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Cerebral vasculitis
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Has anyone diagnosed with ANCA associated vasculitis had any success in getting life insurance?
Has anyone diagnosed with ANCA vasculitis had any success in getting life insurance?
Has anyone diagnosed with ANCA vasculitis had any success in getting life insurance?
John_Mills
Vasculitis UK
in
Vasculitis UK
7 years ago
Vasculitis with renal involvement
A friend of mine has been diagnosed with vasculitis, we have just found out that his kidneys are leaking now. Has anyone experienced this, if so what are the long term effects? Thanks
A friend of mine has been diagnosed with vasculitis, we have just found out that his kidneys are leaking now. Has anyone experienced this, if so what are the long term effects? Thanks
athanvi111
in
Vasculitis UK
7 years ago
Latest research into ANCA associated Vasculitis and Rituximab
Came across this online. It's the report of a clinical trial comparing regular Rituximab infusions for AAV with tailored regimes taking into account ANCA and B cell levels. https://ancavasculitisnews.com/2017/12/04/tailored-rituxan-regimens-in-anca-patients-show-no-signficant-impact-on-relapses-in-phase
Came across this online. It's the report of a clinical trial comparing regular Rituximab infusions for AAV with tailored regimes taking into account ANCA and B cell levels. https://ancavasculitisnews.com/2017/12/04/tailored-rituxan-regimens-in-anca-patients-show-no-signficant-impact-on-relapses-in-phase
Hidden
in
Vasculitis UK
7 years ago
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Ear / Hearing complications?
Hello Friends, I am looking for information from anyone who is having ear problems with wegeners granulomatosis? I have had wegeners for 27 years now, and my many years of ear tubes, now I have a permanent hole in my ear where the tube was. I have lost 30% of hearing in that ear. But now, it seems that
Hello Friends, I am looking for information from anyone who is having ear problems with wegeners granulomatosis? I have had wegeners for 27 years now, and my many years of ear tubes, now I have a permanent hole in my ear where the tube was. I have lost 30% of hearing in that ear. But now, it seems that
Lillybweggie
in
Vasculitis UK
7 years ago
Anybody here with Pan
I went to the hospital yesterday to see the Vasculitis specialist who feels I could have pan I have had a skin biopsy which showed Vasculitis but they said it wasn’t enough to diagnose from and they need at least two firm markers They mentioned an angiogram and need to see my nerve biopsy that had taken
I went to the hospital yesterday to see the Vasculitis specialist who feels I could have pan I have had a skin biopsy which showed Vasculitis but they said it wasn’t enough to diagnose from and they need at least two firm markers They mentioned an angiogram and need to see my nerve biopsy that had taken
Perkles
in
Vasculitis UK
7 years ago
20 years since cerebral vasculitis diagnosis
I've been ill for 23 years, but always remember 5th November as "my" anniversary, because that was the day I had the huge battery of tests. 20 years ago this weekend coming up. https://vivsacademicblog.wordpress.com/2017/11/01/20-years-since-
cerebral
-
vasculitis
-diagnosis/
I've been ill for 23 years, but always remember 5th November as "my" anniversary, because that was the day I had the huge battery of tests. 20 years ago this weekend coming up. https://vivsacademicblog.wordpress.com/2017/11/01/20-years-since-
cerebral
-
vasculitis
-diagnosis/
vivdunstan
Volunteer
in
Vasculitis UK
7 years ago
Encouraging start to latest steroid dose drop
Much better at this point a week in than I expected to be, in terms of how things usually go wrong neurologically when I lower my steroids (I have
cerebral
/CNS
vasculitis
). So fingers crossed the latest drop will work, and in a couple of months I can look towards trying 7.5mg.
Much better at this point a week in than I expected to be, in terms of how things usually go wrong neurologically when I lower my steroids (I have
cerebral
/CNS
vasculitis
). So fingers crossed the latest drop will work, and in a couple of months I can look towards trying 7.5mg.
vivdunstan
Volunteer
in
Vasculitis UK
7 years ago
Could toxic medication cause positive ANCA??
