Search
Search
About
Log in
Join
Experiences with
Urticarial vasculitis
Posts
Communities
765 public posts
Filter results
The newly elected ePAG (European Patient Advocacy Group) patient representatives have now been announced
This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe. 😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation
This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe. 😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
lynnj
Hi I'm new here - I was diagnosed with cerebral vasculitis in Nov 2015.  I have read a few posts but can only read for a short while everyone seems to know a lot more about their condition than I know about mine. I am now on 1500mg cell cept and 5mg prednisolone plus the various others for my stomach
Hi I'm new here - I was diagnosed with cerebral vasculitis in Nov 2015.  I have read a few posts but can only read for a short while everyone seems to know a lot more about their condition than I know about mine. I am now on 1500mg cell cept and 5mg prednisolone plus the various others for my stomach
Ljohn456
in
Vasculitis UK
8 years ago
Osteonecrosis and other rare bone diseases
Hello Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury
Hello Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury
mickeymouse42
in
LUPUS UK
8 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Primary angiitis
Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next
Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next
Hidden
in
Vasculitis UK
8 years ago
Primary angiitis
Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just received appointment to see him again in December.So I am thinking it's not serious.Or will the hospital that I am having it done at relay results,as
Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just received appointment to see him again in December.So I am thinking it's not serious.Or will the hospital that I am having it done at relay results,as
Hidden
in
MPN Voice
8 years ago
Mrs
I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially
I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially
Carriacou1937
in
Vasculitis UK
8 years ago
Vasculitis Specialist
Hi all, I wonder if anyone can tell me who would be our nearest Vasculitis Specialist for Microscopic Polyangiitis in the Dundee area please? At present my Mum sees a Renal specialist who we have no complaints about but I think it might be valuable for her to see a Vasculitis Specialist?? Also how would
Hi all, I wonder if anyone can tell me who would be our nearest Vasculitis Specialist for Microscopic Polyangiitis in the Dundee area please? At present my Mum sees a Renal specialist who we have no complaints about but I think it might be valuable for her to see a Vasculitis Specialist?? Also how would
SandraMic
in
Vasculitis UK
8 years ago
Google Analytics for the VUK website - 27th Jan - 28th Feb 2016
www.vasculitis.org.uk From 27th January - 28th February 2016 24,500 users 75,500 pages viewed Average time 21/2 mins Returning visits 26% New visits 74% Top Countries - UK, US, India, Australia, Canada, Ireland, Philippines, South Africa, Malaysia, Germany. Top 5 pages viewed Frequently Asked Questions
www.vasculitis.org.uk From 27th January - 28th February 2016 24,500 users 75,500 pages viewed Average time 21/2 mins Returning visits 26% New visits 74% Top Countries - UK, US, India, Australia, Canada, Ireland, Philippines, South Africa, Malaysia, Germany. Top 5 pages viewed Frequently Asked Questions
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Night sweats after stopping Prednisone
My finance was diagnosed with ANCA vasculitis MPA March of 2014. Needless to say he was on many drugs (including Prednisone) but now he's only on 150mg of Imurine (azathioprine) and has been prednisone free since Jan 25th,2016. My question: sometimes he still gets night sweats. Last night he had
My finance was diagnosed with ANCA vasculitis MPA March of 2014. Needless to say he was on many drugs (including Prednisone) but now he's only on 150mg of Imurine (azathioprine) and has been prednisone free since Jan 25th,2016. My question: sometimes he still gets night sweats. Last night he had
Christina1960
in
Vasculitis UK
8 years ago
Confused with blood tests
Hi I need some answer as I am a bit confused at the moment. I got some blood tests results which shows positive p ANCA, but the rest of ANCA results are negative (Inc. C, Pre3 and MPO). I called the Dr and he said it doesn't mean is facilities, but I am reading and reading and I have a lot of the symptoms
Hi I need some answer as I am a bit confused at the moment. I got some blood tests results which shows positive p ANCA, but the rest of ANCA results are negative (Inc. C, Pre3 and MPO). I called the Dr and he said it doesn't mean is facilities, but I am reading and reading and I have a lot of the symptoms
Nikita2012
in
Vasculitis UK
9 years ago
Rheumatoid Vasculitis & Epsom Salts
Hi all, I am currently having a bad flare and have been told that bath with Epsom Salts is a good way to relieve aches and pains. Has anyone else heard of this and, I know it sounds stupid, will it muck about with my meds?? Thanks :)
Hi all, I am currently having a bad flare and have been told that bath with Epsom Salts is a good way to relieve aches and pains. Has anyone else heard of this and, I know it sounds stupid, will it muck about with my meds?? Thanks :)
CHARLIE49
in
Vasculitis UK
9 years ago
New diagnosis.
The letter states that I have raised IGA, ESR "and with the presence of anti C1q antibody
urticarial
vasculitis
is extremely likely".
