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Experiences with
Urticarial vasculitis
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Blood clots and urticarial vasculitis syndrome
I wondered if anyone could tell me whether they have suffered blood clotting as part of
urticarial
vasculitis
syndrome ( or any other forms of vasculitis actually, as I'm not convinced that I only have the one type affecting small blood vessels)?
I wondered if anyone could tell me whether they have suffered blood clotting as part of
urticarial
vasculitis
syndrome ( or any other forms of vasculitis actually, as I'm not convinced that I only have the one type affecting small blood vessels)?
Hoofprints
in
Vasculitis UK
4 years ago
Does Azathioprine ever fail?
I had got myself into a good position with my ANCA marker after Cyclophosphamide and Prednisolone and after monthly blood tests it’s started to creep up from 40 to 51 to 62. Not a massive increase and no returning symptoms. The last blood test results for ANCA was early August because I had to go local
I had got myself into a good position with my ANCA marker after Cyclophosphamide and Prednisolone and after monthly blood tests it’s started to creep up from 40 to 51 to 62. Not a massive increase and no returning symptoms. The last blood test results for ANCA was early August because I had to go local
Investigator1
in
Vasculitis UK
4 years ago
Urticarial vasculitis syndrome & hydroxychloroquine
Can anyone help by sharing their experience of hydroxychloroquine. Specifically anyone who has not been able to tolerate it? I'm beginning to feel like an oddity because I seem to have had quite an immediate reaction to it, which I was not expecting as I know the drug takes a while to get into your system
Can anyone help by sharing their experience of hydroxychloroquine. Specifically anyone who has not been able to tolerate it? I'm beginning to feel like an oddity because I seem to have had quite an immediate reaction to it, which I was not expecting as I know the drug takes a while to get into your system
Hoofprints
in
Vasculitis UK
4 years ago
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Medication after Rituximab
Hi My OH is due for his second infusion following a relapse of his GPA. He was diagnosed 3 years ago and went into remission quickly after chemo infusions x 6. My question is does he also have an oral immune suppressant following this infusion. He presently takes 100mgs AZA and is on 30 mgs prednisone
Hi My OH is due for his second infusion following a relapse of his GPA. He was diagnosed 3 years ago and went into remission quickly after chemo infusions x 6. My question is does he also have an oral immune suppressant following this infusion. He presently takes 100mgs AZA and is on 30 mgs prednisone
Main1234
in
Vasculitis UK
4 years ago
Help needed! Possibility of surgery due to avascular necrosis!
Covid has made it difficult to receive adequate care because of social distancing. In June 2020, I received a steroid injection in my left hip. Honestly, I have not seen much improvement. I have increased my fitness by exercising 3 to 4 times a week and hoping it would improve my mobility. I was using
Covid has made it difficult to receive adequate care because of social distancing. In June 2020, I received a steroid injection in my left hip. Honestly, I have not seen much improvement. I have increased my fitness by exercising 3 to 4 times a week and hoping it would improve my mobility. I was using
SLE-Warrior
in
LUPUS UK
4 years ago
Has anyone been increased on Azathioprine? Did it help?
Hi all, i have been on Azathioprine 100mg for about a year now and I have been told that it doesn’t seem to be suppressing my neutrophil count. They have been hesitant to increase me as they said my weight 100mg is good for (i weigh 70kg due to high steroids but lets say im usually 60-65kg marker) but
Hi all, i have been on Azathioprine 100mg for about a year now and I have been told that it doesn’t seem to be suppressing my neutrophil count. They have been hesitant to increase me as they said my weight 100mg is good for (i weigh 70kg due to high steroids but lets say im usually 60-65kg marker) but
Sandy1212
in
LUPUS UK
4 years ago
Help develop a testing tool
EULAR and ARC are conducting research to develop a tool for determining the efficiency of treatments for patients with Vasculitis. They are looking for people who have AAV Vasculitis Granulomatosis with Polyangiitis and Microscopic Polyangiitis. https://www.vasculitis.org.uk/news/help-develop-a-testing-tool
EULAR and ARC are conducting research to develop a tool for determining the efficiency of treatments for patients with Vasculitis. They are looking for people who have AAV Vasculitis Granulomatosis with Polyangiitis and Microscopic Polyangiitis. https://www.vasculitis.org.uk/news/help-develop-a-testing-tool
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
Help with exercising with GPA.
Hi, I don’t normally post as feel a bit shy about asking for advice, but I am just interested in knowing anyone else’s experience. I have since my diagnosis, tried to do some exercise each day, however little. I thought, and I have seen on this site, that there are advocates for exercise as reducing
Hi, I don’t normally post as feel a bit shy about asking for advice, but I am just interested in knowing anyone else’s experience. I have since my diagnosis, tried to do some exercise each day, however little. I thought, and I have seen on this site, that there are advocates for exercise as reducing
Tbrz
in
Vasculitis UK
4 years ago
ANCA PR3 Rising after finishing Cyclophosphamide and transferring to Azathioprine.
