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Urticarial vasculitis
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Is Vasculitis classed as a disability?
I am not looking to claim any sort of benefit but I understand that I can get specialist equipment VAT free if I have a chronic illness (HMRC gives diabetes as an example). With Vasculitis GPA causing shortness of breath and thus giving a lesser ability to walk any great distance I am thinking of getting
I am not looking to claim any sort of benefit but I understand that I can get specialist equipment VAT free if I have a chronic illness (HMRC gives diabetes as an example). With Vasculitis GPA causing shortness of breath and thus giving a lesser ability to walk any great distance I am thinking of getting
PhiltheBear
in
Vasculitis UK
5 years ago
In May 2019 volunteers from Vasculitis UK took part in two separate Vasculitis Medical Education Workshops in Manchester.
Vifor Pharma along with Shanali Perera held an ANCA Vasculitis Resource Evaluation Workshop in Manchester. It was attended by 4 patient volunteers and 1 carer. All aspects of raising awareness of vasculitis were discussed including raising awareness through Art. UKIVAS held their first Vasculitis Education
Vifor Pharma along with Shanali Perera held an ANCA Vasculitis Resource Evaluation Workshop in Manchester. It was attended by 4 patient volunteers and 1 carer. All aspects of raising awareness of vasculitis were discussed including raising awareness through Art. UKIVAS held their first Vasculitis Education
Suzym2u
Vasculitis UK
in
Vasculitis UK
5 years ago
Diet with vasculitis
Hi everyone can anyone suggest a diet I've had double bypass kidneycancer one removed and vasculitis thyroid shot keep trying to lose weight protein diet but still putting weight on thanks off pres now on azathioprine
Hi everyone can anyone suggest a diet I've had double bypass kidneycancer one removed and vasculitis thyroid shot keep trying to lose weight protein diet but still putting weight on thanks off pres now on azathioprine
Glenville
in
Vasculitis UK
5 years ago
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Avascular Necrosis caused by Steroids.
From personal experience I wouldn’t touch steroids with a barge pole. 10 years after being given steroids briefly for an overactive thyroid gland problem, I was diagnosed with Avascular Necrosis and had both my hip bones replaced in 1997 and 1998 respectively. After my first hip replacement I was
From personal experience I wouldn’t touch steroids with a barge pole. 10 years after being given steroids briefly for an overactive thyroid gland problem, I was diagnosed with Avascular Necrosis and had both my hip bones replaced in 1997 and 1998 respectively. After my first hip replacement I was
ripon1756
in
LUPUS UK
5 years ago
Cerebral vasculitis
My brother in law has been diagnosed with cerebral vasculitis in arp’19.Last year he was diagnosed with vasculitis in eyes and he was on steroids for last one year. His steroids dose has been reduced and was now at the minimum level and due to which his vasulitis has repeated and this time it had badly
My brother in law has been diagnosed with cerebral vasculitis in arp’19.Last year he was diagnosed with vasculitis in eyes and he was on steroids for last one year. His steroids dose has been reduced and was now at the minimum level and due to which his vasulitis has repeated and this time it had badly
Ashvini
in
Behçet's UK
5 years ago
Vasculitis in lower legs
Hi all, I’ve had this rash since November last year, started feeling really ill lightheaded nausea found I had a small bleed on back of brain ( nothing to worry about!!!) My legs get worse as the day goes on getting redder a bit swollen and a bit of fluid was told it was Vasculitis Had god knows how
Hi all, I’ve had this rash since November last year, started feeling really ill lightheaded nausea found I had a small bleed on back of brain ( nothing to worry about!!!) My legs get worse as the day goes on getting redder a bit swollen and a bit of fluid was told it was Vasculitis Had god knows how
2stents
in
Vasculitis UK
5 years ago
Vasculitus
I have just started Myfenax 1000mg with 50g Prednisolone & 600mg Pregabin I have vasculitis and Neuropathy and my skin has become very sensitive very itchy
I have just started Myfenax 1000mg with 50g Prednisolone & 600mg Pregabin I have vasculitis and Neuropathy and my skin has become very sensitive very itchy
Trilliano73
in
Vasculitis UK
5 years ago
MPO with impaired kidneys
Hi I was diagnosed with MPO Vasculitis in August 2015 with impaired kidneys Had a course of cyclophosphomide, steroids and now on azathioprine. I'm on remission and reducing steroid 1 mg every month. Of late I have developed pain on my left arm & shoulder blade. Remember having read some body experiencing
Hi I was diagnosed with MPO Vasculitis in August 2015 with impaired kidneys Had a course of cyclophosphomide, steroids and now on azathioprine. I'm on remission and reducing steroid 1 mg every month. Of late I have developed pain on my left arm & shoulder blade. Remember having read some body experiencing
xz3sgn
in
Vasculitis UK
5 years ago
Is vasculitis life threatening?
My husband suffers with osteoporosis and osteoarthritis and this has got worse over the last 3 years such that he has had 2 spinal operations and now uses a manual wheelchair outside of the home. We went abroad just before Xmas and whilst I was sunbathing he was in thermals so I took him to the Dr when
My husband suffers with osteoporosis and osteoarthritis and this has got worse over the last 3 years such that he has had 2 spinal operations and now uses a manual wheelchair outside of the home. We went abroad just before Xmas and whilst I was sunbathing he was in thermals so I took him to the Dr when
Peep3
in
Vasculitis UK
5 years ago
False High ANCA?!