A newbie here—just joined. Could you please explain to me if it is possible for me to have tested positive for p-3 c-ANCA six months ago but not have the GPA Vasculitis my specialists suspect?? I have had severe attacks to my eyes, ears, mouth, throat, esophagus, vocal cords, chest, sinuses, complete
A newbie here—just joined. Could you please explain to me if it is possible for me to have tested positive for p-3 c-ANCA six months ago but not have the GPA Vasculitis my specialists suspect?? I have had severe attacks to my eyes, ears, mouth, throat, esophagus, vocal cords, chest, sinuses, complete
beverlyann
in
Vasculitis UK
7 years ago
Advice re azathioprine and alcohol please
Hi Looking for experiences and research/advice on alcohol and azathioprine please. Partner just completed 6 cycles of cyclophosphamide having been diagnosed with GPA in July this year. He has done very well. GPA affected his lungs recent ct scan showed lungs now clear no other organ involvement (fingers
Hi Looking for experiences and research/advice on alcohol and azathioprine please. Partner just completed 6 cycles of cyclophosphamide having been diagnosed with GPA in July this year. He has done very well. GPA affected his lungs recent ct scan showed lungs now clear no other organ involvement (fingers
Main1234
in
Vasculitis UK
7 years ago
Diagnosed with Urticarial Vasculitis
Hi I am new to the board. I have been diagnosed with UV last month. Started on a high dose of prednisone. I don’t know what to expect. I am concerned that I won’t be able to live a normal life. Can anyone who has UV please give me some hope.
Hi I am new to the board. I have been diagnosed with UV last month. Started on a high dose of prednisone. I don’t know what to expect. I am concerned that I won’t be able to live a normal life. Can anyone who has UV please give me some hope.
Kareyc
in
Vasculitis UK
7 years ago
Rheumatoid Vasculitis: serious disease, difficult treatment.
My first post here. I've been battling Rheum. Arthritis for 50 years, was diagnosed with Rheum. Vasculitis 30 years ago, went into remission, and returned in August, 2017 with foot drop, weakness and decreased sensitivity in one leg. Since then, have been on daily steroids and chemotherapy with cyclophosphamide
My first post here. I've been battling Rheum. Arthritis for 50 years, was diagnosed with Rheum. Vasculitis 30 years ago, went into remission, and returned in August, 2017 with foot drop, weakness and decreased sensitivity in one leg. Since then, have been on daily steroids and chemotherapy with cyclophosphamide
Hidden
in
Vasculitis UK
7 years ago
Flu vaccine and disease progression
I have
cerebral
vasculitis
, in a very MS-like form. When I did my Blue Badge application renewal a few months ago my answers were significantly worse than the same time 3 years earlier, so definite signs of deterioration. Need to use both my sticks more, as needed, and my wheelchair.
I have
cerebral
vasculitis
, in a very MS-like form. When I did my Blue Badge application renewal a few months ago my answers were significantly worse than the same time 3 years earlier, so definite signs of deterioration. Need to use both my sticks more, as needed, and my wheelchair.
