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Cerebral vasculitis
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Vasculitis
Hi I live in Townsville in Australia and have an auto immune condition Vasculitis. I have had Peripheral Vasculitis for two years and have a ride of symptoms and experiences. I went from working a full time hectic job to one day experiencing what they called " dropped foot" to having to stop working
Hi I live in Townsville in Australia and have an auto immune condition Vasculitis. I have had Peripheral Vasculitis for two years and have a ride of symptoms and experiences. I went from working a full time hectic job to one day experiencing what they called " dropped foot" to having to stop working
Vrainbird
in
Vasculitis UK
8 years ago
trying to find specialist for cerebral vascilitis
my wife has been diagnosed with primary cerebral vascilitis in dublin . she has already suffered 7 strokes before finally a definate diagnosis was made . we are looking for consultant in either UK or ireland who sub specialises in cerevbral vasculitis or has alot of experience with this condition .or
my wife has been diagnosed with primary cerebral vascilitis in dublin . she has already suffered 7 strokes before finally a definate diagnosis was made . we are looking for consultant in either UK or ireland who sub specialises in cerevbral vasculitis or has alot of experience with this condition .or
finianscanlon
in
Vasculitis UK
8 years ago
Did Tara Palmer-Tomkinson have Vasculitis?
I have seen in the press there were reports of Tara Palmer-Tomkinson having an autoimmune disease which sounds very much like vasculitis (see report below from Metro). Has anyone seen anything further that confirm this? If she did have the disease it might be an opportunity to raise the profile of vasculitis
I have seen in the press there were reports of Tara Palmer-Tomkinson having an autoimmune disease which sounds very much like vasculitis (see report below from Metro). Has anyone seen anything further that confirm this? If she did have the disease it might be an opportunity to raise the profile of vasculitis
Chris-Bromsgrove
in
Vasculitis UK
8 years ago
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Urticarial vasculitis
Hi everyone, i am diagnose with urticarial vasculitis just last month, am i alone, it's frightening, i'm just so worried. My doctor wants to start me on Azathioprine tablets.....should i get a second opinion?
Hi everyone, i am diagnose with urticarial vasculitis just last month, am i alone, it's frightening, i'm just so worried. My doctor wants to start me on Azathioprine tablets.....should i get a second opinion?
sunildath
in
Vasculitis UK
8 years ago
Arthritis Research UK Rare Disease Clinical Study Workshop 3rd February 2017
John Mills chairman of VUK was invited to the Arthritis Research UK Clinical Study Workshop for Improving Clinical Research in Rare Musculoskeletal Diseases. (Including #Vasculitis). 60/70 enthusiastic and passionate doctors attended this workshop, all listening to other dedicated doctors speaking about
John Mills chairman of VUK was invited to the Arthritis Research UK Clinical Study Workshop for Improving Clinical Research in Rare Musculoskeletal Diseases. (Including #Vasculitis). 60/70 enthusiastic and passionate doctors attended this workshop, all listening to other dedicated doctors speaking about
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Microscopic polyangiitis.
I was diagnosed 4 years ago. The main attack was in my lungs, leaving me with 'leaky lungs'. I am doing really well I have stopped azathioprine, anti biotic, and just recently reduced my steroids to 5mg. I have had a slight cold the past couple of weeks and it has knocked me off my feet. My question
I was diagnosed 4 years ago. The main attack was in my lungs, leaving me with 'leaky lungs'. I am doing really well I have stopped azathioprine, anti biotic, and just recently reduced my steroids to 5mg. I have had a slight cold the past couple of weeks and it has knocked me off my feet. My question
dizzy49
in
Vasculitis UK
8 years ago
GCAwife
The rheumatologist is pretty sure he has GCA but the doctors were a bit baffled to begin with as my husband suffered several unusual TIAs triggered by
cerebral
vasculitis
and this has been narrowed down to GCA.
