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Experiences with
Cerebral vasculitis
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Vasculitis & heart problems
Hi everyone Ive recently been diagnosed with atrial tachycardia following an EPS so waiting for an ablation. I also have ANCA associated vasculitis which was diagnosed nearly a year ago.. still trying to find the right meds to control my horrible symptoms. Up until 3 years ago I was a fit and healthy
Hi everyone Ive recently been diagnosed with atrial tachycardia following an EPS so waiting for an ablation. I also have ANCA associated vasculitis which was diagnosed nearly a year ago.. still trying to find the right meds to control my horrible symptoms. Up until 3 years ago I was a fit and healthy
Mish-da
in
Vasculitis UK
5 years ago
Guidance needed!
Hi there, I was diagnosed in December last year with subacute cutainious Lupus Erythematosus, and Urticarial vasculitis. I was prescribed Hydroxychloroquin which seemed to make my symptoms worse and so stopped taking them. I was given a steroid injection to help with joint pain and sever fatigue which
Hi there, I was diagnosed in December last year with subacute cutainious Lupus Erythematosus, and Urticarial vasculitis. I was prescribed Hydroxychloroquin which seemed to make my symptoms worse and so stopped taking them. I was given a steroid injection to help with joint pain and sever fatigue which
Apple86
in
LUPUS UK
5 years ago
Vasulitis or Behcet’s
My Brother in law is suffering from auto immune disease Doctors say it’s is
cerebral
vasculitis
as it has affected his brain now. Initially he has loss in vision around 1 year back. His vision is almost lost now and problem in walking . He also forget people and things.
My Brother in law is suffering from auto immune disease Doctors say it’s is
cerebral
vasculitis
as it has affected his brain now. Initially he has loss in vision around 1 year back. His vision is almost lost now and problem in walking . He also forget people and things.
Ashvini
in
Behçet's UK
5 years ago
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First Rituximab Infusion
Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when
Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when
russellk3
in
Vasculitis UK
5 years ago
Cerebral Vasculitis short-term memory
Is this happening to others with other survivors of
Cerebral
Vasculitis
and how you getting around it.
Is this happening to others with other survivors of
Cerebral
Vasculitis
and how you getting around it.
phil3
in
Brain health
5 years ago
Inspiration
I thought I would like to share the following and welcome people's comments.I briefly was diagnosed with ANCA (formerly Wegeners) Vasculitis which has left me with CKD Stage 3 in 2015 and since then I have been through numerous medications including Plasma Exchange and Chemo,Rituximab and various drugs.I
I thought I would like to share the following and welcome people's comments.I briefly was diagnosed with ANCA (formerly Wegeners) Vasculitis which has left me with CKD Stage 3 in 2015 and since then I have been through numerous medications including Plasma Exchange and Chemo,Rituximab and various drugs.I
Keithtim10
in
Vasculitis UK
5 years ago
Incontinence and cerebral/CNS vasculitis
I have
cerebral
vasculitis
, for 25 years this year, falling ill in 1994 aged just 22. One of my longest symptoms is severe bladder incontinence, from the brain damage - my brain can’t control my bladder properly. Sometimes cerebral/CNS patients have bowel problems too.
I have
cerebral
vasculitis
, for 25 years this year, falling ill in 1994 aged just 22. One of my longest symptoms is severe bladder incontinence, from the brain damage - my brain can’t control my bladder properly. Sometimes cerebral/CNS patients have bowel problems too.
vivdunstan
Volunteer
in
Vasculitis UK
5 years ago
Has anyone experienced osteonecrosis of the hip?
Hello, friends! Due to several rounds of prednisone over the last 8 years and numerous injections in joints including the hip, I believe I have developed osteonecrosis of my left hip. Some days it is so painful that I can't put weight on it. Some days I have to walk with a limp. And other days, it
Hello, friends! Due to several rounds of prednisone over the last 8 years and numerous injections in joints including the hip, I believe I have developed osteonecrosis of my left hip. Some days it is so painful that I can't put weight on it. Some days I have to walk with a limp. And other days, it
shareasmile
in
LUPUS UK
5 years ago
Complications with PACNS/ Cerebral Vasculitis
Would be interested to hear from anybody with
Cerebral
vasculitis
who can advise and comment on the following.1, Dry, sore and watery eyes, very sensitive to sunlight.2, Having surgery involving a general anaesthetic whilst suffering from vasculitis. 3, Having dental treatment involving extraction /implants
Would be interested to hear from anybody with
Cerebral
vasculitis
who can advise and comment on the following.1, Dry, sore and watery eyes, very sensitive to sunlight.2, Having surgery involving a general anaesthetic whilst suffering from vasculitis. 3, Having dental treatment involving extraction /implants
MelBeck
in
Vasculitis UK
5 years ago
C-ANCA PR3 readings
Hi Everybody, I have no symptoms of anything and feel pretty good. As part of my diabetes management I have regular blood tests. For the last couple of years of always returned a positive C-ANCA PR3 with the last reading 6.6 at a titre of 40. The one before was 5.8 at a titre of 20. The immunologist
Hi Everybody, I have no symptoms of anything and feel pretty good. As part of my diabetes management I have regular blood tests. For the last couple of years of always returned a positive C-ANCA PR3 with the last reading 6.6 at a titre of 40. The one before was 5.8 at a titre of 20. The immunologist
croc099
in
Vasculitis UK
5 years ago
Hello
Hello my name is Dawn this is my first post I am disabled with
Cerebral
Vasculitis
and having an elbow replacement soon has anyone else had this operation
Hello my name is Dawn this is my first post I am disabled with
Cerebral
Vasculitis
and having an elbow replacement soon has anyone else had this operation
dawn00
in
Couch to 5K
5 years ago
Not vasculitis
Hi I wrote a post earlier this year about a rash on my legs my gp told me it was vasculitis, and referred me to a dermatologist who I actually saw on Thursday. He told me it looks more like capplaritis ( don’t know if that’s the right spelling ) That I would have to wear support socks while at work
Hi I wrote a post earlier this year about a rash on my legs my gp told me it was vasculitis, and referred me to a dermatologist who I actually saw on Thursday. He told me it looks more like capplaritis ( don’t know if that’s the right spelling ) That I would have to wear support socks while at work
2stents
in
Vasculitis UK
5 years ago
Cerebral vasculitis
My brother in law has been diagnosed with
cerebral
vasculitis
in arp’19.Last year he was diagnosed with vasculitis in eyes and he was on steroids for last one year.
