Posts - Vasculitis UK | HealthUnlocked

Volunteer•12 years ago

Although my vasculitis was not diagnosed as cerebral, from comparison with other people on this site it appears to be. It's onset was sudden with violent...

How do you know when to increase or decrease your steroids?

Although my vasculitis was not diagnosed as cerebral, from comparison with other...

Bobs

•12 years ago

19 Replies

Can you predict when you will experience flares?

It may seem a silly question but I am interested to know if anyone is like me, in that they have some months in the year when flares always occur. For me, it...

It may seem a silly question but I am interested to know if anyone is like me, i...

Ayla

Volunteer•12 years ago

6 Replies

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Look out for the hard copy of the Vasculitis UK Spring Newsletter 2012 dropping on your door mat. They were all posted this morning!!

There are some extra inserts which we hope you will take advantage of as well as full details of the AGM in May. Due to the growth in membership and an...

There are some extra inserts which we hope you will take advantage of as well as...

Volunteer•12 years ago

if you are going on holiday make sure you take enough medication to cover your holiday plus some extra. If we go abroad we always divide and pack John's...

Managing and coping with your Vasculitis and Medication while you are on holiday.

if you are going on holiday make sure you take enough medication to cover your h...

Volunteer•12 years ago

In May 2011 I had a terrible rash on both arms which was very itchy, red and spotty which when scratched joined together. Several visits to my GP surgery...

Is it Vasculitis?

In May 2011 I had a terrible rash on both arms which was very itchy, red and spo...

Dawnanna

•12 years ago

13 Replies

This is post from the Vasculitis Uk face book group from a young lady called Charley, it sends such a positive message.

Charley has Wegeners Granulomatosis. She had a rare severe reaction to Rituximab. Charley is now taking methotrexate as a maintenance medication....

Charley has Wegeners Granulomatosis. She had a rare severe reaction to Rituximab...

Volunteer•12 years ago

I have only recently been diagnosed with hypocomplement urticarial Vasculitis been on 20mg prednisone for 2 weeks just reduced to 15. I am about 5 weeks and...

Help now pregnant!

I have only recently been diagnosed with hypocomplement urticarial Vasculitis be...

Fresita

•12 years ago

5 Replies

How holding a fundraising event for Vasculitis UK with a few friends from our own home helped raise awareness locally.

Just something I wanted to share. John and I decided to have a fund raising lunch at the end of February for Rare Disease Awareness Day. We had never done...

Just something I wanted to share. John and I decided to have a fund raising lunc...

Volunteer•12 years ago

My form of cerebral vasculitis is very similar to multiple sclerosis in day to day symptoms. And along with that I have a very similar pattern to MS people in...

Do other people (especially cerebral/CNS people) worsen in the heat?

My form of cerebral vasculitis is very similar to multiple sclerosis in day to d...

vivdunstan

Volunteer•12 years ago

11 Replies

Is it possible to recover from vasculitis or is it a life sentence?

I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe...

I am new to this disease so any advise would be helpful. Only 6 months ago after...

Bobs

•12 years ago

30 Replies

Has anyone managed to get over tonsillitis or a chest infection ok but is left with a niggling cough for weeks after, that will not go away?

This cough affects John especially in the evening and in the night and he is struggling to shake it off. Has anyone else experienced this?

This cough affects John especially in the evening and in the night and he is str...

If you take Co-codamol please check out the following article. Seems the wrong dose has been inserted into some packs....

Volunteer•12 years ago

7 Replies

WRONG DOSE CO-CODAMOL

If you take Co-codamol please check out the following article. Seems the wrong d...

PatriciaAnn

•12 years ago

The next informal meeting (with coffee and cake) will be held on Sunday 15th April in Digby. All welcome. For further details: ayla.todd@gmail.com

Lincolnshire Vasculitis Support Group Sunday 15th April

The next informal meeting (with coffee and cake) will be held on Sunday 15th Apr...

Volunteer•12 years ago

“Talking about Vasculitis”: speaker – Dr. Rachel Jones from Addenbrooke's Hospital Cambridge (2.30pm). Everyone with any form of vasculitis (and carers), is...

Cambridge Vasculitis Support Group are meeting on Saturday 14 April 1.00pm – 4.00pm at Holiday Inn, Impington, Cambridge (off A14)

“Talking about Vasculitis”: speaker – Dr. Rachel Jones from Addenbrooke's Hospit...

Volunteer•12 years ago

Venue - Mencap HQ, Thorne Road, (near the DRI) Doncaster DN1 2JT. Short taxi ride from the main line station and bus station. There will be lots of time to...

YORKSHIRE VASCULITIS SUPPORT GROUP MEETING. The next meeting will be held in Doncaster on Sunday 22nd April. 12.30pm.

Venue - Mencap HQ, Thorne Road, (near the DRI) Doncaster DN1 2JT. Short taxi rid...

