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Experiences with
Urticarial vasculitis
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Hi I am new to the forum because I have just been diagnosed with Vasculitis. I have been tested, diagnosed and started treatment all in the matter of 10 days! I can't believe how quickly my life has been turned on its head. I had a rash on my legs which lead to having a kidney biopsy which lead to a
Hi I am new to the forum because I have just been diagnosed with Vasculitis. I have been tested, diagnosed and started treatment all in the matter of 10 days! I can't believe how quickly my life has been turned on its head. I had a rash on my legs which lead to having a kidney biopsy which lead to a
Dave34
in
Vasculitis UK
3 years ago
New diagnosis HUVS
my daughter (17) has just been diagnosed with HUVS hypocomplementemic
urticarial
vasculitis
syndrome. I’m still doing my research on this condition. Was just looking to see if anyone could offer some advice.
my daughter (17) has just been diagnosed with HUVS hypocomplementemic
urticarial
vasculitis
syndrome. I’m still doing my research on this condition. Was just looking to see if anyone could offer some advice.
Sarah-38
in
Vasculitis UK
3 years ago
Following Rituximab, is this expected or is there cause for concern
Hi all, my GPA has flared after a few years of being stable, (damn it, was doing so well). As well as increased anca, I had pain in the joints in my fingers and really bad fatigue. My rheumatologist set up 4 rituximab infusions 1 week apart. By the 3rd infusion I was feeling good, both fatigue and joint
Hi all, my GPA has flared after a few years of being stable, (damn it, was doing so well). As well as increased anca, I had pain in the joints in my fingers and really bad fatigue. My rheumatologist set up 4 rituximab infusions 1 week apart. By the 3rd infusion I was feeling good, both fatigue and joint
stuc
in
Vasculitis UK
3 years ago
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How quickly can you relapse after rituximab
Hi on rituximab for anca vasculitis. Was told two weeks ago that I was in remission. My breathing is now awful and wheezy and coughing up green gunk. Is it possible to relapse so quickly. It was the 18th march I had my last infusion.
Hi on rituximab for anca vasculitis. Was told two weeks ago that I was in remission. My breathing is now awful and wheezy and coughing up green gunk. Is it possible to relapse so quickly. It was the 18th march I had my last infusion.
Vqueen
in
Vasculitis UK
3 years ago
Am I finally being listened to?
Anyway for a years now I've been asking for another skin biopsy as the one done 4 years ago was from a week's old rash, that old it's companion spot's disappeared 2 days later so I am sceptical of the result which I was first informed was
Urticarial
Vasculitis
and then it was changed when the head of
Anyway for a years now I've been asking for another skin biopsy as the one done 4 years ago was from a week's old rash, that old it's companion spot's disappeared 2 days later so I am sceptical of the result which I was first informed was
Urticarial
Vasculitis
and then it was changed when the head of
Boudica1
in
LUPUS UK
3 years ago
Any advice?
Hi all. I’ve just joined here and recently been diagnosed with ANCA vasculitis. I’d never heard of it and had a series of tests. I’d love to hear any stories or advice from any of you.
Hi all. I’ve just joined here and recently been diagnosed with ANCA vasculitis. I’d never heard of it and had a series of tests. I’d love to hear any stories or advice from any of you.
Blueybear
in
Vasculitis UK
3 years ago
I was diagnosed with Wegeners Granulomatosis, now known as Granulomatosis with Polyangiitis, 20 years ago this month.
My wife Susan has written my vasculitis story for the VUK website for those who have an interest. https://www.vasculitis.org.uk/john-mills-story
My wife Susan has written my vasculitis story for the VUK website for those who have an interest. https://www.vasculitis.org.uk/john-mills-story
John_Mills
Vasculitis UK
in
Vasculitis UK
3 years ago
Off meds but anxious 😟
Hi all. I have been off Azathioprine and prednisolone since April 2019. Whilst I’m glad I’m not on them I feel vulnerable and anxious about relapsing. (I was taken off them due to adverse side effects) At the time my consultant felt that as I was doing well without them there was no need to put me on
Hi all. I have been off Azathioprine and prednisolone since April 2019. Whilst I’m glad I’m not on them I feel vulnerable and anxious about relapsing. (I was taken off them due to adverse side effects) At the time my consultant felt that as I was doing well without them there was no need to put me on
Webbyj
in
Vasculitis UK
3 years ago
Need help please
Hi everyone, I’ve recently been diagnosed with EGPA Vasculitis after suffering different symptoms for a few years and then fighting for my life at Christmas with severe pneumonia. I came out the other side a changed man but I’m struggling to come to terms with what is happening with my body at times!
Hi everyone, I’ve recently been diagnosed with EGPA Vasculitis after suffering different symptoms for a few years and then fighting for my life at Christmas with severe pneumonia. I came out the other side a changed man but I’m struggling to come to terms with what is happening with my body at times!
Rarity1
in
Vasculitis UK
3 years ago
Rituximab and vaccine
This is not a question about whether to get the vaccine. I know it’s recommended and I can’t wait to do it. It’s about those of you who are immunosuppressed with Rituximab or something similar that have received a vaccine. Curious if any of you have had your antibodies tested afterward. I am so anxious
This is not a question about whether to get the vaccine. I know it’s recommended and I can’t wait to do it. It’s about those of you who are immunosuppressed with Rituximab or something similar that have received a vaccine. Curious if any of you have had your antibodies tested afterward. I am so anxious
TwoH
in
LUPUS UK
3 years ago
Rituximab after Pfizer
Hi Everybody, hope you are all well! There has been a lot of good advice regarding the safety and time limit guidelines for having the Pfizer vaccine after Rituximab, as I mentioned earlier I had m6 last infusion on 20th November last year and my first Pfizer jab last week. What I haven’t heard much
Hi Everybody, hope you are all well! There has been a lot of good advice regarding the safety and time limit guidelines for having the Pfizer vaccine after Rituximab, as I mentioned earlier I had m6 last infusion on 20th November last year and my first Pfizer jab last week. What I haven’t heard much
Investigator1
in
Vasculitis UK
3 years ago
Is Granulomatosis with polyangiitis (GPA) relapse after every 2 years??
