Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,810 members • 6,817 posts

All posts for June 2013

Lincolnshire Vasculitis Support Group - September meeting

Early warning! The next Lincolnshire Support Group meeting will take place at the Thorald Arms pub in Harmston, near Lincoln, at 2 - 4.30pm on Sunday 1st...

Early warning! The next Lincolnshire Support Group meeting will take place at t...

Ayla

Volunteer•11 years ago

1 Reply

Vasculitis Awareness Ireland

Sorry for the short notice, but there will be a support group meeting of the Vasculitis Awareness Ireland group this week WEDNESDAY 19th JUNE in Galway. The...

Sorry for the short notice, but there will be a support group meeting of the Vas...

PatriciaAnn

•11 years ago

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This is Ruth. Ruth has sadly, just lost her battle with Behcets Disease

This you tube video was made back in November. Ruth very sadly, has lost her battle with Behcets Disease just this last week. Behcets Disease is one of the...

This you tube video was made back in November. Ruth very sadly, has lost her bat...

John_Mills

Volunteer•11 years ago

7 Replies

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Does anyone else get these symptoms?

I have RV. SYMPTOMS: Forearms get hot and muscles become hard. Then flushing starts from elbows to hands. This lasts from about half hour to one hour. The...

I have RV. SYMPTOMS: Forearms get hot and muscles become hard. Then flushing s...

Albasain

•11 years ago

1 Reply

Polls

One or two people have been quite keen to suggest polls, which is great. But we do need to keep the polls quite simple as we are limited with the...

One or two people have been quite keen to suggest polls, which is great. But we ...

John_Mills

Volunteer•11 years ago

1 Reply

Prednisone and insomnia

Hi, Have been on prednisolone now for 10 days and last night I couldn't sleep at all. was still awake at 4.30 am and then was up at 9.30. I have heard this can...

Hi, Have been on prednisolone now for 10 days and last night I couldn't sleep at...

Littledot3

•11 years ago

13 Replies

I need advice saw the wrong Dr again on Friday and felt belittled

Hello, this feels like its turning into saga! Complained to medical sectary re mix up with not being booked into clinic on Monday after MRI scan and also Pals...

Hello, this feels like its turning into saga! Complained to medical sectary re ...

Motherof4

•11 years ago

7 Replies

Trooping the Colour

Many people will be in London today to watch the Trooping the Colours. This is a tradition that goes back to when regimental flags where the rally points for...

Many people will be in London today to watch the Trooping the Colours. This is a...

Jann

•11 years ago

3 Replies

Yorkshire Dales Walking Festival - Sunday 18th August

Hi everyone, Just a reminder that Vasculitis UK will be taking part in the Yorkshire Dales walking festival on Sunday the 18th of August. We’re still...

Hi everyone, Just a reminder that Vasculitis UK will be taking part in the Yo...

RichardE

Volunteer•11 years ago

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Anyone have Splinter Hemorrhages?

HI I haven't been diagnosed yet. Its been nearly 3 years since my symptoms have started. I have on and off days and always changing symptoms. Not sure if this...

HI I haven't been diagnosed yet. Its been nearly 3 years since my symptoms have...

Shezian

•11 years ago

8 Replies

PR3 levels

I have WG and I have had a letter from hosp saying that my PR3 is elevated at 121, does anyone know if this is high and what is "normal" ?

I have WG and I have had a letter from hosp saying that my PR3 is elevated at 12...

kimmw

•11 years ago

2 Replies

Azathioprine not suitable now.What next?

Been to clinic today, and just had a call to say stop Azathioprine as it's affecting my liver. Have to go back next week now to see what else they will try....

Been to clinic today, and just had a call to say stop Azathioprine as it's affec...

suffolkgirl

•11 years ago

8 Replies

West Country BBQ

West Country BBQ on 30 June from 1.00 pm. Can you let me know if you are planning to come to our BBQ in Shaldon, near Teignmouth? Returned forms to me please...

West Country BBQ on 30 June from 1.00 pm. Can you let me know if you are plannin...

DevonLottie

•11 years ago

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Did anyone see 24 hours in A & E last night series 3 episode 10.

With a young man aged Twenty-four called Lee who suffers from Behçet's Syndrome. repeated tonight at 23:05 channel 4. Well worth a look!!! has helped our...

With a young man aged Twenty-four called Lee who suffers from Behçet's Syndrome....

alan-lee

•11 years ago

6 Replies

HUVS

If you have Hypocomplementemic Urticarial Vasculitis Syndrome and you have tried many medications Methatrexate IM and/or PO, immurane, cytoxin, cellcept,...

If you have Hypocomplementemic Urticarial Vasculitis Syndrome and you have tried...

Texas195260

•11 years ago

8 Replies

boy with behcet's disease on c4 9pm tonight 12/06/13

24 hours in A&E they showed a preview of some of the patients to be featured and mentioned this young man.

24 hours in A&E they showed a preview of some of the patients to be featured an...

hamble99b

Volunteer•11 years ago

2 Replies

everything tastes of woodsmoke

I have WG and have little but often distorted sense of smell and taste. At the moment I have a constant taste of burnt smoke and nothing is nice or edible -...

