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Urticarial vasculitis
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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
11 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
11 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
11 years ago
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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
11 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
11 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
11 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
11 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
11 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
11 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
11 years ago
My mum has just been told she has vasculitis and it's definitely affected her brain! She also has temple arthritis and has been on steroids
For over a year and eAch time they try to reduce it the inflammation gets worse in her head? She is now having more tests done and is on another medication along side the steriods, has been told to higher the does of new tablets to 2 a day but bloods have shown inflammation has still risen? She also
For over a year and eAch time they try to reduce it the inflammation gets worse in her head? She is now having more tests done and is on another medication along side the steriods, has been told to higher the does of new tablets to 2 a day but bloods have shown inflammation has still risen? She also
Kelly1987
in
Vasculitis UK
11 years ago
How long can a vasculitis skin rash take to go away?
My mom is suffering from something, doctors don't know what it is yet. Still doing lots of tests. Doctors think it is vasculitis. She has a skin rash started out red bumps all over skin except on elbows and certain parts. Then bad back pain, and lung dry cough. Doctors put her on prednison for 5 days
My mom is suffering from something, doctors don't know what it is yet. Still doing lots of tests. Doctors think it is vasculitis. She has a skin rash started out red bumps all over skin except on elbows and certain parts. Then bad back pain, and lung dry cough. Doctors put her on prednison for 5 days
pepsi4814
in
Vasculitis UK
11 years ago
What to expect??
Hi, may ramble on a bit but please bear with me. my mum was diagnosed with wegeners vasculitis in November 2013 following a spell of what the doctors thought was flu?! she then had a mild heart attack caused by the vasculitis and was in hospital until a week before xmas. she has had two infusions of
Hi, may ramble on a bit but please bear with me. my mum was diagnosed with wegeners vasculitis in November 2013 following a spell of what the doctors thought was flu?! she then had a mild heart attack caused by the vasculitis and was in hospital until a week before xmas. she has had two infusions of
nadz84
in
Vasculitis UK
11 years ago
Need advise :/ any info on cerebral vasculitis??
I took a dizzy head in work on wednesday and took a tingling sensation down my right hand side of my body, went to my doctor n was then sent to hospital for a ct scan it came back clear now I am waiting for a mri scan to see if I have thos cerebral vasculitis anybody any info??
I took a dizzy head in work on wednesday and took a tingling sensation down my right hand side of my body, went to my doctor n was then sent to hospital for a ct scan it came back clear now I am waiting for a mri scan to see if I have thos cerebral vasculitis anybody any info??
irishgirl13
in
LUPUS UK
11 years ago
Ongoing Treatment
Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some
Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some
Wellsie
in
Vasculitis UK
11 years ago
HELP!!!Does anyone have neuromyotonia/peripheral nerve hyperexcitability as well as me?
I can't seem to find anyone or any help groups for people suffering with this immune disease, I also have clinically possible myasthenia gravis, severe fibro, loss of vision (6/60 double all the time) arthritis,
urticarial
vasculitis
! Need help in finding someone/group like FibroAction?
I can't seem to find anyone or any help groups for people suffering with this immune disease, I also have clinically possible myasthenia gravis, severe fibro, loss of vision (6/60 double all the time) arthritis,
urticarial
vasculitis
! Need help in finding someone/group like FibroAction?
Raeben98
in
Fibromyalgia Action UK
11 years ago
What next - Cerebral Vasculitis
Hi everyone.. Just an update on my dad (previous post of 71 and just diagnosed with possible cerebral vasculitis) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks. Diagnosis confirmed, started IV
Hi everyone.. Just an update on my dad (previous post of 71 and just diagnosed with possible cerebral vasculitis) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks. Diagnosis confirmed, started IV
SteveJarvis
in
Vasculitis UK
11 years ago
negative results for inflammation on blood tests
I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does
I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does
braincurdle
in
Vasculitis UK
11 years ago
"Together we are stronger" Please consider becoming a member of Vasculitis UK
Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession
Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
throat problem
I have
Urticarial
Vasculitis
,and although I have been free of symptoms for 22weeks now, I have for the last 6 weeks had a dry hot throat, I haven,t got or had a cold, but I keep losing my voice,and I don,t understand why it,s gone on for so long.
I have
Urticarial
Vasculitis
,and although I have been free of symptoms for 22weeks now, I have for the last 6 weeks had a dry hot throat, I haven,t got or had a cold, but I keep losing my voice,and I don,t understand why it,s gone on for so long.
jackrussell
in
Vasculitis UK
11 years ago
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