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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
11 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 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.
vivdunstan
Volunteer
in
Vasculitis UK
8 months ago
Vasculitis in the pancreas?
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Sandalsforever
in
Vasculitis UK
1 day ago
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May is Vasculitis Awarenes Month
May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to
May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to
zoe69
Vasculitis UK
in
Vasculitis UK
15 days ago
May - Vasculitis awareness month
May - Day 3 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is an ANCA assosiated vasculitis and can be severe, even fatal if not treated early and correctly. Nothing is more empowering than #patient stories. This is Emma's story. To donate to #VasculitisUK
May - Day 3 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is an ANCA assosiated vasculitis and can be severe, even fatal if not treated early and correctly. Nothing is more empowering than #patient stories. This is Emma's story. To donate to #VasculitisUK
zoe69
Vasculitis UK
in
Vasculitis UK
18 days ago
Vasculitis Awarenes Month
May is vasculitis awareness month. Microscopic Polyangiitis (MPA) is inflammation of the small and sometimes medium sized blood vessels. It usually affects the renal function and/or lungs. Get a glimpse of Gemma's journey with MPA vasculitis. If you would like to donate to Vasculitis UK, please
May is vasculitis awareness month. Microscopic Polyangiitis (MPA) is inflammation of the small and sometimes medium sized blood vessels. It usually affects the renal function and/or lungs. Get a glimpse of Gemma's journey with MPA vasculitis. If you would like to donate to Vasculitis UK, please
zoe69
Vasculitis UK
in
Vasculitis UK
19 days ago
Hip replacement surgery
Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? I'm due for this in a few weeks with a pre op assessment in 2 weeks time. Surgeon has been made aware of Et situation. I just wondered if anyone has encountered any problems or issues, or whether the procedure was straight
Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? I'm due for this in a few weeks with a pre op assessment in 2 weeks time. Surgeon has been made aware of Et situation. I just wondered if anyone has encountered any problems or issues, or whether the procedure was straight
Oscarsboy
in
MPN Voice
1 month ago
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
2 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
2 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
2 months ago
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
3 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
3 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
3 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
3 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
4 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
4 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
5 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
5 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
6 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
6 months ago
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