Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for February 2014

Anyone suffer facial pain?

When I saw the rheumotologist in October he said I have vasculitis and he believed I had GPA (Wegeners. I now have pain in my face - particularly across my...

When I saw the rheumotologist in October he said I have vasculitis and he believ...

AllyGY2013

•11 years ago

26 Replies

Post from Sheffield University this morning on Twitter.

Interesting post from Twitter this morning. It could be something for future research but would be a long way off before it would be trialled with people. But...

Interesting post from Twitter this morning. It could be something for future res...

Suzym2u

Moderator•11 years ago

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Benefits and Work February 26th Newsletter

"On Monday we broke the news that, due to a growing backlog at Atos, current employment and support allowance (ESA) claimants will be left on the benefit,...

"On Monday we broke the news that, due to a growing backlog at Atos, current emp...

Suzym2u

Moderator•11 years ago

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New to Vasculitis, Advice on symptoms and diagnosis please ?

Last year I developed a burning painful rash of red spots on both legs, feet and arms. I have SLE, Sjogrens, Raynauds and APS so thought it must be connected...

Last year I developed a burning painful rash of red spots on both legs, feet and...

Foss

•11 years ago

9 Replies

Can someone with Wegener's granulomatosis survive for 25 years without treatment ?

I've read from various sources that without treatment Wegener's granulomatosis is rapidly fatal : that most sufferers die within a year of diagnosis , e.g.......

I've read from various sources that without treatment Wegener's granulomatosis i...

a_Scot

•11 years ago

21 Replies

Has anyone remained in remission after initial Cyclophosphamine course, without going on a maintenance drug. Doc wants me to take AZA,.

I am taking Prednisone at 12.5 mg daily. I am just seeking input as I decide how to proceed.

I am taking Prednisone at 12.5 mg daily. I am just seeking input as I decide how...

tonympb

•11 years ago

12 Replies

CNS Vasculitis - Stopping medication

It's just coming upto 4 years ago since I was diagnosed with CNSV. I me with my consultant last month, who suggested that it maybe time for me to wean off of...

It's just coming upto 4 years ago since I was diagnosed with CNSV. I me with my...

kitty25

•11 years ago

13 Replies

An article from the Metro today, concerning the actor from the film The Ghostbusters. Harold Ramis.

The comedy director died in the early hours of this morning following complications from autoimmune inflammatory vasculitis, a disease that involves the...

The comedy director died in the early hours of this morning following complicati...

Suzym2u

Moderator•11 years ago

5 Replies

Hot Bath

I was diagnosed as having Churg Strauss last July (2013) and am just getting to grips with treatment of 3g of mycophenolate per day. Do others find that...

I was diagnosed as having Churg Strauss last July (2013) and am just getting to ...

jaydub

•11 years ago

6 Replies

New Colour Wristbands

Our New Colour wristbands are now available from the Vasculitis UK shop http://www.vasculitis.org.uk/shop

Our New Colour wristbands are now available from the Vasculitis UK shop http://w...

LynneJ

Vasculitis UK•11 years ago

2 Replies

Has awareness of Takayasu's by cardiologists improved. I first saw a cardiologist in 2001 but not diagnosed till 2011.

I have just discovered this forum and am finding it very interesting and informative. I would like to hear how others have been diagnosed with Takayasu's...

I have just discovered this forum and am finding it very interesting and informa...

TakPatient

•11 years ago

10 Replies

This latest poll is called " If you think you have suffered any significant permanent disability or damage due to a late diagnosis"

This poll is a direct follow on from the last poll. This poll has a multi choice option for replies. If you think you have suffered "significant" permanent...

This poll is a direct follow on from the last poll. This poll has a multi choice...

