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Experiences with
Urticarial vasculitis
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Dad Microscopic Polyangiitis
Hi Everyone Dad has just finished his sixth course of Cyclophosphamide and has been told he will now have to take Azathioprine for at least 2 years. He only has kidney involvement. I was wondering whether anyone can tell me whether the Azathioprine has an affect on quality of life. He's struggling
Hi Everyone Dad has just finished his sixth course of Cyclophosphamide and has been told he will now have to take Azathioprine for at least 2 years. He only has kidney involvement. I was wondering whether anyone can tell me whether the Azathioprine has an affect on quality of life. He's struggling
Hidden
in
Vasculitis UK
8 years ago
Positive result to ANCA?
Recently diagnosed with SLE, today my rheumy told me I have a positive result for ANCA which I think is indicative of Vasculitis. She said don't worry you can't have vasculitis and LUPUS, but after some searching I have found out you can. Please can anyone shed any light on this? Tripitaka X
Recently diagnosed with SLE, today my rheumy told me I have a positive result for ANCA which I think is indicative of Vasculitis. She said don't worry you can't have vasculitis and LUPUS, but after some searching I have found out you can. Please can anyone shed any light on this? Tripitaka X
Tripitaka
in
LUPUS UK
8 years ago
Summarizing Medical Issues
Good day vasci friends. For months now, I've been putting off a chore: namely, summarizing my medical conditions, treatments and ongoing issues into a succinct report I can use myself or give to my physicians. Since my July 2013 MPA kidney diagnosis, I've been referred around the Chicagoland area visiting
Good day vasci friends. For months now, I've been putting off a chore: namely, summarizing my medical conditions, treatments and ongoing issues into a succinct report I can use myself or give to my physicians. Since my July 2013 MPA kidney diagnosis, I've been referred around the Chicagoland area visiting
michichgo
in
Vasculitis UK
8 years ago
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Possible Vasculitis
First of all I would like to say what a fantastic site. I have found all comments extremely helpful and it puts in to perspective how serious this disease can be My story I was released from hospital 3 weeks ago with pneumonia, blood in the lungs and "possible vasculitis" I was in for a total of 6 days
First of all I would like to say what a fantastic site. I have found all comments extremely helpful and it puts in to perspective how serious this disease can be My story I was released from hospital 3 weeks ago with pneumonia, blood in the lungs and "possible vasculitis" I was in for a total of 6 days
Ianhend
in
Vasculitis UK
8 years ago
About me - as at September 2016
I have Coronary Heart Disease, for which I have an annual review with my GP. This is fortunate because in November 2013 it enabled her to discover that I had a kidney problem. Without this annual review, things would have gone unnoticed until they got much more serious. Investigation took almost a year
I have Coronary Heart Disease, for which I have an annual review with my GP. This is fortunate because in November 2013 it enabled her to discover that I had a kidney problem. Without this annual review, things would have gone unnoticed until they got much more serious. Investigation took almost a year
jgold
in
Vasculitis UK
8 years ago
Vasculitis a lifelong mystery ?
vasculitis
stopped
vasculitis
stopped
Juneelizabeth
in
Vasculitis UK
8 years ago
Vasculitis route map
Hi I am the mother of a young man 25 who has had one testicle removed through vasculitis under the John Radcliffe Oxford. When he was first presented they told him he had testicular cancer. Post op diagnosed as vasculitis . Today he has pain in his remaining testi and gas gone to a&e in london where
Hi I am the mother of a young man 25 who has had one testicle removed through vasculitis under the John Radcliffe Oxford. When he was first presented they told him he had testicular cancer. Post op diagnosed as vasculitis . Today he has pain in his remaining testi and gas gone to a&e in london where
Kitkat101
in
Vasculitis UK
8 years ago
Hip replacement looming.
Hi, I am hoping you might give me some extra encouragement. I am due to have a total hip replacement on Monday. I have been putting it off, as my Mum is terminally ill, and I have been splitting my time at home and staying with Mum. But now it will be weeks until I can travel to see her. So this is wearing
Hi, I am hoping you might give me some extra encouragement. I am due to have a total hip replacement on Monday. I have been putting it off, as my Mum is terminally ill, and I have been splitting my time at home and staying with Mum. But now it will be weeks until I can travel to see her. So this is wearing
frog
in
LUPUS UK
8 years ago
Google Analytics for June 28th - July 28th 2016 - Vasculitis UK website
Giant Cell Arteritis Churg Strauss Syndrome
Urticarial
Vasculitis
GPA
Giant Cell Arteritis Churg Strauss Syndrome
Urticarial
Vasculitis
GPA
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Cellcept v myfenax update
I posted a while ago that I was concerned that my symptoms had stared to return after I swapped from branded mycophenolate, (cellcept) to the NHS unbranded (myfenax) I saw the specialistnurse last week and expressed my theory. She was listened and got a senior regarding from another team to see me as
I posted a while ago that I was concerned that my symptoms had stared to return after I swapped from branded mycophenolate, (cellcept) to the NHS unbranded (myfenax) I saw the specialistnurse last week and expressed my theory. She was listened and got a senior regarding from another team to see me as
creaky
in
LUPUS UK
8 years ago
Rituximab infusion due, but no preliminary bloodtests?
