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Cerebral vasculitis
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Infusion
Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?
Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?
Cool_blue
in
Behçet's UK
5 years ago
Getting a diagnosis
Hi All, I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the
Hi All, I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the
Milo00
in
Vasculitis UK
5 years ago
1st dose of Rituximab
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little tired and as my line manager just refuses to listen properly and understand what exactly is going on with me and the fact he kept asking me if I'll definitely be
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little tired and as my line manager just refuses to listen properly and understand what exactly is going on with me and the fact he kept asking me if I'll definitely be
Hidden
in
LUPUS UK
5 years ago
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cyclophosphamide infusion - side effects / experiences ?
Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the infusion ? Dizziness, fatigue, confusion, sleepless nights, weak legs... ? Do I need to be prepared to be bed bound for the next couple of days ?
Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the infusion ? Dizziness, fatigue, confusion, sleepless nights, weak legs... ? Do I need to be prepared to be bed bound for the next couple of days ?
Hika
in
LUPUS UK
5 years ago
Confused!
Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis. I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets
Hi... My disease was diagnosed in September 2017. I had rashes and terrible swelling on my legs and ankles. I was taken to a rheumatologist. Biopies revealed that I was (am) suffering from leukocytoclastic vasculitis. I was given prednisolone, azathioprine, methotrexate, alphacalcidol, vitamin tablets
shanahamza
in
Vasculitis UK
5 years ago
Advice please
Hi, I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this
Hi, I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this
Georgie-girl
in
Vasculitis UK
5 years ago
P anca positive with mpo negative
Hi, I need some help and kind words as I’m losing my mental stability. I had tender spots on my left arm and hand with mild kind of pain for Six months off and on. Quite manageable. But I was just curious and asked my family doctor. She jumped the gun and got me anca test done. It came out positive P
Hi, I need some help and kind words as I’m losing my mental stability. I had tender spots on my left arm and hand with mild kind of pain for Six months off and on. Quite manageable. But I was just curious and asked my family doctor. She jumped the gun and got me anca test done. It came out positive P
Treadmills
in
Vasculitis UK
5 years ago
Signs of improving reading ability (living with cerebral vasculitis)
I've just blogged about improvements I'm currrently detecting in my ability to read print, which has been severely hampered since I fell ill with
cerebral
vasculitis
in 1994. Anyway it may be of interest to folks here.
I've just blogged about improvements I'm currrently detecting in my ability to read print, which has been severely hampered since I fell ill with
cerebral
vasculitis
in 1994. Anyway it may be of interest to folks here.
vivdunstan
Volunteer
in
Vasculitis UK
5 years ago
Study suggests Azathioprine may increase risk of relapse in some AAV patients.
Has anyone else read this study that says 1 in 10 AAV patients are hypersensitive to Azathioprine, which manifests as whole body inflammation, joint pain, and general feeling of malaise, which may increase the risk of relapse. I came off Azathioprine because it was wiping out my white blood cells and
Has anyone else read this study that says 1 in 10 AAV patients are hypersensitive to Azathioprine, which manifests as whole body inflammation, joint pain, and general feeling of malaise, which may increase the risk of relapse. I came off Azathioprine because it was wiping out my white blood cells and
Slem2
in
Vasculitis UK
5 years ago
EMG Test?
Hi All, I saw my vasculitis consultant today who discovered that the tops of my hands and feet don't seem to be quite as sensitive as they perhaps should be and has referred me for an EMG test and I was wondering if any of you have had one before and what I should expect? He said this might involve some
Hi All, I saw my vasculitis consultant today who discovered that the tops of my hands and feet don't seem to be quite as sensitive as they perhaps should be and has referred me for an EMG test and I was wondering if any of you have had one before and what I should expect? He said this might involve some
citygirl1234
in
Vasculitis UK
5 years ago
Can ANCA INDUCED VASCULITIS CAUSE EAR PROBLEMS
I was recently diagnosed as having this condition and today my left ear started to feel like it was closing up on the inside as it heated up and began to get swollen and since then it hasn't gone away and the pain in my ear is almost unbearable if any one has anything on this please share thank tou
I was recently diagnosed as having this condition and today my left ear started to feel like it was closing up on the inside as it heated up and began to get swollen and since then it hasn't gone away and the pain in my ear is almost unbearable if any one has anything on this please share thank tou
brnhoff
in
Vasculitis UK
5 years ago
Coping with a vasculitis relapse
This is prompted by a post earlier today in the CNS/
cerebral
vasculitis
Facebook group. I’ve dealt with this myself. Fell ill in 1994 aged 22, diagnosed with
cerebral
vasculitis
in 1997. Stabilised with initial treatment. Then relapsed badly in 2004.
