Posts - Vasculitis UK | HealthUnlocked

Volunteer•12 years ago

There plans to start two new Vasculitis support groups in the Reading and Liverpool area. Anyone who is interested please message us or leave a reply on this...

New Vasculitis support groups planned in the Reading area and the Liverpool area later this summer

There plans to start two new Vasculitis support groups in the Reading and Liverp...

Volunteer•12 years ago

I have found that alot of the nerves in my teeth have had to be removed which is a painful process. Could this be atributed to CSV or am I just trying to pass...

Does Vasculitis affect the nerves in your teeth?

I have found that alot of the nerves in my teeth have had to be removed which is...

Mumito66

•12 years ago

can anyone please tell me what it means to be in remission. i have wg when i took ill my egfr was 14,i had 12 courses of cyclophosphamide and my egfr improved...

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remission

can anyone please tell me what it means to be in remission. i have wg when i to...

quinnster

•12 years ago

They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more people...

Wanted Healthy people out there who are willing to take part in Dr Andrew McClean's research project Fatigue in ANCA Associated Vasculitis

They MUST be healthy (high BP or cholesterol is fine, but no major illness), whi...

Volunteer•12 years ago

Are there any Healthy people out there who are willing to take part in Dr Andrew McClean's research project. "Fatigue in ANCA Associated Vasculitis" They...

I've just had my first two infusions of rituximab last one was last Tuesday how long until I feel the benifits and start feeling better?

Hidden

•12 years ago

4 Replies

Healthy Volunteers Wanted for Dr Andrew McClean's Research Project "Why do patients with ANCA Associated Vasculitis Experience Fatigue?"

Are there any Healthy people out there who are willing to take part in Dr Andrew...

We have received an email today asking about Campath. This lady is about to start a course of treatment and is obviously very concerned.

Volunteer•12 years ago

7 Replies

Has anyone any experience of taking Campath? (Alemtuzumab)

We have received an email today asking about Campath. This lady is about to star...

ESA Fatalities, Motability Threat, Money-Off Membership £3.50 OFF AN ANNUAL SUBSCRIPTION - ENDS MIDNIGHT SUNDAY If you’re not already a member, join the...

Volunteer•12 years ago

3 Replies

Benefits and Work Newsletter April 2012

ESA Fatalities, Motability Threat, Money-Off Membership £3.50 OFF AN ANNUAL SUB...

Volunteer•12 years ago

My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's (as well as the Speyside way...

Marathon Blog 7 - Update and amendments!

My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be...

jimdrum

•12 years ago

I am having a flare up of hypersensitivity vasculitis at present, following a reduction in hydroxychloriquine sulphate (I also have SLE, Sjogren's, coeliac and...

Hypersensitivity/urticarial vasculitis - scalp lumps

I am having a flare up of hypersensitivity vasculitis at present, following a re...

Lupylass

•12 years ago

7 Replies

Yorkshire Support Group Meeting. Sun April 22nd 12.30pm TAKE A SNEAK PREVIEW OF THE PRINTED 112 page VERSION OF THE VASCULITIS ROUTE MAP.

Just one week to go to the Yorkshire Support Group meeting. The numbers have grown steadily this last few days, so if you would like to attend please contact...

Just one week to go to the Yorkshire Support Group meeting. The numbers have gro...

Hannah and a few friends are taking part in a walk, from Cowbridge through Stradowen down to Pontyclun and back to Llanharry. All of the participants will be...

Volunteer•12 years ago

1 Reply

A new Just Giving Page in memory of Humphery Jones by his grand daughter Hannah.

Hannah and a few friends are taking part in a walk, from Cowbridge through Strad...

Volunteer•12 years ago

Hey everyone! If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed...

Wegener's Granulomatosis: The Treatment (Podcast 2)

Hey everyone! If you haven't seen my posts before I am a young female, 23 to ...

missm23

•12 years ago

10 Replies

Mycophenolate side effects

I have been taking Mycophenolate Mofetil for 4 years on a dose of 2000mg per day in a split dose. 2 years ago I started to get extreme pain in my shin bones...

I have been taking Mycophenolate Mofetil for 4 years on a dose of 2000mg per day...

tracynoe

•12 years ago

6 Replies

Vasculitis has been Highlighted in the Daily Mail 12th April 2012 David was misdiagnosed with flu, pneumonia, meningitis and tuberculosis

David Tyzac thought he had common cold, eventually he was diagnosed with a lung-damaging disease and found himself battling with Wegeners Granulomatosis....