The rheumatologist is pretty sure he has GCA but the doctors were a bit baffled to begin with as my husband suffered several unusual TIAs triggered by
cerebral
vasculitis
and this has been narrowed down to GCA.
GCAwife
in
PMRGCAuk
8 years ago
Hearing problems from Wegeners GPA
I am wondering if anyone else has had to have grommets fitted as a result of ear damage caused by WG. I was diagnosed in June 2014 and was actually fitted with grommets before WG was even diagnosed as the cause of my problems! They didn't work for too long and since then I have had another two lots
I am wondering if anyone else has had to have grommets fitted as a result of ear damage caused by WG. I was diagnosed in June 2014 and was actually fitted with grommets before WG was even diagnosed as the cause of my problems! They didn't work for too long and since then I have had another two lots
poppet2
in
Vasculitis UK
8 years ago
DVT.s and Vasculitis
Hi- I would like to ask if there is possibly a link or a clue that there is Vasculitis present when you have a DVT. I went to the surgery about my leg, I had a bad varicous vein there and I had been having lots of problems before that with my ongoing symptons regarding possible vasculitis anyway. The
Hi- I would like to ask if there is possibly a link or a clue that there is Vasculitis present when you have a DVT. I went to the surgery about my leg, I had a bad varicous vein there and I had been having lots of problems before that with my ongoing symptons regarding possible vasculitis anyway. The
friz42
in
Vasculitis UK
8 years ago
Not Diagnosed - could there be a connection with vasculitis
Investigation online has brought me here my Inflammatory markers up on blood test last week .Have had ongoing heart failure symptoms ignored , pulmonary hypertension after & before sudden MI 12 yrs ago. This is still happening .Test results often don't show problem & reason I am having difficulty
Investigation online has brought me here my Inflammatory markers up on blood test last week .Have had ongoing heart failure symptoms ignored , pulmonary hypertension after & before sudden MI 12 yrs ago. This is still happening .Test results often don't show problem & reason I am having difficulty
skybluepink
in
Vasculitis UK
8 years ago
Cerebral Vasculitis and CNS Vasculitis
17 years ago In 1999 was diagnosed with a Disease of brain and the Neurologist called it Isolated Angiitis and after a couple of years he changed the name of the disease to
Cerebral
Vasculitis
and now after looking at a few things it's call CNS Vasculitis .
17 years ago In 1999 was diagnosed with a Disease of brain and the Neurologist called it Isolated Angiitis and after a couple of years he changed the name of the disease to
Cerebral
Vasculitis
and now after looking at a few things it's call CNS Vasculitis .
phil3
in
Vasculitis UK
8 years ago
Channel4 Vasculitis & leg ulcers
Just watched food unwrapped on Channel4 it is series 10 episode 1. There was a lady who has Vasculitis, they didn't say which one. She had extremely bad leg ulcers. They were so bad she could not walk. She attended a London hospital where the plastic surgeon treated them with cod fish skin. (Sterile
Just watched food unwrapped on Channel4 it is series 10 episode 1. There was a lady who has Vasculitis, they didn't say which one. She had extremely bad leg ulcers. They were so bad she could not walk. She attended a London hospital where the plastic surgeon treated them with cod fish skin. (Sterile
dizzy49
in
Vasculitis UK
8 years ago
Check up on bypass: There is narrowing at the bypass beginning.
