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Urticarial vasculitis
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Egpa questions
After further reading I have more questions that perhaps the group can help to clarify.... Are ANCA positive and ANCA negative egpa both forms of vasculitis? Is there such a thing as egpa without vasculitis? In egpa is vasculitis a problem caused by clumps of eucinophils that group together for some
After further reading I have more questions that perhaps the group can help to clarify.... Are ANCA positive and ANCA negative egpa both forms of vasculitis? Is there such a thing as egpa without vasculitis? In egpa is vasculitis a problem caused by clumps of eucinophils that group together for some
Cathywp
in
Vasculitis UK
6 years ago
Has anyone got good pastures ?
Hi ive been diagonised with vasculitis with positive anti gbm last july. I have veen on pred starting on 60mg and now down to 5mg, had 10 plasma exchanges and then 9 rounds of chemo. My kidney function dropped to 9% and has regained to 40% but the last three wks it hasnt moved. Im just wondering if anyone
Hi ive been diagonised with vasculitis with positive anti gbm last july. I have veen on pred starting on 60mg and now down to 5mg, had 10 plasma exchanges and then 9 rounds of chemo. My kidney function dropped to 9% and has regained to 40% but the last three wks it hasnt moved. Im just wondering if anyone
jolittle93
in
Vasculitis UK
6 years ago
Vasculitis
This is my first time here and just trying to read all the post and responses so I can learn something each and everyone. My boyfriend was diagnosed with vasculitis a few months ago even though he had been struggling with it for the past 3 years but none of the doctors he was seeing knew enough about
This is my first time here and just trying to read all the post and responses so I can learn something each and everyone. My boyfriend was diagnosed with vasculitis a few months ago even though he had been struggling with it for the past 3 years but none of the doctors he was seeing knew enough about
Edgenius
in
Vasculitis UK
6 years ago
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Is there a link between surgical mesh and autoimmune conditions?
Hi. I developed Wegener's Granulomatosis or GPA 3 yrs after being treated with vaginal mesh implants for a prolapsed womb. I have read that some people are of the opinion that these 'foreign objects' in the body could be a contributor to auto immune diseases. I am wondering, does anyone else have a similar
Hi. I developed Wegener's Granulomatosis or GPA 3 yrs after being treated with vaginal mesh implants for a prolapsed womb. I have read that some people are of the opinion that these 'foreign objects' in the body could be a contributor to auto immune diseases. I am wondering, does anyone else have a similar
macrstq
in
Vasculitis UK
6 years ago
Tunnel/blurred Vision
I’m currently going through a Lupus flare up, my first bad one in months, on Monday I completely lost my sight which then improved to tunnel vision and after 3/4 hours my vision returned although still blurred and strained. Yesterday my head felt heavy still, I felt like my eyes were straining to focus
I’m currently going through a Lupus flare up, my first bad one in months, on Monday I completely lost my sight which then improved to tunnel vision and after 3/4 hours my vision returned although still blurred and strained. Yesterday my head felt heavy still, I felt like my eyes were straining to focus
RachelArmstrong89
in
LUPUS UK
6 years ago
Doctor says egpa does not affect your brain
Ok so now I'm back to where I was a year ago. Today was my third visit to the rheumatologist and I told her my symptoms seem to be returning since tapering down to only three mg of prednizone. My head feels loopy and I have dizziness and weird visual things .... but she said egpa does NOT affect the
Ok so now I'm back to where I was a year ago. Today was my third visit to the rheumatologist and I told her my symptoms seem to be returning since tapering down to only three mg of prednizone. My head feels loopy and I have dizziness and weird visual things .... but she said egpa does NOT affect the
Cathywp
in
Vasculitis UK
6 years ago
In Memory of Prof Paul Bacon - an early pioneer for Vasculitus
In Memory of Prof Paul Bacon , an early pioneer for Vasculitis , please take a moment to read about Prof Bacon who did so much not only to support patients diagnosed with Vasculitis and doctors who have an interest in Vasculitis but for vasculitis research too. I had the pleasure of meeting Prof Bacon
In Memory of Prof Paul Bacon , an early pioneer for Vasculitis , please take a moment to read about Prof Bacon who did so much not only to support patients diagnosed with Vasculitis and doctors who have an interest in Vasculitis but for vasculitis research too. I had the pleasure of meeting Prof Bacon
Suzym2u
