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Vasculitis UK AGM and Annual Meeting 29th April 2018
A week today it is the Vasculitis UK AGM and meeting. We have Dr Pani from Addenbrookes Hospital discussing ongoing clinical trials, Prof Peter Rutherford from Vifor Pharma discussing New Treatment Developments for ANCA Vasculitis plus a special guest Jayne Hardman talking about her own personal journey
A week today it is the Vasculitis UK AGM and meeting. We have Dr Pani from Addenbrookes Hospital discussing ongoing clinical trials, Prof Peter Rutherford from Vifor Pharma discussing New Treatment Developments for ANCA Vasculitis plus a special guest Jayne Hardman talking about her own personal journey
John_Mills
Vasculitis UK
in
Vasculitis UK
6 years ago
Some Google Analytics for the Vasculitis UK website from March 1st - 31st 2018, for those with an interest.
23,720 users 82% new users 18% revisiting users Pages viewed - 60,154 average viewing time for each page - 2 minutes Top 5 types of vasculitis viewed HSP (IgA vasculitis) What is ANCA? EGPA (Churg Strauss Syndrome) Giant Cell Arteritis Urticarial Vasculitis Top 10 Countries UK, US, India, Australia
23,720 users 82% new users 18% revisiting users Pages viewed - 60,154 average viewing time for each page - 2 minutes Top 5 types of vasculitis viewed HSP (IgA vasculitis) What is ANCA? EGPA (Churg Strauss Syndrome) Giant Cell Arteritis Urticarial Vasculitis Top 10 Countries UK, US, India, Australia
John_Mills
Vasculitis UK
in
Vasculitis UK
6 years ago
Addenbrooke’s Vasculitis Clinic
Hi everyone, I was just wondering if anyone has been to the Vasculitis Clinic at Addenbrooke’s Hospital? I’ve been referred by my GP after the advice I got from here (thank you!) after a really bad appointment with a rheumatologist at my local hospital. I’m trying to get as organised as I can as
Hi everyone, I was just wondering if anyone has been to the Vasculitis Clinic at Addenbrooke’s Hospital? I’ve been referred by my GP after the advice I got from here (thank you!) after a really bad appointment with a rheumatologist at my local hospital. I’m trying to get as organised as I can as
Makimon
in
LUPUS UK
6 years ago
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My prednisolone issues
Hello...I am new to this group. My leukocytoclastic vasculitis was diagnosed in october 2017.I started predenisolone 55 mg per day and reduced gradually. Now I am having it at the rate of 7.5 mg per day. I was 55kg before starting it and now I'm 72 kg. In addition to this, I got a shocking transformation
Hello...I am new to this group. My leukocytoclastic vasculitis was diagnosed in october 2017.I started predenisolone 55 mg per day and reduced gradually. Now I am having it at the rate of 7.5 mg per day. I was 55kg before starting it and now I'm 72 kg. In addition to this, I got a shocking transformation
shanahamza
in
Vasculitis UK
6 years ago
Anurysim and primary cns vasculitis
Hi I’ve been diagnosed with primary cns vasculitis 8 weeks ago, initially I had tia which resolved within 1 hr then mri showed tumour on left frontal lobe, I also had 3 focal seizures leading up to tumour removal operation 1 week after initial tia. Tumour removed successfully, mri post operation showed
Hi I’ve been diagnosed with primary cns vasculitis 8 weeks ago, initially I had tia which resolved within 1 hr then mri showed tumour on left frontal lobe, I also had 3 focal seizures leading up to tumour removal operation 1 week after initial tia. Tumour removed successfully, mri post operation showed
Vickili
in
Vasculitis UK
6 years ago
Oppressive consultant
I was diagnosed with
cerebral
vasculitis
2007 after two years getting progressively more poorly. Although my consultant at the time said there was a 5 percent chance it may be ms but lumber puncture did not diagnose ms .
I was diagnosed with
cerebral
vasculitis
2007 after two years getting progressively more poorly. Although my consultant at the time said there was a 5 percent chance it may be ms but lumber puncture did not diagnose ms .
blackgolf
in
Vasculitis UK
7 years ago
HSP is ruining my life!!
