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Urticarial vasculitis
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Thought I would just share this. Today we received a letter.....
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Diabetes in vasculitis sufferers
Having been diagnosed in march 2011 with vasculitis(WG?) and having the cyclo pulses and put on prednisolone, which i'm now down to 5mg, and now a maintenance drug of azathriprine I have now been diagnosed with diabetes. The doc has put me on Metformin 500mg. I'm finding it hard to accept, 1st that I
Having been diagnosed in march 2011 with vasculitis(WG?) and having the cyclo pulses and put on prednisolone, which i'm now down to 5mg, and now a maintenance drug of azathriprine I have now been diagnosed with diabetes. The doc has put me on Metformin 500mg. I'm finding it hard to accept, 1st that I
haze93
in
Vasculitis UK
12 years ago
Has cyclophosphamide followed by azathioprine stopped being used for the treatment of WG?
In reading the recent question 'WG remission experiences', I wondered why nobody mentioned azathioprine - I was given azathioprine after being informed that being given cyclophosphamide long term caused more problems than it solved. Not wanting to show my ignorance, I 'Googled' both azathioprine
In reading the recent question 'WG remission experiences', I wondered why nobody mentioned azathioprine - I was given azathioprine after being informed that being given cyclophosphamide long term caused more problems than it solved. Not wanting to show my ignorance, I 'Googled' both azathioprine
shanat19
in
Vasculitis UK
13 years ago
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How to cope with a cold?
This may seem trivial but I was wondering what advice anyone has on dealing with being ill on top of the vasculitis. I have my first cold since being diagnosed in Feb '11 with Wegener's, and I feel absolutely dreadful! I know that's par for the course with a cold but I'm worrying anyway. My eyes have
This may seem trivial but I was wondering what advice anyone has on dealing with being ill on top of the vasculitis. I have my first cold since being diagnosed in Feb '11 with Wegener's, and I feel absolutely dreadful! I know that's par for the course with a cold but I'm worrying anyway. My eyes have
EmmaC
in
Vasculitis UK
13 years ago
I have been on 12.5mg methotrexate for 9/10yrs for smouldering Wegener's. Has anyone else been on this for a long time.
I have SOB but x ray on chest is clear and my hair is very thin now. Any comments would be very welcome. Thank you.
I have SOB but x ray on chest is clear and my hair is very thin now. Any comments would be very welcome. Thank you.
Hidden
in
Vasculitis UK
13 years ago
P-ANCA positive can it happen by fluke?
Hello. I was diagnosed as CNSV because of symptoms, a SPECT scan showing reduced blood flow in areas of the brain and a positive P-ANCA. I had chemo and taking mycophanalate. My ANCA is now negative despite ongoing symptoms but I have been told it is now not vasculitis as I'm now ANCA negative. Can a
Hello. I was diagnosed as CNSV because of symptoms, a SPECT scan showing reduced blood flow in areas of the brain and a positive P-ANCA. I had chemo and taking mycophanalate. My ANCA is now negative despite ongoing symptoms but I have been told it is now not vasculitis as I'm now ANCA negative. Can a
KTWells
in
Vasculitis UK
13 years ago
Are there specific genetic risk factors for the different forms of ANCA-associated vasculitis?
There is continuous debate about whether Wegener's granulomatosis (WG), microscopic polyangiitis (MPA) and Churg–Strauss syndrome (CSS) represent one disease entity. http://ard.bmj.com/content/70/4/707.short
There is continuous debate about whether Wegener's granulomatosis (WG), microscopic polyangiitis (MPA) and Churg–Strauss syndrome (CSS) represent one disease entity. http://ard.bmj.com/content/70/4/707.short
Jim-Bornac
in
Vasculitis UK
13 years ago
Has anyone who has been diagnosed with Wegener's for more than five years, ever been diagnosed with a cardiovascular disease?
Hidden
in
Vasculitis UK
13 years ago
Vasculitis Anca
My father has been diagnosed with vasculitis anca in the liver. Has anyone received such a diagnosis? If yes please get in touch with me.
My father has been diagnosed with vasculitis anca in the liver. Has anyone received such a diagnosis? If yes please get in touch with me.
Isabellemt
in
Vasculitis UK
13 years ago
Hello
Hello fellow Lupies, i've just joined this site, found it through FB, I'm 48 years old & was diagnosed six & a half years ago, I have APS & SLE, I was ok ish for the first three & a half years but the last two & a half have been difficult, I've had varoius chest infections, Vasculitis, Pneumonia for
Hello fellow Lupies, i've just joined this site, found it through FB, I'm 48 years old & was diagnosed six & a half years ago, I have APS & SLE, I was ok ish for the first three & a half years but the last two & a half have been difficult, I've had varoius chest infections, Vasculitis, Pneumonia for
Trace
in
LUPUS UK
13 years ago
Plasmapheresis
Please can I ask if anyone has been given this and what your experiences are. When I was first under investigation following TIA and diagnosed with vasculitis and SLE ( the vasculitis is now under dispute with neuro who says vasculopathy) the rheumy I saw wanted to give me this treatment. I
Please can I ask if anyone has been given this and what your experiences are. When I was first under investigation following TIA and diagnosed with vasculitis and SLE ( the vasculitis is now under dispute with neuro who says vasculopathy) the rheumy I saw wanted to give me this treatment. I
annie330
in
LUPUS UK
12 years ago
Has anyone taking cyclophosphamide suffered from tinnitus as a result?