This is prompted by a post earlier today in the CNS/
cerebral
vasculitis
Facebook group. I’ve dealt with this myself. Fell ill in 1994 aged 22, diagnosed with
cerebral
vasculitis
in 1997. Stabilised with initial treatment. Then relapsed badly in 2004.
vivdunstan
Volunteer
in
Vasculitis UK
6 years ago
Another Challenge
Have had CT head which showed some small vessel disease, seen a neurologist who feels I have rheumatoid
cerebral
vasculitis
, had an MRI and blood tests and am awaiting review at the end of the month. Last week I had an episode where I felt dizzy,faint,fevers and tremors and I thought I was "Going".
Have had CT head which showed some small vessel disease, seen a neurologist who feels I have rheumatoid
cerebral
vasculitis
, had an MRI and blood tests and am awaiting review at the end of the month. Last week I had an episode where I felt dizzy,faint,fevers and tremors and I thought I was "Going".
cris1728
in
NRAS
6 years ago
Stay positive and you can get though it
In 1999 I came down with
Cerebral
Vasculitis
. Can’t remember the level of the medications that I originally was on but it was a high dose of Prednisolone and Cyclophosphamide and Valproate.
In 1999 I came down with
Cerebral
Vasculitis
. Can’t remember the level of the medications that I originally was on but it was a high dose of Prednisolone and Cyclophosphamide and Valproate.
phil3
in
Vasculitis UK
6 years ago
Finally a diagnosis we think
I recently went for a follow up with my neurologist. I think the last time I posted I had just been diagnosed with RRMS. After further testing and another doctor I think we finally have a diagnosis. I saw a new doc yes another specialist this time a neroimmunologist. He saw me at the request of my
I recently went for a follow up with my neurologist. I think the last time I posted I had just been diagnosed with RRMS. After further testing and another doctor I think we finally have a diagnosis. I saw a new doc yes another specialist this time a neroimmunologist. He saw me at the request of my
I814u24u
in
LUPUS UK
6 years ago
Eye issues
Hi. My eye sight has been coming and going but settled on worse than my normal. My opthmalogist ran me through all of the normal tests for Behcet’s. My retinas are good. My eyes are healthy. He’s concerned it’s vasculitis of optic nerves. In addition I’ve had a whole bunch of other neuro issues. My neurologist
Hi. My eye sight has been coming and going but settled on worse than my normal. My opthmalogist ran me through all of the normal tests for Behcet’s. My retinas are good. My eyes are healthy. He’s concerned it’s vasculitis of optic nerves. In addition I’ve had a whole bunch of other neuro issues. My neurologist
Lovingdragonflies
in
Behçet's UK
6 years ago
Cns vasculitis /ritmixuhib
Hi. I was diagnosed with cns vasculitis in 2015 after I had at least 2 strokes, I was then took to Walton after Dr Holt took on my case. I was put on steroids and methotrexate but did not tolerate it very well and I had a flare up approx a year later which resulted in my vision going. I then had 6 pulses
Hi. I was diagnosed with cns vasculitis in 2015 after I had at least 2 strokes, I was then took to Walton after Dr Holt took on my case. I was put on steroids and methotrexate but did not tolerate it very well and I had a flare up approx a year later which resulted in my vision going. I then had 6 pulses
arny12
in
Vasculitis UK
6 years ago
Coping Strategies for Waiting to be Seen
Hi all, I was diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing / vasculitis being suspected and am waiting to be seen by rheumatology to start immunosuppressive treatment. Those of you who were not in hospital when you were treated by rheumatology for vasculitis
Hi all, I was diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing / vasculitis being suspected and am waiting to be seen by rheumatology to start immunosuppressive treatment. Those of you who were not in hospital when you were treated by rheumatology for vasculitis
citygirl1234
in
Vasculitis UK
6 years ago
Looking for advice please
Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum
Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum
Lisagill
in
LUPUS UK
6 years ago
Seizures
Hi My husband had
Cerebral
Vasculitis
5 years ago, and now has had two tonic chlonic seizures. We are needing to find some kind of alarm system which he can wear and can activate if he's on his own and about to have a seizure, does anyone have any experience in finding such a device?
Hi My husband had
Cerebral
Vasculitis
5 years ago, and now has had two tonic chlonic seizures. We are needing to find some kind of alarm system which he can wear and can activate if he's on his own and about to have a seizure, does anyone have any experience in finding such a device?
Simmonds797
in
Vasculitis UK
6 years ago
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