Hi I am 27 years old and I got diagnosed with HSP vasculitis in 2015. I had a lot of flare ups after this mainly swelling of the joints in my feet and ankles which resulted in lots of courses of steroids. I am currently in the process of finding an immunosuppressant that I can tolerate as my rheumatologist
Hi I am 27 years old and I got diagnosed with HSP vasculitis in 2015. I had a lot of flare ups after this mainly swelling of the joints in my feet and ankles which resulted in lots of courses of steroids. I am currently in the process of finding an immunosuppressant that I can tolerate as my rheumatologist
JessWorsnip
in
Vasculitis UK
6 years ago
Vasculitis lupus
Does anybody have vasculitis affecting the brain causing neurological stmptoms ie pins and needles and leg cramps
Does anybody have vasculitis affecting the brain causing neurological stmptoms ie pins and needles and leg cramps
kingsnorth
in
LUPUS UK
6 years ago
How many years have you got vasculitis?
Hello everyone, to get an idea of the outcome of these diseases I would like to know how many years you have been diagnosed with Vasculitis, what kind of vasculitis you have and your considerations about the greatest difficulties and changes in the quality of life. I saw a similar survey in another
Hello everyone, to get an idea of the outcome of these diseases I would like to know how many years you have been diagnosed with Vasculitis, what kind of vasculitis you have and your considerations about the greatest difficulties and changes in the quality of life. I saw a similar survey in another
Wizzi
in
Vasculitis UK
7 years ago
Can Antidepressants Cause Vasculitis?
I am new here and trying to find out if my Vasculitis is drug induced. I was recently diagnosed with Urticarial Vasculitis. I have been using Citalopram to treat my depression for the past 15 years and wondering if this could be the cause of my Vasculitis?
I am new here and trying to find out if my Vasculitis is drug induced. I was recently diagnosed with Urticarial Vasculitis. I have been using Citalopram to treat my depression for the past 15 years and wondering if this could be the cause of my Vasculitis?
WinJ3
in
Vasculitis UK
7 years ago
Vasculitis
Hi I just got vasculitis in may 2017 initially I thought it was pneumonia but later on i got admitted doctors told I have avelour heomarroge in which u get bleeding headaches joint paints etc I have a got 7 session plasma exchange for ten days n m now on immunosuppressant drugs ,,is this disease dangerous
Hi I just got vasculitis in may 2017 initially I thought it was pneumonia but later on i got admitted doctors told I have avelour heomarroge in which u get bleeding headaches joint paints etc I have a got 7 session plasma exchange for ten days n m now on immunosuppressant drugs ,,is this disease dangerous
Dineshbothra123
in
Vasculitis UK
7 years ago
Anyone had a cochlear implant?
I have vasculitis (Royal Free Hospital refuses to commit to which one, but says ‘maybe Wegner’s’). I am losing my hearing and powerful hearing aids are no longer helping much. I can hear sound but not make much sense of speech in many environments. The Ear Hospital has offered a cochlear implant and
I have vasculitis (Royal Free Hospital refuses to commit to which one, but says ‘maybe Wegner’s’). I am losing my hearing and powerful hearing aids are no longer helping much. I can hear sound but not make much sense of speech in many environments. The Ear Hospital has offered a cochlear implant and
dinahg
in
Vasculitis UK
7 years ago
Rituximab
Hi all i was diagnosed with ANCA Vasculitis which left me with Stage 3/4 CKD and following other treatments and medication i have been given rituximab 3 times now over 18 months and due another batch in June this year.I am 67 and recentley had to have a Tumor removed from my bladder this week which was
Hi all i was diagnosed with ANCA Vasculitis which left me with Stage 3/4 CKD and following other treatments and medication i have been given rituximab 3 times now over 18 months and due another batch in June this year.I am 67 and recentley had to have a Tumor removed from my bladder this week which was
Keithtim10
in
Vasculitis UK
7 years ago
Interesting abstract!