I have WG and have little but often distorted sense of smell and taste. At the ...

hamble99b

Volunteer•11 years ago

6 Replies

Vasculitis (Churg-Strauss Syndrome) - my story so far .. 11 weeks on

I thought that I would share my recent, and still ongoing, experience of vasculitis which has made me realise just how fortunate I have been in getting a...

I thought that I would share my recent, and still ongoing, experience of vasculi...

JontyW

•11 years ago

10 Replies

Blood donor???

Hiya....I wanted to know if anyone has tried giving blood given and its been accepted considering our medical diagnosis? As we are all on long term meds? I...

Hiya....I wanted to know if anyone has tried giving blood given and its been acc...

rrahman

•11 years ago

6 Replies

Feeling sorry for myself

I'm having a really bad time at the moment my feet are so painful. I feel like I'm falling I have to keep holding on to steady myself I also feel like my feet...

I'm having a really bad time at the moment my feet are so painful. I feel like I...

Amanda51

•11 years ago

2 Replies

South Wales support meeting

Don't forget South Wales support group are meeting this Saturday (15th June) at Llantrisant Leisure Centre at 1.30pm,

Don't forget South Wales support group are meeting this Saturday (15th June) at ...

JackieT

•11 years ago

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Addenbrooke's Hospital

Can anyone tell me if Dr David Jayne at Addenbrooke's Hospital is still open to seeing NHS Patients. My Hospital said they do not think he is seeing any new...

Can anyone tell me if Dr David Jayne at Addenbrooke's Hospital is still open to ...

Mitz

•11 years ago

11 Replies

Surprise news

Attended my regular EMG and NVC tests in neuro today. I got told my left sural nerve is as good as dead, which came as a bit of a surprise and disappointment;...

Attended my regular EMG and NVC tests in neuro today. I got told my left sural n...

Wellsie

•11 years ago

2 Replies

Back has flipped....what painkillers can we take apart from paracetamol?

Woke up on Friday with a cricked back, which got worse as the weekend went on. I managed to see a Physio this morning who is sure it is just a muscular spasm,...

Woke up on Friday with a cricked back, which got worse as the weekend went on. I...

BronteM

•11 years ago

6 Replies

I may scream!

Went to GOSH today for scan and afterwards to see consultant as instructed on Friday. Grace had to be carried in as her leg muscle is really hurting and she...

Went to GOSH today for scan and afterwards to see consultant as instructed on Fr...

Motherof4

•11 years ago

3 Replies

Something to make you think

I heard this on the radio yesterday. I found it interesting. It is about compassion in the health service. It goes someway to explain the attitude of some...

I heard this on the radio yesterday. I found it interesting. It is about compass...

LynneJ

Vasculitis UK•11 years ago

1 Reply

Describe our group

The West Yorkshire Support Group had a really nice informal lunch yesterday. We were a small select group and had a really good laugh and a chat. I hope more...

The West Yorkshire Support Group had a really nice informal lunch yesterday. We...

LynneJ

Vasculitis UK•11 years ago

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continuing treatment

I was diagnosed Feb2011....been on mycophenelate mofeteil more or lesss since then.IF the vasculitis has gone...but am still taking this medication will this...

I was diagnosed Feb2011....been on mycophenelate mofeteil more or lesss since th...

ehughes

•11 years ago

6 Replies

Does anyone know of any trials for "mepolizumab" in the UK.

I know it was given and Orphan drug designation (EU/3/13/1116) on 12/3/2013 for the treatment of Churg Strauss Syndrome or if there are any hospitals that can...

I know it was given and Orphan drug designation (EU/3/13/1116) on 12/3/2013 for ...

Mitz

•11 years ago

2 Replies

Ethical and Social Implications of Genome Sequencing

Genetic research has a huge potential for advances in treatment of diseases like Vasculitis. This is an interesting article considering the ethical and social...

Genetic research has a huge potential for advances in treatment of diseases like...

RichardE

Volunteer•11 years ago

3 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for June 2013

Lincolnshire Vasculitis Support Group - September meeting

Vasculitis Awareness Ireland

This is Ruth. Ruth has sadly, just lost her battle with Behcets Disease

Does anyone else get these symptoms?

Polls

Prednisone and insomnia

I need advice saw the wrong Dr again on Friday and felt belittled

Trooping the Colour

Yorkshire Dales Walking Festival - Sunday 18th August

Anyone have Splinter Hemorrhages?

PR3 levels

Azathioprine not suitable now.What next?

West Country BBQ

Did anyone see 24 hours in A & E last night series 3 episode 10.

HUVS

boy with behcet's disease on c4 9pm tonight 12/06/13

everything tastes of woodsmoke

Vasculitis (Churg-Strauss Syndrome) - my story so far .. 11 weeks on

Blood donor???

Feeling sorry for myself

South Wales support meeting

Addenbrooke's Hospital

Surprise news

Back has flipped....what painkillers can we take apart from paracetamol?

I may scream!

Something to make you think

Describe our group

continuing treatment

Does anyone know of any trials for "mepolizumab" in the UK.

Ethical and Social Implications of Genome Sequencing

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