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Experiences with
Urticarial vasculitis
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Left Rheumatologist appointment in floods of tears! Support needed :(
Hi there, in December last year my Dermatologist diagnosed me with
urticarial
vasculitis
and clinical subacute cutaneous lupus and I started on Hydroxychloroquine.
Hi there, in December last year my Dermatologist diagnosed me with
urticarial
vasculitis
and clinical subacute cutaneous lupus and I started on Hydroxychloroquine.
Apple86
in
LUPUS UK
5 years ago
Flu jab
I have GPA and just finished my course of cyclophosphamide. Feeling a lot better now. Just started Azathioprine which is being increased. I would like to know if it is recommended to have the dead flu virus injection? Thank you
I have GPA and just finished my course of cyclophosphamide. Feeling a lot better now. Just started Azathioprine which is being increased. I would like to know if it is recommended to have the dead flu virus injection? Thank you
brown136
in
Vasculitis UK
5 years ago
Anyone on Otezla?
I recently went to Mayo for a 3rd opinion. I was diagnosed with BD about 5 years ago and have been on 1G Cellcept for about 4 years now. I have very low symptoms. The one that has been the most annoying has been in my legs. I have knots that come up like they are going to turn into erythema nodosum then
I recently went to Mayo for a 3rd opinion. I was diagnosed with BD about 5 years ago and have been on 1G Cellcept for about 4 years now. I have very low symptoms. The one that has been the most annoying has been in my legs. I have knots that come up like they are going to turn into erythema nodosum then
Miataman
in
Behçet's UK
5 years ago
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Guidance needed!
Hi there, I was diagnosed in December last year with subacute cutainious Lupus Erythematosus, and
Urticarial
vasculitis
. I was prescribed Hydroxychloroquin which seemed to make my symptoms worse and so stopped taking them.
Hi there, I was diagnosed in December last year with subacute cutainious Lupus Erythematosus, and
Urticarial
vasculitis
. I was prescribed Hydroxychloroquin which seemed to make my symptoms worse and so stopped taking them.
Apple86
in
LUPUS UK
5 years ago
Help needed new here
been suffering with strange symptoms for 16 months. It all started with a buzzing in my feet which quickly travelled up my legs as akind of parasthesia. Shortly after fasiculations started initially in my legs but now all over. My worst problem is muscle cramping almost like a spasticity in my upper
been suffering with strange symptoms for 16 months. It all started with a buzzing in my feet which quickly travelled up my legs as akind of parasthesia. Shortly after fasiculations started initially in my legs but now all over. My worst problem is muscle cramping almost like a spasticity in my upper
audreypamela
in
LUPUS UK
5 years ago
Can Prolia trigger vasculitis
I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
Corcaigh
in
Vasculitis UK
5 years ago
Azathioprine
Can I have your experiences of this drug please? My rheumy wants me to start this (as soon as my blood tests come back to show I’m healthy enough 😳) and I just don’t know...The side effects look daunting and it’s a carcinogen too? I feel like I’m damned if I do, damned if I don’t.
Can I have your experiences of this drug please? My rheumy wants me to start this (as soon as my blood tests come back to show I’m healthy enough 😳) and I just don’t know...The side effects look daunting and it’s a carcinogen too? I feel like I’m damned if I do, damned if I don’t.
DaftCat
in
LUPUS UK
5 years ago
Cerebral Vasculitis to Vasculitis Dementia
I’ve had Cerebral Vasculitis which has now been in remission for 10yrs and still have memory problems but I’m becoming confused and it’s harder to organise anything things. I still have the occasional petit-mal seizure and I’m only going to out if I know I can get to a toilet quickly and that’s due to
I’ve had Cerebral Vasculitis which has now been in remission for 10yrs and still have memory problems but I’m becoming confused and it’s harder to organise anything things. I still have the occasional petit-mal seizure and I’m only going to out if I know I can get to a toilet quickly and that’s due to
phil3
in
Vasculitis UK
5 years ago
Syncope
I have hypocomplementemic
Urticarial
Vasculitis
. I recently have had episodes of syncope and uncontrollable hypertension. I can’t stand up for very long or walk very far without extreme shortness of breath and getting dizzy. The doctors are having a hard time figuring this out.
I have hypocomplementemic
Urticarial
Vasculitis
. I recently have had episodes of syncope and uncontrollable hypertension. I can’t stand up for very long or walk very far without extreme shortness of breath and getting dizzy. The doctors are having a hard time figuring this out.
lopiper
in
Vasculitis UK
5 years ago
Central lines?
What is the best line for vasculitis patients : Central line , portacath , Picc line , proline ??? Anyone have extremely difficult cannulation ?
