Search
Search
About
Log in
Join
Experiences with
Urticarial vasculitis
Posts
Communities
765 public posts
Filter results
Wegeners (GPA)
I've recently been diagnosed with Wegeners and have had my first course of Rituximab. On daily steroids and generally feeling a lot better. My nose has changed shape (saddle deformity) and it currently is letting off a bit of a horrible smell... (Like rotting) Does/did this happen to anyone else In the
I've recently been diagnosed with Wegeners and have had my first course of Rituximab. On daily steroids and generally feeling a lot better. My nose has changed shape (saddle deformity) and it currently is letting off a bit of a horrible smell... (Like rotting) Does/did this happen to anyone else In the
Marcus1988
in
Vasculitis UK
9 years ago
Treatment for CSS
I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations
I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations
Maudy1
in
Vasculitis UK
9 years ago
NHS Choices website now covers Vasculitis
We are working on the
Urticarial
Vasculitis
information but hopefully it will be covered too. This is really a big step for information and more awareness within the NHS for Vasculitis :-) This is the direct link http://www.nhs.uk/conditions/vasculitis/Pages/Introduction.aspx
We are working on the
Urticarial
Vasculitis
information but hopefully it will be covered too. This is really a big step for information and more awareness within the NHS for Vasculitis :-) This is the direct link http://www.nhs.uk/conditions/vasculitis/Pages/Introduction.aspx
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Anca test
Hi everyone, Iv posted on here in the past due to various symptoms which i thought could possibly be vasculitis. Months passed and my endo susspected i had PMR and i was started on a trial of steroids for a week. I did not respond to the steroids as i should have so they were stopped. He is now running
Hi everyone, Iv posted on here in the past due to various symptoms which i thought could possibly be vasculitis. Months passed and my endo susspected i had PMR and i was started on a trial of steroids for a week. I did not respond to the steroids as i should have so they were stopped. He is now running
yorkshiregirl44
in
Vasculitis UK
9 years ago
Carers Meeting - Coventry November 28th 2015
The next new "Carers" group in Meriden, Coventry, is having its inaugural meeting on 28th November, 2015. This informal meeting, with food, will take place at Berryfields Farm Shop, Meriden, Coventry. The first meeting was held 2nd August in Suffolk. A small number gathered for lunch to meet one another
The next new "Carers" group in Meriden, Coventry, is having its inaugural meeting on 28th November, 2015. This informal meeting, with food, will take place at Berryfields Farm Shop, Meriden, Coventry. The first meeting was held 2nd August in Suffolk. A small number gathered for lunch to meet one another
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Post op
Hi everyone just to let you know I have had my mastectomy etc. On Monday and came home on Tuesday. I had wonderful care . I was taken straight to Intensive care unit and I was there until Tuesday lunch time. Everything went well now it's all about getting better. Unfortunately the vasculitis pain remains
Hi everyone just to let you know I have had my mastectomy etc. On Monday and came home on Tuesday. I had wonderful care . I was taken straight to Intensive care unit and I was there until Tuesday lunch time. Everything went well now it's all about getting better. Unfortunately the vasculitis pain remains
Fennahj7115
in
Vasculitis UK
9 years ago
My 10 year old and vasculitis
Hi it's been a while since I posted on here. My 10 year old daughter was diagnosed with cerebral vasculitis earlier this year and we are very lucky because it's only in her brain at the moment they classified it as non progressive (at the moment) so I'm assuming it can change. We are under a rheumatologist
Hi it's been a while since I posted on here. My 10 year old daughter was diagnosed with cerebral vasculitis earlier this year and we are very lucky because it's only in her brain at the moment they classified it as non progressive (at the moment) so I'm assuming it can change. We are under a rheumatologist
Shelley46
in
Vasculitis UK
9 years ago
Pain/Fatigue in Vasculitis (even when other symptoms are under control)
Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful. I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested
Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful. I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested
PCAD
in
Vasculitis UK
9 years ago
WG cannot confirmed??Worried
Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG . I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of
Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG . I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of
Nancyp
in
Vasculitis UK
9 years ago
Multiple sclerosis and vasculitis
Hi. I have had Multiple Sclerosis for 8 yrs and last year had a TIA. My neuro is sending me for angiogram and CT scan on my neck and brain. He mentioned the possibility of Vasculitis. Can anyone tell me if it's possible to have both MS and Vasculitis? I know they are both autoimmune diseases. As you
Hi. I have had Multiple Sclerosis for 8 yrs and last year had a TIA. My neuro is sending me for angiogram and CT scan on my neck and brain. He mentioned the possibility of Vasculitis. Can anyone tell me if it's possible to have both MS and Vasculitis? I know they are both autoimmune diseases. As you
3joanne
in
Vasculitis UK
9 years ago
Feedback from the new Northumberland and Cumbria first support group meeting
Just wanted to say what a great meeting we all had at the very first Northumberland and Cumbria support meeting, at the weekend.. We were a group of 22, patients and famiies. We met old friends and made new friends. :-) John gave a presentation about the importance of doctors and patients working together
Just wanted to say what a great meeting we all had at the very first Northumberland and Cumbria support meeting, at the weekend.. We were a group of 22, patients and famiies. We met old friends and made new friends. :-) John gave a presentation about the importance of doctors and patients working together
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
dust exposure and wegeners
Hello everyone i am very much interested in gathering as much imformation of people with wegeners / renal failure that might have been exposed to any form of dust over the years in your working life be it stone dust , wood , cement or any other kind of air pollutant , so if anybody would like to send
Hello everyone i am very much interested in gathering as much imformation of people with wegeners / renal failure that might have been exposed to any form of dust over the years in your working life be it stone dust , wood , cement or any other kind of air pollutant , so if anybody would like to send
morgan33
in
Vasculitis UK
9 years ago
In desperate need of help and advice about Behcet's.