About 18 months ago I had terrible flu like experience with extreme confusion and blood tests 6 weeks later showed high ANCA p type and has been slightly elevated on a few occasions since. Since then I’ve been having issues with sudden breathlessness, chronic chest pain with cough, and black hands. All
About 18 months ago I had terrible flu like experience with extreme confusion and blood tests 6 weeks later showed high ANCA p type and has been slightly elevated on a few occasions since. Since then I’ve been having issues with sudden breathlessness, chronic chest pain with cough, and black hands. All
LeanneN
in
Vasculitis UK
5 years ago
Can rise of P Anca predict relapse in vasculitis?
Please write if you have same experience with relapse of vaaculitis.Did you have any signs before relapse?Rise of ANCA,clinical evidence,biochemistry,Your observation of changes in Your body condition,blood preassure.
Please write if you have same experience with relapse of vaaculitis.Did you have any signs before relapse?Rise of ANCA,clinical evidence,biochemistry,Your observation of changes in Your body condition,blood preassure.
tamidi
in
Vasculitis UK
5 years ago
Vasculitis in legs
Hi all, in a earlier post I mentioned I had vasculitis in my lower legs, now waiting to see a dermatologist!! I was sat in the sun today and my legs became even more red, is this normal ( not sunburn) Also I have been getting a small amount of fluid on my shin, my ankles hurt when I'm walking and the
Hi all, in a earlier post I mentioned I had vasculitis in my lower legs, now waiting to see a dermatologist!! I was sat in the sun today and my legs became even more red, is this normal ( not sunburn) Also I have been getting a small amount of fluid on my shin, my ankles hurt when I'm walking and the
2stents
in
Vasculitis UK
5 years ago
Question about nausea and Vasculitis
Hey everyone! so my dad was diagnosed with ANCA Vasculitis in 2018 and has been struggling with it on and off ever since. He seems to be nauseous A LOT of the time and says he ends up actually throwing up sometimes. He’s had many different kinds of medications so far to see if perhaps the nausea can
Hey everyone! so my dad was diagnosed with ANCA Vasculitis in 2018 and has been struggling with it on and off ever since. He seems to be nauseous A LOT of the time and says he ends up actually throwing up sometimes. He’s had many different kinds of medications so far to see if perhaps the nausea can
sweettea5
in
Vasculitis UK
5 years ago
Waiting on a diagnosis... Looking for advice please
I'm currently waiting on a diagnosis and vasculitis was the only thing my doctor suggested I may have, although she did test my bloodwork for a bunch of different things. Basically this all started last week when I went to the optometrist and found out I have a hemorrhage in my left eye near my blind
I'm currently waiting on a diagnosis and vasculitis was the only thing my doctor suggested I may have, although she did test my bloodwork for a bunch of different things. Basically this all started last week when I went to the optometrist and found out I have a hemorrhage in my left eye near my blind
bobadee
in
Vasculitis UK
5 years ago
Strokes Again!! Update on mine and cerebral vasculitis.
I thought it was time I should give a wee update on how I have managed since my stroke at the end of October and it felt the right time as Katydid has just posted below about the same! I remember telling everyone it was diagnosed almost five weeks after the event, almost five months ago now ,and dismissed
I thought it was time I should give a wee update on how I have managed since my stroke at the end of October and it felt the right time as Katydid has just posted below about the same! I remember telling everyone it was diagnosed almost five weeks after the event, almost five months ago now ,and dismissed
cuttysark
in
LUPUS UK
5 years ago
Any thoughts on Rituximab
Hi My husband who has MCTD for 20 years ( recently diagnosed with discoid lupus) has been offered rituximab. At the time it was offered , he had been recovering from acute liver failure ( hospital says cause unknown), this had limited the choice of medication he was offered. Last week we were told that
Hi My husband who has MCTD for 20 years ( recently diagnosed with discoid lupus) has been offered rituximab. At the time it was offered , he had been recovering from acute liver failure ( hospital says cause unknown), this had limited the choice of medication he was offered. Last week we were told that
Pop007
in
LUPUS UK
5 years ago
My story ... journey to a diagnosis
My problems start in January 2008 following the birth of my first child. Over the next 10 years I suffered from pain in joints, pins and needles in my feet and hands and a skin infection every 6 - 9 months. Each time the GP would give me various diagnoses and prescribe me something to get me through
My problems start in January 2008 following the birth of my first child. Over the next 10 years I suffered from pain in joints, pins and needles in my feet and hands and a skin infection every 6 - 9 months. Each time the GP would give me various diagnoses and prescribe me something to get me through
356bubbles
in
Vasculitis UK
5 years ago
Diagnosed with GPA over 2 yrs ago.
Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners granulomatosis. Changed to azathioprine after 8 months and am now medication free. It's a struggle with the usual aches and pains, mainly in the knee joints but I still walk the dog daily for approx. 1 hr per day
Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners granulomatosis. Changed to azathioprine after 8 months and am now medication free. It's a struggle with the usual aches and pains, mainly in the knee joints but I still walk the dog daily for approx. 1 hr per day
Noza456
in
Vasculitis UK
5 years ago
Trying another tiny steroid drop soon
On Saturday we'll be lowering my daily steroids a bit more, from 7.5mg to 7mg. We're definitely near the limit of how low I can go, and my consultant is being very realistic in expectations. But going to try. Would have done this some months ago, but I knew we had a surprise Swedish wedding trip to go
On Saturday we'll be lowering my daily steroids a bit more, from 7.5mg to 7mg. We're definitely near the limit of how low I can go, and my consultant is being very realistic in expectations. But going to try. Would have done this some months ago, but I knew we had a surprise Swedish wedding trip to go
vivdunstan
Volunteer
in
Vasculitis UK
5 years ago
Infusion
Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?
Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?
Cool_blue
in
Behçet's UK
5 years ago
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