vivdunstan
Volunteer
in
Vasculitis UK
7 years ago
CNS Vasculitis
Following I had an unruptured brain aneurysm clipped 5 years ago. Things went well till 2 years ago. I have brain inflammation at the gauzed wrapped site where the clips are. The inflammation cause pressure on my optic nerve which in turn caused me to start loosing my vision. I live in Pittsburgh pa
Following I had an unruptured brain aneurysm clipped 5 years ago. Things went well till 2 years ago. I have brain inflammation at the gauzed wrapped site where the clips are. The inflammation cause pressure on my optic nerve which in turn caused me to start loosing my vision. I live in Pittsburgh pa
katuf
in
Vasculitis UK
7 years ago
In Early Stages of Testing for Wegeners
So, I recently had a sinus infection which is only the second one I had in my life. Im 59. Sinus infection cleared completely. I seem to have some pressure in the ears and mild aches in my ears that come and go and also some mild aching across my cheek bones that comes and goes. Anyway for some
So, I recently had a sinus infection which is only the second one I had in my life. Im 59. Sinus infection cleared completely. I seem to have some pressure in the ears and mild aches in my ears that come and go and also some mild aching across my cheek bones that comes and goes. Anyway for some
Dewitt29
in
Vasculitis UK
7 years ago
North East Vasculitis Support Meeting - Nov 11th Newcastle Hospital
Programme 10:00-10:10 Welcome and Introduction – Dr Alice Lorenzi & Karen Walker (CTD & Vasculitis Nurse Specialist) 10:10-10:30 Imaging in large vessel vasculitis with a focus on USS in Giant Cell Arteritis – Dr Ben Thompson 10:30-11:00 Advances in the management of large vessel
Programme 10:00-10:10 Welcome and Introduction – Dr Alice Lorenzi & Karen Walker (CTD & Vasculitis Nurse Specialist) 10:10-10:30 Imaging in large vessel vasculitis with a focus on USS in Giant Cell Arteritis – Dr Ben Thompson 10:30-11:00 Advances in the management of large vessel
John_Mills
Vasculitis UK
in
Vasculitis UK
7 years ago
Jennyzal
I have had Sjögren's syndrome for 6 years and have recently been diagnosed with
Cerebral
vasculitis
!
I have had Sjögren's syndrome for 6 years and have recently been diagnosed with
Cerebral
vasculitis
!
Jennyzal
in
Vasculitis UK
7 years ago
HIB vaccine
Has anyone had to have a Hibb vaccine? I have had numerous haemafilus influenza infections since having rituximab. In fact I can’t get rid of it at the moment and on 6 weeks of antibiotics. The hospital tested my antiobodies against hibb and they are low so I have to have a vaccine. I’m really hoping
Has anyone had to have a Hibb vaccine? I have had numerous haemafilus influenza infections since having rituximab. In fact I can’t get rid of it at the moment and on 6 weeks of antibiotics. The hospital tested my antiobodies against hibb and they are low so I have to have a vaccine. I’m really hoping
joannebond360
in
LUPUS UK
7 years ago
Interesting Study
Funded research study looking at the effect of Rituximab on flu vaccinations in patients with ANCA associated Vasculitis. Specifically whether Rituximab makes the vaccine less effective and what to do to mitigate the risk. http://www.arthritisresearchuk.org/research/grant-tracker-items/2017/vaccine-responses-in-anca-associated-vasculitis-aav.aspx
Funded research study looking at the effect of Rituximab on flu vaccinations in patients with ANCA associated Vasculitis. Specifically whether Rituximab makes the vaccine less effective and what to do to mitigate the risk. http://www.arthritisresearchuk.org/research/grant-tracker-items/2017/vaccine-responses-in-anca-associated-vasculitis-aav.aspx
Hidden
in
Vasculitis UK
7 years ago
West Country Vasculitis Support Group Pre-Xmas Lunch
It's never too early to start celebrating Christmas (!) so I hope lots of you are able to join us for a pre-festivities lunch Sunday 19th November 12.00 - 15.00 Smugglers Inn 27 Teignmouth Rd Dawlish EX7 0LA For those who haven't been before they do a fabulous carvery and I hear the steak & kidney
It's never too early to start celebrating Christmas (!) so I hope lots of you are able to join us for a pre-festivities lunch Sunday 19th November 12.00 - 15.00 Smugglers Inn 27 Teignmouth Rd Dawlish EX7 0LA For those who haven't been before they do a fabulous carvery and I hear the steak & kidney
DevonLottie
in
Vasculitis UK
7 years ago
Young children with Wegners / Vasculitis
Hi, I am looking to find anyone who has experience with young children affected by WGPA or vasculitis especially around airways, nose lungs etc. My daughter first became ill at two years old and was given a diagnosis of WG a year later after some very serious hospital admissions. She is currently six
Hi, I am looking to find anyone who has experience with young children affected by WGPA or vasculitis especially around airways, nose lungs etc. My daughter first became ill at two years old and was given a diagnosis of WG a year later after some very serious hospital admissions. She is currently six
Matnkay
in
Vasculitis UK
7 years ago
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