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Experiences with
Urticarial vasculitis
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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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Getting a diagnosis
Hi All, I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the
Hi All, I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the
Milo00
in
Vasculitis UK
5 years ago
1st dose of Rituximab
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little tired and as my line manager just refuses to listen properly and understand what exactly is going on with me and the fact he kept asking me if I'll definitely be
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little tired and as my line manager just refuses to listen properly and understand what exactly is going on with me and the fact he kept asking me if I'll definitely be
Hidden
in
LUPUS UK
5 years ago
I AM ANGRY WITH YOU MY BODY (coping with Lupus)
I thought eczema was enough, but I was wrong, There is
urticarial
vasculitis
! That one is incredible in pain and skin rashes – wheals as they are called, it gives the skin a decorative feature which leaves me ashamed to face the world, What can I say I have it all!
I thought eczema was enough, but I was wrong, There is
urticarial
vasculitis
! That one is incredible in pain and skin rashes – wheals as they are called, it gives the skin a decorative feature which leaves me ashamed to face the world, What can I say I have it all!
Pipido36
in
LUPUS UK
5 years ago
cyclophosphamide infusion - side effects / experiences ?
Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the infusion ? Dizziness, fatigue, confusion, sleepless nights, weak legs... ? Do I need to be prepared to be bed bound for the next couple of days ?
Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the infusion ? Dizziness, fatigue, confusion, sleepless nights, weak legs... ? Do I need to be prepared to be bed bound for the next couple of days ?
Hika
in
LUPUS UK
6 years ago
Is hydroxychloroquine working?
Hello, I've been on hydroxychloroquine for almost 6 months for
urticarial
vasculitis
, although on a full dose of 400mg/day for only about 3 1/2 months, and I have yet to feel any improvement.
Hello, I've been on hydroxychloroquine for almost 6 months for
urticarial
vasculitis
, although on a full dose of 400mg/day for only about 3 1/2 months, and I have yet to feel any improvement.
phoebe-18
in
Vasculitis UK
6 years ago
Confused!
Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis. I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets
Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis. I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets
shanahamza
in
Vasculitis UK
6 years ago
Advice please
Hi, I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this
Hi, I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this
Georgie-girl
in
Vasculitis UK
6 years ago
P anca positive with mpo negative
Hi, I need some help and kind words as I’m losing my mental stability. I had tender spots on my left arm and hand with mild kind of pain for Six months off and on. Quite manageable. But I was just curious and asked my family doctor. She jumped the gun and got me anca test done. It came out positive P
Hi, I need some help and kind words as I’m losing my mental stability. I had tender spots on my left arm and hand with mild kind of pain for Six months off and on. Quite manageable. But I was just curious and asked my family doctor. She jumped the gun and got me anca test done. It came out positive P
Treadmills
in
Vasculitis UK
6 years ago
Study suggests Azathioprine may increase risk of relapse in some AAV patients.
Has anyone else read this study that says 1 in 10 AAV patients are hypersensitive to Azathioprine, which manifests as whole body inflammation, joint pain, and general feeling of malaise, which may increase the risk of relapse. I came off Azathioprine because it was wiping out my white blood cells and
Has anyone else read this study that says 1 in 10 AAV patients are hypersensitive to Azathioprine, which manifests as whole body inflammation, joint pain, and general feeling of malaise, which may increase the risk of relapse. I came off Azathioprine because it was wiping out my white blood cells and
Slem2
in
Vasculitis UK
6 years ago
EMG Test?
Hi All, I saw my vasculitis consultant today who discovered that the tops of my hands and feet don't seem to be quite as sensitive as they perhaps should be and has referred me for an EMG test and I was wondering if any of you have had one before and what I should expect? He said this might involve some
Hi All, I saw my vasculitis consultant today who discovered that the tops of my hands and feet don't seem to be quite as sensitive as they perhaps should be and has referred me for an EMG test and I was wondering if any of you have had one before and what I should expect? He said this might involve some
citygirl1234
in
Vasculitis UK
6 years ago
Can ANCA INDUCED VASCULITIS CAUSE EAR PROBLEMS
I was recently diagnosed as having this condition and today my left ear started to feel like it was closing up on the inside as it heated up and began to get swollen and since then it hasn't gone away and the pain in my ear is almost unbearable if any one has anything on this please share thank tou
I was recently diagnosed as having this condition and today my left ear started to feel like it was closing up on the inside as it heated up and began to get swollen and since then it hasn't gone away and the pain in my ear is almost unbearable if any one has anything on this please share thank tou
brnhoff
in
Vasculitis UK
6 years ago
Sever attack today from UV😔
I have tried to read as many posts as possible and I’m very saddened to see so many of you suffering from this😔 My father was diagnosed with Hypocomplementemic
Urticarial
Vasculitis
(HUV) 2 months ago.
