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Cerebral vasculitis
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cyclophosphamide
Been to see Consultant today with my daughter of 12 years old thing haven't got worse but no better too she's on cyclophosphamide infusion every 3 weeks she's had 4 of these so far but nothings changed so far. Today her Consultant mentioned once again about her having a steroid injection straight into
Been to see Consultant today with my daughter of 12 years old thing haven't got worse but no better too she's on cyclophosphamide infusion every 3 weeks she's had 4 of these so far but nothings changed so far. Today her Consultant mentioned once again about her having a steroid injection straight into
shine78
in
Behçet's UK
8 years ago
start cellcept
hi my friends l have SLE For 13 years also I'm 30 now.I was taking 7.5 prednisone, hydroxyclorchin 200 untill 18 mounth ago after that my GP prescripted Azaitropin50 for me.i had Locopenia after 6 mounth of taking Azaitropin also I decriese that and I tooke day by day until now. Today my Gp stop Azaitropin
hi my friends l have SLE For 13 years also I'm 30 now.I was taking 7.5 prednisone, hydroxyclorchin 200 untill 18 mounth ago after that my GP prescripted Azaitropin50 for me.i had Locopenia after 6 mounth of taking Azaitropin also I decriese that and I tooke day by day until now. Today my Gp stop Azaitropin
asma1364
in
LUPUS UK
8 years ago
RV and Stroke
I have Rheumatoid Vasculitis, a byproduct of having Rheumatoid Arthritis, and suffered a mild stroke. There was no bleed on the brain, nor any furry arteries. They've said it was most likely stress, but I wonder whether having vasculitis and it affecting small blood vessels could have been a factor
I have Rheumatoid Vasculitis, a byproduct of having Rheumatoid Arthritis, and suffered a mild stroke. There was no bleed on the brain, nor any furry arteries. They've said it was most likely stress, but I wonder whether having vasculitis and it affecting small blood vessels could have been a factor
Wolf52
in
Vasculitis UK
8 years ago
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Some Vasculitis UK Website Google Annalytics, April 1st - May 1st 2016, to share for the first week of Vasculitis Awareness Month.
Urticarial
Vasculitis
Personal Stories/images Central Nervous System
Vasculitis
/
Cerebral
Vasculitis
Frequently Asked Questions
Urticarial
Vasculitis
Personal Stories/images Central Nervous System
Vasculitis
/
Cerebral
Vasculitis
Frequently Asked Questions
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Pan and vasculitis
so I just found out today I have systemic polyarteritis nodosa. Finally got in to an actual vasculitis center. Shocked to find out only 22 other people are diagnosed with pan in north America. And I think it was like 120 with another form of vasculitis. Dont know what to say but i appreciate this forum
so I just found out today I have systemic polyarteritis nodosa. Finally got in to an actual vasculitis center. Shocked to find out only 22 other people are diagnosed with pan in north America. And I think it was like 120 with another form of vasculitis. Dont know what to say but i appreciate this forum
greg31
in
Vasculitis UK
8 years ago
lynnj
Hi I'm new here - I was diagnosed with
cerebral
vasculitis
in Nov 2015. I have read a few posts but can only read for a short while everyone seems to know a lot more about their condition than I know about mine.
Hi I'm new here - I was diagnosed with
cerebral
vasculitis
in Nov 2015. I have read a few posts but can only read for a short while everyone seems to know a lot more about their condition than I know about mine.
Ljohn456
in
Vasculitis UK
8 years ago
Cannabis & Vasculiti
Cannabis oil, a controversial *treatment* that a few hundreds have tried and has had success where all other medication has proved unhelpful. I can't help but be disturbed by the idea the weakening the immune system is the only way to deal with so many diseases. I am as uncomfortable today and after
Cannabis oil, a controversial *treatment* that a few hundreds have tried and has had success where all other medication has proved unhelpful. I can't help but be disturbed by the idea the weakening the immune system is the only way to deal with so many diseases. I am as uncomfortable today and after
Jools52
in
Vasculitis UK
8 years ago
Primary cerebral vasculitis
I had the worst 5 month all my life.be on a life support mchine. They was going to switch mechine off.as I lost all movement from neck down.Just started to walk again.on 10 mg prednisolone of day.Just had Mir scan was clear. But still very dizzy and wired. Back in bed again.what can I do.