Hi Anybody out there, I have been doing really well reducing my ANCA PR3 Levels since diagnosis of GPO in December, they were off the scale but after 4 treatments of Cyclophosphamide it had a marker reading of 56, I then was transferred to Azathioprine and after 6 weeks of it my marker reduced to 40
Hi Anybody out there, I have been doing really well reducing my ANCA PR3 Levels since diagnosis of GPO in December, they were off the scale but after 4 treatments of Cyclophosphamide it had a marker reading of 56, I then was transferred to Azathioprine and after 6 weeks of it my marker reduced to 40
Investigator1
in
Vasculitis UK
4 years ago
Azathioprine
I am mid flare and feeling dreadful I failed on plaquinin due to a skin reaction 😓 so much treatment was stopped in early March . I was due to be seen to discuss my next options but that didn’t happen because of covid 19 . So Iv gone three months without any treatment and boy I’m feeling it . Rheumatologist
I am mid flare and feeling dreadful I failed on plaquinin due to a skin reaction 😓 so much treatment was stopped in early March . I was due to be seen to discuss my next options but that didn’t happen because of covid 19 . So Iv gone three months without any treatment and boy I’m feeling it . Rheumatologist
Harry19
in
LUPUS UK
4 years ago
Wegeners Granulamatosis - looking for tips
I am looking to find others with Wegeners Granulamatosis who are currently working as I am keen to understand what support is out there for someone desperately trying to hold down a full time highly stressful shift work job (in Services) whilst battling the fatigue and headaches that are common to this
I am looking to find others with Wegeners Granulamatosis who are currently working as I am keen to understand what support is out there for someone desperately trying to hold down a full time highly stressful shift work job (in Services) whilst battling the fatigue and headaches that are common to this
M25M
in
Vasculitis UK
4 years ago
Vasculitis lesions
I’m just wondering if anybody has these lesions seen in my posted photo . Just worried has it is getting worse than ever . I’ve always got these lesions , but not has much has I have now . Does this mean lupus is effecting my kidneys ? Can anyone answer this , or have experience with this problem ,
I’m just wondering if anybody has these lesions seen in my posted photo . Just worried has it is getting worse than ever . I’ve always got these lesions , but not has much has I have now . Does this mean lupus is effecting my kidneys ? Can anyone answer this , or have experience with this problem ,
Willow1414
in
LUPUS UK
4 years ago
It was the very first World Vasculitis Day, today, 15th May 2020
World Vasculitis Day Friday 15th May 2020 is the first ever WORLD VASCULITIS DAY. Today marks the first World Vasculitis Day, launched with a special edition of Rare Revolution magazine, dedicated to promoting the voice of the ANCA-associated vasculitis (AAV) global community. The article includes
World Vasculitis Day Friday 15th May 2020 is the first ever WORLD VASCULITIS DAY. Today marks the first World Vasculitis Day, launched with a special edition of Rare Revolution magazine, dedicated to promoting the voice of the ANCA-associated vasculitis (AAV) global community. The article includes
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
COVID19 Saved Angela’s Life - BBC News
COVID19 Saved My Life Angela was transferred to the Royal Brompton Hospital and was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA) https://www.bbc.co.uk/news/uk-england-london-52527736
COVID19 Saved My Life Angela was transferred to the Royal Brompton Hospital and was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA) https://www.bbc.co.uk/news/uk-england-london-52527736
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
Cyclophosphamide
Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis My Immunologist and Neurologist put me on Cyclophosphamide for two years and without this I wouldn’t be here as well as I am today. It can be tablet or via infusion. I had both as didn’t live in the same city as my medical team
Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis My Immunologist and Neurologist put me on Cyclophosphamide for two years and without this I wouldn’t be here as well as I am today. It can be tablet or via infusion. I had both as didn’t live in the same city as my medical team
Vrainbird
in
Vasculitis UK
4 years ago
Urgent help needed please
The first set of doctors I saw on Saturday when admitted to the ward took on board the anti c1q antibodies and my diagnosis of
urticarial
vasculitis
syndrome which has not been classed as hypocomplementemic but my C3 and C4 have mostly been just below the normal range for the past 6 years.
The first set of doctors I saw on Saturday when admitted to the ward took on board the anti c1q antibodies and my diagnosis of
urticarial
vasculitis
syndrome which has not been classed as hypocomplementemic but my C3 and C4 have mostly been just below the normal range for the past 6 years.
Hoofprints
in
LUPUS UK
4 years ago
Has anyone suffered Gastro intestinal bleeding with ET. How high were their platelets?
I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis
I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis
azaelea
in
MPN Voice
4 years ago
Advice needed
I have had 2 flare ups of
Urticarial
vasculitis
but haven't had one for nearly a year. Saw my dermatologist on Tuesday and she signed my off as I'm am not suffering at all and on no meds related to vasculitis. Should I be worried or not?
I have had 2 flare ups of
Urticarial
vasculitis
but haven't had one for nearly a year. Saw my dermatologist on Tuesday and she signed my off as I'm am not suffering at all and on no meds related to vasculitis. Should I be worried or not?
amywools26
in
Vasculitis UK
4 years ago
Immune system
I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclophosphamide treatment for six months than two years of azithioprene. I am not on any vasculitis meds now and was wondering if my immune system is still compromised. In other words does vasculitis permanently damage your immune
I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclophosphamide treatment for six months than two years of azithioprene. I am not on any vasculitis meds now and was wondering if my immune system is still compromised. In other words does vasculitis permanently damage your immune
Retire3603
in
Vasculitis UK
4 years ago
Your help is needed
We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an international research study led by researchers in Canada. If you think you maybe able to put yourself forward as a possible candidate please can you write
We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an international research study led by researchers in Canada. If you think you maybe able to put yourself forward as a possible candidate please can you write
John_Mills
Vasculitis UK
in
Vasculitis UK
4 years ago
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