Vasculitis UK
in
Vasculitis UK
6 years ago
Proof of vasculitis
This is probably a silly question but .... How would I know if I have vasculitis if my ANCA panel always is negative? Is there anything other than a biopsy of a vein to confirm vasculitis? I have no rash. Are there any symptoms that prove it? Thanks Cathy
This is probably a silly question but .... How would I know if I have vasculitis if my ANCA panel always is negative? Is there anything other than a biopsy of a vein to confirm vasculitis? I have no rash. Are there any symptoms that prove it? Thanks Cathy
Cathywp
in
Vasculitis UK
6 years ago
Reducing prednisolone
Hi sorry another question. My husband has GPA and is reducing his prednisolone to 5mgs this week from 7.5 mgs. He is in drug induced remission. What is the prednisone doing at the moment? And is it reduced slowly so his body begins to make its own or does it keep the vasculitis under control as well
Hi sorry another question. My husband has GPA and is reducing his prednisolone to 5mgs this week from 7.5 mgs. He is in drug induced remission. What is the prednisone doing at the moment? And is it reduced slowly so his body begins to make its own or does it keep the vasculitis under control as well
Main1234
in
Vasculitis UK
6 years ago
My story so far....
I was diagnosed with Normocomplementaric
Urticarial
Vasculitis
in November '17 after 6 months of going backwards and forwards to my GP who didn't really have a clue what to do with me!
I was diagnosed with Normocomplementaric
Urticarial
Vasculitis
in November '17 after 6 months of going backwards and forwards to my GP who didn't really have a clue what to do with me!
Ccwalker
in
Vasculitis UK
6 years ago
Peripheral Vision Loss
Does any one have peripheral vision loss; not related to Glaucoma or any other eye disease but from ET?? Thanks for your thoughts, Ellen
Does any one have peripheral vision loss; not related to Glaucoma or any other eye disease but from ET?? Thanks for your thoughts, Ellen
EllenKay67
in
MPN Voice
6 years ago
57 Years old Female with a lifetime worth of Behçet's Symptoms
I just wanted to say hello & say I feel blessed now to have found this group. I have been alone with this Behçet's since childhood, no support network, homeless, unfathomably abused in every way, shape & form, sold on the streets from infancy to teenagehood by the Woman who carried me for 9 months.
I just wanted to say hello & say I feel blessed now to have found this group. I have been alone with this Behçet's since childhood, no support network, homeless, unfathomably abused in every way, shape & form, sold on the streets from infancy to teenagehood by the Woman who carried me for 9 months.
Diamolynn
in
Behçet's UK
7 years ago
CBD Oil
Just wondered if anyone has tried CBD oil for vasculitis pain Just wondering if anyone has tried CBD oil for vasculitis pain - have been struggling for 4 years now. Doctor says the nerves are regenerating, but goodness, the pain. I take pregabalin but don't want to up the
Just wondered if anyone has tried CBD oil for vasculitis pain Just wondering if anyone has tried CBD oil for vasculitis pain - have been struggling for 4 years now. Doctor says the nerves are regenerating, but goodness, the pain. I take pregabalin but don't want to up the
RareStap
in
Vasculitis UK
7 years ago
EMA Accepts Conditional Application for ANCA Treatment Avacopan
I suffer from MPA and am currently on my third year of 6 monthly infusions of Rituximab + Prednisolone after an unsuccessful year of Cyclophosphamide. This keeps the worst of my symptoms largely at bay though they still grumble away in the background. Does anyone know if Avacopan, when/if approved,
I suffer from MPA and am currently on my third year of 6 monthly infusions of Rituximab + Prednisolone after an unsuccessful year of Cyclophosphamide. This keeps the worst of my symptoms largely at bay though they still grumble away in the background. Does anyone know if Avacopan, when/if approved,
amms43
in
Vasculitis UK
7 years ago
Early retirement because of Cerebral Vasculitis
Hi, my husband's suffers from Cerebral Vasculitis and is under cyclo infusion. He had a relapsed at work and fainted ! Now they will not allow him back at work until he sees the work OT regardless of GP signing him back to work note. He is stressed about it and not sure he should retire. Any advice for
Hi, my husband's suffers from Cerebral Vasculitis and is under cyclo infusion. He had a relapsed at work and fainted ! Now they will not allow him back at work until he sees the work OT regardless of GP signing him back to work note. He is stressed about it and not sure he should retire. Any advice for
elves
in
Vasculitis UK
7 years ago
Concern
I have ANCA Vasculitis but in remission at the moment and having Rituximab every 6 months.I also have Stage3/4 CKD but this last day am now passing blood and wondered if anybody has experienced the same.
