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Cerebral vasculitis
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New to ANCA Vasculitis
I have searched the site for new information but notice that most entries are several years old. In January I was diagnosed with ANCA Vasculitis and have received 4 infusions of Truxima, injections of Evusheld, and another covid booster. I am tapering prednisone pretty quickly as protocol seems to dictate
I have searched the site for new information but notice that most entries are several years old. In January I was diagnosed with ANCA Vasculitis and have received 4 infusions of Truxima, injections of Evusheld, and another covid booster. I am tapering prednisone pretty quickly as protocol seems to dictate
GinnyMa
in
Vasculitis UK
2 years ago
Curcumin Real Clinical Study, Anti Inflam
Came across this one. I think it's a rare Curc study using real people, vs animal or lab tests. It's looking for benefits in kidney disease. I was looking to find whether Curc might be a negative for kidney but positive implications come up for reasonable doses. https://clinicaltrials.gov/ct2/show
Came across this one. I think it's a rare Curc study using real people, vs animal or lab tests. It's looking for benefits in kidney disease. I was looking to find whether Curc might be a negative for kidney but positive implications come up for reasonable doses. https://clinicaltrials.gov/ct2/show
EPguy
in
MPN Voice
2 years ago
Evusheld not ordered yet by the UK government
The Guardian has run a story today about this, quoting the Astra Zeneca boss, saying that “The UK is probably one of the rare developed countries in the world that has not ordered Evusheld. It’s a sad situation, quite frankly, because people who are immune-compromised are really suffering from the Covid
The Guardian has run a story today about this, quoting the Astra Zeneca boss, saying that “The UK is probably one of the rare developed countries in the world that has not ordered Evusheld. It’s a sad situation, quite frankly, because people who are immune-compromised are really suffering from the Covid
vivdunstan
Volunteer
in
Vasculitis UK
2 years ago
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Chest infection
My Dad has Vasculitis and Stage 5 kidney disease he has been on azathioprine for a number of years which has held his Vasculitis under control. He’s currently in hospital with a chest infection, They stopped his Azathioprine while he was on antibiotics which has now cleared up but his infection markers
My Dad has Vasculitis and Stage 5 kidney disease he has been on azathioprine for a number of years which has held his Vasculitis under control. He’s currently in hospital with a chest infection, They stopped his Azathioprine while he was on antibiotics which has now cleared up but his infection markers
Louloulou40
in
Vasculitis UK
2 years ago
PR3 Anca Vasculitis diagnosed 2020, Had last I fusion until needed November 2021, lung and bowel issues plus rash
Been tapering down on prednisone to 1mg and feet and lower legs have swollen, aches and joint pain, sicky feeling, eyes and nose watery, tardy and foggy head, Blood test came back weak positive C Anca and 4.9 pr3 anca positive has this got anything to do with how I'm feeling.
Been tapering down on prednisone to 1mg and feet and lower legs have swollen, aches and joint pain, sicky feeling, eyes and nose watery, tardy and foggy head, Blood test came back weak positive C Anca and 4.9 pr3 anca positive has this got anything to do with how I'm feeling.
Cookyboy1
in
Vasculitis UK
3 years ago
My journey
The consultant then diagnosed
cerebral
vasculitis
. Eventually I got released home. I started back work on reduced hours in the NHS.
The consultant then diagnosed
cerebral
vasculitis
. Eventually I got released home. I started back work on reduced hours in the NHS.
PhoenixJ75
in
Vasculitis UK
3 years ago
Tingling feet and ANCA
Had GCA in 2015 and on prednisone for 4 years…then no relapse but diagnosed with PMR in Dec. 2021. And now they have changed my diagnose to ANCA vasculitis, not PMR and have been upped to 40 mg of prednisone. I am due to soon start Rituxan. All very new and a very interesting side effect of disease
Had GCA in 2015 and on prednisone for 4 years…then no relapse but diagnosed with PMR in Dec. 2021. And now they have changed my diagnose to ANCA vasculitis, not PMR and have been upped to 40 mg of prednisone. I am due to soon start Rituxan. All very new and a very interesting side effect of disease
GinnyMa
in
Vasculitis UK
3 years ago
This disease
I hate what this disease has done to me, my stroke has changed my life and the
cerebral
vasculitis
. Taking away so much I'll feel like a shadow of former self. So much so I'd wish I'd died when I the stroke.
I hate what this disease has done to me, my stroke has changed my life and the
cerebral
vasculitis
. Taking away so much I'll feel like a shadow of former self. So much so I'd wish I'd died when I the stroke.
PhoenixJ
in
Anxiety and Depression Support
3 years ago
Granulomatosis with polyangiitis and nose bleeds
Hi everyone, I am new to the site so please forgive me if this question has already been asked and answered. I have been suffering from various symptoms for just over a year and was diagnosed with Vasculitis - Granulomatosis with polyangiitis in mid 2021. I am still finding it very hard to come to terms
Hi everyone, I am new to the site so please forgive me if this question has already been asked and answered. I have been suffering from various symptoms for just over a year and was diagnosed with Vasculitis - Granulomatosis with polyangiitis in mid 2021. I am still finding it very hard to come to terms
Wyllow
in
Vasculitis UK
3 years ago
Anyone else stopping RITUXIMAB
Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time) My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines
Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time) My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines
Maverick77
in
LUPUS UK
3 years ago
Rituximab
After the awful problems I had when switched to Azathioprine, which obvs was stopped, today I go for my first Ritubimax infusion. Apparently it takes 6 hours, and a second infusion to be given a fortnight later which will take about 4 hours. Do any of you have any experience of this? What to expect
After the awful problems I had when switched to Azathioprine, which obvs was stopped, today I go for my first Ritubimax infusion. Apparently it takes 6 hours, and a second infusion to be given a fortnight later which will take about 4 hours. Do any of you have any experience of this? What to expect
joanneM200
in
LUPUS UK
3 years ago
Great occupational therapist visit
I have a progressive form of
cerebral
vasculitis
, since 1994 when I was 22. Causing an enormous range of neurological MS-like symptoms.
