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Experiences with
Cerebral vasculitis
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Azathioprine
Well i have been back for my 3 monthly check up with the rhuemy today and he has decided that I am having way too many flare ups and that I can't stay on steroids as i am too young ( I am 40 so i think i might take that as a complement to cheer myself up) and so has put me on azathioprine. He has
Well i have been back for my 3 monthly check up with the rhuemy today and he has decided that I am having way too many flare ups and that I can't stay on steroids as i am too young ( I am 40 so i think i might take that as a complement to cheer myself up) and so has put me on azathioprine. He has
tiredmum
in
LUPUS UK
12 years ago
Wegener's Granulomatosis: The Treatment (Podcast 2)
Hey everyone! If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take
Hey everyone! If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take
missm23
in
Vasculitis UK
12 years ago
Hypersensitivity/urticarial vasculitis - scalp lumps
I am having a flare up of hypersensitivity vasculitis at present, following a reduction in hydroxychloriquine sulphate (I also have SLE, Sjogren's, coeliac and migraine). I've increased my dosage back up and the rheumatologists have said it may take up to 6 weeks to take effect, and until then I need
I am having a flare up of hypersensitivity vasculitis at present, following a reduction in hydroxychloriquine sulphate (I also have SLE, Sjogren's, coeliac and migraine). I've increased my dosage back up and the rheumatologists have said it may take up to 6 weeks to take effect, and until then I need
Lupylass
in
Vasculitis UK
12 years ago
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Nerve Damage and Peripheral Neuropathy
I was diagnosed with Vasculitis 18 months ago(Microscopic polyangitis).I had treatment with the usual steroids and cyclophosphamide.It was all going pretty well and my blood numbers were heading in the right direction.About 4 weeks after stopping cyclophos i had a relapse.My consultant assumed I had
I was diagnosed with Vasculitis 18 months ago(Microscopic polyangitis).I had treatment with the usual steroids and cyclophosphamide.It was all going pretty well and my blood numbers were heading in the right direction.About 4 weeks after stopping cyclophos i had a relapse.My consultant assumed I had
gibson100
in
Vasculitis UK
12 years ago
Is it possible to recover from vasculitis or is it a life sentence?
I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines
I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. After 8 weeks of being told it was migraines
Bobs
in
Vasculitis UK
13 years ago
Wegener's Granulomatosis: Charities, Support Groups and Raising Awareness (Episode 3)
If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take a break for one
If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009. Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take a break for one
missm23
in
Vasculitis UK
12 years ago
Vasculitis UK needs your help please
FOR A CHANGE THE TRUST NEEDS YOUR HELP FOR THE LAUNCH OF THE ROUTE MAP AND FOR VASCULITIS AWARENESS MONTH. Do you have a story to tell about your vasculitis? Maybe you have achieved something good, like running a marathon, climbing a mountain, or overcoming some adversity. For the media launch
FOR A CHANGE THE TRUST NEEDS YOUR HELP FOR THE LAUNCH OF THE ROUTE MAP AND FOR VASCULITIS AWARENESS MONTH. Do you have a story to tell about your vasculitis? Maybe you have achieved something good, like running a marathon, climbing a mountain, or overcoming some adversity. For the media launch
PatriciaAnn
in
Vasculitis UK
12 years ago
Are there anti-fatigue medications for vasculitis?
A colleague who has multiple sclerosis has been put on anti-fatigue medication. As you can imagine this interests me greatly, as vasculitis brings fatigue along with everything else. Anyone heard of vasculitis related fatigue being treated this way?
A colleague who has multiple sclerosis has been put on anti-fatigue medication. As you can imagine this interests me greatly, as vasculitis brings fatigue along with everything else. Anyone heard of vasculitis related fatigue being treated this way?
Hidden
in
Vasculitis UK
12 years ago
Marathon Blog 6 - Roma edition!
My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. There is a big announcement
My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. There is a big announcement
jimdrum
in
Vasculitis UK
12 years ago
A new members question,on Urticarial Vasculitis.
i am a new member to health unlocked, vasculitis uk, and i would like to ask members a question, as i wonder if there is anyone else who has had a similar history to me. I have had Urticarial Vasculitis for around 20 years. ( nothing really serious) but recently i have had really bad flare ups ( 8 attacks
i am a new member to health unlocked, vasculitis uk, and i would like to ask members a question, as i wonder if there is anyone else who has had a similar history to me. I have had Urticarial Vasculitis for around 20 years. ( nothing really serious) but recently i have had really bad flare ups ( 8 attacks
jackrussell
in
Vasculitis UK
12 years ago
Does anyone have unclassified Vasculitis?