I have ANCA Vasculitis but in remission at the moment and having Rituximab every 6 months.I also have Stage3/4 CKD but this last day am now passing blood and wondered if anybody has experienced the same.
Keithtim10
in
Vasculitis UK
7 years ago
Newly diagnosed. Needing help please.
I'm newly diagnosed with chronic idiopathic urticaria, leukocytoclastic
urticarial
vasculitis
and cold urticaria. I'm on Ozalimutab, Lukair, 4 different types of antihistamines, ranitidine for another effect on the urticaria.
I'm newly diagnosed with chronic idiopathic urticaria, leukocytoclastic
urticarial
vasculitis
and cold urticaria. I'm on Ozalimutab, Lukair, 4 different types of antihistamines, ranitidine for another effect on the urticaria.
Bibi77
in
Vasculitis UK
7 years ago
Vasculitis UK Website Google Analytics for November 30th to December 30th 2017 ( For those with an interest )
Nov 30th - Dec 30th 2017 23,413 Users 46,908 Pages Viewed Average time - 2 mins viewing 75% Revisiting 25% New visitors Top 5 Diseases Viewed EGPA ( Churg Strauss Syndrome ) HSP ( Henoch Schonlein Purpura ) Uticarial Vasculitis GPA ( Wegeners Granulomatosis ) GCA ( Giant Cell Arteritis ) Top 5 None
Nov 30th - Dec 30th 2017 23,413 Users 46,908 Pages Viewed Average time - 2 mins viewing 75% Revisiting 25% New visitors Top 5 Diseases Viewed EGPA ( Churg Strauss Syndrome ) HSP ( Henoch Schonlein Purpura ) Uticarial Vasculitis GPA ( Wegeners Granulomatosis ) GCA ( Giant Cell Arteritis ) Top 5 None
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Diagnosed with Urticarial Vasculitis
Hi I am new to the board. I have been diagnosed with UV last month. Started on a high dose of prednisone. I don’t know what to expect. I am concerned that I won’t be able to live a normal life. Can anyone who has UV please give me some hope.
Hi I am new to the board. I have been diagnosed with UV last month. Started on a high dose of prednisone. I don’t know what to expect. I am concerned that I won’t be able to live a normal life. Can anyone who has UV please give me some hope.
Kareyc
in
Vasculitis UK
7 years ago
Azathioprine for PACNS?
Last month I was diagnosed with PACNS, or Primary CNS Vasculitis. I've been taking daily prednisone and the plan was for monthly infusions of Cytoxan. When I visited my rheumatologist this month, he recommended switching to daily Azathioprine instead of the Cytoxan. I've only had one infusion of the
Last month I was diagnosed with PACNS, or Primary CNS Vasculitis. I've been taking daily prednisone and the plan was for monthly infusions of Cytoxan. When I visited my rheumatologist this month, he recommended switching to daily Azathioprine instead of the Cytoxan. I've only had one infusion of the
Cunafish
in
Vasculitis UK
7 years ago
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