I have a progressive form of
cerebral
vasculitis
, since 1994 when I was 22. Causing an enormous range of neurological MS-like symptoms.
vivdunstan
Volunteer
in
Vasculitis UK
3 years ago
Heavy legs
I have Urticarial Vasculitis (around 28years) and have for around 6 months have been having cramps in my calves ankles and feet ( and occasionally in other parts of my body ,although they seem to have stopped ) now my legs are feeling heavy and I do get pins and needles in my feet , The cramps do go
I have Urticarial Vasculitis (around 28years) and have for around 6 months have been having cramps in my calves ankles and feet ( and occasionally in other parts of my body ,although they seem to have stopped ) now my legs are feeling heavy and I do get pins and needles in my feet , The cramps do go
jackrussell
in
Vasculitis UK
3 years ago
Diagnoses
I have been unwell for the last 18 months on and off, I have had 3 blood tests that have come back with a positive ANCA result, my GP didn’t tell me for the first 3 months until my second result come back, now I am on a waiting list of approximately 34 weeks to speak to the rheumatology department, any
I have been unwell for the last 18 months on and off, I have had 3 blood tests that have come back with a positive ANCA result, my GP didn’t tell me for the first 3 months until my second result come back, now I am on a waiting list of approximately 34 weeks to speak to the rheumatology department, any
Hazbaz57
in
Vasculitis UK
3 years ago
Is leflunomide causing my chest/heart 'flutters' or might it be a build up of inflammation?
I was diagnosed with PMR in February 2018 and until now my posts have been confined to the PMRGCA forum. I now need advice from Vasculitis UK. I was diagnosed with asymptomatic large vessel vasculitis in September 2020. An ultrasound scan of axillary arteries showed right axillary 1MT 1.8mm and left
I was diagnosed with PMR in February 2018 and until now my posts have been confined to the PMRGCA forum. I now need advice from Vasculitis UK. I was diagnosed with asymptomatic large vessel vasculitis in September 2020. An ultrasound scan of axillary arteries showed right axillary 1MT 1.8mm and left
123-go
in
Vasculitis UK
3 years ago
Working in schools with Vasculitis
Hi I am a teacher who has been recently diagnosed with Vasculitis. I must admit I am really worried about returning to school in September, especially how the COVID infections were increasing before the summer. Are there any other teachers out there with the condition and how are you coping with working
Hi I am a teacher who has been recently diagnosed with Vasculitis. I must admit I am really worried about returning to school in September, especially how the COVID infections were increasing before the summer. Are there any other teachers out there with the condition and how are you coping with working
Dave34
in
Vasculitis UK
3 years ago
New Member
Hi I am new to the forum because I have just been diagnosed with Vasculitis. I have been tested, diagnosed and started treatment all in the matter of 10 days! I can't believe how quickly my life has been turned on its head. I had a rash on my legs which lead to having a kidney biopsy which lead to a
Hi I am new to the forum because I have just been diagnosed with Vasculitis. I have been tested, diagnosed and started treatment all in the matter of 10 days! I can't believe how quickly my life has been turned on its head. I had a rash on my legs which lead to having a kidney biopsy which lead to a
Dave34
in
Vasculitis UK
3 years ago
Following Rituximab, is this expected or is there cause for concern
Hi all, my GPA has flared after a few years of being stable, (damn it, was doing so well). As well as increased anca, I had pain in the joints in my fingers and really bad fatigue. My rheumatologist set up 4 rituximab infusions 1 week apart. By the 3rd infusion I was feeling good, both fatigue and joint
Hi all, my GPA has flared after a few years of being stable, (damn it, was doing so well). As well as increased anca, I had pain in the joints in my fingers and really bad fatigue. My rheumatologist set up 4 rituximab infusions 1 week apart. By the 3rd infusion I was feeling good, both fatigue and joint
stuc
in
Vasculitis UK
3 years ago
Got my private Covid antibody test result
I have primary
cerebral
vasculitis
, since 1994. Note a negative result doesn’t mean there is no protection. An antibody test isn’t necessary, nor would it be right for everyone. There are lower cost private tests out there too. Mine usually costs £69 but I got a slight discount.
I have primary
cerebral
vasculitis
, since 1994. Note a negative result doesn’t mean there is no protection. An antibody test isn’t necessary, nor would it be right for everyone. There are lower cost private tests out there too. Mine usually costs £69 but I got a slight discount.
vivdunstan
Volunteer
in
Vasculitis UK
3 years ago
How quickly can you relapse after rituximab
Hi on rituximab for anca vasculitis. Was told two weeks ago that I was in remission. My breathing is now awful and wheezy and coughing up green gunk. Is it possible to relapse so quickly. It was the 18th march I had my last infusion.
Hi on rituximab for anca vasculitis. Was told two weeks ago that I was in remission. My breathing is now awful and wheezy and coughing up green gunk. Is it possible to relapse so quickly. It was the 18th march I had my last infusion.
Vqueen
in
Vasculitis UK
3 years ago
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