My brother in law has been diagnosed with
cerebral
vasculitis
in arp’19.Last year he was diagnosed with vasculitis in eyes and he was on steroids for last one year.
Ashvini
in
Behçet's UK
5 years ago
Vasculitis, Renal and Respiratory Training Day - Imperial College London
On Wednesday of this week John and myself, spent the day with around 100 doctors on a Vasculitis, renal and respiratory training day at Imperial College London. It’s the first training day of this type to be held in London. The very first training day was held in Manchester back in May. ( see previous
On Wednesday of this week John and myself, spent the day with around 100 doctors on a Vasculitis, renal and respiratory training day at Imperial College London. It’s the first training day of this type to be held in London. The very first training day was held in Manchester back in May. ( see previous
Suzym2u
Vasculitis UK
in
Vasculitis UK
5 years ago
Is Vasculitis classed as a disability?
I am not looking to claim any sort of benefit but I understand that I can get specialist equipment VAT free if I have a chronic illness (HMRC gives diabetes as an example). With Vasculitis GPA causing shortness of breath and thus giving a lesser ability to walk any great distance I am thinking of getting
I am not looking to claim any sort of benefit but I understand that I can get specialist equipment VAT free if I have a chronic illness (HMRC gives diabetes as an example). With Vasculitis GPA causing shortness of breath and thus giving a lesser ability to walk any great distance I am thinking of getting
PhiltheBear
in
Vasculitis UK
5 years ago
In May 2019 volunteers from Vasculitis UK took part in two separate Vasculitis Medical Education Workshops in Manchester.
Vifor Pharma along with Shanali Perera held an ANCA Vasculitis Resource Evaluation Workshop in Manchester. It was attended by 4 patient volunteers and 1 carer. All aspects of raising awareness of vasculitis were discussed including raising awareness through Art. UKIVAS held their first Vasculitis Education
Vifor Pharma along with Shanali Perera held an ANCA Vasculitis Resource Evaluation Workshop in Manchester. It was attended by 4 patient volunteers and 1 carer. All aspects of raising awareness of vasculitis were discussed including raising awareness through Art. UKIVAS held their first Vasculitis Education
Suzym2u
Vasculitis UK
in
Vasculitis UK
5 years ago
Diet with vasculitis
Hi everyone can anyone suggest a diet I've had double bypass kidneycancer one removed and vasculitis thyroid shot keep trying to lose weight protein diet but still putting weight on thanks off pres now on azathioprine
Hi everyone can anyone suggest a diet I've had double bypass kidneycancer one removed and vasculitis thyroid shot keep trying to lose weight protein diet but still putting weight on thanks off pres now on azathioprine
Glenville
in
Vasculitis UK
5 years ago
Avascular Necrosis caused by Steroids.
From personal experience I wouldn’t touch steroids with a barge pole. 10 years after being given steroids briefly for an overactive thyroid gland problem, I was diagnosed with Avascular Necrosis and had both my hip bones replaced in 1997 and 1998 respectively. After my first hip replacement I was
From personal experience I wouldn’t touch steroids with a barge pole. 10 years after being given steroids briefly for an overactive thyroid gland problem, I was diagnosed with Avascular Necrosis and had both my hip bones replaced in 1997 and 1998 respectively. After my first hip replacement I was
ripon1756
in
LUPUS UK
5 years ago
Vasculitis in lower legs
Hi all, I’ve had this rash since November last year, started feeling really ill lightheaded nausea found I had a small bleed on back of brain ( nothing to worry about!!!) My legs get worse as the day goes on getting redder a bit swollen and a bit of fluid was told it was Vasculitis Had god knows how
Hi all, I’ve had this rash since November last year, started feeling really ill lightheaded nausea found I had a small bleed on back of brain ( nothing to worry about!!!) My legs get worse as the day goes on getting redder a bit swollen and a bit of fluid was told it was Vasculitis Had god knows how
2stents
in
Vasculitis UK
5 years ago
Vasculitis UK represented at the Royal College for Nursing Congress 2019 in Liverpool
For the first time VUK have a stand at the Royal College for Nursing Congress 2019 in Liverpool. Over 5,500 nurses attend this Congress which is held over 4 days. I can honestly say it’s been the busiest medical conference we have been to. We have been totally wiped out of information leaflets and booklets
For the first time VUK have a stand at the Royal College for Nursing Congress 2019 in Liverpool. Over 5,500 nurses attend this Congress which is held over 4 days. I can honestly say it’s been the busiest medical conference we have been to. We have been totally wiped out of information leaflets and booklets
Suzym2u
Vasculitis UK
in
Vasculitis UK
5 years ago
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