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Cerebral vasculitis
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Apprehensive about Rituximab
Well I'm now on course to get Rituximab, since Azathioprine didn't suit me. Just waiting for a date for my first infusion. However, I'm a bit apprehensive in view of the mixed reactions to it. Hope it works for me!
Well I'm now on course to get Rituximab, since Azathioprine didn't suit me. Just waiting for a date for my first infusion. However, I'm a bit apprehensive in view of the mixed reactions to it. Hope it works for me!
suffolkgirl
in
Vasculitis UK
11 years ago
Small World.. you never know who is on your doorstep and has been diagnosed with Vasculitis.
After attending a fundraising event today for a local Children's Hospital, I have realised that, now, in a 14 mile radius of my home, I know, 6 people with Wegeners Granulomatosis (GPA) aged 14, 24, 32, 65, 70 and 75, plus a little girl of 4 and a young man of nearly 20 who both have Henoch Schonlein
After attending a fundraising event today for a local Children's Hospital, I have realised that, now, in a 14 mile radius of my home, I know, 6 people with Wegeners Granulomatosis (GPA) aged 14, 24, 32, 65, 70 and 75, plus a little girl of 4 and a young man of nearly 20 who both have Henoch Schonlein
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
Could this be vasculitis
Sorry if this is a duplication, I thought I had just submitted but cannot see my question so...about 11 days ago I went to doctor with large red and hot patches that suddenly appeared on both lower legs. Was given steroids and rash/red patches went after about 7 days. Suddenly reappeared yesterday along
Sorry if this is a duplication, I thought I had just submitted but cannot see my question so...about 11 days ago I went to doctor with large red and hot patches that suddenly appeared on both lower legs. Was given steroids and rash/red patches went after about 7 days. Suddenly reappeared yesterday along
Bradleysnan
in
Vasculitis UK
11 years ago
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simvastatin
does anybody have to take this in their vasculitis drug regime have started on it of recent,and have gone from generally feeling well to feeling sick all the time are there any alternatives to it ? also im taking it in a small dose alongside amolodopine,which is generally ok,but a bigger dose is not
does anybody have to take this in their vasculitis drug regime have started on it of recent,and have gone from generally feeling well to feeling sick all the time are there any alternatives to it ? also im taking it in a small dose alongside amolodopine,which is generally ok,but a bigger dose is not
quinnster
in
Vasculitis UK
11 years ago
Does this sound like vasculitis?
Hi all, if I share my experience I'm hoping that others out there have been through similar and can explain what the likely next steps will be. In early March I went away on holiday and on arrival at the hotel I changed into shorts and noticed a few spots on my legs. Not thinking it was serious I
Hi all, if I share my experience I'm hoping that others out there have been through similar and can explain what the likely next steps will be. In early March I went away on holiday and on arrival at the hotel I changed into shorts and noticed a few spots on my legs. Not thinking it was serious I
italy321
in
Vasculitis UK
11 years ago
Is anyone else taking myfortic or cellcept . I have a very bad case of sle, many organs involved
Lizlauren
in
LUPUS UK
11 years ago
Azathioprine not suitable now.What next?
Been to clinic today, and just had a call to say stop Azathioprine as it's affecting my liver. Have to go back next week now to see what else they will try. Nothing is ever straightforward for long with vasculitis!
Been to clinic today, and just had a call to say stop Azathioprine as it's affecting my liver. Have to go back next week now to see what else they will try. Nothing is ever straightforward for long with vasculitis!
suffolkgirl
in
Vasculitis UK
11 years ago
HUVS
If you have Hypocomplementemic Urticarial Vasculitis Syndrome and you have tried many medications Methatrexate IM and/or PO, immurane, cytoxin, cellcept, Plaquinel, Dapsone without favorable results. Ask your doctor to try Rituxan. It took two doses 1 month apart and I have been spot free now for 4
If you have Hypocomplementemic Urticarial Vasculitis Syndrome and you have tried many medications Methatrexate IM and/or PO, immurane, cytoxin, cellcept, Plaquinel, Dapsone without favorable results. Ask your doctor to try Rituxan. It took two doses 1 month apart and I have been spot free now for 4
Texas195260
in
Vasculitis UK
11 years ago
Just wondering if any of you get a cold or gastro, on a scale of 1 to 10 how sick do you all get. AND are you on Azathioprine?
