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Cerebral vasculitis
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New and in limbo
Hi, I just been diagnosed with urticarial vasculitis after a biopsy and am now waiting for more blood test results. Feeling as if I'm in limbo at the moment as I'm new to all this.
Hi, I just been diagnosed with urticarial vasculitis after a biopsy and am now waiting for more blood test results. Feeling as if I'm in limbo at the moment as I'm new to all this.
Boudica1
in
Vasculitis UK
7 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
7 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
7 years ago
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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
7 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
7 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
7 years ago
Has my daughter got cerebral vasculitis? Google 'Girl with mystery illness' photos & illness description were in newspapers Nov 2016
Originally thought to have suspected seronegative autoimmune encephalitis, has my daughter got
cerebral
vasculitis
?
Originally thought to have suspected seronegative autoimmune encephalitis, has my daughter got
cerebral
vasculitis
?
Vickysmum
in
Vasculitis UK
7 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
7 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
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
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
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
Glacially slow tapering continuing
Normally
vasculitis
patients can drop much better. But my
cerebral
vasculitis
isn't playing nicely, even though high dose Cyclophosphamide infusions in hospital in summer 2012 did give it a firm slap! I've been on steroids permanently since 1998, so 20 years.
Normally
vasculitis
patients can drop much better. But my
cerebral
vasculitis
isn't playing nicely, even though high dose Cyclophosphamide infusions in hospital in summer 2012 did give it a firm slap! I've been on steroids permanently since 1998, so 20 years.
vivdunstan
Volunteer
in
Vasculitis UK
7 years ago
Lost in the world of Vasculitis
I’m a newbie on here and to be honest to the whole world of Vasculitis. My dad has diagnosed with Vasculitis back in October when he was admitted to hospital with kidney failure, we embarked on the most horrendous journey of our lives, dad was given dialysis and then started on plasma exchange. He seemed
I’m a newbie on here and to be honest to the whole world of Vasculitis. My dad has diagnosed with Vasculitis back in October when he was admitted to hospital with kidney failure, we embarked on the most horrendous journey of our lives, dad was given dialysis and then started on plasma exchange. He seemed
Louloulou40
in
Vasculitis UK
7 years ago
WEIRD SKIN SENSATION
I`ve not been on for a while. My vasculitis seems to be under control. But I wonder if anyone can help. I seem to be loosing the sensation on my skin on my left side leg. I have an appointment to have a nerve test in January. It seems the be affecting my arm and also my face feels weird this morning.
I`ve not been on for a while. My vasculitis seems to be under control. But I wonder if anyone can help. I seem to be loosing the sensation on my skin on my left side leg. I have an appointment to have a nerve test in January. It seems the be affecting my arm and also my face feels weird this morning.
Lucywhiton
in
Vasculitis UK
7 years ago
What do you think are the unmet needs in Vasculitis?
Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. We meet twice a year for business meetings and also the Lockwood Club to share challenging cases, present new research etc. The next meeting is in January and the theme is " Unmet needs in Vasculitis ". The proposal is
Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. We meet twice a year for business meetings and also the Lockwood Club to share challenging cases, present new research etc. The next meeting is in January and the theme is " Unmet needs in Vasculitis ". The proposal is
Hidden
in
Vasculitis UK
7 years ago
Increase in Lupus Symptoms
I was diagnosed in 2006 and for 2-3 year's it was quite rough. But then after getting rituximab infusion i was pretty much back to normal up until now 😞😞 in 2010 i had the infusion and been doing well for 7 year's. I still had random stomach upsets, GI problems, Migraines etc. About a month or two
I was diagnosed in 2006 and for 2-3 year's it was quite rough. But then after getting rituximab infusion i was pretty much back to normal up until now 😞😞 in 2010 i had the infusion and been doing well for 7 year's. I still had random stomach upsets, GI problems, Migraines etc. About a month or two
LifeAsALupie
in
LUPUS UK
7 years ago
GPA sufferer seeking financial advice
Hi, I am 49 years old and have been battling with GPA for 2 and a half years now and despite all the steroids, 16 pulses cyclophosphamide, 8 lots of retuximab and all of the other drugs, operations etc I am still ANCA positive. My consultant at Addenbrookes is still confident that remission can be achieved
Hi, I am 49 years old and have been battling with GPA for 2 and a half years now and despite all the steroids, 16 pulses cyclophosphamide, 8 lots of retuximab and all of the other drugs, operations etc I am still ANCA positive. My consultant at Addenbrookes is still confident that remission can be achieved
nicholson27
in
Vasculitis UK
7 years ago
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