Search
Search
About
Log in
Join
Experiences with
Urticarial vasculitis
Posts
Communities
762 public posts
Filter results
Lost in the world of Vasculitis
I’m a newbie on here and to be honest to the whole world of Vasculitis. My dad has diagnosed with Vasculitis back in October when he was admitted to hospital with kidney failure, we embarked on the most horrendous journey of our lives, dad was given dialysis and then started on plasma exchange. He seemed
I’m a newbie on here and to be honest to the whole world of Vasculitis. My dad has diagnosed with Vasculitis back in October when he was admitted to hospital with kidney failure, we embarked on the most horrendous journey of our lives, dad was given dialysis and then started on plasma exchange. He seemed
Louloulou40
in
Vasculitis UK
7 years ago
WEIRD SKIN SENSATION
I`ve not been on for a while. My vasculitis seems to be under control. But I wonder if anyone can help. I seem to be loosing the sensation on my skin on my left side leg. I have an appointment to have a nerve test in January. It seems the be affecting my arm and also my face feels weird this morning.
I`ve not been on for a while. My vasculitis seems to be under control. But I wonder if anyone can help. I seem to be loosing the sensation on my skin on my left side leg. I have an appointment to have a nerve test in January. It seems the be affecting my arm and also my face feels weird this morning.
Lucywhiton
in
Vasculitis UK
7 years ago
What do you think are the unmet needs in Vasculitis?
Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. We meet twice a year for business meetings and also the Lockwood Club to share challenging cases, present new research etc. The next meeting is in January and the theme is " Unmet needs in Vasculitis ". The proposal is
Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. We meet twice a year for business meetings and also the Lockwood Club to share challenging cases, present new research etc. The next meeting is in January and the theme is " Unmet needs in Vasculitis ". The proposal is
Hidden
in
Vasculitis UK
7 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Increase in Lupus Symptoms
I was diagnosed in 2006 and for 2-3 year's it was quite rough. But then after getting rituximab infusion i was pretty much back to normal up until now 😞😞 in 2010 i had the infusion and been doing well for 7 year's. I still had random stomach upsets, GI problems, Migraines etc. About a month or two
I was diagnosed in 2006 and for 2-3 year's it was quite rough. But then after getting rituximab infusion i was pretty much back to normal up until now 😞😞 in 2010 i had the infusion and been doing well for 7 year's. I still had random stomach upsets, GI problems, Migraines etc. About a month or two
LifeAsALupie
in
LUPUS UK
7 years ago
GPA sufferer seeking financial advice
Hi, I am 49 years old and have been battling with GPA for 2 and a half years now and despite all the steroids, 16 pulses cyclophosphamide, 8 lots of retuximab and all of the other drugs, operations etc I am still ANCA positive. My consultant at Addenbrookes is still confident that remission can be achieved
Hi, I am 49 years old and have been battling with GPA for 2 and a half years now and despite all the steroids, 16 pulses cyclophosphamide, 8 lots of retuximab and all of the other drugs, operations etc I am still ANCA positive. My consultant at Addenbrookes is still confident that remission can be achieved
nicholson27
in
Vasculitis UK
7 years ago
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
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
Glacially slow tapering continuing
Preparing to lower my steroids again, to 8mg, when my next weekly pill pot is done on Friday night. Am cautiously hopeful I can ultimately get to 7.5mg and maybe even a bit under. But the medics and me are expecting me to be on a fairly high dose for life, plus Mycophenolate Mofetil. At least it's been
Preparing to lower my steroids again, to 8mg, when my next weekly pill pot is done on Friday night. Am cautiously hopeful I can ultimately get to 7.5mg and maybe even a bit under. But the medics and me are expecting me to be on a fairly high dose for life, plus Mycophenolate Mofetil. At least it's been
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
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
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
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
Rash
My skin biopsy suggested possibly
Urticarial
Vasculitis
. I'm awaiting a dermatology review on the 25th and have heard nothing from rheumatology yet despite the consultant knowing my results and the dermatologist copying him in to her letter 10 days ago and my having rung his secretary 3 times.
My skin biopsy suggested possibly
Urticarial
Vasculitis
. I'm awaiting a dermatology review on the 25th and have heard nothing from rheumatology yet despite the consultant knowing my results and the dermatologist copying him in to her letter 10 days ago and my having rung his secretary 3 times.
kazmac45
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
1
...
13
14
15
...
39
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
Vasculitis UK
638 results
LUPUS UK
87 results
Behçet's UK
21 results
View top 10 communities
Sort by
Most Relevant
Newest