Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for January 2017

Travel Insurance

Hi Guys, when I have finished my chemotherapy I would like to have a short break in Europe, but I know getting insurance may be a problem. Also I will get...

Hi Guys, when I have finished my chemotherapy I would like to have a short brea...

Omil04

•8 years ago

8 Replies

New App available for Vasculitis Patients - February 2017

This has been posted on the website today it is A new App called patientMpower is available for Vasculitis patients. It offers personalised tips on staying...

This has been posted on the website today it is A new App called patientMpower i...

Suzym2u

Moderator•8 years ago

13 Replies

Southampton Children's Hospital Rare Renal Workshop/Conference January 25th 2017

John, Lynn and Susan from Vasculitis UK were asked to attend and have a VUK stand at the Southampton Children's Hospital , Paediatric Rare Renal...

John, Lynn and Susan from Vasculitis UK were asked to attend and have a VUK stan...

Suzym2u

Moderator•8 years ago

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Biopsy result - inactive axonal neuropathy and IgG ?

Two months after sural nerve biopsy now, and only have numbness to report. no pain and all calmed down. I've Just got a letter with biopsy results and I have...

Two months after sural nerve biopsy now, and only have numbness to report. no pa...

TallKeith

•8 years ago

1 Reply

Vasculitis flare ups on and off for years and drs are confused. Please. Has anyone had this problem. I feel very alone with it

It all started when i was 6. I started having spots apear all over my body and i was bleeding internally aswell as external with ulcers abd lesions. This was...

It all started when i was 6. I started having spots apear all over my body and i...

Hidden

•8 years ago

9 Replies

We need some help please, does anyone speak Romanian?

If so please could you send me a message or write to me, susan@vasculitus.org.uk thank you 😊

If so please could you send me a message or write to me, susan@vasculitus.org.uk...

Suzym2u

Moderator•8 years ago

4 Replies

Wegener flare ups

I am 25 years old. I was diagnosed with WG in 2013 (affecting only my lungs). I have taken rituximab and prednisone and methotrexate. ( I hate them all but has...

I am 25 years old. I was diagnosed with WG in 2013 (affecting only my lungs). I ...

Natalia_91

•8 years ago

6 Replies

Neils Vasculitis birthday challenge

http://m.bedfordshire-news.co.uk/vasculitis-dad-taking-on-snowdon-just-12-months-after-organ-failure/story-30074174-detail/story.html

http://m.bedfordshire-news.co.uk/vasculitis-dad-taking-on-snowdon-just-12-months...

Neildougherty

•8 years ago

10 Replies

Pain

Evening all am in so much pain with my shoulders n neck could cry nothing helping with the pain fed up isn't the word let hope I get some sleep xx

Evening all am in so much pain with my shoulders n neck could cry nothing helpin...

Jayney7

•8 years ago

16 Replies

Polyarteritis Nodosa - awaiting diagnosis

Hi folks, I am new to this site/forum but have found it excellent. My detailed story so far..... January 2016 - I started to have bladder control problems. I...

Hi folks, I am new to this site/forum but have found it excellent. My detailed s...

Tc3844

•8 years ago

23 Replies

Work, Health & Disability Consultation - Department of Health

For those with an interest , you may want to respond to this consultation. VUK Chairman, John Mills will be responding to the consultation on behalf of...

For those with an interest , you may want to respond to this consultation. VUK C...

Suzym2u

Moderator•8 years ago

Be the first to reply

Capillaritis

Just curious if anyone has experienced capillaritis? I have speckles on the top of my foot and going up the ankle. Wondering if it goes away? Gets worse?

Just curious if anyone has experienced capillaritis? I have speckles on the top ...

greg31

•8 years ago

1 Reply

First Rituxumab Infusion - Advice, please!

Hi, I am having my first ever RTX infusion at Guy's Hospital this Monday. They haven't told me anything. Any suggestions that you have to make it easier I...

Hi, I am having my first ever RTX infusion at Guy's Hospital this Monday. They h...

Jjoy

•8 years ago

16 Replies

European Vasculitis Group Education Course - Cambridge January 11th - 13th January 2017

John Mills Chairman of Vasculitis UK was asked to join and speak at the EUVAS (European Vasculitis Group) 3 day vasculitis education course, this last week in...

John Mills Chairman of Vasculitis UK was asked to join and speak at the EUVAS (E...

Suzym2u

Moderator•8 years ago

2 Replies

Hearing problems from Wegeners GPA

I am wondering if anyone else has had to have grommets fitted as a result of ear damage caused by WG. I was diagnosed in June 2014 and was actually fitted...

I am wondering if anyone else has had to have grommets fitted as a result of ear...

poppet2

•8 years ago

12 Replies

DVT.s and Vasculitis

Hi- I would like to ask if there is possibly a link or a clue that there is Vasculitis present when you have a DVT. I went to the surgery about my leg, I had...

Hi- I would like to ask if there is possibly a link or a clue that there is Vasc...

friz42

•8 years ago

8 Replies

Left waiting-

I am not sure what my consultant is waiting for- I am P anca positive (MPO) with Sjorens diagnosed, (Via lip biopsy only). My bloods show very little and...