Suzym2u

Moderator•11 years ago

3 Replies

A chance to talk to Warrington CCG about NHS care in Warrington today at 2pm

http://www.warringtonccg.nhs.uk/News/Ask-Andy-February-20.htm Ask chairman Dr Andy Davies questions live from 2pm to 3pm today and share your experiences of...

http://www.warringtonccg.nhs.uk/News/Ask-Andy-February-20.htm Ask chairman Dr A...

Suzym2u

Moderator•11 years ago

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Best holiday insurance ?

I have WG and chronic kidney failure and I am going to Greece and wish to know what is the best insurance company to use. I need one that will cover me for the...

I have WG and chronic kidney failure and I am going to Greece and wish to know w...

Essex-jill

•11 years ago

9 Replies

Do you live in or around Cardiff and would like to share your story about living with Vasculitis?

We have been contacted by the South Wales Vasculitis Support Group, who were contacted by a reporter from the Western Mail who would like to feature an...

We have been contacted by the South Wales Vasculitis Support Group, who were co...

John_Mills

Volunteer•11 years ago

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New Poll in the Vasculitis HealthUnlocked Community. Vasculitis UK needs your help!

Can as many members take part in this new poll as possible, please. NHS England are holding a consultation asking for proposals with a view to improving care...

Can as many members take part in this new poll as possible, please. NHS England ...

John_Mills

Volunteer•11 years ago

2 Replies

Vaccinations and Vasculitis

Hello again! I am travelling on holiday (guided tour) to Vietnam next month for 2 weeks. I have both lived abroad and travelled extensively in the past and am...

Hello again! I am travelling on holiday (guided tour) to Vietnam next month for ...

Tambo7

•11 years ago

6 Replies

Has anyone any suggestions on how to keep the weight off when on steroids

I was diagnosed with Wengers Vasculitis last May since which time I've been on a high steroid dose which has caused me to put on significant weight Currently...

I was diagnosed with Wengers Vasculitis last May since which time I've been on a...

Lauriescott1

•11 years ago

11 Replies

Carers Week 2014 launched last week. Age UK wants to encourage as many people as possible to take part to help carers across the UK.

The week itself doesn’t take place until 9-15 June 2014, but the door is now open for those who want to sign up to get involved. Every year Carers Week is a...

The week itself doesn’t take place until 9-15 June 2014, but the door is now ope...

Suzym2u

Moderator•11 years ago

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University Hospitals of Bristol Tweeted this afternoon.

Who are the Youth Council? The UH Bristol Foundation Trust Youth Council are a fun, pro-active group aged between 11 and 21 years old. We are all...

Who are the Youth Council? The UH Bristol Foundation Trust Youth Council are...

Suzym2u

Moderator•11 years ago

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Oxfordshire Vasculitis Support Group Spring Seminar March 23rd 2014

There will be a presentation by Dr Anna Mistry: ‘The medications used to treat people with Vasculitis, their effects and side effects’. Professor Raashid...

There will be a presentation by Dr Anna Mistry: ‘The medications used to treat p...

Suzym2u

Moderator•11 years ago

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York, North & East Ridings Vasculitis Support Group 16th March 2014

The guest speak will be Dr Yusof who is an academic registrar working at Chapel Allerton Hospital in Leeds. He has an interest in Rituximab and B cell...

The guest speak will be Dr Yusof who is an academic registrar working at Chapel ...

Suzym2u

Moderator•11 years ago

2 Replies

Tweeted by Citizens Advice Bureau this morning. Fit for work? Your experiences of ESA.

Here at Citizens Advice we think that a system designed to determine if you can access support when you are unfortunate enough to get ill or injured needs to...

Here at Citizens Advice we think that a system designed to determine if you can ...

Suzym2u

Moderator•11 years ago

1 Reply

Does tapering off pred down from 7.5mg to 5mg cause tiredness and mood change? I have read all the side effects information but I would like

To know others experiences.

luggsey

•11 years ago

14 Replies

Japan team wins bronze medal in ski jumping

Takeuchi announced he is suffering from an intractable disease called Churg-Strauss Syndrome (EGPA), a type of Vasculitis, and once almost gave up on...