I had two Rituximab infusions back in February and am due to have another two shortly. I have found my energy and mood have improved considerably. However, I am surprised that the date for the infusion is on the same day as my check up appointment - ie that is when they will be taking bloods, but they
I had two Rituximab infusions back in February and am due to have another two shortly. I have found my energy and mood have improved considerably. However, I am surprised that the date for the infusion is on the same day as my check up appointment - ie that is when they will be taking bloods, but they
Neriah
in
LUPUS UK
8 years ago
Rituximab
Hi all has anyone here experienced Rituximab infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't . So far I have not felt any benefit
Hi all has anyone here experienced Rituximab infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't . So far I have not felt any benefit
Skid
in
LUPUS UK
8 years ago
Wegener's spreading its wings.
Oops, posted this in NRAS by mistake. 70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement
Oops, posted this in NRAS by mistake. 70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement
lfu2
in
Vasculitis UK
8 years ago
Are Angiograms useful in diagnosing Vasculitis?
Hello, I have heard mixed things about whether an angiogram is useful in diagnosing vasculitis. I was wondering how many of you received one while trying to be diagnosed, and whether it helped in your diagnosis. My GP will not order me one, but i see him today and am hoping he will change his mind. It
Hello, I have heard mixed things about whether an angiogram is useful in diagnosing vasculitis. I was wondering how many of you received one while trying to be diagnosed, and whether it helped in your diagnosis. My GP will not order me one, but i see him today and am hoping he will change his mind. It
MattC13
in
Vasculitis UK
8 years ago
pANCA positive, GPA and Anti-GBM (Goodpasture Syndrome)
Hello - my mother has pANCA positive, GPA and she has Anti-GBM disease which is named as Good pasture Syndrome. This has impacted her Kidney and she is on dailysis (twice in a week). The damaged has been very quick for her, RPGN. Plasmapheresis 5 shots were done. Endoxon 5 times (15 days) have been
Hello - my mother has pANCA positive, GPA and she has Anti-GBM disease which is named as Good pasture Syndrome. This has impacted her Kidney and she is on dailysis (twice in a week). The damaged has been very quick for her, RPGN. Plasmapheresis 5 shots were done. Endoxon 5 times (15 days) have been
gouravjazz
in
Vasculitis UK
8 years ago
Vasculitis of the GI Tract
Hello, I am a 25 year old male, and my GP has recently referred me to a vasculitis specialist at UCLA. From what I have read, vasculitis of the GI tract is very rare. However, I believe that there is a possibility that I could have it. I have had terrible GI problems all the way from my colon up to my
Hello, I am a 25 year old male, and my GP has recently referred me to a vasculitis specialist at UCLA. From what I have read, vasculitis of the GI tract is very rare. However, I believe that there is a possibility that I could have it. I have had terrible GI problems all the way from my colon up to my
MattC13
in
Vasculitis UK
8 years ago
Some Google Analytics for the Vasculitis UK website May 30th - June 29th 2016
Vasculitis UK website Google Analytics May 30th - Jun 29th 2016 22, 900 users 66, 500 pages viewed 2mins 35 seconds average time viewing Top 5 Pages viewed
Urticarial
Vasculitis
Granulomatosis with Polyangiitis ( WG ) What is Vasculitis Churg Strauss Syndrome ( EGPA ) Henoch Schonlein Purpura
Vasculitis UK website Google Analytics May 30th - Jun 29th 2016 22, 900 users 66, 500 pages viewed 2mins 35 seconds average time viewing Top 5 Pages viewed
Urticarial
Vasculitis
Granulomatosis with Polyangiitis ( WG ) What is Vasculitis Churg Strauss Syndrome ( EGPA ) Henoch Schonlein Purpura
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Alendronic acid and osteonecrosis of the jaw
I've already mentioned this on FB, but there may be others on here that are not on FB. I'm experiencing bone trying to poke through my gum and although I've not been officially diagnosed, it's looking likely that I have osteonecrosis of the jaw, which can be caused by the taking of Alendronic acid. I
I've already mentioned this on FB, but there may be others on here that are not on FB. I'm experiencing bone trying to poke through my gum and although I've not been officially diagnosed, it's looking likely that I have osteonecrosis of the jaw, which can be caused by the taking of Alendronic acid. I
suffolkgirl
in
Vasculitis UK
8 years ago
Burst blood vessels in eye
Wondered if any one can tell me if you can have a burst blood vessel at back of eye with having vasculitis, optician writing to GP to explain what they found in recent eye test, I have anca p with positive MPO antibodies, keep getting splinter heamoriges, raised ESR and CRP levels, now burst blood vessel
Wondered if any one can tell me if you can have a burst blood vessel at back of eye with having vasculitis, optician writing to GP to explain what they found in recent eye test, I have anca p with positive MPO antibodies, keep getting splinter heamoriges, raised ESR and CRP levels, now burst blood vessel
valrene
in
Vasculitis UK
8 years ago
HSP / Vasculitis skin rash
I was diagnosed 5-6 weeks ago with HSP, the doctor in A&E prescibed some cocodamol and told me to follow up with my GP in a couple of weeks. My GP prescribed me antibiotics and signed me off to rest up. I've had the arthritic joint pain which I still have a mild form in my hands and I've had the GI bleed
I was diagnosed 5-6 weeks ago with HSP, the doctor in A&E prescibed some cocodamol and told me to follow up with my GP in a couple of weeks. My GP prescribed me antibiotics and signed me off to rest up. I've had the arthritic joint pain which I still have a mild form in my hands and I've had the GI bleed
Iain71
in
Vasculitis UK
8 years ago
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