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Cerebral vasculitis
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Rituximab for SLE inflammation on the brain, please help not sure whether to accept???
Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should
Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should
KerrieB
in
LUPUS UK
10 years ago
Rare Disease Strategy for Wales - Welsh Assembly Halls - Vasculitis UK
Jennifer and Neil, coordinators of the South Wales Vasculitis Support Group attended the Welsh Rare Disease Strategy Meeting March 3rd 2015. One of the speakers at the meeting was a lady diagnosed with a particularly rare type of Vasculitis. Please follow this link for more details http://www.vasculitis.org.uk
Jennifer and Neil, coordinators of the South Wales Vasculitis Support Group attended the Welsh Rare Disease Strategy Meeting March 3rd 2015. One of the speakers at the meeting was a lady diagnosed with a particularly rare type of Vasculitis. Please follow this link for more details http://www.vasculitis.org.uk
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Vasculitis and lupus
I've just got back from seeing a neurologist because of headache I've had for 2 months and loss of use of my tongue at one side which has affected my speech and being able to eat properly. He is waiting to see my MRI but felt sure I'd had a small stroke due to vasculitis. I'm freaking out a little
I've just got back from seeing a neurologist because of headache I've had for 2 months and loss of use of my tongue at one side which has affected my speech and being able to eat properly. He is waiting to see my MRI but felt sure I'd had a small stroke due to vasculitis. I'm freaking out a little
Sallyk21
in
LUPUS UK
10 years ago
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Life cover ?
Hi I have PCNSV OR
Cerebral
Vasculitis
. Can anyone recommend a life insurance company that will cover people like us cheaply? I can no longer work, and i am no longrr covered by my workplace.
Hi I have PCNSV OR
Cerebral
Vasculitis
. Can anyone recommend a life insurance company that will cover people like us cheaply? I can no longer work, and i am no longrr covered by my workplace.
sanromar
in
Vasculitis UK
10 years ago
wgp
I posted on here several times re symptoms of WGP, the ANCA test came back negative, so My GP decided to refer me to Addenbrook's which I assumed would be the Vaculitis clinic, but instead he refered me back to Rheumatology which I already attend for GCA. I had my appointment yesterday. Outcome
I posted on here several times re symptoms of WGP, the ANCA test came back negative, so My GP decided to refer me to Addenbrook's which I assumed would be the Vaculitis clinic, but instead he refered me back to Rheumatology which I already attend for GCA. I had my appointment yesterday. Outcome
bowler
in
Vasculitis UK
10 years ago
Subglottic Stenosis: positive P ANCA screen, Wegeners / GPA Diagnotic indicators, crusty nose, cyclophosphamide.
I've had 4 surgeries in 18 months for subglottic stenosis, a narrowing of the airway caused by chronic inflammation, though no definite cause has been identified. Lots of tests are negative for Vasculitis, apart from the P ANCA screen which has been positive several times. The more specific test for
I've had 4 surgeries in 18 months for subglottic stenosis, a narrowing of the airway caused by chronic inflammation, though no definite cause has been identified. Lots of tests are negative for Vasculitis, apart from the P ANCA screen which has been positive several times. The more specific test for
Chappell8
in
Vasculitis UK
10 years ago
Another question on a someone's behalf - Has anyone diagnosed with Wegener's Granulomatosis (GPA) been diagnosed with a heart condition?
Has anyone with WG (GPA) also been diagnosed with a heart problem, if so, what is the problem? Do you take any medication for it? Have you been told it is associated with your WG or not? thank you
Has anyone with WG (GPA) also been diagnosed with a heart problem, if so, what is the problem? Do you take any medication for it? Have you been told it is associated with your WG or not? thank you
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Does anyone have experiences with Rituximab?
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
So I've been having IVIg on and off for the last 8 months and while it works well for me it's really difficult to make the whole week off college and work fit (and I know it'll make keeping a career difficult). My rheumy has suggested Rituximab as an alternative so that she can also get me off the godforsaken
IrishLupie
in
LUPUS UK
10 years ago
Saynas
Hi. Has anyone any idea of whether I am ok to use a sauna? I have anca-negative vasculitis which affects my skin and nerves. I've completed six cycles of cyclophosphamide and have been on 15mg methotrexate since late December. I'm currently down to 13mg prednisolone and tapering. I used to really like
Hi. Has anyone any idea of whether I am ok to use a sauna? I have anca-negative vasculitis which affects my skin and nerves. I've completed six cycles of cyclophosphamide and have been on 15mg methotrexate since late December. I'm currently down to 13mg prednisolone and tapering. I used to really like
Bindy68
in
Vasculitis UK
10 years ago
Operations for vasculitis sufferers
Are there many vasculitis sufferers who have had to have an operation for a medical condition non-linked to their vasculitis? I have a cyst on my spine which may have to be removed and I'm a little worried about the risks of MRSA given all the immuno-suppressants we have to take. Many thanks, LindainFrance
Are there many vasculitis sufferers who have had to have an operation for a medical condition non-linked to their vasculitis? I have a cyst on my spine which may have to be removed and I'm a little worried about the risks of MRSA given all the immuno-suppressants we have to take. Many thanks, LindainFrance
LindainFrance
in
Vasculitis UK
10 years ago
Brief diary of Vasculitis UK - 2014
As it is the last day of 2014 I thought I might share some of the News Items from the website for 2014. First is VUK's involvement for NICE to give the green light for Rituximab being used for patients with #Vasculitis http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014 Dr Paul Brogan updated
