Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for December 2017

Vasculitis UK Website Google Analytics for November 30th to December 30th 2017 ( For those with an interest )

Nov 30th - Dec 30th 2017 23,413 Users 46,908 Pages Viewed Average time - 2 mins viewing 75% Revisiting 25% New visitors Top 5 Diseases Viewed EGPA ( Churg...

Nov 30th - Dec 30th 2017 23,413 Users 46,908 Pages Viewed Average time - 2 mins ...

Suzym2u

Moderator•7 years ago

1 Reply

Going in to full remission after Two years,

Took my last steroids tablet this morning been on over 2years I have Anca Vasculitis which hit my kidneys which was at 6% two years ago which I had only days...

Took my last steroids tablet this morning been on over 2years I have Anca Vascu...

JR27

•7 years ago

5 Replies

New here

Hello, I am new here and am wondering if something Im experiencing could be linked to my possible diagnosis of vasculitis. I have not been diagnosed with...

Hello, I am new here and am wondering if something Im experiencing could be link...

MrsMohawk

•7 years ago

4 Replies

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Prurigo Nodulares/ Lupus

Hello all, I have recently broken out with hard itchy hives, that turn into crusted over lesions. They started on my right arm and hsve spread over back,...

Hello all, I have recently broken out with hard itchy hives, that turn into crus...

MNJones76

•7 years ago

8 Replies

Persistent cough

Hi my husbands GPA is quiet at the moment , fairly newly diagnosed. He has received the usual treatment and is now on Aza 150 mgs. He has a dry cough not all...

Hi my husbands GPA is quiet at the moment , fairly newly diagnosed. He has recei...

Main1234

•7 years ago

8 Replies

Azathioprine for PACNS?

Last month I was diagnosed with PACNS, or Primary CNS Vasculitis. I've been taking daily prednisone and the plan was for monthly infusions of Cytoxan. When I...

Last month I was diagnosed with PACNS, or Primary CNS Vasculitis. I've been taki...

Cunafish

•7 years ago

19 Replies

Bloating and Rituximab

Hi all, I trust you all had as good a xmas as possible given the diseases we endure. I have been like an hermit and not even had one drink but it doesn’t...

Hi all, I trust you all had as good a xmas as possible given the diseases we en...

Balderick

•7 years ago

17 Replies

My Christmas Fairy

There is a fairy upon my tree, that little angel is as old as me. Although she's a bit tatty, her wings a bit frayed, I won't part with her, and on the...

There is a fairy upon my tree, that little angel is as old as me. Although s...

hamble99b

Volunteer•7 years ago

7 Replies

Lost sense of smell and taste

Hi all and merry Christmas. I have had GPA since mid 2015. Gone through all the usual treatments including prednisolone, rituximab, and cyclophosphamide of...

Hi all and merry Christmas. I have had GPA since mid 2015. Gone through all the ...

nicholson27

•7 years ago

16 Replies

ANCA Antibodies

Hello, I’ve just had a blood test results that indicate positive ANCA antibodies, nuclear, and ANCA LIU Of 57. My blood report suggested the doctor should...

Hello, I’ve just had a blood test results that indicate positive ANCA antibodies...

Lavender-Flowers

•7 years ago

5 Replies

Possible CNS involvement with ANCA Vasc

Since my last post, I received a call from my consultant on Monday evening. He asked me to come in the next day to discuss the results of my MRI. He explained...

Since my last post, I received a call from my consultant on Monday evening. He a...

Vo321

•7 years ago

6 Replies

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...

I’m a newbie on here and to be honest to the whole world of Vasculitis. My dad h...

Louloulou40

•7 years ago

15 Replies

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...

I`ve not been on for a while. My vasculitis seems to be under control. But I won...

Lucywhiton

•7 years ago

4 Replies

Merry Christmas

I know that it's a bit clichéd but, I urge you ALL- yes, even you- to enjoy the Season. Whether, or not, you actually Believe in Jesus. So 'forget' the Endless...

I know that it's a bit clichéd but, I urge you ALL- yes, even you- to enjoy the ...

AndrewT

•7 years ago

6 Replies

Churg strauss

I'm on predestone and rumituximab plus azerpheine blood thinners and calcium

Popeye123

•7 years ago

1 Reply

Churg strauss

Hi everyone I've been diagnosed with churg strauss in the last three months I've not got much patience but I'm finding I'm tired washed out no energy at all...

Hi everyone I've been diagnosed with churg strauss in the last three months I've...

