Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for October 2012

ESR Climbing - Any info?

Hello, husband with WG. He is still settling in with a new consultant down here in Devon and due to see her in December after an MRI scan. He is on 15mg per...

Hello, husband with WG. He is still settling in with a new consultant down here ...

Nadine99

•12 years ago

5 Replies

VASCULITIS UK - WEBSITE UPDATE

Just to let you know that there have been two updates to the website. The first is an extended report on "Vasculitis and the Eyes" which was originally...

Just to let you know that there have been two updates to the website. The first ...

PatriciaAnn

•12 years ago

3 Replies

Great News! and a request...

Has chemo cycle 8 yesterday and the consultant wandered round to tell me how pleased they are with my bloods. Every now well within normal thresholds. So my...

Has chemo cycle 8 yesterday and the consultant wandered round to tell me how ple...

Wellsie

•12 years ago

2 Replies

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Hi im experiencing severe jaw pain since being on alendronic acid . I know this can be a rare side effect . Any advice ?

Tidgypud

•12 years ago

6 Replies

Cold Sores

Have been on azathaprine for a couple of months and have recently developed a cold, which has got worse and have some terrible cold sores. I am sure I had...

Have been on azathaprine for a couple of months and have recently developed a co...

Dillybean

•12 years ago

5 Replies

If you have not received an email today regarding the Vasculitis and Rituximab information please contact John thank you..

I have sent out over 50 emails this morning... regarding the Vasculitis and Rituximab.....if you have written contacted or phoned John in the last few days and...

I have sent out over 50 emails this morning... regarding the Vasculitis and Ritu...

John_Mills

Volunteer•12 years ago

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Channel 4 Dispatches: tonight at 8pm "Government's Health Reforms"

programme that might be worth watching tonight on Channel 4 Dispatches:- Moorland Sanders asks if the handover of health services to the private sector is a...

programme that might be worth watching tonight on Channel 4 Dispatches:- Moorlan...

John_Mills

Volunteer•12 years ago

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good news!

I got an esa letter today telling me that the money they pay me has changed. my heart sank. then I saw the magic words "because you are in the support group"...

I got an esa letter today telling me that the money they pay me has changed. my ...

hamble99b

Volunteer•12 years ago

8 Replies

Vasculitis and Rituximab

We have received about 50 responses to this appeal, which is amazing!! John has now received instructions on what to do next so will be in touch. If there is...

We have received about 50 responses to this appeal, which is amazing!! John has ...

John_Mills

Volunteer•12 years ago

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If you are thinking about Christmas Cards please think about Vasculitis UK Christmas Cards.. :-)

http://www.vasculitis.org.uk/news/christmas-cards-v-uk-oct-12

John_Mills

Volunteer•12 years ago

2 Replies

Just a reminder about the Merseyside,Cheshire and North Wales Vasculitis Support Group Meeting 6th November

http://www.vasculitis.org.uk/events/merseyside-cheshire-vsg-nov-12

John_Mills

Volunteer•12 years ago

2 Replies

Interesting article found on Twitter this morning (from St Thomas's in London) regarding autoimmune disease and fighting cancer.

http://www.voanews.com/content/autoimmune-disease-antibodies-help-fight-cancer/1533596.html

http://www.voanews.com/content/autoimmune-disease-antibodies-help-fight-cancer/1...

John_Mills

Volunteer•12 years ago

1 Reply

Please see below.

Just wanted to ask, does anyone have neuropathy along with their vasculitis? I have rheumatoid vasculitis diagnosed about two weeks ago but have had neuropathy...

Just wanted to ask, does anyone have neuropathy along with their vasculitis? I h...

Wolf52

•12 years ago

12 Replies

Problems with Cyclophosphamide

I have had four infusions of Cyclo plus two infusions of mezine to help control my wergeners but each time I have had each infusion I have been very ill indeed...

I have had four infusions of Cyclo plus two infusions of mezine to help control ...

Dave_Buzzey_B

•12 years ago

17 Replies

Have you received Rituximab for treating your Vasculitis?

If you have, please you could you contact John, john.mills@vasculitis.org.uk or telephone 01629650549... John will explain... this could be very important for...

If you have, please you could you contact John, john.mills@vasculitis.org.uk or ...

John_Mills

Volunteer•12 years ago

6 Replies

We, at Vasculitis UK would like some help please THIS IS VERY IMPORTANT

.. if you have received treatment with Rituximab, please could you contact John Mills either by email john.mills@vasculitis.org.uk or telephone 01629650549 He...

.. if you have received treatment with Rituximab, please could you contact John ...

John_Mills

Volunteer•12 years ago

5 Replies

British Society Of Rheumatologists meeting in London today to discuss ANCA Associated Vasculitis National Guidelines.

John was asked to take part in this meeting by Dr Richard Watts.. the meeting was called by the BSR to discuss reviewing, revising and updating the National...

John was asked to take part in this meeting by Dr Richard Watts.. the meeting wa...

John_Mills

Volunteer•12 years ago

6 Replies

HUVS question

My husband was diagnosed with HUVS about 4 years ago, To date he has only ever seen a renal consultant and a respiratory consultant for the effects it has had...