I have CNS vasculitis and shortly after starting cyclophosphamide I developed tinnitus. I have had it for nearly 3 years now and I just wonder if it is a side effect of this particular drug?
I have CNS vasculitis and shortly after starting cyclophosphamide I developed tinnitus. I have had it for nearly 3 years now and I just wonder if it is a side effect of this particular drug?
LyndaGould
in
Vasculitis UK
13 years ago
Breast lump
My partner was diagnosed with Vasculitis in Sept 2011, a day before he had resp failure and spent 3 mths in ICU on a ventilator after pulmonary hemmorhage. Recently we've been told he has WG anca neg. He's doing really well on 30mg pred reducing to 25mg and 50mg aza increasing to 100 next week. Yesterday
My partner was diagnosed with Vasculitis in Sept 2011, a day before he had resp failure and spent 3 mths in ICU on a ventilator after pulmonary hemmorhage. Recently we've been told he has WG anca neg. He's doing really well on 30mg pred reducing to 25mg and 50mg aza increasing to 100 next week. Yesterday
louiseevs
in
Vasculitis UK
12 years ago
Does anybody know why my newly diagnosed son would have severe shooting pains on the right side of his head? Elaine
He has been getting large lumps coming up and then quickly going on his head too. He is still having tests as the Vasculitis was discovered on a skin biopsy for the whole body rash he had. Thanks Elaine
He has been getting large lumps coming up and then quickly going on his head too. He is still having tests as the Vasculitis was discovered on a skin biopsy for the whole body rash he had. Thanks Elaine
Elainekay42
in
Vasculitis UK
13 years ago
Marathon Training blog for Vasculitis UK
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page
jimdrum
in
Vasculitis UK
12 years ago
To what extent does Vasculitis complicate invasive surgery?
Sorry if this has come up before, I have been looking everywhere but I can't find much, certainly nothing relevant to the NHS. I am just wondering to what extent pre-exisiting Wegener's would affect a person's suitability for ( for instance) hip replacement or other invasive surgery of this type.
Sorry if this has come up before, I have been looking everywhere but I can't find much, certainly nothing relevant to the NHS. I am just wondering to what extent pre-exisiting Wegener's would affect a person's suitability for ( for instance) hip replacement or other invasive surgery of this type.
Hidden
in
Vasculitis UK
12 years ago
Should we be totally honest in declaring all the symptoms of our condition when applying for travel insurance?
i have been trying to obtain an affordable quote for travel insurance to cover a visit to my daughter in the USA. I have tried several insurance companies, including the ones recommended on this site but, if I declare every single symptom in response to their questions, the quotes are vey high - well
i have been trying to obtain an affordable quote for travel insurance to cover a visit to my daughter in the USA. I have tried several insurance companies, including the ones recommended on this site but, if I declare every single symptom in response to their questions, the quotes are vey high - well
Ayla
Volunteer
in
Vasculitis UK
12 years ago
Losing driving licence due to cerebral vasculitis
I don't know if people with other forms of vasculitis ever lose their driving licences due to their vasculitis, but this happened to me, with cerebral vasculitis. My symptoms are similar to MS and other related neurological diseases, and so it's not too surprising I eventually lost the licence, even
I don't know if people with other forms of vasculitis ever lose their driving licences due to their vasculitis, but this happened to me, with cerebral vasculitis. My symptoms are similar to MS and other related neurological diseases, and so it's not too surprising I eventually lost the licence, even
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Do other vasculitis patients check their own blood pressure?
Because of my cerebral vasculitis the consultant and GP want to keep an eye on my blood pressure. It's usually checked by nurses at the hospital when I'm there each month. But I have white coat syndrome, so don't get a reliable reading when it's taken in such a setting, or in the GP's surgery. So we've
Because of my cerebral vasculitis the consultant and GP want to keep an eye on my blood pressure. It's usually checked by nurses at the hospital when I'm there each month. But I have white coat syndrome, so don't get a reliable reading when it's taken in such a setting, or in the GP's surgery. So we've
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Hi all. I have a query re a change in medication regime ,
I am about to undergo a transition from cyclophosphomide to rituximab .I have so far had 8 infusions if cyclo however the W.G is still active following a relapse which began in april 2011 .I wondered if anyone had experienced a transition in this way with the plan being that I have 1 more infusion of
I am about to undergo a transition from cyclophosphomide to rituximab .I have so far had 8 infusions if cyclo however the W.G is still active following a relapse which began in april 2011 .I wondered if anyone had experienced a transition in this way with the plan being that I have 1 more infusion of
cazy-g
in
Vasculitis UK
12 years ago
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