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Experiences with
Urticarial vasculitis
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Can Rituximab be used if you are ANCA negative?
Does anyone have any knowledge about whether Rituximab can be used if you are ANCA negative? I have CSS for nearly 2 years, but luckily a mild severity. My consultant has suggested I should perhaps change from Azathioprine since it does not appear to be controlling the CSS based on CRP levels (never
Does anyone have any knowledge about whether Rituximab can be used if you are ANCA negative? I have CSS for nearly 2 years, but luckily a mild severity. My consultant has suggested I should perhaps change from Azathioprine since it does not appear to be controlling the CSS based on CRP levels (never
JontyW
in
Vasculitis UK
9 years ago
Possible vasculitis overlap?
Hi, I am new to this site but have a question to which I can't find an answer on Google. After a long history of UCTD/SLE, I find my symptoms are changing and are now looking possibly more akin to vasculitis. I am aware that there is a great deal of overlap with lupus but I would like to know if vasculitis
Hi, I am new to this site but have a question to which I can't find an answer on Google. After a long history of UCTD/SLE, I find my symptoms are changing and are now looking possibly more akin to vasculitis. I am aware that there is a great deal of overlap with lupus but I would like to know if vasculitis
Fennella02
in
Vasculitis UK
9 years ago
Vasculitis - East Midlands Support Group meeting May 2nd 2015
The theme for this meeting will be relaxation and managing stress - with Rheumatology Specialist Nurse Alice Muir and Holistic Therapist Lisa Ranyell John Mills Chairman of Vasculitis UK will also be giving feed back from the Vasculitis Patient Symposium , the International Vasculitis Conference and
The theme for this meeting will be relaxation and managing stress - with Rheumatology Specialist Nurse Alice Muir and Holistic Therapist Lisa Ranyell John Mills Chairman of Vasculitis UK will also be giving feed back from the Vasculitis Patient Symposium , the International Vasculitis Conference and
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
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FIBRO and other things.....
ive been suffering with severe fibro for 10yrs+ but in the last 2 years i have also been diagnosed with Myasthenia Gravis, Neuromyotonia,
Urticarial
Vasculitis
, severe depression and Retinal Cone Dystrophy causing me to be registered as severely sight impaired/blind ðŸ˜ðŸ˜ðŸ˜ðŸ˜.
ive been suffering with severe fibro for 10yrs+ but in the last 2 years i have also been diagnosed with Myasthenia Gravis, Neuromyotonia,
Urticarial
Vasculitis
, severe depression and Retinal Cone Dystrophy causing me to be registered as severely sight impaired/blind ðŸ˜ðŸ˜ðŸ˜ðŸ˜.
Raeben98
in
Fibromyalgia Action UK
9 years ago
Vasculitis Patient Symposium - London - April 2015
Hope you do not mind me sharing this post but Vasculitis UK are hosting a Vasculitis Patient Symposium in London in April 2015, to coincide with the International Vasculitis Medical Conference.http://www.vasculitis2015.org/ This is the programme and details of the speakers for the "patient symposium
Hope you do not mind me sharing this post but Vasculitis UK are hosting a Vasculitis Patient Symposium in London in April 2015, to coincide with the International Vasculitis Medical Conference.http://www.vasculitis2015.org/ This is the programme and details of the speakers for the "patient symposium
John_Mills
in
Behçet's UK
9 years ago
Rituximab for SLE inflammation on the brain, please help not sure whether to accept???
Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should
Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should
KerrieB
in
LUPUS UK
9 years ago
New to all this
Hi all, have just been diagnosed with cerebral vasculitis and am trying to find as much info as I can - not easy as there seems to be very little clarity out there. I had three strokes in three weeks in Jan/early Feb, but was diagnosed with MS as all tests, ie MRIs, lumbar punctures, cerebral angiogram
Hi all, have just been diagnosed with cerebral vasculitis and am trying to find as much info as I can - not easy as there seems to be very little clarity out there. I had three strokes in three weeks in Jan/early Feb, but was diagnosed with MS as all tests, ie MRIs, lumbar punctures, cerebral angiogram
woollysox
in
Vasculitis UK
9 years ago
Rare Disease Strategy for Wales - Welsh Assembly Halls - Vasculitis UK
Jennifer and Neil, coordinators of the South Wales Vasculitis Support Group attended the Welsh Rare Disease Strategy Meeting March 3rd 2015. One of the speakers at the meeting was a lady diagnosed with a particularly rare type of Vasculitis. Please follow this link for more details http://www.vasculitis.org.uk
Jennifer and Neil, coordinators of the South Wales Vasculitis Support Group attended the Welsh Rare Disease Strategy Meeting March 3rd 2015. One of the speakers at the meeting was a lady diagnosed with a particularly rare type of Vasculitis. Please follow this link for more details http://www.vasculitis.org.uk
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Vasculitis and lupus
I've just got back from seeing a neurologist because of headache I've had for 2 months and loss of use of my tongue at one side which has affected my speech and being able to eat properly. He is waiting to see my MRI but felt sure I'd had a small stroke due to vasculitis. I'm freaking out a little
I've just got back from seeing a neurologist because of headache I've had for 2 months and loss of use of my tongue at one side which has affected my speech and being able to eat properly. He is waiting to see my MRI but felt sure I'd had a small stroke due to vasculitis. I'm freaking out a little
Sallyk21
in
LUPUS UK
9 years ago
wgp
I posted on here several times re symptoms of WGP, the ANCA test came back negative, so My GP decided to refer me to Addenbrook's which I assumed would be the Vaculitis clinic, but instead he refered me back to Rheumatology which I already attend for GCA. I had my appointment yesterday. Outcome
I posted on here several times re symptoms of WGP, the ANCA test came back negative, so My GP decided to refer me to Addenbrook's which I assumed would be the Vaculitis clinic, but instead he refered me back to Rheumatology which I already attend for GCA. I had my appointment yesterday. Outcome
bowler
in
Vasculitis UK
9 years ago
Subglottic Stenosis: positive P ANCA screen, Wegeners / GPA Diagnotic indicators, crusty nose, cyclophosphamide.
I've had 4 surgeries in 18 months for subglottic stenosis, a narrowing of the airway caused by chronic inflammation, though no definite cause has been identified. Lots of tests are negative for Vasculitis, apart from the P ANCA screen which has been positive several times. The more specific test for
I've had 4 surgeries in 18 months for subglottic stenosis, a narrowing of the airway caused by chronic inflammation, though no definite cause has been identified. Lots of tests are negative for Vasculitis, apart from the P ANCA screen which has been positive several times. The more specific test for
Chappell8
in
Vasculitis UK
9 years ago
Another question on a someone's behalf - Has anyone diagnosed with Wegener's Granulomatosis (GPA) been diagnosed with a heart condition?
Has anyone with WG (GPA) also been diagnosed with a heart problem, if so, what is the problem? Do you take any medication for it? Have you been told it is associated with your WG or not? thank you
Has anyone with WG (GPA) also been diagnosed with a heart problem, if so, what is the problem? Do you take any medication for it? Have you been told it is associated with your WG or not? thank you
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Does anyone have experiences with Rituximab?