My husband was diagnosed with HUVS about 4 years ago, To date he has only ever s...

barneyboy

•12 years ago

2 Replies

Has anyone any experience of Kings Mill Hospital in Nottingham please?

If anyone has experience of Kings Mill Hospital... if you would rather send a private message that is fine... thank you Susan

If anyone has experience of Kings Mill Hospital... if you would rather send a pr...

John_Mills

Volunteer•12 years ago

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Is anyone interested in joining a very informal support/gathering up in the Highlands of Scotland?

I have been contacted today by a young lady who lives in the Highlands of Scotland who is very keen to organise an informal get together/group for people with...

I have been contacted today by a young lady who lives in the Highlands of Scotla...

John_Mills

Volunteer•12 years ago

1 Reply

I keep hearing about 2 year and 5 year thresholds. What exactly does that mean?

Do we expect it to come back in 2 years, 5 years? Are we OK if it doesn't?

LynneJ

Vasculitis UK•12 years ago

1 Reply

has anyone in the writington,wigan, leigh and ashton health trust been prescribed retuximub or cellcept for wegeners???........georgia

gsmith

•12 years ago

5 Replies

Spreading the word

Good news! I took a Routemap to my doctors last week and left it for the Practice Manager. She has just rung to say that she will be showing the doctors and...

Good news! I took a Routemap to my doctors last week and left it for the Prac...

LynneJ

Vasculitis UK•12 years ago

1 Reply

Hearing Aids

I have Vasculitis .... GPA. First manifestation of this was 26 years ago as a major ear infection. I have since been on first name terms with a number of ear...

I have Vasculitis .... GPA. First manifestation of this was 26 years ago as a ma...

Dbis22

•12 years ago

2 Replies

Daily Mail 23rd Oct

Long report in the Daily Mail today about a young lady who died from Wegener's. Good publicity for vasculitis but shame VUK is not mentioned, they seem to have...

Long report in the Daily Mail today about a young lady who died from Wegener's. ...

Nadine99

•12 years ago

6 Replies

Steroids and hair loss?

I have had 3 quite severe phases of hairloss over the last year or so, and not been able to work out what the pattern was. It was suggested to me that it...

I have had 3 quite severe phases of hairloss over the last year or so, and not b...

Galaxy2

•12 years ago

5 Replies

Does anyone with Vasculitis in the group claim attendance allowance for their care?

John_Mills

Volunteer•12 years ago

4 Replies

Daily mail newspaper 23/10/12 health section page 51 " When tiredness is the sign of a silent killer"

Llinos

•12 years ago

2 Replies

Interesting and Informative article in the Daily Mail online today

This is a very informative and interesting article.. In Lauren's case, it is particularly sad as she was Grant and Adrienne's only daughter. Unfortunatly, John...

This is a very informative and interesting article.. In Lauren's case, it is par...

John_Mills

Volunteer•12 years ago

6 Replies

Stop the Abolition of Disability Living Allowance for Personal Independence Payments

If you feel you would like to support this....you can sign this petition.. http://epetitions.direct.gov.uk/petitions/38182

If you feel you would like to support this....you can sign this petition.. ht...

John_Mills

Volunteer•12 years ago

4 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for October 2012

ESR Climbing - Any info?

VASCULITIS UK - WEBSITE UPDATE

Great News! and a request...

Hi im experiencing severe jaw pain since being on alendronic acid . I know this can be a rare side effect . Any advice ?

Cold Sores

If you have not received an email today regarding the Vasculitis and Rituximab information please contact John thank you..

Channel 4 Dispatches: tonight at 8pm "Government's Health Reforms"

good news!

Vasculitis and Rituximab

If you are thinking about Christmas Cards please think about Vasculitis UK Christmas Cards.. :-)

Just a reminder about the Merseyside,Cheshire and North Wales Vasculitis Support Group Meeting 6th November

Interesting article found on Twitter this morning (from St Thomas's in London) regarding autoimmune disease and fighting cancer.

Please see below.

Problems with Cyclophosphamide

Have you received Rituximab for treating your Vasculitis?

We, at Vasculitis UK would like some help please THIS IS VERY IMPORTANT

British Society Of Rheumatologists meeting in London today to discuss ANCA Associated Vasculitis National Guidelines.

HUVS question

Has anyone any experience of Kings Mill Hospital in Nottingham please?

Is anyone interested in joining a very informal support/gathering up in the Highlands of Scotland?

I keep hearing about 2 year and 5 year thresholds. What exactly does that mean?

has anyone in the writington,wigan, leigh and ashton health trust been prescribed retuximub or cellcept for wegeners???........georgia

Spreading the word

Hearing Aids

Daily Mail 23rd Oct

Steroids and hair loss?

Does anyone with Vasculitis in the group claim attendance allowance for their care?

Daily mail newspaper 23/10/12 health section page 51 " When tiredness is the sign of a silent killer"

Interesting and Informative article in the Daily Mail online today

Stop the Abolition of Disability Living Allowance for Personal Independence Payments

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