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Experiences with
Urticarial vasculitis
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Wegeners Granulomatosis
HELP we are so frustated my husband has been to the clinic today to be told that they want him to go onto Mycopheneolate he has recently had Retuximab and it doesn t appear to have worked even thou his results say it has but he is so ill, he also had blood in his urine on the last visit but thankfully
HELP we are so frustated my husband has been to the clinic today to be told that they want him to go onto Mycopheneolate he has recently had Retuximab and it doesn t appear to have worked even thou his results say it has but he is so ill, he also had blood in his urine on the last visit but thankfully
hornet
in
Vasculitis UK
11 years ago
A new classified type of Vasculitis on the VUK website this weekend.. Anti-GBM - Goodpastures Disease
Thanks to Jann and Pat working over the weekend....a new extremely rare type of Vasculitis is now on the VUK website. Also thank you to Prof Charles Pusey Imperial College London..... http://www.vasculitis.org.uk/about-vasculitis/anti-gbm-goodpastures-disease
Thanks to Jann and Pat working over the weekend....a new extremely rare type of Vasculitis is now on the VUK website. Also thank you to Prof Charles Pusey Imperial College London..... http://www.vasculitis.org.uk/about-vasculitis/anti-gbm-goodpastures-disease
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
VASCULITIS UK WEBSITE
Since inceptions we have added
Urticarial
Vasculitis
(989 visitors) and also Vasculitis and the Eyes (395 visitors). The News and the Events is updated on a daily or weekly basis, so there is always something new for you to read about.
Since inceptions we have added
Urticarial
Vasculitis
(989 visitors) and also Vasculitis and the Eyes (395 visitors). The News and the Events is updated on a daily or weekly basis, so there is always something new for you to read about.
PatriciaAnn
in
Vasculitis UK
11 years ago
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Remission
Had the fabulous news that after 3 months of normal blood test results I'm now in remission. Cyclophosphamide treatment is being replaced with azathioprine. I am so happy!
Had the fabulous news that after 3 months of normal blood test results I'm now in remission. Cyclophosphamide treatment is being replaced with azathioprine. I am so happy!
Wellsie
in
Vasculitis UK
11 years ago
Vasculitis and Sjogrens
Anyone out there suffer from Sjogrens's and vasculitis. I am on Methotrexate and Prednisone. I am in remission at the moment. Has anyone managed to come off medication and remain in remission.
Anyone out there suffer from Sjogrens's and vasculitis. I am on Methotrexate and Prednisone. I am in remission at the moment. Has anyone managed to come off medication and remain in remission.
Sjogy
in
Vasculitis UK
11 years ago
Provisional diagnosis of Vasculitis
On the 2nd Jan 2013, I experienced reduction of vision in my left eye, after having a CT, MRI & LP there was a positive PANCA result with High MPO antibody Titre consistent with Polyarteritis; I am now being referred to Addenbrookes and would like to know what to expect with regards to tests plus actual
On the 2nd Jan 2013, I experienced reduction of vision in my left eye, after having a CT, MRI & LP there was a positive PANCA result with High MPO antibody Titre consistent with Polyarteritis; I am now being referred to Addenbrookes and would like to know what to expect with regards to tests plus actual
Sima1952
in
Vasculitis UK
11 years ago
Lincolnshire Vasculitis Support Group Meeting 30th March 2012
Lincolnshire Vasculitis Support Group meeting, Saturday 30th March 2013. The next meeting will take place at the Thorold Arms, High Street, Harmston, LN5 9SN starting at 2pm until 5pm. It will be an informal meeting and afternoon tea will be served around 4pm. During the afternoon there
Lincolnshire Vasculitis Support Group meeting, Saturday 30th March 2013. The next meeting will take place at the Thorold Arms, High Street, Harmston, LN5 9SN starting at 2pm until 5pm. It will be an informal meeting and afternoon tea will be served around 4pm. During the afternoon there
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Instructions on how to take part in the DNA Analysis Research Project... at Cambridge..... for ALL ANCA Associated Vasculitis patients
We are predominantly looking for families with more than 1 individual with ANCA Associated Vasculitis, or people whose ANCA vasculitis started below the age of 16. (WG (GPA), CSS (EGPA) and MPA. However, there are more genetic studies ongoing, so we would be keen to enroll anyone with ANCA vasculitis
We are predominantly looking for families with more than 1 individual with ANCA Associated Vasculitis, or people whose ANCA vasculitis started below the age of 16. (WG (GPA), CSS (EGPA) and MPA. However, there are more genetic studies ongoing, so we would be keen to enroll anyone with ANCA vasculitis
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Pick Me Up Special Series Magazine 24th January 2013
The Pick Me Up Special Series magazines are produced by the makers of the weekly Pick me up magazines. They are released to coincide with the important events and seasonal activities of the year. It will contain the best shocking real life stories, fashion ideas as well as health and happiness advice
The Pick Me Up Special Series magazines are produced by the makers of the weekly Pick me up magazines. They are released to coincide with the important events and seasonal activities of the year. It will contain the best shocking real life stories, fashion ideas as well as health and happiness advice
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Thank you to Dr Julie Williams Translational Scientist, Welcome Trust Clinical Research Facility, University Hospitals Birmingham
Dr Julie Williams was a speaker at the 2012 Autoimmune Focus Meeting in November 2012. Julie gave a presentation to a Symposium organised by Instrumentation Laboratory (UK) Ltd. for Laboratory Managers and Diagnostic Technicians about "Not All ANCA is equal" . Julie has very kindly dontated the
Dr Julie Williams was a speaker at the 2012 Autoimmune Focus Meeting in November 2012. Julie gave a presentation to a Symposium organised by Instrumentation Laboratory (UK) Ltd. for Laboratory Managers and Diagnostic Technicians about "Not All ANCA is equal" . Julie has very kindly dontated the
