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Urticarial vasculitis
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Recurring high temperatures?
Does anyone else get frequent high temperatures? It feels like every other day atleast my temperatures hits 38 or above and palpitations have also returned. GPA current treatment rituximab azathioprine and prednisolone
Does anyone else get frequent high temperatures? It feels like every other day atleast my temperatures hits 38 or above and palpitations have also returned. GPA current treatment rituximab azathioprine and prednisolone
Vqueen
in
Vasculitis UK
7 months ago
UKIVAS Vasculitis Educational Course - Manchester November 2023
The course was attended by around 70 attendees including junior doctors, registrars and specialist nurses. All thanks to Dr Nina Brown and her team in organising the delivery of this highly regarded annual event which included expert presentations and intensive interactive sessions. Programme was extensive
The course was attended by around 70 attendees including junior doctors, registrars and specialist nurses. All thanks to Dr Nina Brown and her team in organising the delivery of this highly regarded annual event which included expert presentations and intensive interactive sessions. Programme was extensive
Suzi70
Administrator
in
Vasculitis UK
7 months ago
NHS App
Currently tapering down on meds. On RTX infusion , Methotrexate and Prednisolone. There is the need to monitor bloods and every three months get a ANCA reading. Thought I would look on the NHS App for results, but none are visible. On call to get the results, queried and was told its political,
Currently tapering down on meds. On RTX infusion , Methotrexate and Prednisolone. There is the need to monitor bloods and every three months get a ANCA reading. Thought I would look on the NHS App for results, but none are visible. On call to get the results, queried and was told its political,
Bailey59
in
Vasculitis UK
8 months ago
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Hi everyone
My name is Dave and I was diagnosed with MPA Vasculitis around the end of September. I had been having fevers and night sweats that would come and go most days for approx 6 months. Also aching legs and tingly feet. GP had no luck finding the cause for about 3 or 4 months. Then my wife insisted I should
My name is Dave and I was diagnosed with MPA Vasculitis around the end of September. I had been having fevers and night sweats that would come and go most days for approx 6 months. Also aching legs and tingly feet. GP had no luck finding the cause for about 3 or 4 months. Then my wife insisted I should
Reggie999
in
Vasculitis UK
8 months ago
advice
I have been told I have Vasculitis not sure what type. Hospital sent for me as they were worried about my kidneys. After spending a worrying night in hospital I was told after a Anca blood test it was found it was only mild so was not put on steroids. Told just need routine blood test at GP surgery.
I have been told I have Vasculitis not sure what type. Hospital sent for me as they were worried about my kidneys. After spending a worrying night in hospital I was told after a Anca blood test it was found it was only mild so was not put on steroids. Told just need routine blood test at GP surgery.
Charliedo
in
Vasculitis UK
8 months ago
anca vasculitis
Hi I have had my first dose of rituxaban for my vasculitis which has caused stage 5 kidney disease. the only side effect I have developed is a swollen right foot. anyone else had this or is it nothing to do with the infusion?
Hi I have had my first dose of rituxaban for my vasculitis which has caused stage 5 kidney disease. the only side effect I have developed is a swollen right foot. anyone else had this or is it nothing to do with the infusion?
eyeBRing
in
Vasculitis UK
8 months ago
Thank you and update 🙂
Just to say thank you to everyone who answered my multiple post earlier this year and in the summer. I’ve been taking Cellcept for 3 months now with no serious side effects and think I’m seeing benefits now. Hardly any pain which is something I never imagined saying!! Having been up and down trying
Just to say thank you to everyone who answered my multiple post earlier this year and in the summer. I’ve been taking Cellcept for 3 months now with no serious side effects and think I’m seeing benefits now. Hardly any pain which is something I never imagined saying!! Having been up and down trying
Beau2016
in
LUPUS UK
9 months ago
Life After Rituximab - Is that it?
So that time has come when I am having my last Rituximab infusion on the 22nd November, it’s been 3 years on the treatment and my Consultant has told me that’s the max. My ANCA marker is low but what happens next? I have a Consultation with my Consultant on the 20th October and of course I will ask her
So that time has come when I am having my last Rituximab infusion on the 22nd November, it’s been 3 years on the treatment and my Consultant has told me that’s the max. My ANCA marker is low but what happens next? I have a Consultation with my Consultant on the 20th October and of course I will ask her
Investigator1
in
Vasculitis UK
9 months ago
”Progressive”
I have a progressive form of cerebral vasculitis, though am doing good to still be here after 29 years! It started in 1994 when I was just 22. Hugely neurologically disabling, and progressive, despite masses of treatment thrown at it. So it was a shock last week to get a call for jury duty. I am mostly
I have a progressive form of cerebral vasculitis, though am doing good to still be here after 29 years! It started in 1994 when I was just 22. Hugely neurologically disabling, and progressive, despite masses of treatment thrown at it. So it was a shock last week to get a call for jury duty. I am mostly
vivdunstan
Volunteer
in
Vasculitis UK
9 months ago
Rituximab doses
Hi All Hope everyone is ok. This a question for anyone on rituximab, I’m really interested in the dose you receive . I’ve been having rituximab for years, sometimes over 4 weeks a time sometimes at 2. I don’t react very well on the day so have to have the infusions very slowly . I’ve also have had
Hi All Hope everyone is ok. This a question for anyone on rituximab, I’m really interested in the dose you receive . I’ve been having rituximab for years, sometimes over 4 weeks a time sometimes at 2. I don’t react very well on the day so have to have the infusions very slowly . I’ve also have had
Galaxy2
in
Vasculitis UK
9 months ago
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
10 months 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
11 months 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
rash vasculitis
I have a diagnosis of cerebral vasculitis from around 16 years ago. Lately I have noticed raised pimples on my legs. Any idea ? Does anyone else have experience of this ? many thanks
I have a diagnosis of cerebral vasculitis from around 16 years ago. Lately I have noticed raised pimples on my legs. Any idea ? Does anyone else have experience of this ? many thanks
blackgolf
in
Vasculitis UK
1 year ago
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
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