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Urticarial vasculitis
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Vasculitis UK are now contributing to the funding for two new research projects.
A student elective bursary for a research study for Takayasu Arteritis and a drug trial for Polyarteritis Nodosa in Children. There is more detail about these two new projects on the Vasculitis UK website if you follow the link below :-) http://www.vasculitis.org.uk/research/funded-research
A student elective bursary for a research study for Takayasu Arteritis and a drug trial for Polyarteritis Nodosa in Children. There is more detail about these two new projects on the Vasculitis UK website if you follow the link below :-) http://www.vasculitis.org.uk/research/funded-research
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Innov8 Conferences are supporting Vasculitis UK for Vasculitis Awareness Month May 2013.
In 2007, Kira the Daughter of innov8's owners – Emma and James Caldwell was diagnosed with Henoch–Schönlein Purpura, a very rare form of Vasculitis. In the resulting 6 Years Kira has had 12 relapses of the condition, which have each needed long stays in Hospital to help battle the condition. In
In 2007, Kira the Daughter of innov8's owners – Emma and James Caldwell was diagnosed with Henoch–Schönlein Purpura, a very rare form of Vasculitis. In the resulting 6 Years Kira has had 12 relapses of the condition, which have each needed long stays in Hospital to help battle the condition. In
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
vascular consultants
I have a question,Purely out of interest, If Vasculitis is inflamation of the blood vessels why are Vascular Consulants not involved.I had surgery on my feet ( on 2 seperate occasions ) a few years ago, and was told no pulse could be found in my feet, 1 operation went ahead, the 2nd one 4 years later
I have a question,Purely out of interest, If Vasculitis is inflamation of the blood vessels why are Vascular Consulants not involved.I had surgery on my feet ( on 2 seperate occasions ) a few years ago, and was told no pulse could be found in my feet, 1 operation went ahead, the 2nd one 4 years later
jackrussell
in
Vasculitis UK
11 years ago
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VASCULITIS AGM 2013 TODAY AT LONG EATON
Just wanted to say thank you to everyone who came to the AGM today. Special thanks to Dr Andrew McClean for his brilliant presentation "Why are people with ANCA Vasculitis fatigued?" Also thanks to Prof Lorraine Harper who spoke briefly about how Vasculitis research in the UK is leading the world. Also
Just wanted to say thank you to everyone who came to the AGM today. Special thanks to Dr Andrew McClean for his brilliant presentation "Why are people with ANCA Vasculitis fatigued?" Also thanks to Prof Lorraine Harper who spoke briefly about how Vasculitis research in the UK is leading the world. Also
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Agenda - Vasculitis UK Annual General Meeting - Sunday 12th May
Vascuitis UK - AGM - Sunday 12th May 2013 - Long Eaton Novotel NG10 4EP 12.15 - Meet & Mingle (Buffet lunch) 1.00 - Annual General meeting AGENDA 1. Welcome and apologies 2. Minutes of Previous meeting 3. Matters arising 4. Chairman's report and Treasurer's report 5. Election of Trustees
Vascuitis UK - AGM - Sunday 12th May 2013 - Long Eaton Novotel NG10 4EP 12.15 - Meet & Mingle (Buffet lunch) 1.00 - Annual General meeting AGENDA 1. Welcome and apologies 2. Minutes of Previous meeting 3. Matters arising 4. Chairman's report and Treasurer's report 5. Election of Trustees
PatriciaAnn
in
Vasculitis UK
11 years ago
Enfield family spreads word about son's rare condition 'They were preparing us for the worst'
A trainee doctor spotted a rash beginning to develop and realised the 19-year-old Capel Manor College student was suffering from chronic vasculitis – in which blood vessels become inflamed and the immune system starts to attack itself. http://www.thisislocallondon.co.uk/news/10398829._They_were_preparing_us_for_the_worst
A trainee doctor spotted a rash beginning to develop and realised the 19-year-old Capel Manor College student was suffering from chronic vasculitis – in which blood vessels become inflamed and the immune system starts to attack itself. http://www.thisislocallondon.co.uk/news/10398829._They_were_preparing_us_for_the_worst
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Walk the Worcestershire Way: Walkers Update and Event Detail
Dear Walkers WALK THE WORCESTERSHIRE WAY UPDATE Let me start by thanking you for signing up to Walk the Worcestershire Way for Vasculitis UK. The money we will raise together will make a huge difference to the lives of patients and their families affected by Vasculitis. I thought I would provide
Dear Walkers WALK THE WORCESTERSHIRE WAY UPDATE Let me start by thanking you for signing up to Walk the Worcestershire Way for Vasculitis UK. The money we will raise together will make a huge difference to the lives of patients and their families affected by Vasculitis. I thought I would provide
Wellsie
in
Vasculitis UK
11 years ago
A flare or just 'symptoms'?