Just wondering how concerned I should be about my daughter getting gastro whilst taking Azathioprine. In the past my daughter normally misses the winter bugs, but not this year. She has been on Azathioprine for 6 months and only had a few little colds which haven't worried her. I would call her rhumatologis
Just wondering how concerned I should be about my daughter getting gastro whilst taking Azathioprine. In the past my daughter normally misses the winter bugs, but not this year. She has been on Azathioprine for 6 months and only had a few little colds which haven't worried her. I would call her rhumatologis
Michja
in
Behçet's UK
11 years ago
Diagnosed with vasculitic lesions in December, in addition to lupus. DVT & MI within the last 4 weeks, & now awaiting kidney biopsy.
It's difficult to take all that's happened recently. So support & advice would be very gratefully received. I thought I basically had Lupus, & have been searching for the right medication for sometime. But it seems as if something more is going on. I was told the DVT was more likely to be inflammatory
It's difficult to take all that's happened recently. So support & advice would be very gratefully received. I thought I basically had Lupus, & have been searching for the right medication for sometime. But it seems as if something more is going on. I was told the DVT was more likely to be inflammatory
roobarb
in
Vasculitis UK
11 years ago
What types of doctors best diagnose vasculitis & any underlying causes?
A biopsy recently revealed that the issues I've been having for the past few years are linked to leukocytoclastic vasculitis. I am seeking out a rheumatologist for a second opinion before starting steroid/immunosuppressant therapies. What other types of doctors should I seek to find out the cause of
A biopsy recently revealed that the issues I've been having for the past few years are linked to leukocytoclastic vasculitis. I am seeking out a rheumatologist for a second opinion before starting steroid/immunosuppressant therapies. What other types of doctors should I seek to find out the cause of
Ajanowiak
in
Vasculitis UK
11 years ago
"mystery diagnosis" HSP
an episode of "Mystery Diagnosis" entitled "rash decision" was on last night featured hsp vasculitis. sandra.
an episode of "Mystery Diagnosis" entitled "rash decision" was on last night featured hsp vasculitis. sandra.
hamble99b
Volunteer
in
Vasculitis UK
11 years ago
Vasculitis UK are now contributing to the funding for two new research projects.
A student elective bursary for a research study for Takayasu Arteritis and a drug trial for Polyarteritis Nodosa in Children. There is more detail about these two new projects on the Vasculitis UK website if you follow the link below :-) http://www.vasculitis.org.uk/research/funded-research
A student elective bursary for a research study for Takayasu Arteritis and a drug trial for Polyarteritis Nodosa in Children. There is more detail about these two new projects on the Vasculitis UK website if you follow the link below :-) http://www.vasculitis.org.uk/research/funded-research
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Innov8 Conferences are supporting Vasculitis UK for Vasculitis Awareness Month May 2013.
