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Experiences with
Urticarial vasculitis
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I have
urticarial
vasculitis
, I have had it for 20years without any real problems,I am taking anti histamines, however since october last year i have had 8 very bad flares and am having a flare now, i am seeing a Rhuematologist who has done all the relevant test, and has prescibed Prednisalone 30mg but
I have
urticarial
vasculitis
, I have had it for 20years without any real problems,I am taking anti histamines, however since october last year i have had 8 very bad flares and am having a flare now, i am seeing a Rhuematologist who has done all the relevant test, and has prescibed Prednisalone 30mg but
jackrussell
in
Vasculitis UK
12 years ago
An update on where and what Vasculitis UK are about at the moment...
Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working with the National Institute for Health and Clinical Excellence on the assessing of new treatment. VUK are represented on the British Society of
Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working with the National Institute for Health and Clinical Excellence on the assessing of new treatment. VUK are represented on the British Society of
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Can anyone explain how I have neutrophilia while on Prenisolone? Does it mean my dose is too low?
My neurologist has suggested that I have low grade cerebral vasculitis. The symptoms, (mainly MS type + migraines) build up over time and usually respond to a short course of Prenisolone. This time however the steroids have not really worked. Admittedly, the three things that make it worse have all come
My neurologist has suggested that I have low grade cerebral vasculitis. The symptoms, (mainly MS type + migraines) build up over time and usually respond to a short course of Prenisolone. This time however the steroids have not really worked. Admittedly, the three things that make it worse have all come
Melon
in
Vasculitis UK
12 years ago
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Volunteers Wanted!!
Volunteers wanted to take part in a study into "Fatigue in patients with ANCA Associated Vasculitis" ...Dr Andrew McClean is still looking for healthy volunteers between the ages of 50/60/70. But he is also looking for couples of a similar age (any age) where one of the partners has vasculitis and the
Volunteers wanted to take part in a study into "Fatigue in patients with ANCA Associated Vasculitis" ...Dr Andrew McClean is still looking for healthy volunteers between the ages of 50/60/70. But he is also looking for couples of a similar age (any age) where one of the partners has vasculitis and the
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
What do blood tests reveal?
Hi My name is Sue and l am from Australia. I tested positive for p-ANCA but negative for MPO,PR3 and C-ANCA? Also my ACE levels were elevated. Thinking it could be sarcoidosis or vasculitis. But with vas, would l be right in saying that there would be other blood indicators, as apposed to just P-ANCA
Hi My name is Sue and l am from Australia. I tested positive for p-ANCA but negative for MPO,PR3 and C-ANCA? Also my ACE levels were elevated. Thinking it could be sarcoidosis or vasculitis. But with vas, would l be right in saying that there would be other blood indicators, as apposed to just P-ANCA
Shezian
in
Vasculitis UK
12 years ago
Full body c.t scan for vasculitis!
Can anyone tell me if a full body c.t scan can pick up scarring on vessels etc? And also how a body. c.t scan may be able to tell if my daughter has vasculitis,she has severe sle,but her renal and neurologist feel she may have multi system vasculitis,she had swelling on the brain and spinal cord which
Can anyone tell me if a full body c.t scan can pick up scarring on vessels etc? And also how a body. c.t scan may be able to tell if my daughter has vasculitis,she has severe sle,but her renal and neurologist feel she may have multi system vasculitis,she had swelling on the brain and spinal cord which
nanny4
in
Vasculitis UK
12 years ago
Adoption approval for vasculitis sufferers?
Has anyone out there suffering from vasculitis had experience of trying to adopt children. We are in scotland and my husband has cutaneous vasculitis- (we believe he has Cutaneous polyarteritis nodosa (PAN) although we have not been told which form of cutaneous vasculitis he has).His kidneys function
Has anyone out there suffering from vasculitis had experience of trying to adopt children. We are in scotland and my husband has cutaneous vasculitis- (we believe he has Cutaneous polyarteritis nodosa (PAN) although we have not been told which form of cutaneous vasculitis he has).His kidneys function
Debmac
in
Vasculitis UK
12 years ago
A new members question,on Urticarial Vasculitis.
I have had
Urticarial
Vasculitis
for around 20 years. ( nothing really serious) but recently i have had really bad flare ups ( 8 attacks in the last 7 months ) I would like to ask , has anyone else also got any other conditions ie: an Under Active Thyroid,Arthritis, ( i have had 1 total hip replacement
I have had
Urticarial
Vasculitis
for around 20 years. ( nothing really serious) but recently i have had really bad flare ups ( 8 attacks in the last 7 months ) I would like to ask , has anyone else also got any other conditions ie: an Under Active Thyroid,Arthritis, ( i have had 1 total hip replacement
jackrussell
in
Vasculitis UK
12 years ago
Meeting in London today Best Outcomes for People with Autoimmune Diseases
John is at a rare disease seminar in London , speaking along side David Jayne, at this very moment ..."best outcomes for people with autoimmune diseases" John will be talking about Vasculitis from a patient's prespective and David Jayne will be talking about Vasculitis and Lupus from a Consultants prespective
John is at a rare disease seminar in London , speaking along side David Jayne, at this very moment ..."best outcomes for people with autoimmune diseases" John will be talking about Vasculitis from a patient's prespective and David Jayne will be talking about Vasculitis and Lupus from a Consultants prespective
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
FATIGUE and ANCA Associated Vasculitis
Next year Dr Andrew McClean will hopefully be talking about his 2 year research project Fatigue with ANCA associated Vasculitis.. Andrew is still wanting volunteers both Healthy and with Vasculitis. But more healthy volunteers (family member, friend, work colleague) as he has to match like with like.
