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Urticarial vasculitis
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Living Well with Vasculitis - Portsmouth Hospital. The first Portsmouth Vasculitis Support Group meeting. July 19th 2014
The Department of Rheumatology would like to invite you to ‘Living Well with Vasculitis’ In connection with Vasculitis UK the Portsmouth Rheumatology team would like to announce a meeting to discuss the introduction of a support group for patients with Vasculitis, (including GCA/Temporal Arteritis,
The Department of Rheumatology would like to invite you to ‘Living Well with Vasculitis’ In connection with Vasculitis UK the Portsmouth Rheumatology team would like to announce a meeting to discuss the introduction of a support group for patients with Vasculitis, (including GCA/Temporal Arteritis,
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Congratulations to Joe. Joe was diagnosed with Wegener's Granulomatosis (GPA) 4 years ago at the age of 11.
Just wanted to say congratulations to Joe for not only completing 55 miles on his cycle in the EroicaBritannia in the Peak District last weekend for Vasculitis UK but also completing the event up there with the leaders. Joe was diagnosed with Wegeners Granulomatosis (GPA) 4 years ago at the age of 11
Just wanted to say congratulations to Joe for not only completing 55 miles on his cycle in the EroicaBritannia in the Peak District last weekend for Vasculitis UK but also completing the event up there with the leaders. Joe was diagnosed with Wegeners Granulomatosis (GPA) 4 years ago at the age of 11
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Study into the genetics of ANCA Associated Vasculitis
Interesting article about Arthritis Research funding a study into the genetics of ANCA Associated Vasculitis. http://www.businessweekly.co.uk/academia-a-research/17116-cambridge-wins-p224k-to-probe-rare-autoimmune-disease
Interesting article about Arthritis Research funding a study into the genetics of ANCA Associated Vasculitis. http://www.businessweekly.co.uk/academia-a-research/17116-cambridge-wins-p224k-to-probe-rare-autoimmune-disease
RichardE
Volunteer
in
Vasculitis UK
10 years ago
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Cerebral Vasculitis , major stoke 39yrs
My daughter aged 39 had 2 mini stokes a mth before she had a major stoke. She went straight to the doctor who did a CT scan with no evidence of stroke, she had serve headaches after the second one he diagnosed her as a rare form of Migraine 2 weeks later I nearly lost her. The Hospital did CT scan and
My daughter aged 39 had 2 mini stokes a mth before she had a major stoke. She went straight to the doctor who did a CT scan with no evidence of stroke, she had serve headaches after the second one he diagnosed her as a rare form of Migraine 2 weeks later I nearly lost her. The Hospital did CT scan and
sirc39
in
Vasculitis UK
10 years ago
Any tips for making the rash fade more quickly?
I have either HSP or leucocytoclastic vasculitis (my skin biopsy was inconclusive). All else is fine with medication, and while the rash is much reduced (basically strangers have stopped looking at me funny, which is a relief), I do still get a pin prick rash especially on my legs, and similar marks
I have either HSP or leucocytoclastic vasculitis (my skin biopsy was inconclusive). All else is fine with medication, and while the rash is much reduced (basically strangers have stopped looking at me funny, which is a relief), I do still get a pin prick rash especially on my legs, and similar marks
SuperMaria
in
Vasculitis UK
10 years ago
Can leukocytoclastic vasculitis be diagnosed without biopsy?
After weeks of having this non-itchy, non-burning, awfully ugly rash, I finally saw a dermatologist. He said it was leukocytoclastic vasculitis. Is it that easy to diagnose without biopsy? All blood work came back normal (CBC, B12, Folate, TSH). Should I get additional blood work done and/or insist
After weeks of having this non-itchy, non-burning, awfully ugly rash, I finally saw a dermatologist. He said it was leukocytoclastic vasculitis. Is it that easy to diagnose without biopsy? All blood work came back normal (CBC, B12, Folate, TSH). Should I get additional blood work done and/or insist
annc999
in
Vasculitis UK
10 years ago
I have cerebral vasculitis and also pmr, I finished a second course of cyclophosphamide Mid march, I was ok until about three weeks ago when
I had a chest infection, since both vasculitis and pmr have flared, any idea,s if this could be due to chest infection have had a course on antibiotics.?
