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VASCULITIS UK WEBSITE
As many of you may know, our new website has been operational since 1st September 2012 (just over four months). We would like to thank all our visitors and hope that you found what you were looking for and found it relatively easily. We thought you might like to see some geeky stats about the website
As many of you may know, our new website has been operational since 1st September 2012 (just over four months). We would like to thank all our visitors and hope that you found what you were looking for and found it relatively easily. We thought you might like to see some geeky stats about the website
PatriciaAnn
in
Vasculitis UK
12 years ago
Found out why no referral - computer lost it!
That is in addition to a cocktail of Azathioprine, Mycophenolate Mofetil, Methotrexate, and many other drugs to cope with side-effects and symptoms from my
cerebral
vasculitis
and the brain damage it causes.
That is in addition to a cocktail of Azathioprine, Mycophenolate Mofetil, Methotrexate, and many other drugs to cope with side-effects and symptoms from my
cerebral
vasculitis
and the brain damage it causes.
vivdunstan
Volunteer
in
Vasculitis UK
12 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
12 years ago
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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
12 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
12 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
12 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
12 years ago
A body that feels all 'wrong'
And my form of
cerebral
vasculitis
is very aggressive, resisting much conventional and unconventional treatment. As things are going I don't know how long I will have. Generally I cope well with it. I'm calm, philosophical about things, very rational.
And my form of
cerebral
vasculitis
is very aggressive, resisting much conventional and unconventional treatment. As things are going I don't know how long I will have. Generally I cope well with it. I'm calm, philosophical about things, very rational.
vivdunstan
Volunteer
in
Vasculitis UK
12 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
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
wegeners granulomatosis
my father died october 11 1981 and was only 33. he kept going the doctors and the doctors said that it was only flu, then finaly 3 weeks later he was admited and sadley died. i want to know is there a cure ?
my father died october 11 1981 and was only 33. he kept going the doctors and the doctors said that it was only flu, then finaly 3 weeks later he was admited and sadley died. i want to know is there a cure ?
jephcote2202
in
Vasculitis UK
12 years ago
Article in The Lancet (Aug 2012) about CNS/cerebral vasculitis
There's an article about primary CNS vasculitis in The Lancet in August 2012 (volume 380, issue 9843, pp. 767-77). It's written by Carlo Salvarani, Robert D Brown Jr, Gene G Hunder. Behind a publisher's paywall of course, though digital copies can be bought from http://www.thelancet.com/. I will have
There's an article about primary CNS vasculitis in The Lancet in August 2012 (volume 380, issue 9843, pp. 767-77). It's written by Carlo Salvarani, Robert D Brown Jr, Gene G Hunder. Behind a publisher's paywall of course, though digital copies can be bought from http://www.thelancet.com/. I will have
vivdunstan
Volunteer
in
Vasculitis UK
12 years ago
Rash after cyclophosphamide infusion?
Last Tuesday I had my second cyclophosphamide infusion. Two weeks earlier I'd found the first one straightforward, with no nausea and just one wonky day a couple of days later. I was so pleased and felt quite optimistic for the first time in months! Even able to reduce my steroid dose again -just 15
Last Tuesday I had my second cyclophosphamide infusion. Two weeks earlier I'd found the first one straightforward, with no nausea and just one wonky day a couple of days later. I was so pleased and felt quite optimistic for the first time in months! Even able to reduce my steroid dose again -just 15
BronteM
in
Vasculitis UK
12 years ago
Update
Hi everyone Still hanging in there - this has been my worst flare to date. Have had two doses of chemotherapy - cyclophosphamide plus three other bags of 'juice' to offset the side effects. So far so good with nausea and mouth ulcers which are supposed to come with it. Have to take a liquid
Hi everyone Still hanging in there - this has been my worst flare to date. Have had two doses of chemotherapy - cyclophosphamide plus three other bags of 'juice' to offset the side effects. So far so good with nausea and mouth ulcers which are supposed to come with it. Have to take a liquid
lesleyg
in
Behçet's UK
12 years ago
Pregnancy and Vasculitis... ?
I would like to ask a question... has anyone been diagnosed with Vasculitis, during or just after pregnancy? We have just been contacted by another two ladies who have been diagnosed with Vasculitis, one during pregnacy and one a few weeks after giving birth... one with CNSV and one with WG... John is
I would like to ask a question... has anyone been diagnosed with Vasculitis, during or just after pregnancy? We have just been contacted by another two ladies who have been diagnosed with Vasculitis, one during pregnacy and one a few weeks after giving birth... one with CNSV and one with WG... John is
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Rituximab
I went for my first Rituximab infusion on friday and had an allergic reaction to it? has this happened to anyone else? my vasculitis is now flaring up, pressumably due to the reaction. Im feeling quite down as I was expecting it to work.
I went for my first Rituximab infusion on friday and had an allergic reaction to it? has this happened to anyone else? my vasculitis is now flaring up, pressumably due to the reaction. Im feeling quite down as I was expecting it to work.
lucindaross
in
Vasculitis UK
12 years ago
Nerve pain with MPA
Just thought I would share my outcome with nerve pain in my gums and teeth due to Vasculitis MPA. For the past ten months I have been suffering pain in my gums and teeth, and attending my dentist to try and find an answer. He sorted all the minor problems to start with, and then started to look at
Just thought I would share my outcome with nerve pain in my gums and teeth due to Vasculitis MPA. For the past ten months I have been suffering pain in my gums and teeth, and attending my dentist to try and find an answer. He sorted all the minor problems to start with, and then started to look at
StephanieDiane
in
Vasculitis UK
12 years ago
Movember for Vasculitis UK
Movember a month when men grow moustaches to raise awareness for different conditions. luckly for us, that at Vasculitis UK we have Ed Barton going through the discomfort of growth facial hair. Ed is raising awareness of Vasculitis. Ed has a friend who has been diagnosed with Vasculitis. Give Ed some
Movember a month when men grow moustaches to raise awareness for different conditions. luckly for us, that at Vasculitis UK we have Ed Barton going through the discomfort of growth facial hair. Ed is raising awareness of Vasculitis. Ed has a friend who has been diagnosed with Vasculitis. Give Ed some
Jann
in
Vasculitis UK
12 years ago
Do employers have a right to cut pay and change conditions?
My husband was diagnosed with Wegeners in October, after 3 months of being very ill. He needed 6 weeks off work, for hospital investigations and to start his treatment (daily oral steroids and IV steroids and cyclo every 2 weeks). He returned to work a couple of weeks ago and was exhausted by the early
My husband was diagnosed with Wegeners in October, after 3 months of being very ill. He needed 6 weeks off work, for hospital investigations and to start his treatment (daily oral steroids and IV steroids and cyclo every 2 weeks). He returned to work a couple of weeks ago and was exhausted by the early
andyclairegp
in
Vasculitis UK
12 years ago
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