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Experiences with
Urticarial vasculitis
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Stay positive and you can get though it
In 1999 I came down with Cerebral Vasculitis. Can’t remember the level of the medications that I originally was on but it was a high dose of Prednisolone and Cyclophosphamide and Valproate. Together with the symptoms that caused Seizures, Short Term Memory Loss, Concentration and Spatial Awareness and
In 1999 I came down with Cerebral Vasculitis. Can’t remember the level of the medications that I originally was on but it was a high dose of Prednisolone and Cyclophosphamide and Valproate. Together with the symptoms that caused Seizures, Short Term Memory Loss, Concentration and Spatial Awareness and
phil3
in
Vasculitis UK
6 years ago
Coping Strategies for Waiting to be Seen
Hi all, I was diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing / vasculitis being suspected and am waiting to be seen by rheumatology to start immunosuppressive treatment. Those of you who were not in hospital when you were treated by rheumatology for vasculitis
Hi all, I was diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing / vasculitis being suspected and am waiting to be seen by rheumatology to start immunosuppressive treatment. Those of you who were not in hospital when you were treated by rheumatology for vasculitis
citygirl1234
in
Vasculitis UK
6 years ago
Looking for advice please
Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum
Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum
Lisagill
in
LUPUS UK
6 years ago
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Recommendations for ANCA vasculitis specialists near London?
Hi all, I'm fairly new to the whole vasculitis thing and am still going through the motions in order to get a diagnosis. I have already seen respiratory, ENT and immunology consultants, and they strongly suspect I have either EPGA or GPA based on blood results and CT scans but as this is quite a niche
Hi all, I'm fairly new to the whole vasculitis thing and am still going through the motions in order to get a diagnosis. I have already seen respiratory, ENT and immunology consultants, and they strongly suspect I have either EPGA or GPA based on blood results and CT scans but as this is quite a niche
citygirl1234
in
Vasculitis UK
6 years ago
Aortitis, now might have to start cyclophosphamide
Hi everyone, I was diagnosed with aortitis in Dec 2015 and have been taking prednisolone and mycophenolate for this. My consultant wants me to think about possibly starting cyclophosphamide, as my inflammatory markers have stuck for some time now at around 10-13 and I still feel exhausted etc. I didnt
Hi everyone, I was diagnosed with aortitis in Dec 2015 and have been taking prednisolone and mycophenolate for this. My consultant wants me to think about possibly starting cyclophosphamide, as my inflammatory markers have stuck for some time now at around 10-13 and I still feel exhausted etc. I didnt
Suzycat
in
Vasculitis UK
6 years ago
LABORATORY RESULTS VARY BY LAB
My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without any other inflammatory markers. He had his blood drawing technician make a blood smear on slides which were sent to different labs. As I understand it these slides are prepared for human microscopists to read. The results
My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without any other inflammatory markers. He had his blood drawing technician make a blood smear on slides which were sent to different labs. As I understand it these slides are prepared for human microscopists to read. The results
Christophene47
in
Vasculitis UK
6 years ago
Research Study - Survey Regarding Discontinuing Immune Suppression in ANCA Vasculitis
Discontinuing Immune Suppression in ANCA Vasculitis Suppression of the body’s immune system is at the heart of modern treatment for ANCA vasculitis. But whereas stopping treatment carries the risk of relapse, being immune suppressed carries the risk of infection and other problems. In cases where there
Discontinuing Immune Suppression in ANCA Vasculitis Suppression of the body’s immune system is at the heart of modern treatment for ANCA vasculitis. But whereas stopping treatment carries the risk of relapse, being immune suppressed carries the risk of infection and other problems. In cases where there
John_Mills
Vasculitis UK
in
Vasculitis UK
6 years ago
suffering from Wegener granulomatosis ,Had 2nd infusion of retuximab but still having haeavyness in foot,&pain?
had retuximab 15days before but still having foot heaviness and pain in foot. not able to walk properly. tired of this pain when this pain stop? continues pain in both foot from last 8to 9 months. please sujjest when this cycle is stop?
had retuximab 15days before but still having foot heaviness and pain in foot. not able to walk properly. tired of this pain when this pain stop? continues pain in both foot from last 8to 9 months. please sujjest when this cycle is stop?
sam05
in
Vasculitis UK
6 years ago
Very anxious about having IV Cyclophosphamide. need to hear of your experience with this drug.
Hi everyone, I really need your help. I have lung disease caused by lupus. currently my lupus is not under controlled and my lung capacity is diminishing. I am currently on prednisolone and hydroxychloroquine. The docs have advised me to have IV Cyclophosphamide, however I am very anxious about this
Hi everyone, I really need your help. I have lung disease caused by lupus. currently my lupus is not under controlled and my lung capacity is diminishing. I am currently on prednisolone and hydroxychloroquine. The docs have advised me to have IV Cyclophosphamide, however I am very anxious about this
field
in
LUPUS UK
6 years ago
How rare am I?
What club do I belong to? What's lurking?
Autoimmune disease "club" for certain. "Your complicated" is what I've been told—"smoldering" and "atypical presentation" when discussing Granulomatosis with Polyangiitis (Wegener's). Possibly Central Nervous System (CNS) vasculitis. "We should consider
What club do I belong to? What's lurking?
