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Cerebral vasculitis
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ANCA negative lupus
I have had an abnormal lupus anticoag Had repeat last week. All other results neg ( ANA, ANCA, DsDNA etc etc) Anyone any info on ANCA negative lupus.
I have had an abnormal lupus anticoag Had repeat last week. All other results neg ( ANA, ANCA, DsDNA etc etc) Anyone any info on ANCA negative lupus.
Howsaboutit
in
LUPUS UK
10 years ago
Soul Night with a difference for Vasculitis UK
David was diagnosed with Wegeners Granulomatosis (GPA) just over 5 years ago and wants to raise awareness of Vasculitis and fundraise for Vascsulitis UK, so he has organised a Soul Night for the 26th September 2014 starting at 8pm finishing at 1am, Stoke on Trent, if anyone would like to go along and
David was diagnosed with Wegeners Granulomatosis (GPA) just over 5 years ago and wants to raise awareness of Vasculitis and fundraise for Vascsulitis UK, so he has organised a Soul Night for the 26th September 2014 starting at 8pm finishing at 1am, Stoke on Trent, if anyone would like to go along and
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Re. Heparin trial
I have
cerebral
vasculitis
lupus+aps. And I've been getting a lot of headaches +nausea +sore skin around my face and feeling quite unwell. It feels like the aspirin is'nt working anymore, so the prof.
I have
cerebral
vasculitis
lupus+aps. And I've been getting a lot of headaches +nausea +sore skin around my face and feeling quite unwell. It feels like the aspirin is'nt working anymore, so the prof.
Elfie1
in
Hughes Syndrome APS Forum
10 years ago
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Rituximab....
Finished my 2nd dose of rituximab infusion yesterday. Just got to wait a couple of months before treatment takes affect. Still got these ulcers feet, trying another dressing named prodem........ Time to get up!
Finished my 2nd dose of rituximab infusion yesterday. Just got to wait a couple of months before treatment takes affect. Still got these ulcers feet, trying another dressing named prodem........ Time to get up!
dzagotskillz
in
LUPUS UK
10 years ago
vasculitis
Hi, i was wondering if anyone else suffers from vasculitis? I had problems with my left hand back in jan where fingertips would go hot, swell n go deep red nearly purple. I went to doc's in may n they did blood tests for vitamin d which i had to take supplements for. Since then my right hand has started
Hi, i was wondering if anyone else suffers from vasculitis? I had problems with my left hand back in jan where fingertips would go hot, swell n go deep red nearly purple. I went to doc's in may n they did blood tests for vitamin d which i had to take supplements for. Since then my right hand has started
ush1401
in
LUPUS UK
10 years ago
Worried
Hi. I was discharged last night following my first cyclophosphamide treatment on Wednesday. So this has been my first day back at home today. The doctor who discharged me from the hospital has just called to say that my bloods on discharge were borderline abnormal in terms of white count and to ask
Hi. I was discharged last night following my first cyclophosphamide treatment on Wednesday. So this has been my first day back at home today. The doctor who discharged me from the hospital has just called to say that my bloods on discharge were borderline abnormal in terms of white count and to ask
Bindy68
in
Vasculitis UK
10 years ago
Paul skydives for Jessica and Vasculitis UK
Paul Hunter will bravely take to the skies on 3rd September and skydives not only for Vasculitis UK but for Jessica Jessica is 13 years old and was diagnosed with Central Nervous System Vasculitis 3 years ago. She is thought to be the youngest person in the UK with CNS and has been very ill. During
Paul Hunter will bravely take to the skies on 3rd September and skydives not only for Vasculitis UK but for Jessica Jessica is 13 years old and was diagnosed with Central Nervous System Vasculitis 3 years ago. She is thought to be the youngest person in the UK with CNS and has been very ill. During
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Starting a discussion on Vasculitis & Kidney Disease