I had a chest infection, since both vasculitis and pmr have flared, any idea,s if this could be due to chest infection have had a course on antibiotics.?
Louzoejf29
in
Vasculitis UK
10 years ago
Going into hospital for surgery consultant said he would keep it as short as possible but still worried with Vasculitis and GCA
Plus auto immune doubt Whether surgeon is used to operating with these conditions.... anyone been through this and come out other end in one piece? Any advice gratefully received ....
Plus auto immune doubt Whether surgeon is used to operating with these conditions.... anyone been through this and come out other end in one piece? Any advice gratefully received ....
shella
in
Vasculitis UK
10 years ago
Rituximab
Got to have 2 infusions of ritux 2 weeks apart ,ive had 6 inf of cyclophosphamide ,had flere with eyesight.On 30mg pred daily and 25mg injection of methotrexate weekly.Ive gca wondrering if any have had same.
Got to have 2 infusions of ritux 2 weeks apart ,ive had 6 inf of cyclophosphamide ,had flere with eyesight.On 30mg pred daily and 25mg injection of methotrexate weekly.Ive gca wondrering if any have had same.
mickt
in
Vasculitis UK
10 years ago
just a quick update
im 18 years old .have sufferd with mouth /genital ulcers for some years now ...im under the birmingham behcets clinic at city hospital ..the other wk i posted i had my worse ever out break ..so i had 2 infusion of methylpredisolone......then 5 days after that go back to disguss my medication ...they
im 18 years old .have sufferd with mouth /genital ulcers for some years now ...im under the birmingham behcets clinic at city hospital ..the other wk i posted i had my worse ever out break ..so i had 2 infusion of methylpredisolone......then 5 days after that go back to disguss my medication ...they
chrissie_lou
in
Behçet's UK
10 years ago
Revised Guidelines for Treatment of Adults with ANCA Associated Vasculitis. (2014 Revision).
After almost two years of careful consideration by a multidisciplinary panel of leading experts in the diagnosis and treatment of vasculitis, the British Society of Rheumatologists has published new guidelines to replace those drawn up in 2006. They reflect recent advances in treatment of AAV. http
After almost two years of careful consideration by a multidisciplinary panel of leading experts in the diagnosis and treatment of vasculitis, the British Society of Rheumatologists has published new guidelines to replace those drawn up in 2006. They reflect recent advances in treatment of AAV. http
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Jessica Does a "Bag Pack" for Vasculitis UK in Blyth, Newcastle
Jessica is 13 and was diagnosed with Central Nervous System Vasculitis 3 years ago. CNSV is an extremely rare type of Vasculitis and is even rarer in Children. http://www.vasculitis.org.uk/events/jessica-bag-pack
Jessica is 13 and was diagnosed with Central Nervous System Vasculitis 3 years ago. CNSV is an extremely rare type of Vasculitis and is even rarer in Children. http://www.vasculitis.org.uk/events/jessica-bag-pack
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Can Vasculitis affect your eyes. I have RA, Sjrogrens, and also Vasculitis. When I have a Vasculitis flare-up, my eyes flare-up too.
I feel run down, even more tired than usual and I get something similar to blood blisters on my elbows, finger joints and knuckles. My eyes become extremely bloodshot and inflamed, despite regular use of prescribed drops and gels. Is this a coincidence or does anyone else experience this?
I feel run down, even more tired than usual and I get something similar to blood blisters on my elbows, finger joints and knuckles. My eyes become extremely bloodshot and inflamed, despite regular use of prescribed drops and gels. Is this a coincidence or does anyone else experience this?
L1zzy
in
Vasculitis UK
10 years ago
Can my benefit be stopped?
