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Urticarial vasculitis
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Update on severe skin lesions
Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as
urticarial
vasculitis
but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra.
Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as
urticarial
vasculitis
but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra.
Charkha
in
PMRGCAuk
6 months ago
Medication Change mid-Induction
Hello, I have renal limited vasculitis and am wondering if anyone has experience with a switch from Rituximab to Cyclophosphamide after 3 months of initial induction therapy? My first treatment that started almost 3 months ago was Rituximab with Prednisone. At first things were going well with eGFR
Hello, I have renal limited vasculitis and am wondering if anyone has experience with a switch from Rituximab to Cyclophosphamide after 3 months of initial induction therapy? My first treatment that started almost 3 months ago was Rituximab with Prednisone. At first things were going well with eGFR
Support_helps
in
Vasculitis UK
5 days ago
Anca vasculitis
I have had this illness about seven years now and am not having infusions now though I do have an injection of methotrexate every week. I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis
I have had this illness about seven years now and am not having infusions now though I do have an injection of methotrexate every week. I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis
Westley
in
Vasculitis UK
10 days ago
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Vasculitis (especially CNS/cerebral) and incontinence
I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA. But vasculitis medics frequently under recognise incontinence
I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA. But vasculitis medics frequently under recognise incontinence
vivdunstan
Volunteer
in
Vasculitis UK
2 months ago
May - Vasculitis Awareness Month
May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com
May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com
zoe69
Vasculitis UK
in
Vasculitis UK
2 months ago
May- Vasculitis Awareness Month
May - Day 28 Vasculitis Awareness Month HUV is a more severe type of vasculitis and almost always affects females. Vasculitis is a challenging illness to live with: ''Living with vasculitis is a hard task with a lot of ups and downs, and the future feels quite frightening. Now, six years on, I have
May - Day 28 Vasculitis Awareness Month HUV is a more severe type of vasculitis and almost always affects females. Vasculitis is a challenging illness to live with: ''Living with vasculitis is a hard task with a lot of ups and downs, and the future feels quite frightening. Now, six years on, I have
zoe69
Vasculitis UK
in
Vasculitis UK
2 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
2 months ago
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
2 months 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
3 months 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
3 months 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
3 months 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
4 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
4 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
4 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
5 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
5 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
5 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
5 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
6 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
6 months ago
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