I have tried to read as many posts as possible and I’m very saddened to see so many of you suffering from this😔 My father was diagnosed with Hypocomplementemic
Urticarial
Vasculitis
(HUV) 2 months ago.
Ledi
in
Vasculitis UK
6 years ago
Finally a diagnosis we think
I recently went for a follow up with my neurologist. I think the last time I posted I had just been diagnosed with RRMS. After further testing and another doctor I think we finally have a diagnosis. I saw a new doc yes another specialist this time a neroimmunologist. He saw me at the request of my
I recently went for a follow up with my neurologist. I think the last time I posted I had just been diagnosed with RRMS. After further testing and another doctor I think we finally have a diagnosis. I saw a new doc yes another specialist this time a neroimmunologist. He saw me at the request of my
I814u24u
in
LUPUS UK
6 years ago
Coping with a vasculitis relapse
I wanted to write a bit about coping with a vasculitis disease relapse. This is prompted by a post earlier today in the CNS/cerebral vasculitis Facebook group. I’ve dealt with this myself. Fell ill in 1994 aged 22, diagnosed with cerebral vasculitis in 1997. Stabilised with initial treatment. Then relapsed
I wanted to write a bit about coping with a vasculitis disease relapse. This is prompted by a post earlier today in the CNS/cerebral vasculitis Facebook group. I’ve dealt with this myself. Fell ill in 1994 aged 22, diagnosed with cerebral vasculitis in 1997. Stabilised with initial treatment. Then relapsed
vivdunstan
Volunteer
in
Vasculitis UK
6 years ago
Feeling sore on hydroxychloroquine
Hello, I’ve been on a reduced dose of hydroxy for
urticarial
vasculitis
for a couple of months and am working up to a full dose. However I’ve started to feel really sore under the skin and have a throbbing head and a sore stomach. It just generally doesn’t make me feel good and a bit tired.
Hello, I’ve been on a reduced dose of hydroxy for
urticarial
vasculitis
for a couple of months and am working up to a full dose. However I’ve started to feel really sore under the skin and have a throbbing head and a sore stomach. It just generally doesn’t make me feel good and a bit tired.
phoebe-18
in
Vasculitis UK
6 years ago
Eye issues
Hi. My eye sight has been coming and going but settled on worse than my normal. My opthmalogist ran me through all of the normal tests for Behcet’s. My retinas are good. My eyes are healthy. He’s concerned it’s vasculitis of optic nerves. In addition I’ve had a whole bunch of other neuro issues. My neurologist
Hi. My eye sight has been coming and going but settled on worse than my normal. My opthmalogist ran me through all of the normal tests for Behcet’s. My retinas are good. My eyes are healthy. He’s concerned it’s vasculitis of optic nerves. In addition I’ve had a whole bunch of other neuro issues. My neurologist
Lovingdragonflies
in
Behçet's UK
6 years ago
Cns vasculitis /ritmixuhib
Hi. I was diagnosed with cns vasculitis in 2015 after I had at least 2 strokes, I was then took to Walton after Dr Holt took on my case. I was put on steroids and methotrexate but did not tolerate it very well and I had a flare up approx a year later which resulted in my vision going. I then had 6 pulses
Hi. I was diagnosed with cns vasculitis in 2015 after I had at least 2 strokes, I was then took to Walton after Dr Holt took on my case. I was put on steroids and methotrexate but did not tolerate it very well and I had a flare up approx a year later which resulted in my vision going. I then had 6 pulses
arny12
in
Vasculitis UK
6 years ago
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