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Urticarial vasculitis
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Andrew will be taking part in the "Rock Solid" Race - 10K on Saturday 15th March 2014 near Exeter.
Andrew is doing this for his mum who was diagnosed with Wegener's Granulomatois when Andrew was about 11 years old. Andrew's mum has been his "rock" through the worst of times. As a (comparatively small) way of saying thank you for all his mum has done, he will be doing various fundraising activities
Andrew is doing this for his mum who was diagnosed with Wegener's Granulomatois when Andrew was about 11 years old. Andrew's mum has been his "rock" through the worst of times. As a (comparatively small) way of saying thank you for all his mum has done, he will be doing various fundraising activities
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
What does pain from vasculitis feel like? I have neuropathy, but this pain is worse that I am having now.
cruznlcsw
in
Vasculitis UK
10 years ago
Any of you with cerebral vasculitis have difficulty with your emotions? On a bad day-crying and agitated. On a good day I'm fine.
Also sleep a lot, and I am an early riser, but on a bad day I can't seem to wake up.
Also sleep a lot, and I am an early riser, but on a bad day I can't seem to wake up.
cruznlcsw
in
Vasculitis UK
10 years ago
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Hi, just wondering if anyone has cerebral vasculitis?
I saw my rheumy today who diagnosed me with sjgorhens in addition to my sle, raynauds, crps and possible cerebral vasculitis. My memory has progressively been worsening and he thinks this is the case. He's referred me for an mri of the brain and to attend a memory clinic. Just wondering if anyone else
I saw my rheumy today who diagnosed me with sjgorhens in addition to my sle, raynauds, crps and possible cerebral vasculitis. My memory has progressively been worsening and he thinks this is the case. He's referred me for an mri of the brain and to attend a memory clinic. Just wondering if anyone else
sezzie
in
LUPUS UK
10 years ago
Has anyone been diagnosed with Brain Vasculitis?
I would like to know what people are experiencing, and treatment options if any. I also have Sjogren's, a lesion in my kidney, and they have me on a heart monitor to see why I have a racing heart, difficulty breathing, and sometimes pain. Thanks for your help. I live in the USA, but I can't find a site
I would like to know what people are experiencing, and treatment options if any. I also have Sjogren's, a lesion in my kidney, and they have me on a heart monitor to see why I have a racing heart, difficulty breathing, and sometimes pain. Thanks for your help. I live in the USA, but I can't find a site
cruznlcsw
in
Vasculitis UK
10 years ago
My husband was diagnosed 2 1/2 years ago with vasculitis which damaged the kidney and lungs. We are going to the USA in May for our
daughters graduation and answering the travel insurance questions is confusing. Do we tell them he has vasculitis and chronic kidney faillure or is this all covered under "Vasculitis"? We want to make sure he is fully covered just in case he has a relapse whilst we are away. Thank you.
daughters graduation and answering the travel insurance questions is confusing. Do we tell them he has vasculitis and chronic kidney faillure or is this all covered under "Vasculitis"? We want to make sure he is fully covered just in case he has a relapse whilst we are away. Thank you.
jules59
in
Vasculitis UK
10 years ago
Anyone suffer facial pain?
When I saw the rheumotologist in October he said I have vasculitis and he believed I had GPA (Wegeners. I now have pain in my face - particularly across my forehead and under my eyes, this pain is on both sides of my face and radiates to my teeth. My sinuses get painful when the air is cold too. I
When I saw the rheumotologist in October he said I have vasculitis and he believed I had GPA (Wegeners. I now have pain in my face - particularly across my forehead and under my eyes, this pain is on both sides of my face and radiates to my teeth. My sinuses get painful when the air is cold too. I
AllyGY2013
in
Vasculitis UK
10 years ago
New to Vasculitis, Advice on symptoms and diagnosis please ?
Last year I developed a burning painful rash of red spots on both legs, feet and arms. I have SLE, Sjogrens, Raynauds and APS so thought it must be connected with one of those. Rash lasted 7 weeks but as it took 7 months to get an urgent appointment at St Thomas the rash had gone. But on the evidence
Last year I developed a burning painful rash of red spots on both legs, feet and arms. I have SLE, Sjogrens, Raynauds and APS so thought it must be connected with one of those. Rash lasted 7 weeks but as it took 7 months to get an urgent appointment at St Thomas the rash had gone. But on the evidence
Foss
in
Vasculitis UK
10 years ago
CNS Vasculitis - Stopping medication
It's just coming upto 4 years ago since I was diagnosed with CNSV. I me with my consultant last month, who suggested that it maybe time for me to wean off of the meds as I have had no flares. He said he'd discuss it with my rheumatologist in Oxford and to carry on taking the drugs until I hear differently
It's just coming upto 4 years ago since I was diagnosed with CNSV. I me with my consultant last month, who suggested that it maybe time for me to wean off of the meds as I have had no flares. He said he'd discuss it with my rheumatologist in Oxford and to carry on taking the drugs until I hear differently
kitty25
in
Vasculitis UK
10 years ago
York, North & East Ridings Vasculitis Support Group 16th March 2014
The guest speak will be Dr Yusof who is an academic registrar working at Chapel Allerton Hospital in Leeds. He has an interest in Rituximab and B cell depletion therapy in ANCA Associated Vasculitis and his talk will be about the use of Rituximab to treat AAV. http://www.vasculitis.org.uk/events/york-vsg-mar
The guest speak will be Dr Yusof who is an academic registrar working at Chapel Allerton Hospital in Leeds. He has an interest in Rituximab and B cell depletion therapy in ANCA Associated Vasculitis and his talk will be about the use of Rituximab to treat AAV. http://www.vasculitis.org.uk/events/york-vsg-mar
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Simple guide to Data Sharing. This is a reasonable well balanced view regarding data sharing
The link below was tweeted this morning by a couple of GP's. The comments and links below the article make interesting reading too. So please do read it. John Mills chairman of Vasculitis UK is very much in favour of data sharing especially for patients with rare diseases, because the only advances
The link below was tweeted this morning by a couple of GP's. The comments and links below the article make interesting reading too. So please do read it. John Mills chairman of Vasculitis UK is very much in favour of data sharing especially for patients with rare diseases, because the only advances
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Diet and Autoimmune Conditions - can you heal your body through diet?
