Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,783 members • 6,757 posts

All posts for December 2016

New to vasculitis in 2016. Not my idea of an inner body experience.

Vasculitis diagnosis 2016. have had sjogrens for 5 years. In November I started having pain in my hips, thighs and shoulders mild at first but by the third...

Vasculitis diagnosis 2016. have had sjogrens for 5 years. In November I started...

Newkidontheblock

•7 years ago

2 Replies

Happy New Year and a "Big" Thank You to all those who have been fundraising for Vasculitis UK this past year (years) 😊

If you follow this link it will take you to the VUK fundraisers gallery http://www.vasculitis.org.uk/about/fundraisers-photo-gallery If your photo is not there...

If you follow this link it will take you to the VUK fundraisers gallery http://w...

Suzym2u

Moderator•7 years ago

1 Reply

Retuxan

If I am not getting much relief from retuxan what might be another good med to try?

If I am not getting much relief from retuxan what might be another good med to ...

dougbe

•7 years ago

1 Reply

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Aortitis- prednisolone tapering and relapse

Hello again, everyone. I've been tapering my prednisolone for about 8 months now, and very slowly. I got down to 2mg on Nov 25th this year. Today is day 34 on...

Hello again, everyone. I've been tapering my prednisolone for about 8 months now...

Suzycat

•7 years ago

12 Replies

Left leg agony from disc hernia & Wegeners

I have been living in extreme agony the likes of I cannot articulate, in my left buttock, groin and leg. The hernia at L4 & L5 is pressing upon the nerves and...

I have been living in extreme agony the likes of I cannot articulate, in my left...

Jools52

•7 years ago

21 Replies

Not had a great Christmas .....

Diagnosed with CSS in Dec2003. I've been fine on 5mg pred and 100mg Azathioprine for about a year. Been feeling really unwell over Christmas with 'the cough'...

Diagnosed with CSS in Dec2003. I've been fine on 5mg pred and 100mg Azathioprin...

laidbackreader

•7 years ago

4 Replies

what have I to do to get gp to listen

at times when I get bloods taken the nurse has a problem getting any and sometimes it Is ruined as it congeals before the test also get migraines with visual...

at times when I get bloods taken the nurse has a problem getting any and sometim...

cabrio

•7 years ago

6 Replies

Signing in with each notification????

Why do you require a "sign in" with each email notification? After all, how could I view the message if you hadn't approved-accepted my request to participate...

Why do you require a "sign in" with each email notification? After all, how cou...

dijomc9

•7 years ago

6 Replies

As if Wegener's wasn't enough update

Update.... I got discharged on Christmas Eve late afternoon and subsequently enjoyed a long family Christmas at my daughter's. It was very special and warm...

Update.... I got discharged on Christmas Eve late afternoon and subsequently en...

lfu2

•7 years ago

3 Replies

Wales Vasculitis Support Meeting January 21st 2017

For those living in Wales there is a Vasculitis Support meeting on the 21st January. Emma Hughes from Genetic Alliance Rare Disease UK will also be at this...

For those living in Wales there is a Vasculitis Support meeting on the 21st Janu...

Suzym2u

Moderator•7 years ago

1 Reply

Lost email to John Mills today

John has received an email from a lady this morning , when he was writing his reply, his email and the lady concerned email, suddenly disappeared. 😔 So if a...

John has received an email from a lady this morning , when he was writing his re...

Suzym2u

Moderator•7 years ago

Be the first to reply

Charting steroid doses over last decade

Just typed in my record of my steroid doses over the last decade into an Excel spreadsheet, and graphed it. The vertical axis is for daily steroid dose in mg....

Just typed in my record of my steroid doses over the last decade into an Excel s...

vivdunstan

Volunteer•7 years ago

6 Replies

Primary aortitis

Hello everyone, I was diagnosed with aortitis 1 year ago. It is only now, that I have made a decision to share my experience. It has been difficult to find and...

Hello everyone, I was diagnosed with aortitis 1 year ago. It is only now, that I...

Suzycat

•7 years ago

34 Replies

lfu2 As if Wegener's wasn't enough part 3

71 year old male with Wegener's Monday 28th Nov. Routine doctor's appointment after new antibiotics; had a blood test. Tuesday 29th Nov... not so routine phone...

71 year old male with Wegener's Monday 28th Nov. Routine doctor's appointment af...

lfu2

•7 years ago

6 Replies

Relapse?

My hubby has been in remission for nearly 3 years and ANCA negative. Diagnosed with WG in 2008. Latest blood test shows ANCA result is positive. Does this...

My hubby has been in remission for nearly 3 years and ANCA negative. Diagnosed ...

Inagh

•7 years ago

8 Replies

Rituximab - side effects

Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis,...

Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks af...

sealives

•7 years ago

8 Replies

Any experience with trigeminal neuralgia with wegeners?

Hubby dx wegeners for 2 yrs now and treatment going well For the past week has experienced extreme pain and after checking teeth and other nerve problems now...

Hubby dx wegeners for 2 yrs now and treatment going well For the past week has...

Lamama

•7 years ago

5 Replies

Introducing myself... ANCA positive

Hello I have joined this forum in an attempt to gain some further understanding about vasculitis and be part of a supportive community. I am frustrated and...