I am suffering from Granulomatosis with polyangiitis (GPA) from past 7 years now. It is non curable disease yet controllable from medicines if treated on right time. Symptoms of this disease can vary patient to patient - in 2014 my symptoms was nose blockage, joint pain, blood from month & nose, and
I am suffering from Granulomatosis with polyangiitis (GPA) from past 7 years now. It is non curable disease yet controllable from medicines if treated on right time. Symptoms of this disease can vary patient to patient - in 2014 my symptoms was nose blockage, joint pain, blood from month & nose, and
Mohini25
in
Vasculitis UK
3 years ago
Vasculitis and COVID Vaccine
Hi everybody, we are now further down the road regarding vaccinations from my last post on the subject, however I am still having difficulty finding information regarding if those of us on immune suppressants can have a COVID jab. I say this because I have heard Doctors saying if you are offered the
Hi everybody, we are now further down the road regarding vaccinations from my last post on the subject, however I am still having difficulty finding information regarding if those of us on immune suppressants can have a COVID jab. I say this because I have heard Doctors saying if you are offered the
Investigator1
in
Vasculitis UK
3 years ago
Shielding
Hi I was diagnosed with cerebral vasculitis 14 years ago. At that time I became quite poorly and had steroids infused every 12 weeks over 3 days. I do still take medication but have not had to have steroids for a while now. I have been told that I am stable now and I’m doing well. With this in mind I
Hi I was diagnosed with cerebral vasculitis 14 years ago. At that time I became quite poorly and had steroids infused every 12 weeks over 3 days. I do still take medication but have not had to have steroids for a while now. I have been told that I am stable now and I’m doing well. With this in mind I
blackgolf
in
Vasculitis UK
3 years ago
I am new here having finally been diagnosed with Crohn’s Colitis having previously told it was Ulcerated Colitis
A belated Merry Christmas everyone. I have finally had it confirmed that I have Crohn’s Colitis but am struggling with a very bad flare up which, so far, has lasted nine weeks. My GP doubled my medication to 4800 mg of Octasa (Mesalazine) a day but, after two weeks, it doesn’t seem to have had any
A belated Merry Christmas everyone. I have finally had it confirmed that I have Crohn’s Colitis but am struggling with a very bad flare up which, so far, has lasted nine weeks. My GP doubled my medication to 4800 mg of Octasa (Mesalazine) a day but, after two weeks, it doesn’t seem to have had any
gmm55
in
LUPUS UK
4 years ago
Recently Diagnosed with CNS Vasculitis
Hello, Im new to this group and have recently been diagnosed in the last year with various forms of vasculitis, CNS and systemic, I am just learning to accept this and finding it very hard for the whole family if anyone has any advice that would be great especially for my little ones who are 8 & 10
Hello, Im new to this group and have recently been diagnosed in the last year with various forms of vasculitis, CNS and systemic, I am just learning to accept this and finding it very hard for the whole family if anyone has any advice that would be great especially for my little ones who are 8 & 10
NataliePhillips123
in
Vasculitis UK
4 years ago
Rituxuban
Have just had my first infusion 6days ago having been unable to tolerate Azathioprine or MMF. Am currently on Prednisolone 10mgs but am having abdo and back pain. Should I increase my prednisolone until the Ritixuban kicks in. I have PAN vasculitis. Thanks x
Have just had my first infusion 6days ago having been unable to tolerate Azathioprine or MMF. Am currently on Prednisolone 10mgs but am having abdo and back pain. Should I increase my prednisolone until the Ritixuban kicks in. I have PAN vasculitis. Thanks x
Daytek
in
Vasculitis UK
4 years ago
Autoimmune Neutropenia
Please may I ask if anyone has had experience of autoimmune neutropenia as I have developed this secondary to my Behcets. Basically I have developed an antibody which is destroying my own neutrophils. This is following a year of being unwell with several illnesses and being unable to take my immunosuppressants
Please may I ask if anyone has had experience of autoimmune neutropenia as I have developed this secondary to my Behcets. Basically I have developed an antibody which is destroying my own neutrophils. This is following a year of being unwell with several illnesses and being unable to take my immunosuppressants
NikD
in
Behçet's UK
4 years ago
Rituximab and pregnancy
Has anyone had rituximab and tried for a baby? I’m roughly 7 years diagnosed and had only 1 relapse in between. GPA vasculitis
Has anyone had rituximab and tried for a baby? I’m roughly 7 years diagnosed and had only 1 relapse in between. GPA vasculitis
rrahman
in
Vasculitis UK
4 years ago
Blood clots and urticarial vasculitis syndrome
My
urticarial
vasculitis
syndrome is being treated as lupus. I am just over two weeks into a trial of colchicine, which is giving me no noticeable side effects, but which has not prevented more joints swelling up and being painful.
My
urticarial
vasculitis
syndrome is being treated as lupus. I am just over two weeks into a trial of colchicine, which is giving me no noticeable side effects, but which has not prevented more joints swelling up and being painful.
Hoofprints
in
LUPUS UK
4 years ago
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