I went for a check-up a few weeks ago and had an ultrasound of my bypass (mesenteric arteries) and unfortunately there is narrowing at the bypass beginning. I have copied what the report is below: Ms. ( leaving out my last name)returns to us after her aortomesenteric bypass. This was a bifurcated
I went for a check-up a few weeks ago and had an ultrasound of my bypass (mesenteric arteries) and unfortunately there is narrowing at the bypass beginning. I have copied what the report is below: Ms. ( leaving out my last name)returns to us after her aortomesenteric bypass. This was a bifurcated
RiviS7
in
Vasculitis UK
8 years ago
Vasculitis GPA (WG) and stepping down from Preds
hi was diagnosed with vasculitis GPA in may last year i had 6 lots of chemotherapy and high dose steroids 60 mg daily am now down to 5 mg daily then stepping done 1 mg every month.Also on 20 mg methotrexate i wanted to know the Dr says all blood test are now normal and vasculitis is "melting away in
hi was diagnosed with vasculitis GPA in may last year i had 6 lots of chemotherapy and high dose steroids 60 mg daily am now down to 5 mg daily then stepping done 1 mg every month.Also on 20 mg methotrexate i wanted to know the Dr says all blood test are now normal and vasculitis is "melting away in
buster1502
in
Vasculitis UK
8 years ago
Cerebral Vasculitis in Australia
I live in Australia which has a population of 24 million and the stats say
Cerebral
Vasculitis
is 1-2 per million so there could be 24 of us in Australia with it. I also have Testical Cancer which is the rarest form of cancer in males and type 2 Bladder and Bowell Cancer.
I live in Australia which has a population of 24 million and the stats say
Cerebral
Vasculitis
is 1-2 per million so there could be 24 of us in Australia with it. I also have Testical Cancer which is the rarest form of cancer in males and type 2 Bladder and Bowell Cancer.
phil3
in
Vasculitis UK
8 years ago
Relapse?
My hubby has been in remission for nearly 3 years and ANCA negative. Diagnosed with WG in 2008. Latest blood test shows ANCA result is positive. Does this mean disease is active again?
My hubby has been in remission for nearly 3 years and ANCA negative. Diagnosed with WG in 2008. Latest blood test shows ANCA result is positive. Does this mean disease is active again?
Inagh
in
Vasculitis UK
8 years ago
Rituximab - side effects
Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis, probably Churgg Strauss. I would be interested to hear from others how they felt at this stage and whether they had any side effects. I do feel a little
Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis, probably Churgg Strauss. I would be interested to hear from others how they felt at this stage and whether they had any side effects. I do feel a little
sealives
in
Vasculitis UK
8 years ago
Any experience with trigeminal neuralgia with wegeners?
Hubby dx wegeners for 2 yrs now and treatment going well For the past week has experienced extreme pain and after checking teeth and other nerve problems now waiting for MRI after px of tn Wondering if another vasculitis surfacing?
Hubby dx wegeners for 2 yrs now and treatment going well For the past week has experienced extreme pain and after checking teeth and other nerve problems now waiting for MRI after px of tn Wondering if another vasculitis surfacing?
Lamama
in
Vasculitis UK
8 years ago
Azathioprine (imuran)
Hi everyone, my fiance was diagnosed with Anca vasulitis in 2014. He started Azathioprine Aug 2015 and is currently still on it and so far doing well..thank God. My question for those of you who are on Azathioprine- how long have you been on it. : is there a limit to how long one can be on this drug
Hi everyone, my fiance was diagnosed with Anca vasulitis in 2014. He started Azathioprine Aug 2015 and is currently still on it and so far doing well..thank God. My question for those of you who are on Azathioprine- how long have you been on it. : is there a limit to how long one can be on this drug
Christina1960
in
Vasculitis UK
8 years ago
New member
Hi my name is KEITH and I am 66 years old and was diagnosed with Vasculitis Wenegers 12 months ago.Spent 2 weeks in St James Leeds having plasma exchange and then 5 months of cyclphos.Then on azothiprine and steroids but recently kidney function dropped dramaticaly so I start rituximab tomorrow with
Hi my name is KEITH and I am 66 years old and was diagnosed with Vasculitis Wenegers 12 months ago.Spent 2 weeks in St James Leeds having plasma exchange and then 5 months of cyclphos.Then on azothiprine and steroids but recently kidney function dropped dramaticaly so I start rituximab tomorrow with
Keithtim10
in
Vasculitis UK
8 years ago
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