At the beginning of April I swallowed my last 1mg of pred, having started on 30mg for a flare of CSS that began February 2012. Within a week I was experiencing breathing problems and my peak flow was dropping. This week I have been having lots of joint pain which is something I haven't had for years.
At the beginning of April I swallowed my last 1mg of pred, having started on 30mg for a flare of CSS that began February 2012. Within a week I was experiencing breathing problems and my peak flow was dropping. This week I have been having lots of joint pain which is something I haven't had for years.
laidbackreader
in
Vasculitis UK
11 years ago
Jessner's Lymphocytic Infiltration
After 15 years of having my rash peered at by various Dermatologists and having it pronounced as 'atypical of Lupus', I've finally been told, after two biopsies that it's JLI. I've still got sub-acute-cutaneous Lupus (based on auto-antibody titres). Has anyone else been diagnosed with JLI on this
After 15 years of having my rash peered at by various Dermatologists and having it pronounced as 'atypical of Lupus', I've finally been told, after two biopsies that it's JLI. I've still got sub-acute-cutaneous Lupus (based on auto-antibody titres). Has anyone else been diagnosed with JLI on this
FunkyMumma
in
LUPUS UK
11 years ago
First (paediatric) consultation what to expect?
Hi, my little boy has been referred to the periodic fever clinic in Bristol to see a specialist about the possibility of a rare form of Vasculitis. We have had many consultations before but not this. What can we expect? I'm worried they will fob us off if he is having a 'good' few days, no rash
Hi, my little boy has been referred to the periodic fever clinic in Bristol to see a specialist about the possibility of a rare form of Vasculitis. We have had many consultations before but not this. What can we expect? I'm worried they will fob us off if he is having a 'good' few days, no rash
Lau85
in
Vasculitis UK
11 years ago
I have 3 different diagnoses: Sweet's Syndrome (rare urticarial variant), Urticarial Vasculitis, and Chronic Urticaria
Does anyone else have urticaria so bad they cannot get it under control without steroids? CellCept isn't working. I think Anakinra injections helped, but I had such bad injection site reactions. Does anyone identify with my story here on my blog? http://notsosweets.blogspot.com/2013/01/reliving-nightmare.html
Does anyone else have urticaria so bad they cannot get it under control without steroids? CellCept isn't working. I think Anakinra injections helped, but I had such bad injection site reactions. Does anyone identify with my story here on my blog? http://notsosweets.blogspot.com/2013/01/reliving-nightmare.html
notsossweets
in
MY SKIN
11 years ago
Advice on four year old boy please?!
The Dr didn't mention a specific name but I am assuming its more likely to be
Urticarial
Vasculitis
. Do the other types cause urticaria? He is a very rashy boy in general. Goes white porcelain to very rashy face etc. Sorry for dragging on! Laura.
The Dr didn't mention a specific name but I am assuming its more likely to be
Urticarial
Vasculitis
. Do the other types cause urticaria? He is a very rashy boy in general. Goes white porcelain to very rashy face etc. Sorry for dragging on! Laura.