I have had 'uncategorised' ANCA vasculitis, for about seventeen years now. A lot of fellow members do 'know' me I am aware. I was just wondering if, my experiences, both of vasculitis treatment, and kidney transplant, can be of use to anyone. Perhaps an exchange of views/experiences might be helpful
I have had 'uncategorised' ANCA vasculitis, for about seventeen years now. A lot of fellow members do 'know' me I am aware. I was just wondering if, my experiences, both of vasculitis treatment, and kidney transplant, can be of use to anyone. Perhaps an exchange of views/experiences might be helpful
AndrewT
in
Vasculitis UK
10 years ago
Rituximab Advice
I have GPA and started Rituximab just under 12 weeks ago. My inflammatory markers are normal and ANCA result now negative, pred down to 15mg daily. Despite all this I still have sinus symptoms, aches and pains and feel generally unwell all of the time. I am keen to know if others have experienced
I have GPA and started Rituximab just under 12 weeks ago. My inflammatory markers are normal and ANCA result now negative, pred down to 15mg daily. Despite all this I still have sinus symptoms, aches and pains and feel generally unwell all of the time. I am keen to know if others have experienced
Maudy1
in
Vasculitis UK
10 years ago
Harrogate Chronic Pain and Chronic Fatigue Support Group
This may be of some support if you have Vasculitis and live in North Yorkshire http://www.healthwatchnorthyorkshire.co.uk/events/harrogate-chronic-pain-and-chronic-fatigue-support-group
This may be of some support if you have Vasculitis and live in North Yorkshire http://www.healthwatchnorthyorkshire.co.uk/events/harrogate-chronic-pain-and-chronic-fatigue-support-group
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Steroid- induced dementia? Cerebral vasculitis? Auto-immune?
My Dad has lung cancer, it had spread to the brain and bones, but just a tiny tumour in each place. He was put in steroids (Dexamethasone) back in April to get swelling down around tumour in brain before starting chemo pill (Iressa) a couple of weeks later. A month later and he is back to normal, active
My Dad has lung cancer, it had spread to the brain and bones, but just a tiny tumour in each place. He was put in steroids (Dexamethasone) back in April to get swelling down around tumour in brain before starting chemo pill (Iressa) a couple of weeks later. A month later and he is back to normal, active
suelakes
in
The Roy Castle Lung Cancer Foundation
10 years ago
Symptoms of peripheral vasculitis
I have pins and needles in my lower legs and feet, and the skin looks very blue. I also get what seems like electric shock feelings in my legs and feet, and they sometimes feel numb. I also have GCA which was diagnosed 15 years ago at the age of 54 and been on Pred. ever since, with frequent
I have pins and needles in my lower legs and feet, and the skin looks very blue. I also get what seems like electric shock feelings in my legs and feet, and they sometimes feel numb. I also have GCA which was diagnosed 15 years ago at the age of 54 and been on Pred. ever since, with frequent
bowler
in
Vasculitis UK
10 years ago
Low red blood cell counts
In all the blood tests I have had because of Vasculitis I have noticed that my Haemaglobin and red blood cell counts are lower than the normal range expected. The question is have others who have Vasculitis also experience such low counts in their blood tests? Also posted on Facebook-Vasculitis-UK.
In all the blood tests I have had because of Vasculitis I have noticed that my Haemaglobin and red blood cell counts are lower than the normal range expected. The question is have others who have Vasculitis also experience such low counts in their blood tests? Also posted on Facebook-Vasculitis-UK.
Albasain
in
Vasculitis UK
10 years ago
How long for Rituximab to work for Wegeners?
I had my 1st Rituximab infusion 4 weeks ago and 2nd one 2 weeks ago. I have yet to feel any benefit and in fact my symptoms have worsened as my steroids are quite low and have phased out Azathiaprine. I just those that have taken Rixuximab how long it took to work?
