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Experiences with
Urticarial vasculitis
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Post op
Hi everyone just to let you know I have had my mastectomy etc. On Monday and came home on Tuesday. I had wonderful care . I was taken straight to Intensive care unit and I was there until Tuesday lunch time. Everything went well now it's all about getting better. Unfortunately the vasculitis pain remains
Hi everyone just to let you know I have had my mastectomy etc. On Monday and came home on Tuesday. I had wonderful care . I was taken straight to Intensive care unit and I was there until Tuesday lunch time. Everything went well now it's all about getting better. Unfortunately the vasculitis pain remains
Fennahj7115
in
Vasculitis UK
9 years ago
My 10 year old and vasculitis
Hi it's been a while since I posted on here. My 10 year old daughter was diagnosed with cerebral vasculitis earlier this year and we are very lucky because it's only in her brain at the moment they classified it as non progressive (at the moment) so I'm assuming it can change. We are under a rheumatologist
Hi it's been a while since I posted on here. My 10 year old daughter was diagnosed with cerebral vasculitis earlier this year and we are very lucky because it's only in her brain at the moment they classified it as non progressive (at the moment) so I'm assuming it can change. We are under a rheumatologist
Shelley46
in
Vasculitis UK
9 years ago
Pain/Fatigue in Vasculitis (even when other symptoms are under control)
Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful. I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested
Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful. I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested
PCAD
in
Vasculitis UK
9 years ago
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WG cannot confirmed??Worried
Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG . I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of
Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG . I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of
Nancyp
in
Vasculitis UK
9 years ago
Multiple sclerosis and vasculitis
Hi. I have had Multiple Sclerosis for 8 yrs and last year had a TIA. My neuro is sending me for angiogram and CT scan on my neck and brain. He mentioned the possibility of Vasculitis. Can anyone tell me if it's possible to have both MS and Vasculitis? I know they are both autoimmune diseases. As you
Hi. I have had Multiple Sclerosis for 8 yrs and last year had a TIA. My neuro is sending me for angiogram and CT scan on my neck and brain. He mentioned the possibility of Vasculitis. Can anyone tell me if it's possible to have both MS and Vasculitis? I know they are both autoimmune diseases. As you
3joanne
in
Vasculitis UK
9 years ago
Feedback from the new Northumberland and Cumbria first support group meeting
Just wanted to say what a great meeting we all had at the very first Northumberland and Cumbria support meeting, at the weekend.. We were a group of 22, patients and famiies. We met old friends and made new friends. :-) John gave a presentation about the importance of doctors and patients working together
Just wanted to say what a great meeting we all had at the very first Northumberland and Cumbria support meeting, at the weekend.. We were a group of 22, patients and famiies. We met old friends and made new friends. :-) John gave a presentation about the importance of doctors and patients working together
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
dust exposure and wegeners
Hello everyone i am very much interested in gathering as much imformation of people with wegeners / renal failure that might have been exposed to any form of dust over the years in your working life be it stone dust , wood , cement or any other kind of air pollutant , so if anybody would like to send
Hello everyone i am very much interested in gathering as much imformation of people with wegeners / renal failure that might have been exposed to any form of dust over the years in your working life be it stone dust , wood , cement or any other kind of air pollutant , so if anybody would like to send
morgan33
in
Vasculitis UK
9 years ago
In desperate need of help and advice about Behcet's.
Hey all, I'm desperate for some advice about Behcet's. To run you through my story in brief. Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes. Since April this year I've been suffering from numerous
Hey all, I'm desperate for some advice about Behcet's. To run you through my story in brief. Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes. Since April this year I've been suffering from numerous
ChangesAA
in
Behçet's UK
9 years ago
help.
I was diagnosed with microscopic polangitis, Anca positive in 2007. I have been in remission on a low dose of steroids and azathioprine since. I had a relapse in Jan. This time I have pains in my chest, quite a wide area, and I get constant stabbing pains in the centre of my chest. I have had an angiogram
I was diagnosed with microscopic polangitis, Anca positive in 2007. I have been in remission on a low dose of steroids and azathioprine since. I had a relapse in Jan. This time I have pains in my chest, quite a wide area, and I get constant stabbing pains in the centre of my chest. I have had an angiogram
Lucywhiton
in
Vasculitis UK
9 years ago
Private Consultant asked GP to refer for NHS clinic
Hi, I have seen a private consultant in my area and received a diagnosis of vasculitis. He also runs the a rheumatology clinic under the NHS, and wrote to my surgery to ask them to refer me to him under the NHS. Today I received a letter from the local PCT saying that my GP agreed I could see the
Hi, I have seen a private consultant in my area and received a diagnosis of vasculitis. He also runs the a rheumatology clinic under the NHS, and wrote to my surgery to ask them to refer me to him under the NHS. Today I received a letter from the local PCT saying that my GP agreed I could see the
lollypocket
in
Vasculitis UK
9 years ago
Anca vasulititis
My fiance was diagnosed with Anca vasculitis in 2014. Can one be in "remission" and still have mild symptoms?
My fiance was diagnosed with Anca vasculitis in 2014. Can one be in "remission" and still have mild symptoms?