Hi, iv'e been on ESA work related for around three years now due to a condition known as Avascular necrosis. I have had one hip replaced and am now awaiting the other to be replaced, however i suffered with depression after the first op and feel like postponing my pre op. My worry is if i do this will
Hi, iv'e been on ESA work related for around three years now due to a condition known as Avascular necrosis. I have had one hip replaced and am now awaiting the other to be replaced, however i suffered with depression after the first op and feel like postponing my pre op. My worry is if i do this will
Bribfc65
in
LUPUS UK
10 years ago
Leukocytoclastic vasculitis - is that a full diagnosis?
As I have been learning more about the many types of vasculitis I am curious about my sons diagnosis. A few years ago he was told after biopsy etc he had 'leukocytoclastic vasculitis' probably as a reaction to his body trying to fight off strep. He needed no treatment other than elevating his legs for
As I have been learning more about the many types of vasculitis I am curious about my sons diagnosis. A few years ago he was told after biopsy etc he had 'leukocytoclastic vasculitis' probably as a reaction to his body trying to fight off strep. He needed no treatment other than elevating his legs for
pinktiger53
in
Vasculitis UK
10 years ago
P-ANCA MPO positive since 2008.
Now the rheumy says I don't have vasculitis. One other test is positive now, and it is for the disease that the actor died from. I don't understand. I also have Sjogren's also auto immune. I guess I won't be getting any help:(
Now the rheumy says I don't have vasculitis. One other test is positive now, and it is for the disease that the actor died from. I don't understand. I also have Sjogren's also auto immune. I guess I won't be getting any help:(
cruznlcsw
in
Vasculitis UK
10 years ago
Travel Insurance
we are off on holiday in August to Turkey can anyone recommend or advise what I should do regarding insurance? Lupus, Hughes, avascular necrosis. Currently on hydroxy, asprin, simvastatin, alendronic acid.
we are off on holiday in August to Turkey can anyone recommend or advise what I should do regarding insurance? Lupus, Hughes, avascular necrosis. Currently on hydroxy, asprin, simvastatin, alendronic acid.
loublou
in
LUPUS UK
10 years ago
Martin loves to run and has raised money for other charities over the years. Martin is running this weekend for Vasculitis UK.
Martin was recently diagnosed with Wegener's Granulomoatosis ( GPA ) He is currently on chemotherapy treatment and if that isn't tough enough he still intends to do as much training as he can throughout the year in the hope of being able to undertake a couple of half marathons - all to help raise awareness
Martin was recently diagnosed with Wegener's Granulomoatosis ( GPA ) He is currently on chemotherapy treatment and if that isn't tough enough he still intends to do as much training as he can throughout the year in the hope of being able to undertake a couple of half marathons - all to help raise awareness
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
York Support Group Meeting
Great support group meeting today in York. Nice to catch up with some familiar faces :) Excellent talk by Dr Yusof from Chapel Allerton in Leeds. They're doing very interesting research into the process for maintaining remission in ANCA vasculitis using Rituximab. But also, as part of this research,
Great support group meeting today in York. Nice to catch up with some familiar faces :) Excellent talk by Dr Yusof from Chapel Allerton in Leeds. They're doing very interesting research into the process for maintaining remission in ANCA vasculitis using Rituximab. But also, as part of this research,
RichardE
Volunteer
in
Vasculitis UK
10 years ago
Anyone on myfortic (mycophenolate sodium)?
I'm in my 3rd month on mycophenolate cellcept. I really really like cellcept!!!!! It's mostly perfect for me & helping a lot, except due to cellcept, my pre barretts oesophagus symptoms are flaring (I don't have reflux, just oesophagus lesion symptoms due to a lifetime of issues, all of which I have
I'm in my 3rd month on mycophenolate cellcept. I really really like cellcept!!!!! It's mostly perfect for me & helping a lot, except due to cellcept, my pre barretts oesophagus symptoms are flaring (I don't have reflux, just oesophagus lesion symptoms due to a lifetime of issues, all of which I have
Barnclown
in
LUPUS UK
10 years ago
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