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Urticarial vasculitis
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Wegener's Granulomatosis: Charities, Support Groups and Raising Awareness (Episode 3)
If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take a break for one
If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take a break for one
missm23
in
Vasculitis UK
12 years ago
Help now pregnant!
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 can't get hold of my consultant. My GP was no help and told me to speak to my consultant. Can I just stop taking the prednisone?
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 can't get hold of my consultant. My GP was no help and told me to speak to my consultant. Can I just stop taking the prednisone?
Fresita
in
Vasculitis UK
12 years ago
Healthy Volunteers Wanted for Dr Andrew McClean's Research Project "Why do patients with ANCA Associated Vasculitis Experience Fatigue?"
Are there any Healthy people out there who are willing to take part in Dr Andrew McClean's research project. "Fatigue in ANCA Associated Vasculitis" They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more
Are there any Healthy people out there who are willing to take part in Dr Andrew McClean's research project. "Fatigue in ANCA Associated Vasculitis" They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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Wanted Healthy people out there who are willing to take part in Dr Andrew McClean's research project Fatigue in ANCA Associated Vasculitis
They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more people who have vasculitis too, but his main focus at this moment, is getting as many healthy controls as possible. Please message me or send John an
They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more people who have vasculitis too, but his main focus at this moment, is getting as many healthy controls as possible. Please message me or send John an
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Azathioprine
Well i have been back for my 3 monthly check up with the rhuemy today and he has decided that I am having way too many flare ups and that I can't stay on steroids as i am too young ( I am 40 so i think i might take that as a complement to cheer myself up) and so has put me on azathioprine. He has
Well i have been back for my 3 monthly check up with the rhuemy today and he has decided that I am having way too many flare ups and that I can't stay on steroids as i am too young ( I am 40 so i think i might take that as a complement to cheer myself up) and so has put me on azathioprine. He has
tiredmum
in
LUPUS UK
12 years ago
Wegener's Granulomatosis: The Treatment (Podcast 2)
Hey everyone! If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take
Hey everyone! If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take
missm23
in
Vasculitis UK
12 years ago
Are there anti-fatigue medications for vasculitis?
A colleague who has multiple sclerosis has been put on anti-fatigue medication. As you can imagine this interests me greatly, as vasculitis brings fatigue along with everything else. Anyone heard of vasculitis related fatigue being treated this way?
A colleague who has multiple sclerosis has been put on anti-fatigue medication. As you can imagine this interests me greatly, as vasculitis brings fatigue along with everything else. Anyone heard of vasculitis related fatigue being treated this way?
Hidden
in
Vasculitis UK
12 years ago
Diagnosis of vasculitis with a clear MRI
This question was asked on Facebook and I am really interested to see people's replies so would be grateful for any comments. Thanks Louise
This question was asked on Facebook and I am really interested to see people's replies so would be grateful for any comments. Thanks Louise
annie330
in
Vasculitis UK
12 years ago
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 that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
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 eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
geoscott0292
in
Vasculitis UK
12 years ago
Marathon Blog 6 - Roma edition!
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 raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. There is a big announcement
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 raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. There is a big announcement
jimdrum
in
Vasculitis UK
12 years ago
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 anything like this before in our village. John made homemade onion soup. We just invited a few friends at short notice and until recently not many
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 anything like this before in our village. John made homemade onion soup. We just invited a few friends at short notice and until recently not many
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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. "Well I found out after waiting a year that I can drive again!! Rituximab gave me seizures and the DVLA have finally said its ok! I have a job as
Charley has Wegeners Granulomatosis. She had a rare severe reaction to Rituximab. Charley is now taking methotrexate as a maintenance medication. "Well I found out after waiting a year that I can drive again!! Rituximab gave me seizures and the DVLA have finally said its ok! I have a job as
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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 be offered to patients who have received a Cyclophosphamide-base reigmen for induction of remission and have a major relapse or persistently active
The Penisula Health Technology Commissioning Group (PHTCG) has come to a decision on the use of Rituximab for severe ANCA Associated Vasculitis. Rituximab may be offered to patients who have received a Cyclophosphamide-base reigmen for induction of remission and have a major relapse or persistently active
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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 headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines
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 headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines
Bobs
in
Vasculitis UK
12 years ago
Does anyone have unclassified Vasculitis?
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 and decide on the diagnostic criteria for the variious types of vasculitis at the end of the discussion 25% of cases do not fit within these criteria
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 and decide on the diagnostic criteria for the variious types of vasculitis at the end of the discussion 25% of cases do not fit within these criteria
tracynoe
in
Vasculitis UK
12 years ago
Candy is running the 28th Hastings Half Marathon on Sun 25th March 2012 and also running the Ashford District 10K on Sun 18th March 2012
Candy is running for the Hastings half marathon 13.1 miles to raise money for Vasculitis UK in the memory of Clare Grossman, a former Ashford AC sadly passed away in the New Year Eve 2 years ago fighting disease of Wegners Granulomatosis. Candy is running the 28th Hastings Half Marathon on Sunday 25th
Candy is running for the Hastings half marathon 13.1 miles to raise money for Vasculitis UK in the memory of Clare Grossman, a former Ashford AC sadly passed away in the New Year Eve 2 years ago fighting disease of Wegners Granulomatosis. Candy is running the 28th Hastings Half Marathon on Sunday 25th
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Living with HUVs Sarah's blog Sarah has Hypocomplementic Urticarial Vasculitis
http://sarahjh2004-livingwithhuvs.blogspot.com/#!/
http://sarahjh2004-livingwithhuvs.blogspot.com/#!/
John_Mills
Vasculitis UK
in
Vasculitis UK
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?
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Newly diagnosed with leukocytoclastic vasculitis
Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head. After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the
Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head. After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the
Fresita
in
Vasculitis UK
12 years ago
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
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