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Urticarial vasculitis
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My mum has just been told she has vasculitis and it's definitely affected her brain! She also has temple arthritis and has been on steroids
For over a year and eAch time they try to reduce it the inflammation gets worse in her head? She is now having more tests done and is on another medication along side the steriods, has been told to higher the does of new tablets to 2 a day but bloods have shown inflammation has still risen? She also
For over a year and eAch time they try to reduce it the inflammation gets worse in her head? She is now having more tests done and is on another medication along side the steriods, has been told to higher the does of new tablets to 2 a day but bloods have shown inflammation has still risen? She also
Kelly1987
in
Vasculitis UK
10 years ago
How long can a vasculitis skin rash take to go away?
My mom is suffering from something, doctors don't know what it is yet. Still doing lots of tests. Doctors think it is vasculitis. She has a skin rash started out red bumps all over skin except on elbows and certain parts. Then bad back pain, and lung dry cough. Doctors put her on prednison for 5 days
My mom is suffering from something, doctors don't know what it is yet. Still doing lots of tests. Doctors think it is vasculitis. She has a skin rash started out red bumps all over skin except on elbows and certain parts. Then bad back pain, and lung dry cough. Doctors put her on prednison for 5 days
pepsi4814
in
Vasculitis UK
10 years ago
What to expect??
Hi, may ramble on a bit but please bear with me. my mum was diagnosed with wegeners vasculitis in November 2013 following a spell of what the doctors thought was flu?! she then had a mild heart attack caused by the vasculitis and was in hospital until a week before xmas. she has had two infusions of
Hi, may ramble on a bit but please bear with me. my mum was diagnosed with wegeners vasculitis in November 2013 following a spell of what the doctors thought was flu?! she then had a mild heart attack caused by the vasculitis and was in hospital until a week before xmas. she has had two infusions of
nadz84
in
Vasculitis UK
10 years ago
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Need advise :/ any info on cerebral vasculitis??
I took a dizzy head in work on wednesday and took a tingling sensation down my right hand side of my body, went to my doctor n was then sent to hospital for a ct scan it came back clear now I am waiting for a mri scan to see if I have thos cerebral vasculitis anybody any info??
I took a dizzy head in work on wednesday and took a tingling sensation down my right hand side of my body, went to my doctor n was then sent to hospital for a ct scan it came back clear now I am waiting for a mri scan to see if I have thos cerebral vasculitis anybody any info??
irishgirl13
in
LUPUS UK
10 years ago
Ongoing Treatment
Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some
Popped in to see my rheumy today, who is happy that the current cyclophosphamide infusion regime has me under control. Bloods good with symptoms now only grumbling sporadically, and confined to extremities (occasional night sweats, joint aches, swollen legs, peripheral nerve cramps). Have had some
Wellsie
in
Vasculitis UK
10 years ago
HELP!!!Does anyone have neuromyotonia/peripheral nerve hyperexcitability as well as me?
I can't seem to find anyone or any help groups for people suffering with this immune disease, I also have clinically possible myasthenia gravis, severe fibro, loss of vision (6/60 double all the time) arthritis,
urticarial
vasculitis
! Need help in finding someone/group like FibroAction?
I can't seem to find anyone or any help groups for people suffering with this immune disease, I also have clinically possible myasthenia gravis, severe fibro, loss of vision (6/60 double all the time) arthritis,
urticarial
vasculitis
! Need help in finding someone/group like FibroAction?
Raeben98
in
Fibromyalgia Action UK
11 years ago
What next - Cerebral Vasculitis
Hi everyone.. Just an update on my dad (previous post of 71 and just diagnosed with possible cerebral vasculitis) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks. Diagnosis confirmed, started IV
Hi everyone.. Just an update on my dad (previous post of 71 and just diagnosed with possible cerebral vasculitis) finally, after 6 weeks in Pembury, who were pretty useless, my father moved to Kings yesterday. More has happened in 24 hrs than in the previous 6 weeks. Diagnosis confirmed, started IV
SteveJarvis
in
Vasculitis UK
11 years ago
negative results for inflammation on blood tests
I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does
I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does
braincurdle
in
Vasculitis UK
11 years ago
"Together we are stronger" Please consider becoming a member of Vasculitis UK
Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession
Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
throat problem
I have
Urticarial
Vasculitis
,and although I have been free of symptoms for 22weeks now, I have for the last 6 weeks had a dry hot throat, I haven,t got or had a cold, but I keep losing my voice,and I don,t understand why it,s gone on for so long.
I have
Urticarial
Vasculitis
,and although I have been free of symptoms for 22weeks now, I have for the last 6 weeks had a dry hot throat, I haven,t got or had a cold, but I keep losing my voice,and I don,t understand why it,s gone on for so long.
jackrussell
in
Vasculitis UK
11 years ago
Recently diagnosed with Leukocytoclastic vasculitis via skin biopsy had 1st meeting with dermatologist who has now taken bloods to see if i
am ANCA positive or negative, then will use those results to determine any treatment i might have, also commented my R factor was raised from other bloods, am i right in thinking if it's positive it means i have something else going on too & if negative it's just skin affected?
am ANCA positive or negative, then will use those results to determine any treatment i might have, also commented my R factor was raised from other bloods, am i right in thinking if it's positive it means i have something else going on too & if negative it's just skin affected?
