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Cerebral vasculitis
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Jessner's Lymphocytic Infiltration
After 15 years of having my rash peered at by various Dermatologists and having it pronounced as 'atypical of Lupus', I've finally been told, after two biopsies that it's JLI. I've still got sub-acute-cutaneous Lupus (based on auto-antibody titres). Has anyone else been diagnosed with JLI on this
After 15 years of having my rash peered at by various Dermatologists and having it pronounced as 'atypical of Lupus', I've finally been told, after two biopsies that it's JLI. I've still got sub-acute-cutaneous Lupus (based on auto-antibody titres). Has anyone else been diagnosed with JLI on this
FunkyMumma
in
LUPUS UK
11 years ago
First (paediatric) consultation what to expect?
Hi, my little boy has been referred to the periodic fever clinic in Bristol to see a specialist about the possibility of a rare form of Vasculitis. We have had many consultations before but not this. What can we expect? I'm worried they will fob us off if he is having a 'good' few days, no rash
Hi, my little boy has been referred to the periodic fever clinic in Bristol to see a specialist about the possibility of a rare form of Vasculitis. We have had many consultations before but not this. What can we expect? I'm worried they will fob us off if he is having a 'good' few days, no rash
Lau85
in
Vasculitis UK
11 years ago
Taking Gabapentin
I have WG with
Cerebral
Vasculitis
involvement. My neurologist wants to introduce me to Gabapentin and my rheumatologist won't comment (or rather wont interfere) and say its up to me! I am very reluctant to add to my drug cocktail and not sure what is the purpose of taking it.
I have WG with
Cerebral
Vasculitis
involvement. My neurologist wants to introduce me to Gabapentin and my rheumatologist won't comment (or rather wont interfere) and say its up to me! I am very reluctant to add to my drug cocktail and not sure what is the purpose of taking it.
Keymer71
in
Vasculitis UK
11 years ago
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Ill health retirement
I was ill health retired from my job two years ago after continually trying to stay in my post as a social worker since my diagnosis of
cerebral
vasculitis
several years ago. My health constantly deteriorated and relapsed during this period.
I was ill health retired from my job two years ago after continually trying to stay in my post as a social worker since my diagnosis of
cerebral
vasculitis
several years ago. My health constantly deteriorated and relapsed during this period.
blackgolf
in
Vasculitis UK
12 years ago
New Inspirational Story on the Vasculitis UK website
Andrew Irving was diagnosed with Wegeners Granulomatosis in 2010. Andrew is a keen supporter of Vasculitis UK and is also a keen rally driver... ... :-) http://www.vasculitis.org.uk/about/andrews-story
Andrew Irving was diagnosed with Wegeners Granulomatosis in 2010. Andrew is a keen supporter of Vasculitis UK and is also a keen rally driver... ... :-) http://www.vasculitis.org.uk/about/andrews-story
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
First Cyclosphosphamide Infusion
I had my first cyclophosphamide infusion today... took about 7 hours in the day ward... It will go on on a four-week basis for up to 6 months... My Rhuemy told me is the best solution I should take as I have RENAL and CEREBRAL lupus which is vastly affecting brain... Azathioprine was finally
I had my first cyclophosphamide infusion today... took about 7 hours in the day ward... It will go on on a four-week basis for up to 6 months... My Rhuemy told me is the best solution I should take as I have RENAL and CEREBRAL lupus which is vastly affecting brain... Azathioprine was finally
nass361
in
LUPUS UK
12 years ago
Wilkinson staff raise thousands in aid of Weight Loss Challenger David Tyzack... David 21, has Wegener's Granulomatosis (GPA)
WILKINSON staff have raised more than £2,000, fundraising for Vasculitis UK, in aid of one of this year's weight loss challengers who suffers from a rare disease. http://www.thisisdevon.co.uk/Wilkinson-staff-raise-thousands-aid-Weight-Loss/story-18479912-detail/story.html#axzz2OULLYmQ1
WILKINSON staff have raised more than £2,000, fundraising for Vasculitis UK, in aid of one of this year's weight loss challengers who suffers from a rare disease. http://www.thisisdevon.co.uk/Wilkinson-staff-raise-thousands-aid-Weight-Loss/story-18479912-detail/story.html#axzz2OULLYmQ1
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
If anyone has NONE ANCA Vasculitis and has been given RITUXIMAB, can you please contact me as soon as possible please.
As I would like to know of your personal experience of Rituximab for the NICE Submission. john.mills@vasculitis.co.uk or private message me. thank you John
As I would like to know of your personal experience of Rituximab for the NICE Submission. john.mills@vasculitis.co.uk or private message me. thank you John
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
I feel very alone & struggling with my lupus daily
I have made a few mistakes the last few months, choosing love or friends and lost both! But like most of us here I've paid triple cos my lupus is in overdrive!! I have really bad bladder problems, I had a hip replacement in 09 and either that's going wrong or all my muscles and ligaments need put back
I have made a few mistakes the last few months, choosing love or friends and lost both! But like most of us here I've paid triple cos my lupus is in overdrive!! I have really bad bladder problems, I had a hip replacement in 09 and either that's going wrong or all my muscles and ligaments need put back
Emmalouise_0209_82
in
LUPUS UK
12 years ago
Blood pressure and vasculitis
I know that the disease can cause high blood pressure but can this also be the case when the disease is in drug induced remission? My consultant tells me it is now “raised” (typically 129/87). Before becoming ill I wasn’t aware I had raised blood pressure, although it’s not something you tend to be aware
I know that the disease can cause high blood pressure but can this also be the case when the disease is in drug induced remission? My consultant tells me it is now “raised” (typically 129/87). Before becoming ill I wasn’t aware I had raised blood pressure, although it’s not something you tend to be aware
Chris-Bromsgrove
in
Vasculitis UK
12 years ago
Vasculitis
Of course someone will have this but just wondered what symptoms it gives. I have a tingling/pins and needles in my feet but not as sharp a pain as the usual pins and needles. Dunno if it is the Lupus but most things seem to be....