Came across this abstract into CT/PET and diagnosis of large vessel Vasculitis, it also looks at how useful it is to predict relapse. Unfortunately can’t seem to access the entire article as would have liked to know what it said regarding Prednisolone and whether it masked CT/ PET findings http://onlinelibrary.wiley.com
Came across this abstract into CT/PET and diagnosis of large vessel Vasculitis, it also looks at how useful it is to predict relapse. Unfortunately can’t seem to access the entire article as would have liked to know what it said regarding Prednisolone and whether it masked CT/ PET findings http://onlinelibrary.wiley.com
Hidden
in
Vasculitis UK
7 years ago
Still no relief
I also have been diagnosed with
cerebral
vasculitis
and temporal arteritis which gives me debilitating headaches I'm hoping the new neologist can find something they want to do a spinal for MS. I've never had one so I'm kinda Leary any help or idea appreciated
I also have been diagnosed with
cerebral
vasculitis
and temporal arteritis which gives me debilitating headaches I'm hoping the new neologist can find something they want to do a spinal for MS. I've never had one so I'm kinda Leary any help or idea appreciated
I814u24u
in
LUPUS UK
7 years ago
Egpa questions
After further reading I have more questions that perhaps the group can help to clarify.... Are ANCA positive and ANCA negative egpa both forms of vasculitis? Is there such a thing as egpa without vasculitis? In egpa is vasculitis a problem caused by clumps of eucinophils that group together for some
After further reading I have more questions that perhaps the group can help to clarify.... Are ANCA positive and ANCA negative egpa both forms of vasculitis? Is there such a thing as egpa without vasculitis? In egpa is vasculitis a problem caused by clumps of eucinophils that group together for some
Cathywp
in
Vasculitis UK
7 years ago
Early retirement because of Cerebral Vasculitis
Hi, my husband's suffers from
Cerebral
Vasculitis
and is under cyclo infusion. He had a relapsed at work and fainted ! Now they will not allow him back at work until he sees the work OT regardless of GP signing him back to work note. He is stressed about it and not sure he should retire.
Hi, my husband's suffers from
Cerebral
Vasculitis
and is under cyclo infusion. He had a relapsed at work and fainted ! Now they will not allow him back at work until he sees the work OT regardless of GP signing him back to work note. He is stressed about it and not sure he should retire.
elves
in
Vasculitis UK
7 years ago
Has anyone got good pastures ?
Hi ive been diagonised with vasculitis with positive anti gbm last july. I have veen on pred starting on 60mg and now down to 5mg, had 10 plasma exchanges and then 9 rounds of chemo. My kidney function dropped to 9% and has regained to 40% but the last three wks it hasnt moved. Im just wondering if anyone
Hi ive been diagonised with vasculitis with positive anti gbm last july. I have veen on pred starting on 60mg and now down to 5mg, had 10 plasma exchanges and then 9 rounds of chemo. My kidney function dropped to 9% and has regained to 40% but the last three wks it hasnt moved. Im just wondering if anyone
jolittle93
in
Vasculitis UK
7 years ago
Vasculitis
This is my first time here and just trying to read all the post and responses so I can learn something each and everyone. My boyfriend was diagnosed with vasculitis a few months ago even though he had been struggling with it for the past 3 years but none of the doctors he was seeing knew enough about
This is my first time here and just trying to read all the post and responses so I can learn something each and everyone. My boyfriend was diagnosed with vasculitis a few months ago even though he had been struggling with it for the past 3 years but none of the doctors he was seeing knew enough about
Edgenius
in
Vasculitis UK
7 years ago
Is there a link between surgical mesh and autoimmune conditions?
Hi. I developed Wegener's Granulomatosis or GPA 3 yrs after being treated with vaginal mesh implants for a prolapsed womb. I have read that some people are of the opinion that these 'foreign objects' in the body could be a contributor to auto immune diseases. I am wondering, does anyone else have a similar
Hi. I developed Wegener's Granulomatosis or GPA 3 yrs after being treated with vaginal mesh implants for a prolapsed womb. I have read that some people are of the opinion that these 'foreign objects' in the body could be a contributor to auto immune diseases. I am wondering, does anyone else have a similar
macrstq
in
Vasculitis UK
7 years ago
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