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Urticarial vasculitis
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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
13 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
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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
13 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
13 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
13 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
13 years ago
i'm 35 & suffer with urticarial vasculitis, is there other people on this site of a similar age who also suffer?
pickle
in
Vasculitis UK
13 years ago
Vasculitis reaction-couldn't move legs
I have Hypocomplementemic
Urticarial
Vasculitis
Syndrome. I had a reaction on Tuesday night and was rushed in to A&E with my usual symptons of swelling and tremors. This time I experienced a different reaction too.
I have Hypocomplementemic
Urticarial
Vasculitis
Syndrome. I had a reaction on Tuesday night and was rushed in to A&E with my usual symptons of swelling and tremors. This time I experienced a different reaction too.
Sarahjh2004
in
Vasculitis UK
13 years ago
Are you able to work with vasculitis?
Up until being hospitalised and diagnosed with Cerebral Vasculitis I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?) and am I destined
Up until being hospitalised and diagnosed with Cerebral Vasculitis I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?) and am I destined
ShortSarah
in
Vasculitis UK
12 years ago
Does anyone know where I can go in the U.S.? For Urticarial vasculitis?
I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
geoscott0292
in
Vasculitis UK
12 years ago
Anyone else got experience with Cyclophosphamide?
Hi all, I am starting Rituximab soon and then got told today that I will be given Cyclophosphamide as well. I was handed a leaflet that mentioned extreme nausea and hairloss, but I don't know if this is just if you are on really high doses for cancer, so I was just wondering what side effects other people
Hi all, I am starting Rituximab soon and then got told today that I will be given Cyclophosphamide as well. I was handed a leaflet that mentioned extreme nausea and hairloss, but I don't know if this is just if you are on really high doses for cancer, so I was just wondering what side effects other people
Karen34
in
LUPUS UK
13 years ago
Marathon Blog 2
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 below
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 below
jimdrum
in
Vasculitis UK
13 years ago
Newly diagnosed with leukocytoclastic vasculitis
Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head. After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the
Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head. After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the
Fresita
in
Vasculitis UK
12 years ago
I was diagnosed with Wegener's on lst Feb following a chest xray (symptoms coughing and breathlessness and now my ears are popping).
II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time. My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most
II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time. My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most
Dillybean
in
Vasculitis UK
13 years ago
Hi every one. I am confused about dose of Azathioprine. My Chest Phys. says reduce the amount but Rheumatologist says not.
I have had Microscopic Polyangiitis for about two years which is controlled by 150mg Azathioprine per day, I finished taking steriods last March. I saw my Chest constultant and he was concerned about the size of my red blood cells being above normal and should reduce to 100mg which is the dose he gives
I have had Microscopic Polyangiitis for about two years which is controlled by 150mg Azathioprine per day, I finished taking steriods last March. I saw my Chest constultant and he was concerned about the size of my red blood cells being above normal and should reduce to 100mg which is the dose he gives
LynneJ
Volunteer
in
Vasculitis UK
12 years ago
Vasculitis and work
I've recently been diagnosed with vasculitis WG and I'm in sick leave since then .iv been discharged but I still feel unwell ( fatigue and pain ) . I just wanna ask people here with experience of the same disease will that feeling last long I mean will vasculitis keep me away from my job for awhile and
I've recently been diagnosed with vasculitis WG and I'm in sick leave since then .iv been discharged but I still feel unwell ( fatigue and pain ) . I just wanna ask people here with experience of the same disease will that feeling last long I mean will vasculitis keep me away from my job for awhile and
Abdul
in
Vasculitis UK
12 years ago
Is it possible to recover from vasculitis or is it a life sentence?
I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines
I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines
Bobs
in
Vasculitis UK
12 years ago
Marathon Blog 6 - Roma edition!
My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. There is a big announcement
My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. There is a big announcement
jimdrum
in
Vasculitis UK
12 years ago
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