Hello I have joined this forum in an attempt to gain some further understanding...

Nozboss

•7 years ago

5 Replies

Fatigue even if in remission?

Hi all, I was diagnosed with MPA in October 2015 and am fortunate to be in remission after 2 courses of Rituxan given at 6 month intervals. Other than coming...

Hi all, I was diagnosed with MPA in October 2015 and am fortunate to be in remis...

Sybennett

•7 years ago

12 Replies

Double bypass of superior mesenteric and celiac arteries (I'm new here)

I'm new to this group. I live in the United States. About six weeks ago I had a major surgery to put a graft in for my intestinal arteries. The doctor...

I'm new to this group. I live in the United States. About six weeks ago I had ...

RiviS7

•7 years ago

12 Replies

Christmas wishes to one and all.

I wish all my fellow suffer's a very merry Christmas and a good new year! Lets hope that we have managble days over this period. Good luck to one and all. 👍...

I wish all my fellow suffer's a very merry Christmas and a good new year! Lets ...

Omil04

•7 years ago

3 Replies

Message from Santa "Only 9 working days until Christmas – don’t forget to order any repeat prescriptions you might need" 🎅🎄

Don't forget to order your repeat prescriptions to cover you for the holiday period.

Don't forget to order your repeat prescriptions to cover you for the holiday per...

Suzym2u

Moderator•7 years ago

5 Replies

West Country Vasculitis Talk - RD&E

Hi everyone, just a quick reminder that there will be a talk held for patients and carers at the RD&E in Exeter on Thursday, 9th February, 18.30. In addition...

Hi everyone, just a quick reminder that there will be a talk held for patients ...

DevonLottie

•7 years ago

Be the first to reply

Azathioprine (imuran)

Hi everyone, my fiance was diagnosed with Anca vasulitis in 2014. He started Azathioprine Aug 2015 and is currently still on it and so far doing well..thank...

Hi everyone, my fiance was diagnosed with Anca vasulitis in 2014. He started Aza...

Christina1960

•7 years ago

18 Replies

I have Alpha One Antitrypsin Defiiency and vasculitis is a risk factor.

Hello everyone, I thought I'd find information and companionship here along with medical and personal info to help me with vasculitis....

Hello everyone, I thought I'd find information and companionship here along with...

jetlag700

•7 years ago

1 Reply

Cerebral Vasculitis in Australia

I live in Australia which has a population of 24 million and the stats say Cerebral Vasculitis is 1-2 per million so there could be 24 of us in Australia with...

I live in Australia which has a population of 24 million and the stats say Cereb...

phil3

•7 years ago

4 Replies

Cerebral Vasculitis and CNS Vasculitis

17 years ago In 1999 was diagnosed with a Disease of brain and the Neurologist called it Isolated Angiitis and after a couple of years he changed the name of...

17 years ago In 1999 was diagnosed with a Disease of brain and the Neurologist c...

phil3

•7 years ago

3 Replies

All trying to cope with the change in our lives

Hi all , I would like to introduce myself . In July of this year I was diagnosed with with Wagners plus. Since this diagnosis I have been playing catch up. Has...

Hi all , I would like to introduce myself . In July of this year I was diagnosed...

Omil04

•7 years ago

6 Replies

Advice on prevention of pneumonia having recently lost our father (wegeners)

Hi all. We lost our father in October and I'm basically looking for some information and knowledge. We feel with better care he would still be here. He had...

Hi all. We lost our father in October and I'm basically looking for some informa...

Chelle24-09

•7 years ago

10 Replies

Vasculitis App

This company are developing an app for us. I've volunteered to share my experiences with them. As a bit of a techno geek this is right up my street. I will...

This company are developing an app for us. I've volunteered to share my experien...

ReidyWG

•7 years ago

3 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for December 2016

New to vasculitis in 2016. Not my idea of an inner body experience.

Happy New Year and a "Big" Thank You to all those who have been fundraising for Vasculitis UK this past year (years) 😊

Retuxan

Aortitis- prednisolone tapering and relapse

Left leg agony from disc hernia & Wegeners

Not had a great Christmas .....

what have I to do to get gp to listen

Signing in with each notification????

As if Wegener's wasn't enough update

Wales Vasculitis Support Meeting January 21st 2017

Lost email to John Mills today

Charting steroid doses over last decade

Primary aortitis

lfu2 As if Wegener's wasn't enough part 3

Relapse?

Rituximab - side effects

Any experience with trigeminal neuralgia with wegeners?

Introducing myself... ANCA positive

Fatigue even if in remission?

Double bypass of superior mesenteric and celiac arteries (I'm new here)

Christmas wishes to one and all.

Message from Santa "Only 9 working days until Christmas – don’t forget to order any repeat prescriptions you might need" 🎅🎄

West Country Vasculitis Talk - RD&E

Azathioprine (imuran)

I have Alpha One Antitrypsin Defiiency and vasculitis is a risk factor.

Cerebral Vasculitis in Australia

Cerebral Vasculitis and CNS Vasculitis

All trying to cope with the change in our lives

Advice on prevention of pneumonia having recently lost our father (wegeners)

Vasculitis App

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