Christina1960
in
Vasculitis UK
9 years ago
Would using calcium channel blocker mask CNSV vasculitis in MRI?
I saw my new neurologist yesterday and he gave me a prescription for Verapamil, a calcium channel blocker, to try while I am waiting for next MRI to see if there is evidence of active cerebral vasculitis. They have not treated me with prednisone in the past four months of this flare because they did
I saw my new neurologist yesterday and he gave me a prescription for Verapamil, a calcium channel blocker, to try while I am waiting for next MRI to see if there is evidence of active cerebral vasculitis. They have not treated me with prednisone in the past four months of this flare because they did
Kat13
in
Vasculitis UK
9 years ago
Blood pooling...chronic venous insufficiency anyone?
Has anyone had this diagnosed? My Drs, consultants & podiatrist have been muttering about this due to the purple my forefeet & toes go when I sit &/or stand. They've been observing this for years now. Above, the forefeet are a sort of grey-blue, and, looking at the soles of my feet & the bulk of my
Has anyone had this diagnosed? My Drs, consultants & podiatrist have been muttering about this due to the purple my forefeet & toes go when I sit &/or stand. They've been observing this for years now. Above, the forefeet are a sort of grey-blue, and, looking at the soles of my feet & the bulk of my
Barnclown
in
LUPUS UK
9 years ago
ANCA C vasculitis
Hi. In 2009 my husband was diagnosed with anca positive vasculitis. It attacked and destroyed his kidneys. He has peritoneal dialysis using a machine overnight. For 2 years he had a cough on which antibiotics had no effects. He started passing blood in the small amount if urine he could pass. He
Hi. In 2009 my husband was diagnosed with anca positive vasculitis. It attacked and destroyed his kidneys. He has peritoneal dialysis using a machine overnight. For 2 years he had a cough on which antibiotics had no effects. He started passing blood in the small amount if urine he could pass. He
sunigirl
in
Vasculitis UK
9 years ago
Do immunosuppressants and sushi mix?
Hey guys a bit if a random question. Met up with a friend at Yo Sushi and had a lovely catch up which was nice because I don’t get to go out that often. However when I came home my tummy was doing stunts and show and I was up all night I’m not sure if Imagined this having this conversation when
Hey guys a bit if a random question. Met up with a friend at Yo Sushi and had a lovely catch up which was nice because I don’t get to go out that often. However when I came home my tummy was doing stunts and show and I was up all night I’m not sure if Imagined this having this conversation when
wotshernameagain
in
LUPUS UK
9 years ago
Avascular Necrosis - Danger of Prednisone
Please search AVNawareness7 on Twitter to find out about the danger of Prednisone and cortisone medication.
Please search AVNawareness7 on Twitter to find out about the danger of Prednisone and cortisone medication.
ripon1756
in
LUPUS UK
9 years ago
Microscopic Polyangiitis
I was diagnosed with MPA in 2007. You have to experience its symptoms to understand just how painful they are. My kidneys took a hit, but the burning, jabbing pain when my inflamed blood vessels failed to deliver enough blood to my peripheral nerves almost drove me out of my mind. I was treated with
I was diagnosed with MPA in 2007. You have to experience its symptoms to understand just how painful they are. My kidneys took a hit, but the burning, jabbing pain when my inflamed blood vessels failed to deliver enough blood to my peripheral nerves almost drove me out of my mind. I was treated with
Rachelle_Labelle
in
Vasculitis UK
9 years ago
Raising a little awareness of vasculitis in our village
It was our village carnival and wakes today, so we had a stall on the main street with lots of other people selling, crafts, books, toys etc plus cakes and teas etc. We thought we would try to raise some awareness and fundraise a bit too :-) Anyway, a guy called at our stand, he was from Yorkshire,
It was our village carnival and wakes today, so we had a stall on the main street with lots of other people selling, crafts, books, toys etc plus cakes and teas etc. We thought we would try to raise some awareness and fundraise a bit too :-) Anyway, a guy called at our stand, he was from Yorkshire,
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
New research into T Cell involvement in autoimmune diseases
Stolen from Barnclown's post over on the Lupus group :) This looks like an interesting line of research given that I think T Cells are involved in a few types of vasculitis : http://www.cam.ac.uk/research/news/too-exhausted-to-fight-and-to-do-harm
Stolen from Barnclown's post over on the Lupus group :) This looks like an interesting line of research given that I think T Cells are involved in a few types of vasculitis : http://www.cam.ac.uk/research/news/too-exhausted-to-fight-and-to-do-harm
RichardE
Volunteer
in
Vasculitis UK
9 years ago
MPA query
Hi, I have had Rhuematoid Athritis for the past 8 years and now diagnosed in January this year with MPA. Due to poor kidney function I was referred to a renal consultant for treatment. I have undergone Cyclophosphamide treatment and now taking Azathopirine as well as 7mg of steroids which I understand
Hi, I have had Rhuematoid Athritis for the past 8 years and now diagnosed in January this year with MPA. Due to poor kidney function I was referred to a renal consultant for treatment. I have undergone Cyclophosphamide treatment and now taking Azathopirine as well as 7mg of steroids which I understand
Foggy56
in
Vasculitis UK
9 years ago
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