The letter states that I have raised IGA, ESR "and with the presence of anti C1q antibody
urticarial
vasculitis
is extremely likely".
hugs84
in
Vasculitis UK
9 years ago
Microscopic Polyangiitis
My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high dose prednisolone and several cycles of cyclophosphamide infusion and then went on to Azathioprine and low dose prednisolone and she has been on the latter for over a year now. Her mobility suffered hugely
My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high dose prednisolone and several cycles of cyclophosphamide infusion and then went on to Azathioprine and low dose prednisolone and she has been on the latter for over a year now. Her mobility suffered hugely
SandraMic
in
Vasculitis UK
9 years ago
WEGENERS / GPA
Hi guys, Just a quick query really... I'm only 27 and relatively healthy (not overweight, regularly exercise etc...) I've been diagnosed with GPA for three months now and seem to have reacted quite well to the treatment I've been given so far.. (rituximab and daily steroids 25mg/od). I've been wondering
Hi guys, Just a quick query really... I'm only 27 and relatively healthy (not overweight, regularly exercise etc...) I've been diagnosed with GPA for three months now and seem to have reacted quite well to the treatment I've been given so far.. (rituximab and daily steroids 25mg/od). I've been wondering
Marcus1988
in
Vasculitis UK
9 years ago
Help needed in Scotland
My partner was diagnosed with Vasculitis 3 years ago and treated at Ninewells. The lead consultant has since moved and subsequently the treatment my partner received has flatlined. A letter arrived today saying that Ninewells are 'discharging' my partner from their care. They have not run any tests
My partner was diagnosed with Vasculitis 3 years ago and treated at Ninewells. The lead consultant has since moved and subsequently the treatment my partner received has flatlined. A letter arrived today saying that Ninewells are 'discharging' my partner from their care. They have not run any tests
Callas
in
Vasculitis UK
9 years ago
Some Google Analytics from the Vasculitis UK Website December 3rd - 2nd January
From December 3rd - 2nd January 18, 200 visits 55,200 pages viewed 2mins 20 average time viewing 75% new visits 25% returning visits Top Ten countries UK, US, Australia, India, Ireland, Philippines, Canada, Malaysia, South Africa and New Zealand. Top 5 pages viewed Wegener's Granulomatosis ( GPA
From December 3rd - 2nd January 18, 200 visits 55,200 pages viewed 2mins 20 average time viewing 75% new visits 25% returning visits Top Ten countries UK, US, Australia, India, Ireland, Philippines, Canada, Malaysia, South Africa and New Zealand. Top 5 pages viewed Wegener's Granulomatosis ( GPA
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Google Analytics for the Vasculitis UK website November 1st - 30th 2015.
Top 5 Individual diseases in order, Behcets, GPA, ( Wegener's Granulomatosis) EGPA, ( Churg Strauss ) TAK, ( Takayasu Arteritis )
Urticarial
Vasculitis
. Susan
Top 5 Individual diseases in order, Behcets, GPA, ( Wegener's Granulomatosis) EGPA, ( Churg Strauss ) TAK, ( Takayasu Arteritis )
Urticarial
Vasculitis
. Susan
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Vitamin D and vasculitis
During the last few days a number of newspapers have reported a study which suggests that Vitamin D may be helpful in the treatment of MS. For example the Daily Mirror: http://www.mirror.co.uk/lifestyle/health/could-vitamin-d-cure-multiple-7095294 It is not the first time Vitamin D has been connected
During the last few days a number of newspapers have reported a study which suggests that Vitamin D may be helpful in the treatment of MS. For example the Daily Mirror: http://www.mirror.co.uk/lifestyle/health/could-vitamin-d-cure-multiple-7095294 It is not the first time Vitamin D has been connected
MAC12
in
Vasculitis UK
9 years ago
My son is 16 and diagnosed with cns vasculitis
Took my son into Er on dec. 15 and they originally stated he had a stroke then couple hours later stated vasculitis. He had been in to see doctor a couple months earlier for a 10 day headache period that was never really answered. We are six days into this and another rheumatologist says today we need
Took my son into Er on dec. 15 and they originally stated he had a stroke then couple hours later stated vasculitis. He had been in to see doctor a couple months earlier for a 10 day headache period that was never really answered. We are six days into this and another rheumatologist says today we need
Bear67
in
Vasculitis UK
9 years ago
Individual Vasculitis Diseases -pdf downloads from the VUK website.
All the individual vasculitis disease pages are now available as a pdf download which can also be printed. Each page will have the VUK logo at the top of the page. Just follow this link to find your type of Vasculitis. http://www.vasculitis.org.uk/about-vasculitis/individual-diseases These are samples
All the individual vasculitis disease pages are now available as a pdf download which can also be printed. Each page will have the VUK logo at the top of the page. Just follow this link to find your type of Vasculitis. http://www.vasculitis.org.uk/about-vasculitis/individual-diseases These are samples
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
1
...
20
21
22
...
39
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Vasculitis UK
641 results
LUPUS UK
87 results
Behçet's UK
21 results
View top 10 communities
Sort by
Most Relevant
Newest