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Cerebral vasculitis
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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
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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
Individual Vasculitis Diseases -pdf downloads from the VUK website.
http://www.vasculitis.org.uk/about-
vasculitis
/individual-diseases These are samples Central Nervous System
Vasculitis
(
Cerebral
Vasculitis
) http://www.vasculitis.org.uk/about-vasculitis/central-nervous-system-vasculitis Churg Strauss Syndrome ( EGPA ) http://www.vasculitis.org.uk/about-vasculitis/
http://www.vasculitis.org.uk/about-
vasculitis
/individual-diseases These are samples Central Nervous System
Vasculitis
(
Cerebral
Vasculitis
) http://www.vasculitis.org.uk/about-vasculitis/central-nervous-system-vasculitis Churg Strauss Syndrome ( EGPA ) http://www.vasculitis.org.uk/about-vasculitis/
Suzym2u
Vasculitis UK
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
Google Analytics for the Vasculitis UK website November 1st - 30th 2015.
Thought we might share some Google Analytics with you for the VUK website www.vasculitis.org.uk From 1st November - 30th November There have been over 20,000 visits, 27% new visits, 73% revisits, over 62,000 pages viewed, average time for each visit 2mins and 20 seconds. Countries in order.....
Thought we might share some Google Analytics with you for the VUK website www.vasculitis.org.uk From 1st November - 30th November There have been over 20,000 visits, 27% new visits, 73% revisits, over 62,000 pages viewed, average time for each visit 2mins and 20 seconds. Countries in order.....
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Wegeners (GPA)
I've recently been diagnosed with Wegeners and have had my first course of Rituximab. On daily steroids and generally feeling a lot better. My nose has changed shape (saddle deformity) and it currently is letting off a bit of a horrible smell... (Like rotting) Does/did this happen to anyone else In the
I've recently been diagnosed with Wegeners and have had my first course of Rituximab. On daily steroids and generally feeling a lot better. My nose has changed shape (saddle deformity) and it currently is letting off a bit of a horrible smell... (Like rotting) Does/did this happen to anyone else In the
Marcus1988
in
Vasculitis UK
9 years ago
Treatment for CSS
I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations
I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations
Maudy1
in
Vasculitis UK
9 years ago
Anca test
Hi everyone, Iv posted on here in the past due to various symptoms which i thought could possibly be vasculitis. Months passed and my endo susspected i had PMR and i was started on a trial of steroids for a week. I did not respond to the steroids as i should have so they were stopped. He is now running
Hi everyone, Iv posted on here in the past due to various symptoms which i thought could possibly be vasculitis. Months passed and my endo susspected i had PMR and i was started on a trial of steroids for a week. I did not respond to the steroids as i should have so they were stopped. He is now running
yorkshiregirl44
in
Vasculitis UK
9 years ago
Carers Meeting - Coventry November 28th 2015
The next new "Carers" group in Meriden, Coventry, is having its inaugural meeting on 28th November, 2015. This informal meeting, with food, will take place at Berryfields Farm Shop, Meriden, Coventry. The first meeting was held 2nd August in Suffolk. A small number gathered for lunch to meet one another
The next new "Carers" group in Meriden, Coventry, is having its inaugural meeting on 28th November, 2015. This informal meeting, with food, will take place at Berryfields Farm Shop, Meriden, Coventry. The first meeting was held 2nd August in Suffolk. A small number gathered for lunch to meet one another
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
My 10 year old and vasculitis
My 10 year old daughter was diagnosed with
cerebral
vasculitis
earlier this year and we are very lucky because it's only in her brain at the moment they classified it as non progressive (at the moment) so I'm assuming it can change.
My 10 year old daughter was diagnosed with
cerebral
vasculitis
earlier this year and we are very lucky because it's only in her brain at the moment they classified it as non progressive (at the moment) so I'm assuming it can change.
Shelley46
in
Vasculitis UK
9 years ago
Post op
Hi everyone just to let you know I have had my mastectomy etc. On Monday and came home on Tuesday. I had wonderful care . I was taken straight to Intensive care unit and I was there until Tuesday lunch time. Everything went well now it's all about getting better. Unfortunately the vasculitis pain remains
Hi everyone just to let you know I have had my mastectomy etc. On Monday and came home on Tuesday. I had wonderful care . I was taken straight to Intensive care unit and I was there until Tuesday lunch time. Everything went well now it's all about getting better. Unfortunately the vasculitis pain remains
Fennahj7115
in
Vasculitis UK
9 years ago
Pain/Fatigue in Vasculitis (even when other symptoms are under control)
Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful. I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested
Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful. I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested
PCAD
in
Vasculitis UK
9 years ago
WG cannot confirmed??Worried
Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG . I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of
Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG . I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of
Nancyp
in
Vasculitis UK
9 years ago
Multiple sclerosis and vasculitis
Hi. I have had Multiple Sclerosis for 8 yrs and last year had a TIA. My neuro is sending me for angiogram and CT scan on my neck and brain. He mentioned the possibility of Vasculitis. Can anyone tell me if it's possible to have both MS and Vasculitis? I know they are both autoimmune diseases. As you
Hi. I have had Multiple Sclerosis for 8 yrs and last year had a TIA. My neuro is sending me for angiogram and CT scan on my neck and brain. He mentioned the possibility of Vasculitis. Can anyone tell me if it's possible to have both MS and Vasculitis? I know they are both autoimmune diseases. As you
3joanne
in
Vasculitis UK
9 years ago
Feedback from the new Northumberland and Cumbria first support group meeting
Just wanted to say what a great meeting we all had at the very first Northumberland and Cumbria support meeting, at the weekend.. We were a group of 22, patients and famiies. We met old friends and made new friends. :-) John gave a presentation about the importance of doctors and patients working together
Just wanted to say what a great meeting we all had at the very first Northumberland and Cumbria support meeting, at the weekend.. We were a group of 22, patients and famiies. We met old friends and made new friends. :-) John gave a presentation about the importance of doctors and patients working together
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
dust exposure and wegeners
Hello everyone i am very much interested in gathering as much imformation of people with wegeners / renal failure that might have been exposed to any form of dust over the years in your working life be it stone dust , wood , cement or any other kind of air pollutant , so if anybody would like to send
Hello everyone i am very much interested in gathering as much imformation of people with wegeners / renal failure that might have been exposed to any form of dust over the years in your working life be it stone dust , wood , cement or any other kind of air pollutant , so if anybody would like to send
morgan33
in
Vasculitis UK
9 years ago
Would using calcium channel blocker mask CNSV vasculitis in MRI?
I saw my new neurologist yesterday and he gave me a prescription for Verapamil, a calcium channel blocker, to try while I am waiting for next MRI to see if there is evidence of active
cerebral
vasculitis
.
I saw my new neurologist yesterday and he gave me a prescription for Verapamil, a calcium channel blocker, to try while I am waiting for next MRI to see if there is evidence of active
cerebral
vasculitis
.
Kat13
in
Vasculitis UK
9 years ago
In desperate need of help and advice about Behcet's.
Hey all, I'm desperate for some advice about Behcet's. To run you through my story in brief. Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes. Since April this year I've been suffering from numerous
Hey all, I'm desperate for some advice about Behcet's. To run you through my story in brief. Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes. Since April this year I've been suffering from numerous
ChangesAA
in
Behçet's UK
9 years ago
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