How many of you have either done research or experienced yourself if a healthy diet can dramatically make your autoimmune conditions better or worse? I have leukocytoclastic vasculitis and Sjogren's Syndrome, and have been trying to eat both vegan and gluten free as much as possible. I find that when
How many of you have either done research or experienced yourself if a healthy diet can dramatically make your autoimmune conditions better or worse? I have leukocytoclastic vasculitis and Sjogren's Syndrome, and have been trying to eat both vegan and gluten free as much as possible. I find that when
Ajanowiak
in
Vasculitis UK
10 years ago
Has anybody heard of or suffer from a cutaneous type of PAN?
Hi my dermatology consultant has told me he believes I may have PAN, I have no other symptoms other than a rash on my limbs. Apparently the pattern of the rash is indicative of PAN. I have also had a skin biopsy and numerous blood tests. My consultant says i may have a cutaneous version of this ( I
Hi my dermatology consultant has told me he believes I may have PAN, I have no other symptoms other than a rash on my limbs. Apparently the pattern of the rash is indicative of PAN. I have also had a skin biopsy and numerous blood tests. My consultant says i may have a cutaneous version of this ( I
xxbluebooxx
in
Vasculitis UK
10 years ago
I would like to know, please, Has any doctor who treats you for your Vasculitis ever advised you not to have a tattoo?
I would like to ask a question, because so many people who have Vasculitis do ask me this question about tattoos on a regular basis. As far as I am aware "no doctor would give his approval for an unnecessary procedure that has the potential to expose anyone with Vasculitis to infection". I also believe
I would like to ask a question, because so many people who have Vasculitis do ask me this question about tattoos on a regular basis. As far as I am aware "no doctor would give his approval for an unnecessary procedure that has the potential to expose anyone with Vasculitis to infection". I also believe
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Newly diagnosed confused! First symptoms?
Hi I'm new to this. I have just been diagnosed with vasculitis from a skin biopsy after suffering from a very painful rash on my legs and more recently my arms for 8months. It started when I was 7 months pregnant and I was originally diagnosed by dermys with erythema nodosum and told rash would disappear
Hi I'm new to this. I have just been diagnosed with vasculitis from a skin biopsy after suffering from a very painful rash on my legs and more recently my arms for 8months. It started when I was 7 months pregnant and I was originally diagnosed by dermys with erythema nodosum and told rash would disappear
xxbluebooxx
in
Vasculitis UK
10 years ago
MPA with Aorta involvement
Hi All, Latest confused question ;-) I have MPA but a recent MRI on my heart has shown some damage to the Aorta, indicating a large vessel vasculitis. Has anybody seen similar - this has stumped me!
Hi All, Latest confused question ;-) I have MPA but a recent MRI on my heart has shown some damage to the Aorta, indicating a large vessel vasculitis. Has anybody seen similar - this has stumped me!
JaneLE
Administrator
in
Vasculitis UK
10 years ago
Anybody been told the same? Diagnosed with Leukocytoclastic vasculitis few months ago & now been told that from my most recent bloods
i have Rheumatoid Arthritis & that is what is causing my vasculitis, have been referred back to the rheumatologist so yet again now waiting for appointment to discuss treatment as yet still not taking any meds other than pain killers, feeling confused :/
i have Rheumatoid Arthritis & that is what is causing my vasculitis, have been referred back to the rheumatologist so yet again now waiting for appointment to discuss treatment as yet still not taking any meds other than pain killers, feeling confused :/
nesbitt
in
Vasculitis UK
10 years ago
VASCULITIS UK - JANUARY e-NEWS
I have just sent out an e-News to everyone in the e-News address book. The e-News is full of lots of interesting things, including the link to read more about the NICE appraisal and acceptance of Rituximab for the treatment of the two main ANCA Associated Vasculitis disease - GPA (Granulomatosis with
I have just sent out an e-News to everyone in the e-News address book. The e-News is full of lots of interesting things, including the link to read more about the NICE appraisal and acceptance of Rituximab for the treatment of the two main ANCA Associated Vasculitis disease - GPA (Granulomatosis with
PatriciaAnn
in
Vasculitis UK
10 years ago
UK's NICE Gives the Green Light to Rituximab
NICE has issued new Guidelines approving the use in the NHS of rituximab (MabThera) in treating the two most common types of ANCA vasculitis http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014
NICE has issued new Guidelines approving the use in the NHS of rituximab (MabThera) in treating the two most common types of ANCA vasculitis http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Can anyone help with cerebral vasculitis?
My husband who is a very active hardworking 51 year old was diagnosed with cerebral vasculitis 4 months ago. Was in an induced coma for 3 1/2 weeks, has had 6 doses of cyclophosphomide and is on prednisolon. He has finished chemo and has been put on Azathioprine, daily . He also had a DVT whilst in
My husband who is a very active hardworking 51 year old was diagnosed with cerebral vasculitis 4 months ago. Was in an induced coma for 3 1/2 weeks, has had 6 doses of cyclophosphomide and is on prednisolon. He has finished chemo and has been put on Azathioprine, daily . He also had a DVT whilst in
Simmonds797
in
Vasculitis UK
10 years ago
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