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Experiences with
Cerebral vasculitis
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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
6 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
6 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
6 years ago
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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
6 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
6 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
Feeling sore on hydroxychloroquine
Hello, I’ve been on a reduced dose of hydroxy for urticarial vasculitis for a couple of months and am working up to a full dose. However I’ve started to feel really sore under the skin and have a throbbing head and a sore stomach. It just generally doesn’t make me feel good and a bit tired. Has anyone
Hello, I’ve been on a reduced dose of hydroxy for urticarial vasculitis for a couple of months and am working up to a full dose. However I’ve started to feel really sore under the skin and have a throbbing head and a sore stomach. It just generally doesn’t make me feel good and a bit tired. Has anyone
phoebe-18
in
Vasculitis UK
6 years ago
Recommendations for ANCA vasculitis specialists near London?
Hi all, I'm fairly new to the whole vasculitis thing and am still going through the motions in order to get a diagnosis. I have already seen respiratory, ENT and immunology consultants, and they strongly suspect I have either EPGA or GPA based on blood results and CT scans but as this is quite a niche
Hi all, I'm fairly new to the whole vasculitis thing and am still going through the motions in order to get a diagnosis. I have already seen respiratory, ENT and immunology consultants, and they strongly suspect I have either EPGA or GPA based on blood results and CT scans but as this is quite a niche
citygirl1234
in
Vasculitis UK
6 years ago
Aortitis, now might have to start cyclophosphamide
Hi everyone, I was diagnosed with aortitis in Dec 2015 and have been taking prednisolone and mycophenolate for this. My consultant wants me to think about possibly starting cyclophosphamide, as my inflammatory markers have stuck for some time now at around 10-13 and I still feel exhausted etc. I didnt
Hi everyone, I was diagnosed with aortitis in Dec 2015 and have been taking prednisolone and mycophenolate for this. My consultant wants me to think about possibly starting cyclophosphamide, as my inflammatory markers have stuck for some time now at around 10-13 and I still feel exhausted etc. I didnt
Suzycat
in
Vasculitis UK
6 years ago
LABORATORY RESULTS VARY BY LAB
My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without any other inflammatory markers. He had his blood drawing technician make a blood smear on slides which were sent to different labs. As I understand it these slides are prepared for human microscopists to read. The results
My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without any other inflammatory markers. He had his blood drawing technician make a blood smear on slides which were sent to different labs. As I understand it these slides are prepared for human microscopists to read. The results
Christophene47
in
Vasculitis UK
6 years ago
Research Study - Survey Regarding Discontinuing Immune Suppression in ANCA Vasculitis
Discontinuing Immune Suppression in ANCA Vasculitis Suppression of the body’s immune system is at the heart of modern treatment for ANCA vasculitis. But whereas stopping treatment carries the risk of relapse, being immune suppressed carries the risk of infection and other problems. In cases where there
Discontinuing Immune Suppression in ANCA Vasculitis Suppression of the body’s immune system is at the heart of modern treatment for ANCA vasculitis. But whereas stopping treatment carries the risk of relapse, being immune suppressed carries the risk of infection and other problems. In cases where there
John_Mills
Vasculitis UK
in
Vasculitis UK
6 years ago
suffering from Wegener granulomatosis ,Had 2nd infusion of retuximab but still having haeavyness in foot,&pain?
had retuximab 15days before but still having foot heaviness and pain in foot. not able to walk properly. tired of this pain when this pain stop? continues pain in both foot from last 8to 9 months. please sujjest when this cycle is stop?
had retuximab 15days before but still having foot heaviness and pain in foot. not able to walk properly. tired of this pain when this pain stop? continues pain in both foot from last 8to 9 months. please sujjest when this cycle is stop?
sam05
in
Vasculitis UK
6 years ago
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