There is continuous debate about whether Wegener's granulomatosis (WG), microscopic polyangiitis (MPA) and Churg–Strauss syndrome (CSS) represent one disease...

Are there specific genetic risk factors for the different forms of ANCA-associated vasculitis?

There is continuous debate about whether Wegener's granulomatosis (WG), microsco...

•13 years ago

In the past year,since diagnosis,i have had lumps/cysts appear.6 in total,my foot,legs,side.I did read somewhere that you can get vasculitic cysts,is this...

Cysts/lumps/spots

In the past year,since diagnosis,i have had lumps/cysts appear.6 in total,my foo...

Hidden

•13 years ago

There is now a link on the Vasculitis-uk website to register and join Vasculitis UK HealthUnlocked. We would like to welcome everyone who has joined and would...

Vasculitis-uk Website

There is now a link on the Vasculitis-uk website to register and join Vasculitis...

Volunteer•13 years ago

http://rheumatology.oxfordjournals.org/content/50/10/1916.abstract?ct=ct

Comparison of the epidemiology of anti-neutrophil cytoplasmic antibody-associated vasculitis between Japan and the UK

•13 years ago

If anyone would like information regarding claiming benefits eg:- Disability Living Allowance (DLA), Moving from the old "Incapicity Benefit" to Employment...

Benefits and Work

If anyone would like information regarding claiming benefits eg:- Disability Liv...

Sunday 9th October - 12 noon Innkeepers Lodge Hotel, Doncaster Speaker - Dr Robert Stevens (Consultant Rheumatologist, Doncaster DRI) Subject:...

Volunteer•13 years ago

4 Replies

Yorkshire Vasculitis Support Group

Sunday 9th October - 12 noon Innkeepers Lodge Hotel, Doncaster Speaker...

PatriciaAnn

•13 years ago

http://www.webmedcentral.com/article_view/2210

Who else on here has MPA vasculitis?

Jackie29

•13 years ago

6 Replies

Wegener's Granulomatosis in a Young Adult Patient

•13 years ago