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Experiences with
Urticarial vasculitis
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Vasculitis and work
I've recently been diagnosed with vasculitis WG and I'm in sick leave since then .iv been discharged but I still feel unwell ( fatigue and pain ) . I just wanna ask people here with experience of the same disease will that feeling last long I mean will vasculitis keep me away from my job for awhile and
I've recently been diagnosed with vasculitis WG and I'm in sick leave since then .iv been discharged but I still feel unwell ( fatigue and pain ) . I just wanna ask people here with experience of the same disease will that feeling last long I mean will vasculitis keep me away from my job for awhile and
Abdul
in
Vasculitis UK
12 years ago
Overcoming reading problems due to cerebral vasculitis
Inspired by a question that came through via Twitter today I thought I'd blog about the reading problems I've had due to my cerebral vasculitis, and how I am overcoming them. I was always a voracious reader as a child. I read from a very young age, and remember having to send my Mum to borrow
Inspired by a question that came through via Twitter today I thought I'd blog about the reading problems I've had due to my cerebral vasculitis, and how I am overcoming them. I was always a voracious reader as a child. I read from a very young age, and remember having to send my Mum to borrow
vivdunstan
Volunteer
in
Vasculitis UK
12 years ago
Charlie has Wegeners Granulomatosis, she is doing a bungee jump to raise money for Vasculitis UK, to raise awareness of Vasculitis.
This is Charlie's message on her justgiving page :-) If you feel you can support Charlie please follow the link below. "I have had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17. It's a disease that can affect any part of your body, it's so unpredictable and really
This is Charlie's message on her justgiving page :-) If you feel you can support Charlie please follow the link below. "I have had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17. It's a disease that can affect any part of your body, it's so unpredictable and really
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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Can we use rituximab to prevent the return of ANCA vasculitis | Arthritis Research UK
http://www.arthritisresearchuk.org/research/grant-tracker-items/2011/can-we-use-rituximab-to-prevent-the-return-of-anca-vasculitis.aspx
http://www.arthritisresearchuk.org/research/grant-tracker-items/2011/can-we-use-rituximab-to-prevent-the-return-of-anca-vasculitis.aspx
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
i'm 35 & suffer with urticarial vasculitis, is there other people on this site of a similar age who also suffer?
pickle
in
Vasculitis UK
12 years ago
Vasculitis reaction-couldn't move legs
I have Hypocomplementemic
Urticarial
Vasculitis
Syndrome. I had a reaction on Tuesday night and was rushed in to A&E with my usual symptons of swelling and tremors. This time I experienced a different reaction too.
I have Hypocomplementemic
Urticarial
Vasculitis
Syndrome. I had a reaction on Tuesday night and was rushed in to A&E with my usual symptons of swelling and tremors. This time I experienced a different reaction too.
Sarahjh2004
in
Vasculitis UK
12 years ago
Are you able to work with vasculitis?
Up until being hospitalised and diagnosed with Cerebral Vasculitis I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?) and am I destined
Up until being hospitalised and diagnosed with Cerebral Vasculitis I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?) and am I destined
ShortSarah
in
Vasculitis UK
12 years ago
Marathon Blog 2
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page below
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page below
jimdrum
in
Vasculitis UK
12 years ago
I was diagnosed with Wegener's on lst Feb following a chest xray (symptoms coughing and breathlessness and now my ears are popping).
II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time. My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most
II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time. My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most
Dillybean
in
Vasculitis UK
12 years ago
Hi every one. I am confused about dose of Azathioprine. My Chest Phys. says reduce the amount but Rheumatologist says not.
I have had Microscopic Polyangiitis for about two years which is controlled by 150mg Azathioprine per day, I finished taking steriods last March. I saw my Chest constultant and he was concerned about the size of my red blood cells being above normal and should reduce to 100mg which is the dose he gives
I have had Microscopic Polyangiitis for about two years which is controlled by 150mg Azathioprine per day, I finished taking steriods last March. I saw my Chest constultant and he was concerned about the size of my red blood cells being above normal and should reduce to 100mg which is the dose he gives
LynneJ
Volunteer
in
Vasculitis UK
12 years ago
Please take time to read Rebecca's story .Rebecca is running in memory of her mother who died earlier this year of Vasculitis.
Rebecca's mum died earlier this year of Vasculitis but it was not diagnosed until after her mum's death. We are told by Vasculitis Experts people should not be dying of Vasculitis today. Vasculitis....not difficult to diagnose.... not difficult to treat....BUT only if it is recognised in the first place
Rebecca's mum died earlier this year of Vasculitis but it was not diagnosed until after her mum's death. We are told by Vasculitis Experts people should not be dying of Vasculitis today. Vasculitis....not difficult to diagnose.... not difficult to treat....BUT only if it is recognised in the first place
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Has anyone ever experienced anxiety or panic attacks, not because of knowing they have Vasculitis, but because of it itself??