Popeye123

•7 years ago

16 Replies

Strange altered sensations in the skin

I have neuropathy in both my feet, no pain other than it feels like my soles of my feet are falling off and a fizzy sensation on the skin on the inside of the...

I have neuropathy in both my feet, no pain other than it feels like my soles of ...

Hidden

•7 years ago

11 Replies

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...

Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry...

Hidden

•7 years ago

34 Replies

Biphosonates ( Alendronic acid etc )

Came across this on Twitter http://bjr.boneandjoint.org.uk/content/6/10/602 It's some new research on the effect of Biphosonates on bone and whether they...

Came across this on Twitter http://bjr.boneandjoint.org.uk/content/6/10/602 It...

Hidden

•7 years ago

19 Replies

For those with an interest , a tweet from this morning - ANCA Associated Vasculitis & Lung Involvement

https://www.medpagetoday.com/rheumatology/generalrheumatology/69929

John_Mills

Volunteer•7 years ago

2 Replies

Hypogonadism and vasculitis + Rituximab

I had my 12 weekly depo injection of testosterone today and have my second infusion of the biosimilar Texan I think it’s called. I had a very weird experience...

I had my 12 weekly depo injection of testosterone today and have my second infus...

Balderick

•7 years ago

2 Replies

Health insurance

Can anyone recommend private health insurance that DOES include Vasculitis...,the ones I have spoken to have said no as it’s a chronic condition? Help...

Can anyone recommend private health insurance that DOES include Vasculitis...,th...

shella

•7 years ago

4 Replies

CRP

I think the reason inflammation markers are called CRP, is that the higher they are the more crap you be. :-) Sally Morecrap :-)

I think the reason inflammation markers are called CRP, is that the higher they ...

Sima1952

•7 years ago

4 Replies

New paediatric Rare Disease Centre

Great Ormand St in London have started building a new paediatric rare disease research facility and treatment centre. Vasculitis UK have supported research...

Great Ormand St in London have started building a new paediatric rare disease re...

Hidden

•7 years ago

Be the first to reply

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...

Hi, I am 49 years old and have been battling with GPA for 2 and a half years now...

nicholson27

•7 years ago

43 Replies

14 yr old boy, HSP diagnosed 2 years ago , kidney involvement now suffering severe joint pain for first time and psoriasis on neck

Hi if anyone can help my son and I we would be eternally grateful. My 14 year old son got diagnosed with HSP in Jan 2015 after starting with the purple rash...

Hi if anyone can help my son and I we would be eternally grateful. My 14 year o...

Spoofer

•7 years ago

4 Replies

Recently diagnosed with ANCA Vasculitis.

Hi there! I'm new to this forum and on the 20th November I was diagnosed with pr3 small vessel vasculitis (extra renal syndrome). Prior to this diagnosis, I...

Hi there! I'm new to this forum and on the 20th November I was diagnosed with pr...

Vo321

•7 years ago

14 Replies

Evidence base for nutritional advice

As many of you know I am a big fan of evidence based medicine and making sure that we receive the most appropriate, evidence based care. The question of...

As many of you know I am a big fan of evidence based medicine and making sure th...

Hidden

•7 years ago

Be the first to reply

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 insura...

John_Mills

Volunteer•7 years ago

8 Replies

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...

A friend of mine has been diagnosed with vasculitis, we have just found out that...

athanvi111

•7 years ago

2 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for December 2017

Vasculitis UK Website Google Analytics for November 30th to December 30th 2017 ( For those with an interest )

Going in to full remission after Two years,

New here

Prurigo Nodulares/ Lupus

Persistent cough

Azathioprine for PACNS?

Bloating and Rituximab

My Christmas Fairy

Lost sense of smell and taste

ANCA Antibodies

Possible CNS involvement with ANCA Vasc

Lost in the world of Vasculitis

WEIRD SKIN SENSATION

Merry Christmas

Churg strauss

Churg strauss

Strange altered sensations in the skin

What do you think are the unmet needs in Vasculitis?

Biphosonates ( Alendronic acid etc )

For those with an interest , a tweet from this morning - ANCA Associated Vasculitis & Lung Involvement

Hypogonadism and vasculitis + Rituximab

Health insurance

CRP

New paediatric Rare Disease Centre

GPA sufferer seeking financial advice

14 yr old boy, HSP diagnosed 2 years ago , kidney involvement now suffering severe joint pain for first time and psoriasis on neck

Recently diagnosed with ANCA Vasculitis.

Evidence base for nutritional advice

Has anyone diagnosed with ANCA associated vasculitis had any success in getting life insurance?

Vasculitis with renal involvement

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