In 2007, Kira the Daughter of innov8's owners – Emma and James Caldwell was diagnosed with Henoch–Schönlein Purpura, a very rare form of Vasculitis. In the resulting 6 Years Kira has had 12 relapses of the condition, which have each needed long stays in Hospital to help battle the condition. In
In 2007, Kira the Daughter of innov8's owners – Emma and James Caldwell was diagnosed with Henoch–Schönlein Purpura, a very rare form of Vasculitis. In the resulting 6 Years Kira has had 12 relapses of the condition, which have each needed long stays in Hospital to help battle the condition. In
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
vascular consultants
I have a question,Purely out of interest, If Vasculitis is inflamation of the blood vessels why are Vascular Consulants not involved.I had surgery on my feet ( on 2 seperate occasions ) a few years ago, and was told no pulse could be found in my feet, 1 operation went ahead, the 2nd one 4 years later
I have a question,Purely out of interest, If Vasculitis is inflamation of the blood vessels why are Vascular Consulants not involved.I had surgery on my feet ( on 2 seperate occasions ) a few years ago, and was told no pulse could be found in my feet, 1 operation went ahead, the 2nd one 4 years later
jackrussell
in
Vasculitis UK
11 years ago
VASCULITIS AGM 2013 TODAY AT LONG EATON
Just wanted to say thank you to everyone who came to the AGM today. Special thanks to Dr Andrew McClean for his brilliant presentation "Why are people with ANCA Vasculitis fatigued?" Also thanks to Prof Lorraine Harper who spoke briefly about how Vasculitis research in the UK is leading the world. Also
Just wanted to say thank you to everyone who came to the AGM today. Special thanks to Dr Andrew McClean for his brilliant presentation "Why are people with ANCA Vasculitis fatigued?" Also thanks to Prof Lorraine Harper who spoke briefly about how Vasculitis research in the UK is leading the world. Also
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Agenda - Vasculitis UK Annual General Meeting - Sunday 12th May
Vascuitis UK - AGM - Sunday 12th May 2013 - Long Eaton Novotel NG10 4EP 12.15 - Meet & Mingle (Buffet lunch) 1.00 - Annual General meeting AGENDA 1. Welcome and apologies 2. Minutes of Previous meeting 3. Matters arising 4. Chairman's report and Treasurer's report 5. Election of Trustees
Vascuitis UK - AGM - Sunday 12th May 2013 - Long Eaton Novotel NG10 4EP 12.15 - Meet & Mingle (Buffet lunch) 1.00 - Annual General meeting AGENDA 1. Welcome and apologies 2. Minutes of Previous meeting 3. Matters arising 4. Chairman's report and Treasurer's report 5. Election of Trustees
PatriciaAnn
in
Vasculitis UK
11 years ago
Enfield family spreads word about son's rare condition 'They were preparing us for the worst'
A trainee doctor spotted a rash beginning to develop and realised the 19-year-old Capel Manor College student was suffering from chronic vasculitis – in which blood vessels become inflamed and the immune system starts to attack itself. http://www.thisislocallondon.co.uk/news/10398829._They_were_preparing_us_for_the_worst
A trainee doctor spotted a rash beginning to develop and realised the 19-year-old Capel Manor College student was suffering from chronic vasculitis – in which blood vessels become inflamed and the immune system starts to attack itself. http://www.thisislocallondon.co.uk/news/10398829._They_were_preparing_us_for_the_worst
John_Mills
Vasculitis UK
in
Vasculitis UK
11 years ago
Walk the Worcestershire Way: Walkers Update and Event Detail
Dear Walkers WALK THE WORCESTERSHIRE WAY UPDATE Let me start by thanking you for signing up to Walk the Worcestershire Way for Vasculitis UK. The money we will raise together will make a huge difference to the lives of patients and their families affected by Vasculitis. I thought I would provide
Dear Walkers WALK THE WORCESTERSHIRE WAY UPDATE Let me start by thanking you for signing up to Walk the Worcestershire Way for Vasculitis UK. The money we will raise together will make a huge difference to the lives of patients and their families affected by Vasculitis. I thought I would provide
Wellsie
in
Vasculitis UK
11 years ago
A flare or just 'symptoms'?
At the beginning of April I swallowed my last 1mg of pred, having started on 30mg for a flare of CSS that began February 2012. Within a week I was experiencing breathing problems and my peak flow was dropping. This week I have been having lots of joint pain which is something I haven't had for years.
At the beginning of April I swallowed my last 1mg of pred, having started on 30mg for a flare of CSS that began February 2012. Within a week I was experiencing breathing problems and my peak flow was dropping. This week I have been having lots of joint pain which is something I haven't had for years.
laidbackreader
in
Vasculitis UK
11 years ago
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