I had the worst 5 month all my life.be on a life support mchine. They was going to switch mechine off.as I lost all movement from neck down.Just started to walk again.on 10 mg prednisolone of day.Just had Mir scan was clear. But still very dizzy and wired. Back in bed again.what can I do.
beeryone
in
Vasculitis UK
8 years ago
It is Behcets Disease Awareness Day today
Behcets is an extremely rare type of Vasculitis - classified as a type of Vasculitis in 2012. It affects around 3,000 here in the UK. This is the page to the Vasculitis UK website explaining what Behcets Disease is. It is extremely difficult to diagnose and manage. http://www.vasculitis.org.uk/about-vasculitis
Behcets is an extremely rare type of Vasculitis - classified as a type of Vasculitis in 2012. It affects around 3,000 here in the UK. This is the page to the Vasculitis UK website explaining what Behcets Disease is. It is extremely difficult to diagnose and manage. http://www.vasculitis.org.uk/about-vasculitis
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Cns vasculitis
Got appointment for Lumber punture.Feeling emotional about it all.It's been 7 months of tests.And to think this test may either be the beginning or the end of it all.As if there is inflammation in the csf I have been advised about a angiogram to look at the brain. As they think I may have cns vasculitis.Which
Got appointment for Lumber punture.Feeling emotional about it all.It's been 7 months of tests.And to think this test may either be the beginning or the end of it all.As if there is inflammation in the csf I have been advised about a angiogram to look at the brain. As they think I may have cns vasculitis.Which
Hidden
in
Vasculitis UK
8 years ago
The newly elected ePAG (European Patient Advocacy Group) patient representatives have now been announced
This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe. 😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation
This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe. 😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Google Analytics for the VUK Website for Vasculitis Awareness Month April 30th - May 30th 2016
/FAQ Living With/ Diet Giant Cell Arteritis
Cerebral
Vascu
/FAQ Living With/ Diet Giant Cell Arteritis
Cerebral
Vascu
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Ongoing weight loss success
I have
cerebral
vasculitis
, since 1994, when I first fell ill at age 22.
I have
cerebral
vasculitis
, since 1994, when I first fell ill at age 22.
vivdunstan
Volunteer
in
Vasculitis UK
8 years ago
Osteonecrosis and other rare bone diseases
Hello Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury
Hello Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury
mickeymouse42
in
LUPUS UK
8 years ago
Exactly 4 years since a big decision
It's 4 years exactly since I had to stop the Thalidomide treatment for my
cerebral
vasculitis
, because it was causing peripheral nerve damage, which if not reacted to fast is permanent and irreversible.
It's 4 years exactly since I had to stop the Thalidomide treatment for my
cerebral
vasculitis
, because it was causing peripheral nerve damage, which if not reacted to fast is permanent and irreversible.
vivdunstan
Volunteer
in
Vasculitis UK
8 years ago
Primary angiitis
Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next
Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next
Hidden
in
Vasculitis UK
8 years ago
Primary angiitis
Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just received appointment to see him again in December.So I am thinking it's not serious.Or will the hospital that I am having it done at relay results,as
Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just received appointment to see him again in December.So I am thinking it's not serious.Or will the hospital that I am having it done at relay results,as
Hidden
in
MPN Voice
8 years ago
Mrs
I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially
I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially
Carriacou1937
in
Vasculitis UK
8 years ago
Cerebral vasculitis
My 81 year old dad has just been diagnosed with
cerebral
vasculitis
and I dont see a lot about it on the Internet. Any idea on things like driving again after an episode and recovery time? Symptoms similar to other posts here started 3 months ago and he has been in hospital for 4 weeks.
My 81 year old dad has just been diagnosed with
cerebral
vasculitis
and I dont see a lot about it on the Internet. Any idea on things like driving again after an episode and recovery time? Symptoms similar to other posts here started 3 months ago and he has been in hospital for 4 weeks.
Tazzi22
in
Vasculitis UK
8 years ago
Vasculitis Specialist
Hi all, I wonder if anyone can tell me who would be our nearest Vasculitis Specialist for Microscopic Polyangiitis in the Dundee area please? At present my Mum sees a Renal specialist who we have no complaints about but I think it might be valuable for her to see a Vasculitis Specialist?? Also how would
Hi all, I wonder if anyone can tell me who would be our nearest Vasculitis Specialist for Microscopic Polyangiitis in the Dundee area please? At present my Mum sees a Renal specialist who we have no complaints about but I think it might be valuable for her to see a Vasculitis Specialist?? Also how would
SandraMic
in
Vasculitis UK
8 years ago
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