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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
6 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
7 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
7 months ago
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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
7 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
8 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
8 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
8 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
10 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
10 months 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
11 months 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
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
1 year ago
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