Autoimmune disease "club" for certain. "Your complicated" is what I've been told—"smoldering" and "atypical presentation" when discussing Granulomatosis with Polyangiitis (Wegener's). Possibly Central Nervous System (CNS) vasculitis. "We should consider
Canygirl61
in
Vasculitis UK
6 years ago
Vasculitis
Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything yet but reading people issues has helped me so here we go 3 days after my 40 th bday got diagnosed with small and medium cell vasculitis with systematic symptoms this shit disease has effect me badly, had many treatments some
Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything yet but reading people issues has helped me so here we go 3 days after my 40 th bday got diagnosed with small and medium cell vasculitis with systematic symptoms this shit disease has effect me badly, had many treatments some
tazmoe
in
Vasculitis UK
6 years ago
Feeling worse with treatment
Recently diagnosed with mpo ANCA +ve Vasculitis and undergoing Aggresive stage of treatment now. Prednisone and cyclo. Trying to work with reasonable adjustments made by employers, mostly at home. Very tired. Consultant tells me I will feel better when aggressive intervention moves to maintenance. Is
Recently diagnosed with mpo ANCA +ve Vasculitis and undergoing Aggresive stage of treatment now. Prednisone and cyclo. Trying to work with reasonable adjustments made by employers, mostly at home. Very tired. Consultant tells me I will feel better when aggressive intervention moves to maintenance. Is
Katiz
in
Vasculitis UK
6 years ago
New here and confused
This past 6mths have had countless bloods done as a skin biopsy has shown I have
Urticarial
Vasculitis
. The vasculitis rash has been constant for 2yrs along with a whole raft of pains in the abdomen, kidney with blood in pee and a list of symptoms far to long to go into.
This past 6mths have had countless bloods done as a skin biopsy has shown I have
Urticarial
Vasculitis
. The vasculitis rash has been constant for 2yrs along with a whole raft of pains in the abdomen, kidney with blood in pee and a list of symptoms far to long to go into.
Boudica1
in
Pernicious Anaemia Society
6 years ago
Heart racing after infusion for Wegeners
I had my 4th infusion of Rituximab last week for Wegeners granulomatosis and earlier today felt pressure in my ears, like when you go up in an aircraft but also I felt dizzy and very faint. I’ve taken double my propranolol but nothing is slowing it down. Should I phone 101 or 999 ? Could this be Rituximab
I had my 4th infusion of Rituximab last week for Wegeners granulomatosis and earlier today felt pressure in my ears, like when you go up in an aircraft but also I felt dizzy and very faint. I’ve taken double my propranolol but nothing is slowing it down. Should I phone 101 or 999 ? Could this be Rituximab
Balderick
in
Vasculitis UK
6 years ago
After Three years I am been taken off my medication for my illness Anca vasculitis.
On June 2015 I only had days to live my kidneys where at 6% I was send to hospital in Letterkenny Donegal IRELAND, After blood tests in A&E I was rushed into tensive care I was rushed by ambulance to beaumont hospital Dublin Where the consultant and team was waiting for me coming in the hospital
On June 2015 I only had days to live my kidneys where at 6% I was send to hospital in Letterkenny Donegal IRELAND, After blood tests in A&E I was rushed into tensive care I was rushed by ambulance to beaumont hospital Dublin Where the consultant and team was waiting for me coming in the hospital
Fred27
in
Vasculitis UK
6 years ago
Belimumab and Rituximab combo
Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like? I am having a bad period of flare ups this year including many
Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like? I am having a bad period of flare ups this year including many
LydiaG
in
LUPUS UK
6 years ago
Receiving ESA, now due a health assessment by ATOS
Hi everyone, I've had aortitis now for 2 and a half years and have been receiving income based Employment and Support Allowance. My condition is 'stable' but I am not in remission yet. I still feel unwell most days, fatigue and breathlessness being my primary symptoms just now. I did think that by now
Hi everyone, I've had aortitis now for 2 and a half years and have been receiving income based Employment and Support Allowance. My condition is 'stable' but I am not in remission yet. I still feel unwell most days, fatigue and breathlessness being my primary symptoms just now. I did think that by now
Suzycat
in
Vasculitis UK
6 years ago
Skin biopsy
Hi has anyone had biopsy and it shows another desese not Lupus ? Thanks in advance
Hi has anyone had biopsy and it shows another desese not Lupus ? Thanks in advance
suzierwp330
in
LUPUS UK
6 years ago
Vasculitis
As I understand it Wengers is the old name for anca vasculitis first thing my consultant did was to biopsy my kidney it was negative but I still have the antibodies for anca so I'm now waiting for another biopsy they're a bit worried though lost one kidney to cancer
As I understand it Wengers is the old name for anca vasculitis first thing my consultant did was to biopsy my kidney it was negative but I still have the antibodies for anca so I'm now waiting for another biopsy they're a bit worried though lost one kidney to cancer
Glenville
in
Vasculitis UK
6 years ago
Some Google Analytics for the Vasculitis UK website from March 1st - 31st 2018, for those with an interest.
EGPA (Churg Strauss Syndrome) Giant Cell Arteritis
Urticarial
Vasculitis
Top 10 Countries UK, US, India, Australia, Canada, Ireland, Philippines, New Zealand, Egypt and Pakistan
EGPA (Churg Strauss Syndrome) Giant Cell Arteritis
Urticarial
Vasculitis
Top 10 Countries UK, US, India, Australia, Canada, Ireland, Philippines, New Zealand, Egypt and Pakistan
John_Mills
Vasculitis UK
in
Vasculitis UK
6 years ago
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