Of course someone will have this but just wondered what symptoms it gives. I have a tingling/pins and needles in my feet but not as sharp a pain as the usual pins and needles. Dunno if it is the Lupus but most things seem to be....
DaleDiva
in
LUPUS UK
12 years ago
My Wegener's latest
Had my 7th Cyclophosphamide infusion yesterday. Saw Dr Jayne. He's reviewing my situation and probably switching me on to Retuximab. Also saw Dr Johnny, and he's recommending a new nasal biopsy.Still have 3 more cyclos booked,which may not now take place, and possible clinic date for 6 weeks time. Also
Had my 7th Cyclophosphamide infusion yesterday. Saw Dr Jayne. He's reviewing my situation and probably switching me on to Retuximab. Also saw Dr Johnny, and he's recommending a new nasal biopsy.Still have 3 more cyclos booked,which may not now take place, and possible clinic date for 6 weeks time. Also
suffolkgirl
in
Vasculitis UK
12 years ago
Wegeners Granulomatosis
HELP we are so frustated my husband has been to the clinic today to be told that they want him to go onto Mycopheneolate he has recently had Retuximab and it doesn t appear to have worked even thou his results say it has but he is so ill, he also had blood in his urine on the last visit but thankfully
HELP we are so frustated my husband has been to the clinic today to be told that they want him to go onto Mycopheneolate he has recently had Retuximab and it doesn t appear to have worked even thou his results say it has but he is so ill, he also had blood in his urine on the last visit but thankfully
hornet
in
Vasculitis UK
12 years ago
A new classified type of Vasculitis on the VUK website this weekend.. Anti-GBM - Goodpastures Disease
Thanks to Jann and Pat working over the weekend....a new extremely rare type of Vasculitis is now on the VUK website. Also thank you to Prof Charles Pusey Imperial College London..... http://www.vasculitis.org.uk/about-vasculitis/anti-gbm-goodpastures-disease
Thanks to Jann and Pat working over the weekend....a new extremely rare type of Vasculitis is now on the VUK website. Also thank you to Prof Charles Pusey Imperial College London..... http://www.vasculitis.org.uk/about-vasculitis/anti-gbm-goodpastures-disease
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Remission
Had the fabulous news that after 3 months of normal blood test results I'm now in remission. Cyclophosphamide treatment is being replaced with azathioprine. I am so happy!
Had the fabulous news that after 3 months of normal blood test results I'm now in remission. Cyclophosphamide treatment is being replaced with azathioprine. I am so happy!
Wellsie
in
Vasculitis UK
12 years ago
Vasculitis and Sjogrens
Anyone out there suffer from Sjogrens's and vasculitis. I am on Methotrexate and Prednisone. I am in remission at the moment. Has anyone managed to come off medication and remain in remission.
Anyone out there suffer from Sjogrens's and vasculitis. I am on Methotrexate and Prednisone. I am in remission at the moment. Has anyone managed to come off medication and remain in remission.
Sjogy
in
Vasculitis UK
12 years ago
Provisional diagnosis of Vasculitis
On the 2nd Jan 2013, I experienced reduction of vision in my left eye, after having a CT, MRI & LP there was a positive PANCA result with High MPO antibody Titre consistent with Polyarteritis; I am now being referred to Addenbrookes and would like to know what to expect with regards to tests plus actual
On the 2nd Jan 2013, I experienced reduction of vision in my left eye, after having a CT, MRI & LP there was a positive PANCA result with High MPO antibody Titre consistent with Polyarteritis; I am now being referred to Addenbrookes and would like to know what to expect with regards to tests plus actual
Sima1952
in
Vasculitis UK
12 years ago
Lincolnshire Vasculitis Support Group Meeting 30th March 2012
Lincolnshire Vasculitis Support Group meeting, Saturday 30th March 2013. The next meeting will take place at the Thorold Arms, High Street, Harmston, LN5 9SN starting at 2pm until 5pm. It will be an informal meeting and afternoon tea will be served around 4pm. During the afternoon there
Lincolnshire Vasculitis Support Group meeting, Saturday 30th March 2013. The next meeting will take place at the Thorold Arms, High Street, Harmston, LN5 9SN starting at 2pm until 5pm. It will be an informal meeting and afternoon tea will be served around 4pm. During the afternoon there
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Instructions on how to take part in the DNA Analysis Research Project... at Cambridge..... for ALL ANCA Associated Vasculitis patients
We are predominantly looking for families with more than 1 individual with ANCA Associated Vasculitis, or people whose ANCA vasculitis started below the age of 16. (WG (GPA), CSS (EGPA) and MPA. However, there are more genetic studies ongoing, so we would be keen to enroll anyone with ANCA vasculitis
We are predominantly looking for families with more than 1 individual with ANCA Associated Vasculitis, or people whose ANCA vasculitis started below the age of 16. (WG (GPA), CSS (EGPA) and MPA. However, there are more genetic studies ongoing, so we would be keen to enroll anyone with ANCA vasculitis
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Pick Me Up Special Series Magazine 24th January 2013
The Pick Me Up Special Series magazines are produced by the makers of the weekly Pick me up magazines. They are released to coincide with the important events and seasonal activities of the year. It will contain the best shocking real life stories, fashion ideas as well as health and happiness advice
The Pick Me Up Special Series magazines are produced by the makers of the weekly Pick me up magazines. They are released to coincide with the important events and seasonal activities of the year. It will contain the best shocking real life stories, fashion ideas as well as health and happiness advice
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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