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skin tears
I have vasculitis, MPA, microscopic Polyangiitis, and have been on prednisone for 3 years. Currently I am on 2.5 mg. Recently I developed several skin tears on my legs. Saw my rheumatologist yesterday and he told me to stop the prednisone. Suggestions please…can I just stop the 2.5 or should I taper
I have vasculitis, MPA, microscopic Polyangiitis, and have been on prednisone for 3 years. Currently I am on 2.5 mg. Recently I developed several skin tears on my legs. Saw my rheumatologist yesterday and he told me to stop the prednisone. Suggestions please…can I just stop the 2.5 or should I taper
GinnyMa
in
Vasculitis UK
6 months ago
A questionnaire for those with ANCA associated vasculitis and renal involvement in the UK
For those with ANCA associated vasculitis and renal involvement in the UK Clinicians are worried about overtreating patients and adding side effects of long term use of immunosuppressants to the ilness burden. Here's a very short questionnaire aims to find out if patients would consider participating
For those with ANCA associated vasculitis and renal involvement in the UK Clinicians are worried about overtreating patients and adding side effects of long term use of immunosuppressants to the ilness burden. Here's a very short questionnaire aims to find out if patients would consider participating
zoe69
Vasculitis UK
in
Vasculitis UK
7 months ago
Medication for Vasculitis
Hi. I have had Vasculitis for four years and my current medication is Prednisolone 5.5 mg daily and Methotextrate Injection 25mg weekly. Following the onset of my illness I now have to use a wheeled walker to get around and can no longer drive a motor vehicle.
Hi. I have had Vasculitis for four years and my current medication is Prednisolone 5.5 mg daily and Methotextrate Injection 25mg weekly. Following the onset of my illness I now have to use a wheeled walker to get around and can no longer drive a motor vehicle.
oscar294
in
Vasculitis UK
7 months ago
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Selbourn
Two weeks ago I was given, what the Rummy called a maintenance dose, of Rituximab and of course 125mg of prednisone first. All good apart from little sleep after the Pred! But now OK but very tired all the time could be the ANCA or the meds who knows. I am also having very vivid bad dreams, is anyone
Two weeks ago I was given, what the Rummy called a maintenance dose, of Rituximab and of course 125mg of prednisone first. All good apart from little sleep after the Pred! But now OK but very tired all the time could be the ANCA or the meds who knows. I am also having very vivid bad dreams, is anyone
Selbourn
in
Vasculitis UK
7 months ago
Patient awareness evening
Members of Renal team at Preston Royal are running an patient awareness evening March 12 at Lancaster University Innovation Centre Living with vasculitis is challenging. Join our event for talks by patients and doctors covering various aspects of vasculitis and its management. Connect with others,
Members of Renal team at Preston Royal are running an patient awareness evening March 12 at Lancaster University Innovation Centre Living with vasculitis is challenging. Join our event for talks by patients and doctors covering various aspects of vasculitis and its management. Connect with others,
zoe69
Vasculitis UK
in
Vasculitis UK
7 months ago
Imperial College Help please
Hi, further to my last post - thank you all so much - my GP and Renal Consultant are in agreement that I see a rheumatologist as well as continuing to see my renal Consultant. A few people and Vasculitis UK recommended Imperial College as I believe they have a Vasculitis Centre there? I think I've had
Hi, further to my last post - thank you all so much - my GP and Renal Consultant are in agreement that I see a rheumatologist as well as continuing to see my renal Consultant. A few people and Vasculitis UK recommended Imperial College as I believe they have a Vasculitis Centre there? I think I've had
Daisyboodle
in
Vasculitis UK
8 months ago
Can azathioprine cause chest pains?
Hi, I have been on azathioprine tablets mostly 75mg to 100mg for my Lupus for approximately 20 years. Have been experiencing chest pains on my left side especially after excretion. I had various tests and scans but they are all negative. I had Covid last September and had to stop taking the azathioprine
Hi, I have been on azathioprine tablets mostly 75mg to 100mg for my Lupus for approximately 20 years. Have been experiencing chest pains on my left side especially after excretion. I had various tests and scans but they are all negative. I had Covid last September and had to stop taking the azathioprine
JanJan63
in
LUPUS UK
8 months ago
Rituximab experience?
Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more
Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more
Kafkaontheshore
in
Vasculitis UK
8 months ago
Kidney biopsy confirms active GPA
Hi, Thought I'd update what has happened since my last post. I have seen my rheumatologist twice now, given pred and was put forward for rituximab. Due to the blood and protein in my pee I was referred to renal and had a kidney biopsy on Wednesday of this week. It has been confirmed that my vasculitis
Hi, Thought I'd update what has happened since my last post. I have seen my rheumatologist twice now, given pred and was put forward for rituximab. Due to the blood and protein in my pee I was referred to renal and had a kidney biopsy on Wednesday of this week. It has been confirmed that my vasculitis
lollypocket
in
Vasculitis UK
8 months ago
help with the mental health side of vasculitis
hello all, I’ve just been recently diagnosed with suspected vasculitis. Waiting on skin biopsy results to determine which kind. Spent 5 days in hospital due not being able to walk from how swollen my legs and feet were plus covered all over with the typical vasculitis looking rash. Released from hospital
hello all, I’ve just been recently diagnosed with suspected vasculitis. Waiting on skin biopsy results to determine which kind. Spent 5 days in hospital due not being able to walk from how swollen my legs and feet were plus covered all over with the typical vasculitis looking rash. Released from hospital
DC04HM
in
Vasculitis UK
9 months ago
CRP Rise
Stopped pred in July this year & been fine since. Had bloods November & was told although bloods look good my ANCA has gone up. To be on safe side I am now being given rutuximab as maintenance once a year. Have had a lingering cold for a few weeks now & not felt my greatest had bloods before my infusion
Stopped pred in July this year & been fine since. Had bloods November & was told although bloods look good my ANCA has gone up. To be on safe side I am now being given rutuximab as maintenance once a year. Have had a lingering cold for a few weeks now & not felt my greatest had bloods before my infusion
juli-pa
in
Vasculitis UK
9 months ago
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
10 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
10 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
11 months ago
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
11 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
1 year 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
1 year 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
1 year 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
1 year 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
1 year ago
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