This question was asked by someone on the fb Vuk group, so I thought I would ask in the VUk/HU group too. We thought it was a very interesting question.
This question was asked by someone on the fb Vuk group, so I thought I would ask in the VUk/HU group too. We thought it was a very interesting question.
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Does anybody have any good clear photos of symptoms of their vasculitis eg:- rash red eyes saddle nose spots ulcers damaged fingers toes?
We need pictures of these things for the new vasculitis Route Map and for the New Website. They are surprisingly hard to come by as doctors and hospitals are reluctant to let others use them or sometimes they are copy right. Obviously they would be used anonymously and any photos that might be recognisable
We need pictures of these things for the new vasculitis Route Map and for the New Website. They are surprisingly hard to come by as doctors and hospitals are reluctant to let others use them or sometimes they are copy right. Obviously they would be used anonymously and any photos that might be recognisable
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Vasculitis Support Group West Midlands Meeting today.
Todays meeting at Birmingham was attended by about 60 people. As usual it was a most interesting event and the two speakers were excellent, both in terms of their style and what they had to say. David Carruthers talk about all aspects of the "Diagnostic Process", emphasing that test results were only
Todays meeting at Birmingham was attended by about 60 people. As usual it was a most interesting event and the two speakers were excellent, both in terms of their style and what they had to say. David Carruthers talk about all aspects of the "Diagnostic Process", emphasing that test results were only
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Vasculitis-uk support research at Addenbrookes for a new drug trial for treatment of vasculitis.
Dr David Jayne's team led by Dr Rona Smith at Addenbrookes are undertaking research into an existing drug, Alemtuzumab, to see if it proves to be effective in treating ANCA related vasculitis. Alemtuzumab, which is one of the new generation of monoclonal antibodies, like Rituximab. Alemtuzumab
Dr David Jayne's team led by Dr Rona Smith at Addenbrookes are undertaking research into an existing drug, Alemtuzumab, to see if it proves to be effective in treating ANCA related vasculitis. Alemtuzumab, which is one of the new generation of monoclonal antibodies, like Rituximab. Alemtuzumab
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Vasculitis Support Group West Midlands (VSGWM) Meeting will be held on Sunday 23rd October at the Hilton Birmingham Bromsgrove Hotel.
The speakers/topics: Dr David Carruthers - topic... Diagnostic Tests for Vasculitis and Dr Andrew McClean - topic....Research into Fatigue and vasculitis Contact davsamuk@yahoo.co.uk Meet and greet 12 noon meeting starts at 1.15pm No food provided only coffee and bisuits.
The speakers/topics: Dr David Carruthers - topic... Diagnostic Tests for Vasculitis and Dr Andrew McClean - topic....Research into Fatigue and vasculitis Contact davsamuk@yahoo.co.uk Meet and greet 12 noon meeting starts at 1.15pm No food provided only coffee and bisuits.
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
West Country Vasculitis Support Group
West Country Vasculitis Support Group meeting Wednesday 12 October - 6.30pm The Renal Seminar Room, Sid Ward RD&E Wonford Hospital Barrack Road, Exeter EX2 5DW The speaker is Dr Lucy Smyth and her topic is "vasculitis" If anyone fancies staying afterwards for a bite to eat at a
West Country Vasculitis Support Group meeting Wednesday 12 October - 6.30pm The Renal Seminar Room, Sid Ward RD&E Wonford Hospital Barrack Road, Exeter EX2 5DW The speaker is Dr Lucy Smyth and her topic is "vasculitis" If anyone fancies staying afterwards for a bite to eat at a
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Do you have problems explaining to people around you what "Vasculitis" is? Family, friends or work colleagues?
We have been contacted by quite a few people to the run up to Christmas and the same phrase has come up 3 times.... "They just don't get it!" One was about their boss and work colleagues, another was about teachers and fellow class mates and the other was about direct family. I found it was difficult
We have been contacted by quite a few people to the run up to Christmas and the same phrase has come up 3 times.... "They just don't get it!" One was about their boss and work colleagues, another was about teachers and fellow class mates and the other was about direct family. I found it was difficult
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Has anyone with any type of vasculitis suffered a Carcinoma of the bladder due to the side effects of the Cyclophosphamide?
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Thought I would just share this. Today we received a letter.....
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
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