Next year Dr Andrew McClean will hopefully be talking about his 2 year research project Fatigue with ANCA associated Vasculitis.. Andrew is still wanting volunteers both Healthy and with Vasculitis. But more healthy volunteers (family member, friend, work colleague) as he has to match like with like.
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Marathon blog Number 8
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 Ultra-Marathon and other half marathons), raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising
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 Ultra-Marathon and other half marathons), raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising
jimdrum
in
Vasculitis UK
12 years ago
rituximab and vasculitis.
this next week will be my first dose of rituximab for Anca + vasculitis. several dr's keep mentioning wegeners but still not one will confirm it. I've been diagnosed since july 2010 with Anca + vascultis after 10 months of being told i had arthritis by local Gp, new it wasn't and people say life begins
this next week will be my first dose of rituximab for Anca + vasculitis. several dr's keep mentioning wegeners but still not one will confirm it. I've been diagnosed since july 2010 with Anca + vascultis after 10 months of being told i had arthritis by local Gp, new it wasn't and people say life begins
alan-lee
in
Vasculitis UK
12 years ago
Hypersensitivity/urticarial vasculitis - scalp lumps
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 migraine). I've increased my dosage back up and the rheumatologists have said it may take up to 6 weeks to take effect, and until then I need
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 migraine). I've increased my dosage back up and the rheumatologists have said it may take up to 6 weeks to take effect, and until then I need
Lupylass
in
Vasculitis UK
12 years ago
Early days - my story so far
My first ever blog! I was diagnosed with micro polyangiitis vasculitis in early April at the age of 56. Having now joined the support group it has made me appreciate how fortunate I am. The diagnosis was quick enough to ensure my kidneys did not take a serious bashing and they seem to be making some
My first ever blog! I was diagnosed with micro polyangiitis vasculitis in early April at the age of 56. Having now joined the support group it has made me appreciate how fortunate I am. The diagnosis was quick enough to ensure my kidneys did not take a serious bashing and they seem to be making some
Chris-Bromsgrove
in
Vasculitis UK
12 years ago
This is Jimmy's Just Giving Page Jimmy has WG and is walking 79 miles for Vasculitis UK in the Scottish Highlands
Here is My 76mile -Sutherland trail - Charity Walk page - I hope those who can afford it will be willing to spare a few pounds for a Charity that has a Big effect on my life - As most who know me understand, I was diagnosed in 2007 with Wegeners Granulomatosis, a form of Vasculitis-This Auto-Immune disorder
Here is My 76mile -Sutherland trail - Charity Walk page - I hope those who can afford it will be willing to spare a few pounds for a Charity that has a Big effect on my life - As most who know me understand, I was diagnosed in 2007 with Wegeners Granulomatosis, a form of Vasculitis-This Auto-Immune disorder
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Hair removal and HSP vasculitis?
I have HSP vasculitis and I find it really hard not to get my rash back whenever I do anything hair removing e.g. shaving, waxing etc.. Does anyone have any tips with this?
I have HSP vasculitis and I find it really hard not to get my rash back whenever I do anything hair removing e.g. shaving, waxing etc.. Does anyone have any tips with this?
krasavica
in
Vasculitis UK
12 years ago
Charlotte is half way to her target!! Charlotte has Wegeners Granulomatosis and is doing a bungee jump for Vasculitis Uk
http://www.justgiving.com/Charlotte-WilliamsVasUK I'm Charlie and I'm doing a bungee jump to raise money for Vasculitis UK, I want to raise awareness of Vasculitis and conditions like Wegener's Granulomatosis. I've had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17.
http://www.justgiving.com/Charlotte-WilliamsVasUK I'm Charlie and I'm doing a bungee jump to raise money for Vasculitis UK, I want to raise awareness of Vasculitis and conditions like Wegener's Granulomatosis. I've had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17.
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Nerve Damage and Peripheral Neuropathy
I was diagnosed with Vasculitis 18 months ago(Microscopic polyangitis).I had treatment with the usual steroids and cyclophosphamide.It was all going pretty well and my blood numbers were heading in the right direction.About 4 weeks after stopping cyclophos i had a relapse.My consultant assumed I had
I was diagnosed with Vasculitis 18 months ago(Microscopic polyangitis).I had treatment with the usual steroids and cyclophosphamide.It was all going pretty well and my blood numbers were heading in the right direction.About 4 weeks after stopping cyclophos i had a relapse.My consultant assumed I had
gibson100
in
Vasculitis UK
12 years ago
Has anybody had a EMG investigation of the muscel and nerves as part of a diagnoses of lupus?if so was there anything conclusive .
.
.
Poppygayle
in
LUPUS UK
12 years ago
Vasculitis UK needs your help please
FOR A CHANGE THE TRUST NEEDS YOUR HELP FOR THE LAUNCH OF THE ROUTE MAP AND FOR VASCULITIS AWARENESS MONTH. Do you have a story to tell about your vasculitis? Maybe you have achieved something good, like running a marathon, climbing a mountain, or overcoming some adversity. For the media launch
FOR A CHANGE THE TRUST NEEDS YOUR HELP FOR THE LAUNCH OF THE ROUTE MAP AND FOR VASCULITIS AWARENESS MONTH. Do you have a story to tell about your vasculitis? Maybe you have achieved something good, like running a marathon, climbing a mountain, or overcoming some adversity. For the media launch
PatriciaAnn
in
Vasculitis UK
12 years ago
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