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
IrishLupie
in
LUPUS UK
9 years ago
Saynas
Hi. Has anyone any idea of whether I am ok to use a sauna? I have anca-negative vasculitis which affects my skin and nerves. I've completed six cycles of cyclophosphamide and have been on 15mg methotrexate since late December. I'm currently down to 13mg prednisolone and tapering. I used to really like
Hi. Has anyone any idea of whether I am ok to use a sauna? I have anca-negative vasculitis which affects my skin and nerves. I've completed six cycles of cyclophosphamide and have been on 15mg methotrexate since late December. I'm currently down to 13mg prednisolone and tapering. I used to really like
Bindy68
in
Vasculitis UK
9 years ago
Operations for vasculitis sufferers
Are there many vasculitis sufferers who have had to have an operation for a medical condition non-linked to their vasculitis? I have a cyst on my spine which may have to be removed and I'm a little worried about the risks of MRSA given all the immuno-suppressants we have to take. Many thanks, LindainFrance
Are there many vasculitis sufferers who have had to have an operation for a medical condition non-linked to their vasculitis? I have a cyst on my spine which may have to be removed and I'm a little worried about the risks of MRSA given all the immuno-suppressants we have to take. Many thanks, LindainFrance
LindainFrance
in
Vasculitis UK
9 years ago
Brief diary of Vasculitis UK - 2014
As it is the last day of 2014 I thought I might share some of the News Items from the website for 2014. First is VUK's involvement for NICE to give the green light for Rituximab being used for patients with ‪#‎Vasculitis‬ http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014 Dr Paul Brogan updated
As it is the last day of 2014 I thought I might share some of the News Items from the website for 2014. First is VUK's involvement for NICE to give the green light for Rituximab being used for patients with ‪#‎Vasculitis‬ http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014 Dr Paul Brogan updated
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Jenny
Hi, my dad has WG and his hip joint has deteriorated significantly and now needs a hip replacement. He was also recently told that it appears as though his spine is narrowing. I am concerned that the doctors are not joining the dots and are focusing on a hip replacement, rather than the root cause. They
Hi, my dad has WG and his hip joint has deteriorated significantly and now needs a hip replacement. He was also recently told that it appears as though his spine is narrowing. I am concerned that the doctors are not joining the dots and are focusing on a hip replacement, rather than the root cause. They
jenny_hanly
in
Vasculitis UK
10 years ago
Vasculitis Education Day December 4th
Just wanted to say that the Vasculitis Education Day in Manchester was excellent. It was attended by about 112 doctors, nurses and patients. ( about 10 patients ) . The speakers were :- Dr Phil Riley - Paediatric and Adolescent Vasculitis Dr Hedley Emsley - Neurological Involvement of Connective Tissue
Just wanted to say that the Vasculitis Education Day in Manchester was excellent. It was attended by about 112 doctors, nurses and patients. ( about 10 patients ) . The speakers were :- Dr Phil Riley - Paediatric and Adolescent Vasculitis Dr Hedley Emsley - Neurological Involvement of Connective Tissue
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Confused over diagnosis for daughter -Urticarial Vasculitis
Hi I m a new member and would like some advice regarding my 11 yr old daughters diagnosis. Since she was under 5 she has been having blistery rashes mainly on her hands, occassionaly on her feet. Various visits to our gp has not resulted in anything much other than steriod creams, wrong diagnosis (moloscum
Hi I m a new member and would like some advice regarding my 11 yr old daughters diagnosis. Since she was under 5 she has been having blistery rashes mainly on her hands, occassionaly on her feet. Various visits to our gp has not resulted in anything much other than steriod creams, wrong diagnosis (moloscum
JoT2014
in
Vasculitis UK
10 years ago
possible vasculitis
I would be grateful if someone evaluate my blood test results. CRP: 0.829 mg/dL min 0.00- max 0.800 ANA: NEGATIVE SEDIMENTATION Sedim 60 Minutes: 14 mm/hour min 0-max20 My other results are: Formalin ANCA: POSITIVE EANCA-C: 1/20 (+) EANCA-P: NEGATIVE ANCA PROFIL PR3: 1+ ANCA PROFIL MPO: NEGATIVE
I would be grateful if someone evaluate my blood test results. CRP: 0.829 mg/dL min 0.00- max 0.800 ANA: NEGATIVE SEDIMENTATION Sedim 60 Minutes: 14 mm/hour min 0-max20 My other results are: Formalin ANCA: POSITIVE EANCA-C: 1/20 (+) EANCA-P: NEGATIVE ANCA PROFIL PR3: 1+ ANCA PROFIL MPO: NEGATIVE
sas123
in
Vasculitis UK
10 years ago
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