Lau85
in
Vasculitis UK
11 years ago
New Inspirational Story on the Vasculitis UK website
Andrew Irving was diagnosed with Wegeners Granulomatosis in 2010. Andrew is a keen supporter of Vasculitis UK and is also a keen rally driver... ... :-) http://www.vasculitis.org.uk/about/andrews-story
Andrew Irving was diagnosed with Wegeners Granulomatosis in 2010. Andrew is a keen supporter of Vasculitis UK and is also a keen rally driver... ... :-) http://www.vasculitis.org.uk/about/andrews-story
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
First Cyclosphosphamide Infusion
I had my first cyclophosphamide infusion today... took about 7 hours in the day ward... It will go on on a four-week basis for up to 6 months... My Rhuemy told me is the best solution I should take as I have RENAL and CEREBRAL lupus which is vastly affecting brain... Azathioprine was finally
I had my first cyclophosphamide infusion today... took about 7 hours in the day ward... It will go on on a four-week basis for up to 6 months... My Rhuemy told me is the best solution I should take as I have RENAL and CEREBRAL lupus which is vastly affecting brain... Azathioprine was finally
nass361
in
LUPUS UK
11 years ago
Wilkinson staff raise thousands in aid of Weight Loss Challenger David Tyzack... David 21, has Wegener's Granulomatosis (GPA)
WILKINSON staff have raised more than £2,000, fundraising for Vasculitis UK, in aid of one of this year's weight loss challengers who suffers from a rare disease. http://www.thisisdevon.co.uk/Wilkinson-staff-raise-thousands-aid-Weight-Loss/story-18479912-detail/story.html#axzz2OULLYmQ1
WILKINSON staff have raised more than £2,000, fundraising for Vasculitis UK, in aid of one of this year's weight loss challengers who suffers from a rare disease. http://www.thisisdevon.co.uk/Wilkinson-staff-raise-thousands-aid-Weight-Loss/story-18479912-detail/story.html#axzz2OULLYmQ1
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
If anyone has NONE ANCA Vasculitis and has been given RITUXIMAB, can you please contact me as soon as possible please.
As I would like to know of your personal experience of Rituximab for the NICE Submission. john.mills@vasculitis.co.uk or private message me. thank you John
As I would like to know of your personal experience of Rituximab for the NICE Submission. john.mills@vasculitis.co.uk or private message me. thank you John
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
I feel very alone & struggling with my lupus daily
I have made a few mistakes the last few months, choosing love or friends and lost both! But like most of us here I've paid triple cos my lupus is in overdrive!! I have really bad bladder problems, I had a hip replacement in 09 and either that's going wrong or all my muscles and ligaments need put back
I have made a few mistakes the last few months, choosing love or friends and lost both! But like most of us here I've paid triple cos my lupus is in overdrive!! I have really bad bladder problems, I had a hip replacement in 09 and either that's going wrong or all my muscles and ligaments need put back
Emmalouise_0209_82
in
LUPUS UK
11 years ago
Blood pressure and vasculitis
I know that the disease can cause high blood pressure but can this also be the case when the disease is in drug induced remission? My consultant tells me it is now “raised” (typically 129/87). Before becoming ill I wasn’t aware I had raised blood pressure, although it’s not something you tend to be aware
I know that the disease can cause high blood pressure but can this also be the case when the disease is in drug induced remission? My consultant tells me it is now “raised” (typically 129/87). Before becoming ill I wasn’t aware I had raised blood pressure, although it’s not something you tend to be aware
Chris-Bromsgrove
in
Vasculitis UK
11 years ago
Vasculitis
Of course someone will have this but just wondered what symptoms it gives. I have a tingling/pins and needles in my feet but not as sharp a pain as the usual pins and needles. Dunno if it is the Lupus but most things seem to be....
Of course someone will have this but just wondered what symptoms it gives. I have a tingling/pins and needles in my feet but not as sharp a pain as the usual pins and needles. Dunno if it is the Lupus but most things seem to be....
DaleDiva
in
LUPUS UK
11 years ago
My Wegener's latest
Had my 7th Cyclophosphamide infusion yesterday. Saw Dr Jayne. He's reviewing my situation and probably switching me on to Retuximab. Also saw Dr Johnny, and he's recommending a new nasal biopsy.Still have 3 more cyclos booked,which may not now take place, and possible clinic date for 6 weeks time. Also
Had my 7th Cyclophosphamide infusion yesterday. Saw Dr Jayne. He's reviewing my situation and probably switching me on to Retuximab. Also saw Dr Johnny, and he's recommending a new nasal biopsy.Still have 3 more cyclos booked,which may not now take place, and possible clinic date for 6 weeks time. Also
suffolkgirl
in
Vasculitis UK
11 years ago
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