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Cerebral vasculitis
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LDN
Has anyone with urticarial vasculitis tried Lowdosenaltrexone ( LDN) I,m reading good reports about it but would prefer to trust this sight with an honest unbiased opinion. I woke up at 4am this morning with another flare, i feel really out of sorts , nauseous, pains in my face, and thinking " not again
Has anyone with urticarial vasculitis tried Lowdosenaltrexone ( LDN) I,m reading good reports about it but would prefer to trust this sight with an honest unbiased opinion. I woke up at 4am this morning with another flare, i feel really out of sorts , nauseous, pains in my face, and thinking " not again
jackrussell
in
Vasculitis UK
12 years ago
The Southern General Fiasco!
After CT scans, MRI scans, Angiograms the lot, I was told today that I am imagining my peripheral vision loss, vision loss, and that my memory loss is due to my pain levels. Finally my balance is off because I am over weight. He spoke to me sitting on my bed with 4 of his underlings around my bed all
After CT scans, MRI scans, Angiograms the lot, I was told today that I am imagining my peripheral vision loss, vision loss, and that my memory loss is due to my pain levels. Finally my balance is off because I am over weight. He spoke to me sitting on my bed with 4 of his underlings around my bed all
Jazzy21
in
Behçet's UK
12 years ago
In Southern Generals still? Peripheral vision loss
Still in hospital still have peripheral vision loss and soon other symptoms low vision balance problem memory loss. MRI clear lots of scratching out heads. Any advice wisdom.
Still in hospital still have peripheral vision loss and soon other symptoms low vision balance problem memory loss. MRI clear lots of scratching out heads. Any advice wisdom.
Jazzy21
in
Behçet's UK
12 years ago
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Hia, I'm new to site and Behcet's. Been reading blogs. As it's been helpful I'm venturing a question! Anyone taken CellCept (Mycophenolate)?
I've been taking for months now but it doesn't feel like it's making a difference. Consultant says to give it time, but not giving an indication of how long. I was diagnosed in Sep 2011 and steroids made a quick improvement. I then went on azathioprine and was able to reduce steroids. I really felt a
I've been taking for months now but it doesn't feel like it's making a difference. Consultant says to give it time, but not giving an indication of how long. I was diagnosed in Sep 2011 and steroids made a quick improvement. I then went on azathioprine and was able to reduce steroids. I really felt a
Godles
in
Behçet's UK
12 years ago
Some Good News at Last!
I attended my appointment yesterday with My Rheum Consultant and after he increased my CellCept or MMF wef 17th May, ( I am now on 2000mg per day), my Lupus levels and immune system is now back in the black. In laymans terms they are keeping the Lupus and it's actions at bay from doing any serious damage
I attended my appointment yesterday with My Rheum Consultant and after he increased my CellCept or MMF wef 17th May, ( I am now on 2000mg per day), my Lupus levels and immune system is now back in the black. In laymans terms they are keeping the Lupus and it's actions at bay from doing any serious damage
Lulabelle
in
LUPUS UK
12 years ago
Lower Intestinal Bleed
Had a lower intestinal bleed Sunday; as a consequence now back in hospital on copious amounts of morphine and gabapentin while they figure if my PAN is responsible for the ulcerative colitis symptoms I currently have. Neutrophil levels are ok... It's a big setback, as I'm in my local hospital which
Had a lower intestinal bleed Sunday; as a consequence now back in hospital on copious amounts of morphine and gabapentin while they figure if my PAN is responsible for the ulcerative colitis symptoms I currently have. Neutrophil levels are ok... It's a big setback, as I'm in my local hospital which
Wellsie
in
Vasculitis UK
12 years ago
Update From Oz.
The results were that she has
cerebral
Vasculitis
[being treated with steroids] and a high Lupus and ACL anti-body count. We will return to the hospital clinic this week to see Dr Godfrey and discuss putting her on Clexane.
The results were that she has
cerebral
Vasculitis
[being treated with steroids] and a high Lupus and ACL anti-body count. We will return to the hospital clinic this week to see Dr Godfrey and discuss putting her on Clexane.
WayneL
in
Hughes Syndrome APS Forum
12 years ago
Anxious about Rituximab
My first Rituximab is scheduled for 8th August. In clinic my consultant was busy so did not have time to ask questions and GP cannot answer either as she has no experience of it. Could anyone with experience tell me: on the day of the infusion should I take usual meds (Pred, Azathiorpine, BP tablet
My first Rituximab is scheduled for 8th August. In clinic my consultant was busy so did not have time to ask questions and GP cannot answer either as she has no experience of it. Could anyone with experience tell me: on the day of the infusion should I take usual meds (Pred, Azathiorpine, BP tablet
assumpta
in
Vasculitis UK
12 years ago
Wegeners
Hi i was very ill 4 years ago but recovered after being on a high dose of pred after about 8 months, at that time no-one could be sure if it had been Wegeners, i would say i was then 70% back to feeling my normal self. then 3 weeks ago i had another flare up this time its positive Wegeners Gran, im now
Hi i was very ill 4 years ago but recovered after being on a high dose of pred after about 8 months, at that time no-one could be sure if it had been Wegeners, i would say i was then 70% back to feeling my normal self. then 3 weeks ago i had another flare up this time its positive Wegeners Gran, im now
prudence
in
Vasculitis UK
12 years ago
Dad diagnosed with Wegener's Granulomatosis
Some 20 days ago my father was diagnosed with Wegener's, but no kidneys affected, at least not yet. We are Greek, living in Greece and first time even heard of the disease. It is too rare in Greece. Now on therapy with prednisone (50mg per day and cutting down 5 mg every week) and a monthly dose of cyclophosphamide
Some 20 days ago my father was diagnosed with Wegener's, but no kidneys affected, at least not yet. We are Greek, living in Greece and first time even heard of the disease. It is too rare in Greece. Now on therapy with prednisone (50mg per day and cutting down 5 mg every week) and a monthly dose of cyclophosphamide
zmajevi
in
Vasculitis UK
12 years ago
Can anyone explain how I have neutrophilia while on Prenisolone? Does it mean my dose is too low?