Last time I saw my consultant I was told of the vasculitis classifications, the description went like this: "If group of rheumatologists are put into a room and decide on the diagnostic criteria for the variious types of vasculitis at the end of the discussion 25% of cases do not fit within these criteria
Last time I saw my consultant I was told of the vasculitis classifications, the description went like this: "If group of rheumatologists are put into a room and decide on the diagnostic criteria for the variious types of vasculitis at the end of the discussion 25% of cases do not fit within these criteria
tracynoe
in
Vasculitis UK
13 years ago
Hi all. I have a query re a change in medication regime ,
I am about to undergo a transition from cyclophosphomide to rituximab .I have so far had 8 infusions if cyclo however the W.G is still active following a relapse which began in april 2011 .I wondered if anyone had experienced a transition in this way with the plan being that I have 1 more infusion of
I am about to undergo a transition from cyclophosphomide to rituximab .I have so far had 8 infusions if cyclo however the W.G is still active following a relapse which began in april 2011 .I wondered if anyone had experienced a transition in this way with the plan being that I have 1 more infusion of
cazy-g
in
Vasculitis UK
13 years ago
Has anybody had a EMG investigation of the muscel and nerves as part of a diagnoses of lupus?if so was there anything conclusive .
.
.
Poppygayle
in
LUPUS UK
12 years ago
Do other vasculitis people get nausea, not from the meds?
That led, eventually, to a
cerebral
vasculitis
diagnosis in 1997. Now of course I get nausea from the cytotoxic meds. When I started on Azathioprine in 1998 I got day-long nausea, every single day.
That led, eventually, to a
cerebral
vasculitis
diagnosis in 1997. Now of course I get nausea from the cytotoxic meds. When I started on Azathioprine in 1998 I got day-long nausea, every single day.
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Overcoming reading problems due to cerebral vasculitis
Inspired by a question that came through via Twitter today I thought I'd blog about the reading problems I've had due to my
cerebral
vasculitis
, and how I am overcoming them. I was always a voracious reader as a child.
Inspired by a question that came through via Twitter today I thought I'd blog about the reading problems I've had due to my
cerebral
vasculitis
, and how I am overcoming them. I was always a voracious reader as a child.
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Stopping Thalidomide treatment; starting Cyclophosphamide (in addition to masses of other stuff)
But the important thing is the treatment might get my
cerebral
vasculitis
under control better. I didn't take the choice to start this lightly, but I think it's the right choice for me.
But the important thing is the treatment might get my
cerebral
vasculitis
under control better. I didn't take the choice to start this lightly, but I think it's the right choice for me.
vivdunstan
Volunteer
in
Vasculitis UK
12 years ago
Do other people (especially cerebral/CNS people) worsen in the heat?
My form of
cerebral
vasculitis
is very similar to multiple sclerosis in day to day symptoms. And along with that I have a very similar pattern to MS people in that my neurological symptoms worsen in the warmer weather.
My form of
cerebral
vasculitis
is very similar to multiple sclerosis in day to day symptoms. And along with that I have a very similar pattern to MS people in that my neurological symptoms worsen in the warmer weather.
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Losing driving licence due to cerebral vasculitis
I don't know if people with other forms of vasculitis ever lose their driving licences due to their
vasculitis
, but this happened to me, with
cerebral
vasculitis
.
I don't know if people with other forms of vasculitis ever lose their driving licences due to their
vasculitis
, but this happened to me, with
cerebral
vasculitis
.
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Trying Thalidomide for cerebral vasculitis
I already sleep for up to 17 hours every single day because of my brain damage from the
cerebral
vasculitis
. But this was that plus being even more of a zombie, as I staggered to the bathroom each time, before heading back to bed and more sleep. But the sedative effect has now eased.
I already sleep for up to 17 hours every single day because of my brain damage from the
cerebral
vasculitis
. But this was that plus being even more of a zombie, as I staggered to the bathroom each time, before heading back to bed and more sleep. But the sedative effect has now eased.
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
Do other vasculitis patients check their own blood pressure?
Because of my
cerebral
vasculitis
the consultant and GP want to keep an eye on my blood pressure. It's usually checked by nurses at the hospital when I'm there each month. But I have white coat syndrome, so don't get a reliable reading when it's taken in such a setting, or in the GP's surgery.
Because of my
cerebral
vasculitis
the consultant and GP want to keep an eye on my blood pressure. It's usually checked by nurses at the hospital when I'm there each month. But I have white coat syndrome, so don't get a reliable reading when it's taken in such a setting, or in the GP's surgery.
vivdunstan
Volunteer
in
Vasculitis UK
13 years ago
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