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Cerebral vasculitis
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Protect-V trial
I have vasculitis GPA and have regular infusions of rituximab which is an immunosuppressant. On a recent trip to Addenbrookes (Cambridge Hospital) to see my consultant they signed me up to take part in the Protect-V clinical trial. An anti covid vaccine. Anyone else here involved in that trial or any
I have vasculitis GPA and have regular infusions of rituximab which is an immunosuppressant. On a recent trip to Addenbrookes (Cambridge Hospital) to see my consultant they signed me up to take part in the Protect-V clinical trial. An anti covid vaccine. Anyone else here involved in that trial or any
Gurberly
in
Vasculitis UK
1 year ago
Relief today!
Over the last two weeks I have undergone 4MRIs 2 CT and aV/Q scan. Then yesterday I saw the third consultant in 3 weeks. I’ve seen rheumatology, gastroenterology and now respiratory. I had a two week referral as I’ve been coughing up blood and other symptoms. Yesterday at the lung clinic the respiratory
Over the last two weeks I have undergone 4MRIs 2 CT and aV/Q scan. Then yesterday I saw the third consultant in 3 weeks. I’ve seen rheumatology, gastroenterology and now respiratory. I had a two week referral as I’ve been coughing up blood and other symptoms. Yesterday at the lung clinic the respiratory
mld78
in
Vasculitis UK
1 year ago
Rituximab questions
Hi everyone, I have been on Methotrexate, Mycophenolate Mofetil, Prednisolone and many others for the past 2 years for Vasculitis GPA. My ANCA level was down to 0 having been >177, over the past 6 months though my ANCA level is 30 and symptoms are coming back, my rheumatologist wants to try me on Rituximab
Hi everyone, I have been on Methotrexate, Mycophenolate Mofetil, Prednisolone and many others for the past 2 years for Vasculitis GPA. My ANCA level was down to 0 having been >177, over the past 6 months though my ANCA level is 30 and symptoms are coming back, my rheumatologist wants to try me on Rituximab
Wyllow
in
Vasculitis UK
1 year ago
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Giving Up a Job due to Health?
Hi All I'm interested to see if anyone has been in this situation and can offer any input. So I've been pretty unwell for some time and had to take alot of time off work on and off. My vasculitis is only one problem but it has deteriorated significantly as a result of me not being able to have my
Hi All I'm interested to see if anyone has been in this situation and can offer any input. So I've been pretty unwell for some time and had to take alot of time off work on and off. My vasculitis is only one problem but it has deteriorated significantly as a result of me not being able to have my
Galaxy2
in
Vasculitis UK
1 year ago
Rituximab
Hi there, I am have just received my second dose of Rituximab after having a
Spinal stroke (T2-4)
. My specialist said the stroke was caused by a flare in my vasculitis, therefore the reason to treat with Rituximab. My question is to patients that have been treated with this medication please
Hi there, I am have just received my second dose of Rituximab after having a
Spinal stroke (T2-4)
. My specialist said the stroke was caused by a flare in my vasculitis, therefore the reason to treat with Rituximab. My question is to patients that have been treated with this medication please
Zuzu798
in
Behçet's UK
1 year ago
Newly diagnosed GPA without renal involvement. Sorry it’s long.
In March I went to a new rheumatologist at a world famous teaching hospital. He is co-director of the vasculitis program and quite expert. It took persistence to get an appointment. My previous rheumatologist diagnosed me with Polymyalgia Rheumatica in 2016. She ordered an ANCA blood test in 2017 because
In March I went to a new rheumatologist at a world famous teaching hospital. He is co-director of the vasculitis program and quite expert. It took persistence to get an appointment. My previous rheumatologist diagnosed me with Polymyalgia Rheumatica in 2016. She ordered an ANCA blood test in 2017 because
SusanEleven
in
Vasculitis UK
1 year ago
rituximab nerves!
so, I have lupus and i'm due to have my first infusion of rituximab in the next month and I am extremely nervous- I'm not keen on this at all and not entirely sure it is necessary, i felt i was doing ok on the mycopehnolate but my dose has been upped and it gives me a terrible stomach- but i will obviously
so, I have lupus and i'm due to have my first infusion of rituximab in the next month and I am extremely nervous- I'm not keen on this at all and not entirely sure it is necessary, i felt i was doing ok on the mycopehnolate but my dose has been upped and it gives me a terrible stomach- but i will obviously
maeows
in
LUPUS UK
1 year ago
ANCA question
I think my GP is suspecting I have vasculitis or lupus. I wrote a really long message but thought I'd keep it succinct.
My question is, do the labs in the UK only screen for MPO & PR3 if the ANCA test was positive?
Thanks
I think my GP is suspecting I have vasculitis or lupus. I wrote a really long message but thought I'd keep it succinct.
My question is, do the labs in the UK only screen for MPO & PR3 if the ANCA test was positive?
Thanks
liquoricet
in
Vasculitis UK
1 year ago
Advice please!