Hey all, I'm desperate for some advice about Behcet's. To run you through my story in brief. Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes. Since April this year I've been suffering from numerous
Hey all, I'm desperate for some advice about Behcet's. To run you through my story in brief. Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes. Since April this year I've been suffering from numerous
ChangesAA
in
Behçet's UK
9 years ago
help.
I was diagnosed with microscopic polangitis, Anca positive in 2007. I have been in remission on a low dose of steroids and azathioprine since. I had a relapse in Jan. This time I have pains in my chest, quite a wide area, and I get constant stabbing pains in the centre of my chest. I have had an angiogram
I was diagnosed with microscopic polangitis, Anca positive in 2007. I have been in remission on a low dose of steroids and azathioprine since. I had a relapse in Jan. This time I have pains in my chest, quite a wide area, and I get constant stabbing pains in the centre of my chest. I have had an angiogram
Lucywhiton
in
Vasculitis UK
9 years ago
Private Consultant asked GP to refer for NHS clinic
Hi, I have seen a private consultant in my area and received a diagnosis of vasculitis. He also runs the a rheumatology clinic under the NHS, and wrote to my surgery to ask them to refer me to him under the NHS. Today I received a letter from the local PCT saying that my GP agreed I could see the
Hi, I have seen a private consultant in my area and received a diagnosis of vasculitis. He also runs the a rheumatology clinic under the NHS, and wrote to my surgery to ask them to refer me to him under the NHS. Today I received a letter from the local PCT saying that my GP agreed I could see the
lollypocket
in
Vasculitis UK
9 years ago
Anca vasulititis
My fiance was diagnosed with Anca vasculitis in 2014. Can one be in "remission" and still have mild symptoms?
My fiance was diagnosed with Anca vasculitis in 2014. Can one be in "remission" and still have mild symptoms?
Christina1960
in
Vasculitis UK
9 years ago
Would using calcium channel blocker mask CNSV vasculitis in MRI?
I saw my new neurologist yesterday and he gave me a prescription for Verapamil, a calcium channel blocker, to try while I am waiting for next MRI to see if there is evidence of active cerebral vasculitis. They have not treated me with prednisone in the past four months of this flare because they did
I saw my new neurologist yesterday and he gave me a prescription for Verapamil, a calcium channel blocker, to try while I am waiting for next MRI to see if there is evidence of active cerebral vasculitis. They have not treated me with prednisone in the past four months of this flare because they did
Kat13
in
Vasculitis UK
9 years ago
Blood pooling...chronic venous insufficiency anyone?
Has anyone had this diagnosed? My Drs, consultants & podiatrist have been muttering about this due to the purple my forefeet & toes go when I sit &/or stand. They've been observing this for years now. Above, the forefeet are a sort of grey-blue, and, looking at the soles of my feet & the bulk of my
Has anyone had this diagnosed? My Drs, consultants & podiatrist have been muttering about this due to the purple my forefeet & toes go when I sit &/or stand. They've been observing this for years now. Above, the forefeet are a sort of grey-blue, and, looking at the soles of my feet & the bulk of my
Barnclown
in
LUPUS UK
9 years ago
ANCA C vasculitis
Hi. In 2009 my husband was diagnosed with anca positive vasculitis. It attacked and destroyed his kidneys. He has peritoneal dialysis using a machine overnight. For 2 years he had a cough on which antibiotics had no effects. He started passing blood in the small amount if urine he could pass. He
Hi. In 2009 my husband was diagnosed with anca positive vasculitis. It attacked and destroyed his kidneys. He has peritoneal dialysis using a machine overnight. For 2 years he had a cough on which antibiotics had no effects. He started passing blood in the small amount if urine he could pass. He
sunigirl
in
Vasculitis UK
9 years ago
Do immunosuppressants and sushi mix?
Hey guys a bit if a random question. Met up with a friend at Yo Sushi and had a lovely catch up which was nice because I don’t get to go out that often. However when I came home my tummy was doing stunts and show and I was up all night I’m not sure if Imagined this having this conversation when
Hey guys a bit if a random question. Met up with a friend at Yo Sushi and had a lovely catch up which was nice because I don’t get to go out that often. However when I came home my tummy was doing stunts and show and I was up all night I’m not sure if Imagined this having this conversation when
wotshernameagain
in
LUPUS UK
9 years ago
1
...
21
22
23
...
39
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Vasculitis UK
641 results
LUPUS UK
87 results
Behçet's UK
21 results
View top 10 communities
Sort by
Most Relevant
Newest