As it is the last day of 2014 I thought I might share some of the News Items from the website for 2014. First is VUK's involvement for NICE to give the green light for Rituximab being used for patients with #Vasculitis http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014 Dr Paul Brogan updated
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Jenny
Hi, my dad has WG and his hip joint has deteriorated significantly and now needs a hip replacement. He was also recently told that it appears as though his spine is narrowing. I am concerned that the doctors are not joining the dots and are focusing on a hip replacement, rather than the root cause. They
Hi, my dad has WG and his hip joint has deteriorated significantly and now needs a hip replacement. He was also recently told that it appears as though his spine is narrowing. I am concerned that the doctors are not joining the dots and are focusing on a hip replacement, rather than the root cause. They
jenny_hanly
in
Vasculitis UK
10 years ago
Vasculitis Education Day December 4th
Just wanted to say that the Vasculitis Education Day in Manchester was excellent. It was attended by about 112 doctors, nurses and patients. ( about 10 patients ) . The speakers were :- Dr Phil Riley - Paediatric and Adolescent Vasculitis Dr Hedley Emsley - Neurological Involvement of Connective Tissue
Just wanted to say that the Vasculitis Education Day in Manchester was excellent. It was attended by about 112 doctors, nurses and patients. ( about 10 patients ) . The speakers were :- Dr Phil Riley - Paediatric and Adolescent Vasculitis Dr Hedley Emsley - Neurological Involvement of Connective Tissue
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
possible vasculitis
I would be grateful if someone evaluate my blood test results. CRP: 0.829 mg/dL min 0.00- max 0.800 ANA: NEGATIVE SEDIMENTATION Sedim 60 Minutes: 14 mm/hour min 0-max20 My other results are: Formalin ANCA: POSITIVE EANCA-C: 1/20 (+) EANCA-P: NEGATIVE ANCA PROFIL PR3: 1+ ANCA PROFIL MPO: NEGATIVE
I would be grateful if someone evaluate my blood test results. CRP: 0.829 mg/dL min 0.00- max 0.800 ANA: NEGATIVE SEDIMENTATION Sedim 60 Minutes: 14 mm/hour min 0-max20 My other results are: Formalin ANCA: POSITIVE EANCA-C: 1/20 (+) EANCA-P: NEGATIVE ANCA PROFIL PR3: 1+ ANCA PROFIL MPO: NEGATIVE
sas123
in
Vasculitis UK
10 years ago
Update and Further Vasculitis (WG) advice would be welcome
Hi, Since my earlier post, I have now been diagnosed with Wegeners Granulomatosis (GPA). I am on 25mg of prednisolone a day and, due to having scleritis, I am taking four drops of Acular a day and a further two drops of dorzolamide to relieve growing eye pressure. At the moment, I have few, if any,
Hi, Since my earlier post, I have now been diagnosed with Wegeners Granulomatosis (GPA). I am on 25mg of prednisolone a day and, due to having scleritis, I am taking four drops of Acular a day and a further two drops of dorzolamide to relieve growing eye pressure. At the moment, I have few, if any,
chsskg
in
Vasculitis UK
10 years ago
positive c-anca with pr3
I have positive c-anca and pr3 test but i have no symptoms of any vasculitis disorder except dry eyes. What could be the reason of this positive test except vasculitis disorder such as Wegener's granulomatosis?
I have positive c-anca and pr3 test but i have no symptoms of any vasculitis disorder except dry eyes. What could be the reason of this positive test except vasculitis disorder such as Wegener's granulomatosis?
sas123
in
Vasculitis UK
10 years ago
New to this. can anybody help?
Hey guys. so my dads been diagnosed with Vasculitis. it sucks. i hate it. but whats worse is the not knowing. and the amount of people who say ''what's that?'' so my question is, is there anybody on here who is finding it difficult to cope. someone maybe who i can talk to and understand better and
Hey guys. so my dads been diagnosed with Vasculitis. it sucks. i hate it. but whats worse is the not knowing. and the amount of people who say ''what's that?'' so my question is, is there anybody on here who is finding it difficult to cope. someone maybe who i can talk to and understand better and
LADavies
in
Vasculitis UK
10 years ago
Hello all
I was diagnosed with ANCA Vasculitis and sensory motor neuropathy in February this year. I have had chemo therapy but had a reaction to cyclophosphomide so went onto mycophenolate. The vasculitis has damaged my kidneys and the nervous system in my right foot and neck. Fortunately no other organs were
I was diagnosed with ANCA Vasculitis and sensory motor neuropathy in February this year. I have had chemo therapy but had a reaction to cyclophosphomide so went onto mycophenolate. The vasculitis has damaged my kidneys and the nervous system in my right foot and neck. Fortunately no other organs were
Hidden
in
Vasculitis UK
10 years ago
Saturday 25th October Samantha will help raise awareness of vasculitis and for Vasculitis UK when she hosts a coffee morning.
If you live in the Lincolnshire area you may want to go along and support Samantha. Family and Friends welcome. In July this year Samantha was diagnosed with Lupus and Vasculitis. Samantha and her family relied on information supplied by Vasculitis UK and other charities to help them understand the
If you live in the Lincolnshire area you may want to go along and support Samantha. Family and Friends welcome. In July this year Samantha was diagnosed with Lupus and Vasculitis. Samantha and her family relied on information supplied by Vasculitis UK and other charities to help them understand the
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Polyarteritis Nodosa
Hi. I was diagnosed with vasculitis a month ago (after many years) and I've just received a letter from the skin biopsy saying it is polyarteritis nodosa. The condition only affects my skin and peripheral nerves (at the moment). I'm Anca negative and bloods generally look normal. Can anyone advise how
Hi. I was diagnosed with vasculitis a month ago (after many years) and I've just received a letter from the skin biopsy saying it is polyarteritis nodosa. The condition only affects my skin and peripheral nerves (at the moment). I'm Anca negative and bloods generally look normal. Can anyone advise how
Bindy68
in
Vasculitis UK
10 years ago
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