I am not sure what my consultant is waiting for- I am P anca positive (MPO) with...

friz42

•8 years ago

4 Replies

Hi not very good at this do my...

Hi not very good at this do my best my name is Lindsay 56yrs female at the moment having test for vasculitis to be more precise granulomatosis with polyangitis...

Hi not very good at this do my best my name is Lindsay 56yrs female at the momen...

Hidden

•8 years ago

5 Replies

reduction in methotrexate

I have Churg Strauss Syndrome (EPGA) for which I have been taking methotrexate for nearly 5 years. After running some tests my consultant is suggesting that...

I have Churg Strauss Syndrome (EPGA) for which I have been taking methotrexate ...

sarahdollygirl

•8 years ago

6 Replies

Can I change my Hemotologist?

Been over a year of being in limbo.October had phone review ,6 months previous lots of blood tests.Now mid January new year,no response since last phone call...

Been over a year of being in limbo.October had phone review ,6 months previous l...

jan85uk

•8 years ago

4 Replies

Google Analytics for the Vasculitis UK Website from December 2nd 2016 - January 2nd 2017

22,136 visits 55,000 pages viewed 2 mins average session 76% new visits 24% return visits Top countries UK, US, Australia, Canada, India, Ireland,...

22,136 visits 55,000 pages viewed 2 mins average session 76% new visits 24% r...

Suzym2u

Moderator•8 years ago

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Vasculitis Patient Symposium and Education Day - March 4th 2017

In 2015 the very first Vasculitis Patient Symposium was held at the London Business Design Centre. The Patient Symposium was held the day prior to the...

In 2015 the very first Vasculitis Patient Symposium was held at the London Busin...

Suzym2u

Moderator•8 years ago

1 Reply

Vasculitis Education Day

Looking forward to the Vasculitis Education Day in Manchester on March 4th. http://www.vasculitis.org.uk/news/news-symposium-2017 if you are going and would...

Looking forward to the Vasculitis Education Day in Manchester on March 4th. htt...

Hidden

•8 years ago

Be the first to reply

Follow up

Hello Everyone Just to keep you posted. My boyfriend Robert had his last R infusion a month ago, his breathing have improved tremendously, he still have...

Hello Everyone Just to keep you posted. My boyfriend Robert had his last R infus...

mejiagabriela

•8 years ago

2 Replies

Not Diagnosed - could there be a connection with vasculitis

Investigation online has brought me here my Inflammatory markers up on blood test last week .Have had ongoing heart failure symptoms ignored , pulmonary...

Investigation online has brought me here my Inflammatory markers up on blood te...

skybluepink

•8 years ago

3 Replies

Immunoglobulin Replacement

Is anyone on here having infusions/injections to replace low immunoglobulins? I've been advised by immunology at derriford hospital that I'm at risk of severe...

Is anyone on here having infusions/injections to replace low immunoglobulins? I'...

DevonLottie

•8 years ago

9 Replies

Channel4 Vasculitis & leg ulcers

Just watched food unwrapped on Channel4 it is series 10 episode 1. There was a lady who has Vasculitis, they didn't say which one. She had extremely bad leg...

Just watched food unwrapped on Channel4 it is series 10 episode 1. There was a l...

dizzy49

•8 years ago

4 Replies

Positive p, anca

Hi any know about positive p, anca x

Jayney7

•8 years ago

6 Replies

Introduction

Hi I'm Vascy_errol I was diagnosed with HSP first in 2003, then had a second bout in Jul 15. Now in remission following IV methylpred infusion and the...

Hi I'm Vascy_errol I was diagnosed with HSP first in 2003, then had a second bou...

vascy_errol

•8 years ago

6 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for January 2017

Travel Insurance

New App available for Vasculitis Patients - February 2017

Southampton Children's Hospital Rare Renal Workshop/Conference January 25th 2017

Biopsy result - inactive axonal neuropathy and IgG ?

Vasculitis flare ups on and off for years and drs are confused. Please. Has anyone had this problem. I feel very alone with it

We need some help please, does anyone speak Romanian?

Wegener flare ups

Neils Vasculitis birthday challenge

Pain

Polyarteritis Nodosa - awaiting diagnosis

Work, Health & Disability Consultation - Department of Health

Capillaritis

more questions

First Rituxumab Infusion - Advice, please!

European Vasculitis Group Education Course - Cambridge January 11th - 13th January 2017

Hearing problems from Wegeners GPA

DVT.s and Vasculitis

Left waiting-

Hi not very good at this do my...

reduction in methotrexate

Can I change my Hemotologist?

Google Analytics for the Vasculitis UK Website from December 2nd 2016 - January 2nd 2017

Vasculitis Patient Symposium and Education Day - March 4th 2017

Vasculitis Education Day

Follow up

Not Diagnosed - could there be a connection with vasculitis

Immunoglobulin Replacement

Channel4 Vasculitis & leg ulcers

Positive p, anca

Introduction

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