What is the best line for vasculitis patients : Central line , portacath , Picc line , proline ??? Anyone have extremely difficult cannulation ?
samakaaaa
in
Vasculitis UK
5 years ago
Vasculitis & heart problems
Hi everyone Ive recently been diagnosed with atrial tachycardia following an EPS so waiting for an ablation. I also have ANCA associated vasculitis which was diagnosed nearly a year ago.. still trying to find the right meds to control my horrible symptoms. Up until 3 years ago I was a fit and healthy
Hi everyone Ive recently been diagnosed with atrial tachycardia following an EPS so waiting for an ablation. I also have ANCA associated vasculitis which was diagnosed nearly a year ago.. still trying to find the right meds to control my horrible symptoms. Up until 3 years ago I was a fit and healthy
Mish-da
in
Vasculitis UK
5 years ago
First Rituximab Infusion
Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when
Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when
russellk3
in
Vasculitis UK
5 years ago
Inspiration
I thought I would like to share the following and welcome people's comments.I briefly was diagnosed with ANCA (formerly Wegeners) Vasculitis which has left me with CKD Stage 3 in 2015 and since then I have been through numerous medications including Plasma Exchange and Chemo,Rituximab and various drugs.I
I thought I would like to share the following and welcome people's comments.I briefly was diagnosed with ANCA (formerly Wegeners) Vasculitis which has left me with CKD Stage 3 in 2015 and since then I have been through numerous medications including Plasma Exchange and Chemo,Rituximab and various drugs.I
Keithtim10
in
Vasculitis UK
5 years ago
Has anyone experienced osteonecrosis of the hip?
Hello, friends! Due to several rounds of prednisone over the last 8 years and numerous injections in joints including the hip, I believe I have developed osteonecrosis of my left hip. Some days it is so painful that I can't put weight on it. Some days I have to walk with a limp. And other days, it
Hello, friends! Due to several rounds of prednisone over the last 8 years and numerous injections in joints including the hip, I believe I have developed osteonecrosis of my left hip. Some days it is so painful that I can't put weight on it. Some days I have to walk with a limp. And other days, it
shareasmile
in
LUPUS UK
5 years ago
C-ANCA PR3 readings
Hi Everybody, I have no symptoms of anything and feel pretty good. As part of my diabetes management I have regular blood tests. For the last couple of years of always returned a positive C-ANCA PR3 with the last reading 6.6 at a titre of 40. The one before was 5.8 at a titre of 20. The immunologist
Hi Everybody, I have no symptoms of anything and feel pretty good. As part of my diabetes management I have regular blood tests. For the last couple of years of always returned a positive C-ANCA PR3 with the last reading 6.6 at a titre of 40. The one before was 5.8 at a titre of 20. The immunologist
croc099
in
Vasculitis UK
5 years ago
Vasulitis or Behcet’s
My Brother in law is suffering from auto immune disease Doctors say it’s is cerebral vasculitis as it has affected his brain now. Initially he has loss in vision around 1 year back. His vision is almost lost now and problem in walking . He also forget people and things. MRI shows clotting in brain.
My Brother in law is suffering from auto immune disease Doctors say it’s is cerebral vasculitis as it has affected his brain now. Initially he has loss in vision around 1 year back. His vision is almost lost now and problem in walking . He also forget people and things. MRI shows clotting in brain.
Ashvini
in
Behçet's UK
5 years ago
Not vasculitis
Hi I wrote a post earlier this year about a rash on my legs my gp told me it was vasculitis, and referred me to a dermatologist who I actually saw on Thursday. He told me it looks more like capplaritis ( don’t know if that’s the right spelling ) That I would have to wear support socks while at work
Hi I wrote a post earlier this year about a rash on my legs my gp told me it was vasculitis, and referred me to a dermatologist who I actually saw on Thursday. He told me it looks more like capplaritis ( don’t know if that’s the right spelling ) That I would have to wear support socks while at work
2stents
in
Vasculitis UK
5 years ago
Incontinence and cerebral/CNS vasculitis
I just posted something on my own personal Facebook wall, and thought I should post something here too. I have cerebral vasculitis, for 25 years this year, falling ill in 1994 aged just 22. One of my longest symptoms is severe bladder incontinence, from the brain damage - my brain can’t control my bladder
I just posted something on my own personal Facebook wall, and thought I should post something here too. I have cerebral vasculitis, for 25 years this year, falling ill in 1994 aged just 22. One of my longest symptoms is severe bladder incontinence, from the brain damage - my brain can’t control my bladder
vivdunstan
Volunteer
in
Vasculitis UK
5 years ago
Vasculitis, Renal and Respiratory Training Day - Imperial College London
On Wednesday of this week John and myself, spent the day with around 100 doctors on a Vasculitis, renal and respiratory training day at Imperial College London. It’s the first training day of this type to be held in London. The very first training day was held in Manchester back in May. ( see previous
On Wednesday of this week John and myself, spent the day with around 100 doctors on a Vasculitis, renal and respiratory training day at Imperial College London. It’s the first training day of this type to be held in London. The very first training day was held in Manchester back in May. ( see previous
Suzym2u
Vasculitis UK
in
Vasculitis UK
5 years ago
Vasculitis UK represented at the Royal College for Nursing Congress 2019 in Liverpool
One with IgA
Vasculitis
, one with Granulomatosis with Polyangiitis and one with
Urticarial
Vasculitis
. They were so impressed to see us at the Congress. There will be a full write up in the Autumn 2019 VUK newsletter
One with IgA
Vasculitis
, one with Granulomatosis with Polyangiitis and one with
Urticarial
Vasculitis
. They were so impressed to see us at the Congress. There will be a full write up in the Autumn 2019 VUK newsletter
Suzym2u
Vasculitis UK
in
Vasculitis UK
5 years ago
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