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Fundraising Ball in York in March supporting "Vasculitis UK" and "York Against Cancer"
Amelia Crossan is organising a Spring Ball at the recently refurbished DeGrey Rooms in York. She will be raising funds for two charities with half of the profits to Vasculitis UK and half to York Against Cancer. What a great way to get rid of those winter blues, don your gladrags, and have a wonderful
Amelia Crossan is organising a Spring Ball at the recently refurbished DeGrey Rooms in York. She will be raising funds for two charities with half of the profits to Vasculitis UK and half to York Against Cancer. What a great way to get rid of those winter blues, don your gladrags, and have a wonderful
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Evaluation of Rituximab March 2013
The aim of the evidence is to help with the decision making process regarding whether Rituximab should be licensed by NICE for use in the treatment of Wegener's Granulomatosis (GPA) and Microscopic Polyangiitis If you have not already taken part and you are receiving Rituximab for your Vasculitis
The aim of the evidence is to help with the decision making process regarding whether Rituximab should be licensed by NICE for use in the treatment of Wegener's Granulomatosis (GPA) and Microscopic Polyangiitis If you have not already taken part and you are receiving Rituximab for your Vasculitis
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
DNA Research
if there are two members in the family with ANCA Associated Vasculitis OR if you were diagnosed with any type of Vasculitis before you were 18 please private message John here on HealthUnlocked. John will collect names of everyone who would like to take part. Also If you are the parent of a child with
if there are two members in the family with ANCA Associated Vasculitis OR if you were diagnosed with any type of Vasculitis before you were 18 please private message John here on HealthUnlocked. John will collect names of everyone who would like to take part. Also If you are the parent of a child with
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Has anyone been diagnosed with a carcinoma of the bladder probably due to long term use of oral Cyclophosphamide?
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
I have recently been diagnosed with vasculitis in my lungs. I am being treated with Cyclophosphamide, steriods etc.
Having been really active I feel as though I have been slammed against a wall. I would just like to know anyones experience if I will get back to a good level of activity after I finish my treatment in the spring as I am told my lung xrays are looking good, or will I be limited by the damage done.
Having been really active I feel as though I have been slammed against a wall. I would just like to know anyones experience if I will get back to a good level of activity after I finish my treatment in the spring as I am told my lung xrays are looking good, or will I be limited by the damage done.
dizzy49
in
Vasculitis UK
12 years ago
Referral to Hospital
I live in the Scottish Borders a town called Peebles. When I was diagnosed with ANCA positive Vasculitis 4years ago I was referred to the Edinburgh Royal Infirmary. I have had a good relationship with the specialists at the hospital . I have recently had contact by email to the specialist who requested
I live in the Scottish Borders a town called Peebles. When I was diagnosed with ANCA positive Vasculitis 4years ago I was referred to the Edinburgh Royal Infirmary. I have had a good relationship with the specialists at the hospital . I have recently had contact by email to the specialist who requested
Bill1959
in
Vasculitis UK
12 years ago
Found out why no referral - computer lost it!
I've been waiting for an urgent referral since early September, i.e. nearly 4 months ago. Cyclophosphamide and other treatments aren't working enough for me, so I need to try a virtually-last-chance experimental biologic therapy, which only a rheumatologist can approve. But I've had no appointment, though
I've been waiting for an urgent referral since early September, i.e. nearly 4 months ago. Cyclophosphamide and other treatments aren't working enough for me, so I need to try a virtually-last-chance experimental biologic therapy, which only a rheumatologist can approve. But I've had no appointment, though
vivdunstan
Volunteer
in
Vasculitis UK
12 years ago
A body that feels all 'wrong'
I have cerebral vasculits, since 1994, when I was just 22, and the symptom pattern is totally different from other more common forms of vasculitis like Wegener's. Mine is a neurological disease. The vasculitis in my brain causes lots of strokes, often small ones, but cumulative brain damage, and a wide
I have cerebral vasculits, since 1994, when I was just 22, and the symptom pattern is totally different from other more common forms of vasculitis like Wegener's. Mine is a neurological disease. The vasculitis in my brain causes lots of strokes, often small ones, but cumulative brain damage, and a wide
vivdunstan
Volunteer
in
Vasculitis UK
12 years ago
Ramipril
Has anyone with
Urticarial
Vasculitis
had it suggested that Ramipril ( for blood pressure ) could be the cause of flares, and if yes ,did it prove to be the case,
Has anyone with
Urticarial
Vasculitis
had it suggested that Ramipril ( for blood pressure ) could be the cause of flares, and if yes ,did it prove to be the case,
jackrussell
in
Vasculitis UK
12 years ago
Dr . S . Gibson ,Renal Consultant , Retiring .
I have been looked after by Dr. S Gibson, Renal Consultant at Royal Preston Hospital, Lancashire for 5 years following my own diagnosis with vasculitis (MPA) . I was hospitalised for a month and had all the usual treatment( Steroids ,cyclophosphamide, plasma exchange transfusion ) and follow up. Throughout
I have been looked after by Dr. S Gibson, Renal Consultant at Royal Preston Hospital, Lancashire for 5 years following my own diagnosis with vasculitis (MPA) . I was hospitalised for a month and had all the usual treatment( Steroids ,cyclophosphamide, plasma exchange transfusion ) and follow up. Throughout
Maggie20
in
Vasculitis UK
12 years ago
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