Hi all, hope you are all ok and keeping safe. So, I have recently had my blood results and my consultant rang me as booked to tell me all my bloods are spot on, however my ANCA marker last July was 3.8, in January this year it had risen to 5.4, and in April down to 4.8. So I was a bit put back by that
Hi all, hope you are all ok and keeping safe. So, I have recently had my blood results and my consultant rang me as booked to tell me all my bloods are spot on, however my ANCA marker last July was 3.8, in January this year it had risen to 5.4, and in April down to 4.8. So I was a bit put back by that
Investigator1
in
Vasculitis UK
1 year ago
New to vasculitis
Hi I recently got DX with vasculitis after suffering a terrible skin rash after my 6th covid jab ,I'm still not sure that's the cause but that's what dermatology are telling me . Anyway 4 months on still got outbreaks mainly face ,chest back spots and dark patches around my groin area. I have lost wieght
Hi I recently got DX with vasculitis after suffering a terrible skin rash after my 6th covid jab ,I'm still not sure that's the cause but that's what dermatology are telling me . Anyway 4 months on still got outbreaks mainly face ,chest back spots and dark patches around my groin area. I have lost wieght
cartwheels
in
Vasculitis UK
1 year ago
Low white cells
Hi everyone Hope you're all doing ok. Just wanted to ask if anyone has experienced low white blood cell due to azathioprine. I have sle and have been on these for years. Recently I had bloods done as I was feeling so run down my wcc is 1.5 and neut is 0.75. I'm waiting on a call back from rheumatologist
Hi everyone Hope you're all doing ok. Just wanted to ask if anyone has experienced low white blood cell due to azathioprine. I have sle and have been on these for years. Recently I had bloods done as I was feeling so run down my wcc is 1.5 and neut is 0.75. I'm waiting on a call back from rheumatologist
Lioness42
in
LUPUS UK
1 year ago
Orthodontics Appointment cancelled for the 4th time
Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain seems to be getting worse each day also I have an inguinal hernia on the worst hip side adding insult to injury the pain is becoming unbearable it
Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain seems to be getting worse each day also I have an inguinal hernia on the worst hip side adding insult to injury the pain is becoming unbearable it
Hidden
in
MPN Voice
1 year ago
Vasculitis and rheumatoid arthritis
Hi,Just a quick question, is anybody seen by vasculitis clinic and rheumatology, or just one or the other. I am only seen by rheumatology but at first diagnosis I was seen in the vasculitis clinic . I have poly granulamotis along with rheumatoid arthritis, but I am getting the feeling when I go to
Hi,Just a quick question, is anybody seen by vasculitis clinic and rheumatology, or just one or the other. I am only seen by rheumatology but at first diagnosis I was seen in the vasculitis clinic . I have poly granulamotis along with rheumatoid arthritis, but I am getting the feeling when I go to
tina73
in
Vasculitis UK
1 year ago
Uveitis treatment opinion please
I have been an intermediate uveitis patient ( vasculitis of the eye) for about 18 months now. Have had several steroid implants in the eye and has been on methotexrate injections for 6 months now. But the oedema due to vasculitis is coming back repeatedly. So seems like I have 2 options now in terms
I have been an intermediate uveitis patient ( vasculitis of the eye) for about 18 months now. Have had several steroid implants in the eye and has been on methotexrate injections for 6 months now. But the oedema due to vasculitis is coming back repeatedly. So seems like I have 2 options now in terms
Udupik
in
Vasculitis UK
2 years ago
ET and cerebral vasculitis
Does anyone else on here have both these conditions
Does anyone else on here have both these conditions
Ljohn456
in
MPN Voice
2 years ago
tapering off azathioprine
Hi all, Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis. Initially had cyclophosphamide infusions and have been maintained on azathioprine
Hi all, Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis. Initially had cyclophosphamide infusions and have been maintained on azathioprine
stuc
in
Vasculitis UK
2 years ago
Rituximab
Hi All, Happy New year to yin and aww. I'm scheduled for my first Rituximab infusion this week and getting cold feet ( second thoughts). Any advise and reassurance would be a great help Many thanks in advance. Kind Regards SfS
Hi All, Happy New year to yin and aww. I'm scheduled for my first Rituximab infusion this week and getting cold feet ( second thoughts). Any advise and reassurance would be a great help Many thanks in advance. Kind Regards SfS
sorefeetsoldier
in
Vasculitis UK
2 years ago
Re Scottish autumn 2022 vaccine appointments
Sadly I have 3 month long devastating neurological flares after every Covid vaccine (my
cerebral
vasculitis
reacts badly). This will be my 6th Covid vaccine. But it could save my life, and I know from private testing that I am finally generating good antibodies.
Sadly I have 3 month long devastating neurological flares after every Covid vaccine (my
cerebral
vasculitis
reacts badly). This will be my 6th Covid vaccine. But it could save my life, and I know from private testing that I am finally generating good antibodies.
vivdunstan
Volunteer
in
Vasculitis UK
2 years ago
stomach
Thankyou for your replies. I have had a camera down into my stomach before I was diagnosed . It showed lesions , which must have been connected with my vasculitis. The only thing to have helped is when I have an infusion of rituximab. Unfortunately it does not last the six months . Most days I can eat
Thankyou for your replies. I have had a camera down into my stomach before I was diagnosed . It showed lesions , which must have been connected with my vasculitis. The only thing to have helped is when I have an infusion of rituximab. Unfortunately it does not last the six months . Most days I can eat
artists
in
Vasculitis UK
2 years ago
I’m Coco & today Joolsg suggested I post re upcoming NHS Iron Infusion
+ the usual secondaries inc Sjogrens, peripheral & small vessel
vasculitis
etc) + Primary Immunodeficiency Disease + spina bifida occulta + hEDS (especially severely affecting whole spine: facet joint syndrome responded pos to various body therapies + decades of periodic bilateral cervical & lumbar
+ the usual secondaries inc Sjogrens, peripheral & small vessel
vasculitis
etc) + Primary Immunodeficiency Disease + spina bifida occulta + hEDS (especially severely affecting whole spine: facet joint syndrome responded pos to various body therapies + decades of periodic bilateral cervical & lumbar
Barnclown
in
Restless Legs Syndrome
6 months ago
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