I had my 1st Rituximab infusion 4 weeks ago and 2nd one 2 weeks ago. I have yet to feel any benefit and in fact my symptoms have worsened as my steroids are quite low and have phased out Azathiaprine. I just those that have taken Rixuximab how long it took to work?
Maudy1
in
Vasculitis UK
10 years ago
Living Well with Vasculitis - Portsmouth Hospital. The first Portsmouth Vasculitis Support Group meeting. July 19th 2014
The Department of Rheumatology would like to invite you to ‘Living Well with Vasculitis’ In connection with Vasculitis UK the Portsmouth Rheumatology team would like to announce a meeting to discuss the introduction of a support group for patients with Vasculitis, (including GCA/Temporal Arteritis,
The Department of Rheumatology would like to invite you to ‘Living Well with Vasculitis’ In connection with Vasculitis UK the Portsmouth Rheumatology team would like to announce a meeting to discuss the introduction of a support group for patients with Vasculitis, (including GCA/Temporal Arteritis,
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Cerebral Vasculitis , major stoke 39yrs
They had no answers she was sent to PA in Brisbane fortunate that one doc had seen this before and diag
Cerebral
Vasculitis
, after 3 weeks she is still in high care she came of a ventilator last Friday and has a trackie in. High doses of steroids daily and chemo drug every weeks are prescribed.
They had no answers she was sent to PA in Brisbane fortunate that one doc had seen this before and diag
Cerebral
Vasculitis
, after 3 weeks she is still in high care she came of a ventilator last Friday and has a trackie in. High doses of steroids daily and chemo drug every weeks are prescribed.
sirc39
in
Vasculitis UK
10 years ago
Congratulations to Joe. Joe was diagnosed with Wegener's Granulomatosis (GPA) 4 years ago at the age of 11.
Just wanted to say congratulations to Joe for not only completing 55 miles on his cycle in the EroicaBritannia in the Peak District last weekend for Vasculitis UK but also completing the event up there with the leaders. Joe was diagnosed with Wegeners Granulomatosis (GPA) 4 years ago at the age of 11
Just wanted to say congratulations to Joe for not only completing 55 miles on his cycle in the EroicaBritannia in the Peak District last weekend for Vasculitis UK but also completing the event up there with the leaders. Joe was diagnosed with Wegeners Granulomatosis (GPA) 4 years ago at the age of 11
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Study into the genetics of ANCA Associated Vasculitis
Interesting article about Arthritis Research funding a study into the genetics of ANCA Associated Vasculitis. http://www.businessweekly.co.uk/academia-a-research/17116-cambridge-wins-p224k-to-probe-rare-autoimmune-disease
Interesting article about Arthritis Research funding a study into the genetics of ANCA Associated Vasculitis. http://www.businessweekly.co.uk/academia-a-research/17116-cambridge-wins-p224k-to-probe-rare-autoimmune-disease
RichardE
Volunteer
in
Vasculitis UK
10 years ago
Any tips for making the rash fade more quickly?
I have either HSP or leucocytoclastic vasculitis (my skin biopsy was inconclusive). All else is fine with medication, and while the rash is much reduced (basically strangers have stopped looking at me funny, which is a relief), I do still get a pin prick rash especially on my legs, and similar marks
I have either HSP or leucocytoclastic vasculitis (my skin biopsy was inconclusive). All else is fine with medication, and while the rash is much reduced (basically strangers have stopped looking at me funny, which is a relief), I do still get a pin prick rash especially on my legs, and similar marks
SuperMaria
in
Vasculitis UK
10 years ago
I have cerebral vasculitis and also pmr, I finished a second course of cyclophosphamide Mid march, I was ok until about three weeks ago when
I had a chest infection, since both vasculitis and pmr have flared, any idea,s if this could be due to chest infection have had a course on antibiotics.?
I had a chest infection, since both vasculitis and pmr have flared, any idea,s if this could be due to chest infection have had a course on antibiotics.?
Louzoejf29
in
Vasculitis UK
10 years ago
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