nesbitt
in
Vasculitis UK
11 years ago
My Father of 71 just been advised he may have cerebral vasculitis. Shell shocked and unsure what to expect
10 weeks ago my father was bright, intelligent, engaging and fairly fit. Then 5 weeks of double/blurred vision, weight loss, confusion. Finally admitted to Pembury Tunbridge Wells A&E 5 weeks ago. Put onto a Demetria ward, and seemly little urgency in resolving and very poor communication. Finally saw
10 weeks ago my father was bright, intelligent, engaging and fairly fit. Then 5 weeks of double/blurred vision, weight loss, confusion. Finally admitted to Pembury Tunbridge Wells A&E 5 weeks ago. Put onto a Demetria ward, and seemly little urgency in resolving and very poor communication. Finally saw
SteveJarvis
in
Vasculitis UK
11 years ago
Coffee and Cake Morning and a Raffle for Vasculitis UK The Pines Surgery, in Kingsthorpe Northampton, is holding a Christmas Hamper raffle
The Pines Surgery, in Kingsthorpe Northampton, is holding a Christmas Hamper raffle to be drawn before Christmas. It is also a chance to win a Winston the Vasculitis bear. They are also holding a Coffee and Cake Morning on the 13th December and all proceeds will be added to the raffle total. All proceeds
The Pines Surgery, in Kingsthorpe Northampton, is holding a Christmas Hamper raffle to be drawn before Christmas. It is also a chance to win a Winston the Vasculitis bear. They are also holding a Coffee and Cake Morning on the 13th December and all proceeds will be added to the raffle total. All proceeds
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
Does anybody follow a healthy eating plan or know of diets which can help this condition. I have been diagnosed and being treated for WG.
I am taking 75mg of prednisone daily and have had my first cyclophosphamide a week ago. I have noticed some foods are not so appetising any more and wondered if there is a tried and tested diet. I have no allergies or diet requirements. Thanks.
I am taking 75mg of prednisone daily and have had my first cyclophosphamide a week ago. I have noticed some foods are not so appetising any more and wondered if there is a tried and tested diet. I have no allergies or diet requirements. Thanks.
Hidden
in
Vasculitis UK
11 years ago
Kidneys leaking protein
My daughter was diagnosed with wegeners granulomatosis in August has just 5 out of to be 9 doses of cyclophosphamide along with steroids. Her kidneys are leaking protein due to the damage done to them from disease - docs have prescribed ramipril to reduce leak of protein to urine. Can somebody help
My daughter was diagnosed with wegeners granulomatosis in August has just 5 out of to be 9 doses of cyclophosphamide along with steroids. Her kidneys are leaking protein due to the damage done to them from disease - docs have prescribed ramipril to reduce leak of protein to urine. Can somebody help
Bailey24
in
Vasculitis UK
11 years ago
Returning symptoms
My initial dx was GCA. The it was unspecified vasculitis, then it was more likely a lupus/ vasculitis overlap. Last was it is autoimmune but don't know what! So they took me off Methotrixate to see who I faired. My eyes sight is worse and had this confirmed with eye test, my temple pain along with jaw
My initial dx was GCA. The it was unspecified vasculitis, then it was more likely a lupus/ vasculitis overlap. Last was it is autoimmune but don't know what! So they took me off Methotrixate to see who I faired. My eyes sight is worse and had this confirmed with eye test, my temple pain along with jaw
CathT
in
Vasculitis UK
11 years ago
Back on MMF 500 mg
After my 8th relapse of Wegeners, my Doctor put me on Ristova again for 6th time, 500 mg, four infusions. And with that he started MMF 500, initially twice daily. When from 1st Nov 2013 he started four daily, I was in terribly state. So he asked me to stop. Later from last five days he asked me to take
After my 8th relapse of Wegeners, my Doctor put me on Ristova again for 6th time, 500 mg, four infusions. And with that he started MMF 500, initially twice daily. When from 1st Nov 2013 he started four daily, I was in terribly state. So he asked me to stop. Later from last five days he asked me to take
amita_valmiki
in
LUPUS UK
11 years ago
Cerebral vasculitis
The experts think i have this as i have lesions on my brain, but they have done MRI recently and no new damage but i still have lots of neurological symptoms. they have done bloods but they cannot find inflammation at the moment. Virtually every area of my body has some symptom and every year i get
The experts think i have this as i have lesions on my brain, but they have done MRI recently and no new damage but i still have lots of neurological symptoms. they have done bloods but they cannot find inflammation at the moment. Virtually every area of my body has some symptom and every year i get
zeusthegreat
in
Vasculitis UK
11 years ago
Flares & Relapses
Do flares. & relapses almost always occur? My 13 year old daughter has wegeners granulomatosis - diagnosed august this year. Does anybody out there have WG & not suffered either - I worry so much for the future & would love some reassurance.
Do flares. & relapses almost always occur? My 13 year old daughter has wegeners granulomatosis - diagnosed august this year. Does anybody out there have WG & not suffered either - I worry so much for the future & would love some reassurance.
Bailey24
in
Vasculitis UK
11 years ago
More cyclops
Mixed news today from my visit to the hospital. Positive news: signs are good for my recovery. Nerve damage has now bottomed out and she is hopeful. Bloods and urine all good. Now to keep the PAN at bay I have been told I will have to face 6 months more of chemotherapy. Because I am "off plan" for Rituximab
Mixed news today from my visit to the hospital. Positive news: signs are good for my recovery. Nerve damage has now bottomed out and she is hopeful. Bloods and urine all good. Now to keep the PAN at bay I have been told I will have to face 6 months more of chemotherapy. Because I am "off plan" for Rituximab
Wellsie
in
Vasculitis UK
11 years ago
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