David Tyzac thought he had common cold, eventually he was diagnosed with a lung-...

Volunteer•12 years ago

It has caused foot-drop for me and I want to know if it will recover, and if so how long it will take. My consultants are pessimistic. Also it would be useful...

Is there anyone out there suffering from churg-strauss syndrome which has damaged their nerves?

It has caused foot-drop for me and I want to know if it will recover, and if so ...

Katie18

•12 years ago

17 Replies

I found out yesterday it runs in my family Dad side !

Hi Im not new but just found out yesterday that my auntie has eye vasculitis. My uncle had something and went blind( mum dosent no what but he was a heavey...

Hi Im not new but just found out yesterday that my auntie has eye vasculitis. ...

NannyAlli

•12 years ago

Jackie Thomas is organising the first South Wales Support Group meeting at The Village Hotel, Cardiff on Sunday 24th June at 2pm. The Hotel is off Junction 32...

NEW VASCULITIS SUPPORT GROUP, SOUTH WALES. First Meeting 24th June 2012.

Jackie Thomas is organising the first South Wales Support Group meeting at The V...

PatriciaAnn

•12 years ago

11 Replies

Citizens Advice Bureau's are very helpful when applying for DLA, ESA, completing forms and facing appeals.

They will also give advice if you are facing an ATOS assessment. Vasculitis UK also have some members who have been through the ATOS medical and are willing to...

They will also give advice if you are facing an ATOS assessment. Vasculitis UK a...

Volunteer•12 years ago

If you are worried about claiming ESA or DLA, a medical assessment or appeal you can join Benefits and Work for just under £20 per year. OR you can contact...

Benefits and Work Guides you can trust... Disability Living Allowance (DLA) Employment Support Allowance (ESA)

If you are worried about claiming ESA or DLA, a medical assessment or appeal you...

Volunteer•12 years ago

A colleague who has multiple sclerosis has been put on anti-fatigue medication. As you can imagine this interests me greatly, as vasculitis brings fatigue...

Are there anti-fatigue medications for vasculitis?

A colleague who has multiple sclerosis has been put on anti-fatigue medication. ...

Hidden

•12 years ago

10 Replies

any on claiming esa have you had a medical what was the outcome

I work at the moment but am not very well and work for dwp so no the pressure for getting people back to work and am wondering wether to consider earl reirment...

I work at the moment but am not very well and work for dwp so no the pressure fo...

kath12341

•12 years ago

7 Replies

Does anyone speak fluent German please?

Just a reminder about 2 Support Group meetings next weekend. Cambridge Saturday 14th April Dr Rachel Jones from Addenbrooks will be giving a...

Volunteer•12 years ago

1 Reply

Just a reminder about two support group meetings next weekend April 14th in Cambridge and April 15th in Digby (Lincoln)

Just a reminder about 2 Support Group meetings next weekend. Cambridge Saturday ...

Volunteer•12 years ago

This is part of Janine's story to read more please go to http://www.justgiving.com/JANINE-EMMA-BROWN0 With just over 2 Weeks to go until...

Janine is running in the London Marathon for Vasculitis UK in memory of Clare. Read Janine's fantastic story on Janine's Just Giving page

This is part of Janine's story to read more please go to http://www.justgiving.c...

Volunteer•12 years ago

Earlier on in the year, I asked for your experiences with the illness, Wegener's Granulomatosis. As a WG patient myself, I wanted my final year project...

My first podcast!

Earlier on in the year, I asked for your experiences with the illness, Wegener's...

missm23

•12 years ago

6 Replies

Giant Cell Question

HI, this is to any Giant Cell sufferers out there. Quick background. Had eye pain and black blobs in left eye along with temple pain and jaw pain which was...

HI, this is to any Giant Cell sufferers out there. Quick background. Had eye p...

CathT

•12 years ago

8 Replies

Diagnosis of vasculitis with a clear MRI

This question was asked on Facebook and I am really interested to see people's replies so would be grateful for any comments. Thanks Louise

This question was asked on Facebook and I am really interested to see people's r...

annie330

•12 years ago

I have received an email this morning asking me about counselling. This person has been diagnosed for about a year and has received the sledge hammer treatment...

A question on behalf of someone else, asked this morning by email, a new member to Vasculitis UK

I have received an email this morning asking me about counselling. This person h...