My neurologist has suggested that I have low grade
cerebral
vasculitis
. The symptoms, (mainly MS type + migraines) build up over time and usually respond to a short course of Prenisolone. This time however the steroids have not really worked.
My neurologist has suggested that I have low grade
cerebral
vasculitis
. The symptoms, (mainly MS type + migraines) build up over time and usually respond to a short course of Prenisolone. This time however the steroids have not really worked.
Melon
in
Vasculitis UK
12 years ago
Does anyone (particularly those with Cerebral Vasculitis) find it hard to stay sleep and do you have any tips?
I seem to be able to get to sleep, as I am so exhausted, but then wake every few hours. My brain doesn't seem to switch off anymore and would love to find out how others cope?
I seem to be able to get to sleep, as I am so exhausted, but then wake every few hours. My brain doesn't seem to switch off anymore and would love to find out how others cope?
milliewin
in
Vasculitis UK
12 years ago
How high is high with an ANCA result?
i think this sort of question has been asked before but I would love to know exactly what is meant by my ANCA results. At worst, during a bad flare, my P ANCA was at 45 (1 year ago), at best 5 (6 weeks ago) when my consultant said I was ANCA negative and I was feeling great. Now it is 22 with no
i think this sort of question has been asked before but I would love to know exactly what is meant by my ANCA results. At worst, during a bad flare, my P ANCA was at 45 (1 year ago), at best 5 (6 weeks ago) when my consultant said I was ANCA negative and I was feeling great. Now it is 22 with no
Ayla
Volunteer
in
Vasculitis UK
12 years ago
An update on where and what Vasculitis UK are about at the moment...
Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working with the National Institute for Health and Clinical Excellence on the assessing of new treatment. VUK are represented on the British Society of
Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working with the National Institute for Health and Clinical Excellence on the assessing of new treatment. VUK are represented on the British Society of
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Volunteers Wanted!!
Volunteers wanted to take part in a study into "Fatigue in patients with ANCA Associated Vasculitis" ...Dr Andrew McClean is still looking for healthy volunteers between the ages of 50/60/70. But he is also looking for couples of a similar age (any age) where one of the partners has vasculitis and the
Volunteers wanted to take part in a study into "Fatigue in patients with ANCA Associated Vasculitis" ...Dr Andrew McClean is still looking for healthy volunteers between the ages of 50/60/70. But he is also looking for couples of a similar age (any age) where one of the partners has vasculitis and the
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
cerebral vasculitis
Have had this for 19yrs Has anyone with this find / think that there is vasculitis in other parts of their body or does the other symptoms / problems all stem from
cerebral
vasculitis
? Dont think I have worded this right
Have had this for 19yrs Has anyone with this find / think that there is vasculitis in other parts of their body or does the other symptoms / problems all stem from
cerebral
vasculitis
? Dont think I have worded this right
magcor
in
Vasculitis UK
12 years ago
Meeting in London today Best Outcomes for People with Autoimmune Diseases
John is at a rare disease seminar in London , speaking along side David Jayne, at this very moment ..."best outcomes for people with autoimmune diseases" John will be talking about Vasculitis from a patient's prespective and David Jayne will be talking about Vasculitis and Lupus from a Consultants prespective
John is at a rare disease seminar in London , speaking along side David Jayne, at this very moment ..."best outcomes for people with autoimmune diseases" John will be talking about Vasculitis from a patient's prespective and David Jayne will be talking about Vasculitis and Lupus from a Consultants prespective
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
What do blood tests reveal?
Hi My name is Sue and l am from Australia. I tested positive for p-ANCA but negative for MPO,PR3 and C-ANCA? Also my ACE levels were elevated. Thinking it could be sarcoidosis or vasculitis. But with vas, would l be right in saying that there would be other blood indicators, as apposed to just P-ANCA
Hi My name is Sue and l am from Australia. I tested positive for p-ANCA but negative for MPO,PR3 and C-ANCA? Also my ACE levels were elevated. Thinking it could be sarcoidosis or vasculitis. But with vas, would l be right in saying that there would be other blood indicators, as apposed to just P-ANCA
Shezian
in
Vasculitis UK
12 years ago
Full body c.t scan for vasculitis!
Can anyone tell me if a full body c.t scan can pick up scarring on vessels etc? And also how a body. c.t scan may be able to tell if my daughter has vasculitis,she has severe sle,but her renal and neurologist feel she may have multi system vasculitis,she had swelling on the brain and spinal cord which
Can anyone tell me if a full body c.t scan can pick up scarring on vessels etc? And also how a body. c.t scan may be able to tell if my daughter has vasculitis,she has severe sle,but her renal and neurologist feel she may have multi system vasculitis,she had swelling on the brain and spinal cord which
nanny4
in
Vasculitis UK
12 years ago
Adoption approval for vasculitis sufferers?
Has anyone out there suffering from vasculitis had experience of trying to adopt children. We are in scotland and my husband has cutaneous vasculitis- (we believe he has Cutaneous polyarteritis nodosa (PAN) although we have not been told which form of cutaneous vasculitis he has).His kidneys function
Has anyone out there suffering from vasculitis had experience of trying to adopt children. We are in scotland and my husband has cutaneous vasculitis- (we believe he has Cutaneous polyarteritis nodosa (PAN) although we have not been told which form of cutaneous vasculitis he has).His kidneys function
Debmac
in
Vasculitis UK
12 years ago
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