Takeuchi announced he is suffering from an intractable disease called Churg-Stra...

Suzym2u

Moderator•11 years ago

7 Replies

Just had to share these and say thank you to Abby and Clarry for raising an amazing £2850.30 for Vasculitis UK.

All the best for this coming year too :-) http://www.youtube.com/watch?v=Kl5ybwOVnXM&feature=youtu.be http://www.youtube.com/watch?v=7iWeTp2C7jw...

All the best for this coming year too :-) http://www.youtube.com/watch?v=Kl5ybw...

Suzym2u

Moderator•11 years ago

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Lincolnshire VSG lunch - Sunday March 2nd

Just a reminder to those wishing to join us for the VSG lunch - closing date for booking your lunch is 24th February! To book, please ring the Thorald Arms on...

Just a reminder to those wishing to join us for the VSG lunch - closing date for...

Ayla

Volunteer•11 years ago

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Vasculitis UK have just received an offer of starting/supporting a Vasculitis Support Group in the Portsmouth area.

If anyone is interested in joining/supporting this new Vasculitis group, please could you let us know as soon as possible, either here or by private message....

If anyone is interested in joining/supporting this new Vasculitis group, please ...

Suzym2u

Moderator•11 years ago

16 Replies

Arthritis?

Been getting a lot of pain in my left hip, really sharp pains that can stop you in your tracks and where paracetamol and ibuprofen no long do the trick. Saw a...

Been getting a lot of pain in my left hip, really sharp pains that can stop you ...

Wellsie

•11 years ago

11 Replies

can u take kefir a probotic drink

i have been getting some stomach upsets and wondered if i was able to take kefir as it engourages good flora in the intestines

i have been getting some stomach upsets and wondered if i was able to take kefir...

mumu

•11 years ago

8 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for February 2014

Anyone suffer facial pain?

Post from Sheffield University this morning on Twitter.

Benefits and Work February 26th Newsletter

New to Vasculitis, Advice on symptoms and diagnosis please ?

Can someone with Wegener's granulomatosis survive for 25 years without treatment ?

Has anyone remained in remission after initial Cyclophosphamine course, without going on a maintenance drug. Doc wants me to take AZA,.

CNS Vasculitis - Stopping medication

An article from the Metro today, concerning the actor from the film The Ghostbusters. Harold Ramis.

Hot Bath

New Colour Wristbands

Has awareness of Takayasu's by cardiologists improved. I first saw a cardiologist in 2001 but not diagnosed till 2011.

This latest poll is called " If you think you have suffered any significant permanent disability or damage due to a late diagnosis"

A chance to talk to Warrington CCG about NHS care in Warrington today at 2pm

Best holiday insurance ?

Do you live in or around Cardiff and would like to share your story about living with Vasculitis?

New Poll in the Vasculitis HealthUnlocked Community. Vasculitis UK needs your help!

Vaccinations and Vasculitis

Has anyone any suggestions on how to keep the weight off when on steroids

Carers Week 2014 launched last week. Age UK wants to encourage as many people as possible to take part to help carers across the UK.

University Hospitals of Bristol Tweeted this afternoon.

Oxfordshire Vasculitis Support Group Spring Seminar March 23rd 2014

York, North & East Ridings Vasculitis Support Group 16th March 2014

Tweeted by Citizens Advice Bureau this morning. Fit for work? Your experiences of ESA.

Does tapering off pred down from 7.5mg to 5mg cause tiredness and mood change? I have read all the side effects information but I would like

Japan team wins bronze medal in ski jumping

Just had to share these and say thank you to Abby and Clarry for raising an amazing £2850.30 for Vasculitis UK.

Lincolnshire VSG lunch - Sunday March 2nd

Vasculitis UK have just received an offer of starting/supporting a Vasculitis Support Group in the Portsmouth area.

Arthritis?

can u take kefir a probotic drink

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