Volunteer•12 years ago

Last time I saw my consultant I was told of the vasculitis classifications, the description went like this: "If group of rheumatologists are put into a room...

Does anyone have unclassified Vasculitis?

Last time I saw my consultant I was told of the vasculitis classifications, the ...

tracynoe

•12 years ago

6 Replies

This question is on behalf of someone else :- I have a rather strange question, so apologies, but here goes

Has anyone had strange side effects after Rutiximab??? Since having my 2nd infusion 10 days ago all I can smell are daisies.., I know it's strange, but it's...

Has anyone had strange side effects after Rutiximab??? Since having my 2nd inf...

The next meeting will be held in Doncaster on Sunday 22nd April. 12.30pm. Venue - Mencap HQ, Thorne Road (near the hospital) Doncaster DN1 2JT. A short taxi...

Volunteer•12 years ago

9 Replies

Yorkshire Vasculitis Support Group Meeting

The next meeting will be held in Doncaster on Sunday 22nd April. 12.30pm. Venue ...

PatriciaAnn

•12 years ago

2 Replies

Peninusula Health Technology Commisioning Group Commissioning Decision:- Rituximab for Severe ANCA Associated Vasculitis

The Penisula Health Technology Commissioning Group (PHTCG) has come to a decision on the use of Rituximab for severe ANCA Associated Vasculitis. Rituximab may...

The Penisula Health Technology Commissioning Group (PHTCG) has come to a decisio...

Volunteer•12 years ago

The next meeting will be held on Saturday 19th May 2012 at 1.00 pm at The Meeting Hall 171 Dartford Road Dartford Kent DA1 3EW Tea & biscuits and...

S.E.London/N.W.Kent Support Group

The next meeting will be held on Saturday 19th May 2012 at 1.00 pm at The ...

JacquiM

Volunteer•12 years ago

http://www.thetelegram.com/News/Local/2012-03-17/article-2930639/My-body-is-a-circuit-board/1

Karen Halleran - read Karen's story. She is from Newfoundland Canada. This is an article about her fight with WG in todays local paper.

http://www.thetelegram.com/News/Local/2012-03-17/article-2930639/My-body-is-a-ci...

Volunteer•12 years ago

Hi, I have just had my meds changed from Mycophenolate (been on for the last 3 years from my Neurologist) to Methotrexate (put on by my Rheumatologist) and my...

Is anyone on Methotrexate?

Hi, I have just had my meds changed from Mycophenolate (been on for the last 3 y...

milliewin

•12 years ago

8 Replies

DATE FOR YOUR DIARY!! VASCULITIS SUPPORT GROUP WEST MIDLANDS (V.S.G.W.M.)MEETINGSUNDAY 14th. October 2012HILTON BIRMINGHAM BROMSGROVE HOTEL

( www.hilton.co.uk/birminghambromsgrove ) The Hilton Hotel is easy to find, M5 at Junction 4 take the A38 towards Bromsgrove for about a mile, Informal...

( www.hilton.co.uk/birminghambromsgrove ) The Hilton Hotel is easy to find, M...

Volunteer•12 years ago

I have had a series of quite severe painful areas of my body in the last few years and am beginning to connect them with my vasculitis. I started with...

Does anyone get bursitis, plantar fasciitis, etc. that last for weeks, often months?

I have had a series of quite severe painful areas of my body in the last few yea...

Ayla

Volunteer•12 years ago

7 Replies

Jamie is running in Rome this weekend for Vasculitis-uk, we wish him all the best and good luck!! Jamie has Wegeners Granulomatosis.

http://www.justgiving.com/jamie-flanagan/eurl.axd/cbb11e52efd5f342b5d095600feaea54

http://www.justgiving.com/jamie-flanagan/eurl.axd/cbb11e52efd5f342b5d095600feaea...

I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with...

Volunteer•12 years ago

4 Replies

Does anyone know where I can go in the U.S.? For Urticarial vasculitis?

I have been sick for a long time. Was told I had UV just this past June. Before ...

geoscott0292

•12 years ago

11 Replies

Saddle Nose.....

Hi I was diagnosed with WG in July 2011. It is limited to my nose and sinus and I was on 40g pred and slowly reducing now down to 7.5g. I was suffering with...

Hi I was diagnosed with WG in July 2011. It is limited to my nose and sinus and ...

bradders66

•12 years ago

7 Replies

Charity Golf Day at Benton Hall in aid of incurable autoimmune diseases at Addenbrookes Hospital Friday 18th May

Charity Golf Day at Benton Hall In aid of incurable autoimmune diseases at Addenbrookes Hospital Friday 18th May 2012 £55 p/p (Teams of 4 or...

Charity Golf Day at Benton Hall In aid of incurable autoimmune diseases at Adden...

Volunteer•12 years ago

Does anyone with any type of Vasculitis suffer from a relapse, flare or ill health due to stress or upset in their life?