Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,815 members • 6,819 posts

All posts for August 2012

Hello, I have suffered from GCA (temporal arteritis) for most of the last 4 years. I am now back in remission for the second time.

Has any diabetic member been able to beat this dreadful disease? High prednisone dose is a nightmare as I am diabetic. Should my symptoms return I dread...

Has any diabetic member been able to beat this dreadful disease? High prednisone...

maisie5

•12 years ago

2 Replies

WAV anyone recommend a wheelchair accessible vehicle? re-posted, can't see replies

hamble99b

Volunteer•12 years ago

5 Replies

anti-depressants do help

when I was well I was so laid back I was coming round the other way! The last thing I thought I'd need were anti-depressants. My gp told me I wasn't a...

when I was well I was so laid back I was coming round the other way! The last th...

hamble99b

Volunteer•12 years ago

3 Replies

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Restless leg syndrome??

I have had RLS for many years mainly affecting my legs but can involve my arms as well. I have had periods when it has gone but its now back with a vengance...

I have had RLS for many years mainly affecting my legs but can involve my arms a...

Porky

•12 years ago

7 Replies

WAV anyone recommend a wheelchair accessible vehicle?

hamble99b

Volunteer•12 years ago

4 Replies

Anybody with urticarial vasculitis help answer a few questions :)

My son who is 9 has urticarial vasculitis only diagnosed last year after biopsy and still waiting the results of specialist bloods taken weeks ago, I wanted to...

My son who is 9 has urticarial vasculitis only diagnosed last year after biopsy ...

Betty4

•12 years ago

11 Replies

LDN

Has anyone with urticarial vasculitis tried Lowdosenaltrexone ( LDN) I,m reading good reports about it but would prefer to trust this sight with an honest...

Has anyone with urticarial vasculitis tried Lowdosenaltrexone ( LDN) I,m reading...

jackrussell

•12 years ago

7 Replies

Vasculitis UK - Christmas cards

I know it's only August, but the Trust has just taken delivery of its first ever selection of quality charity Christmas cards. These come in four different...

I know it's only August, but the Trust has just taken delivery of its first ever...

PatriciaAnn

•12 years ago

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ATOS

apparently, the audit office want Atos penalised by the DWP for "underperformance" and not setting "sufficiently challenging" targets. they should read these...

apparently, the audit office want Atos penalised by the DWP for "underperformanc...

hamble99b

Volunteer•12 years ago

1 Reply

Possible new Vasculitis Support Group in the Bournmouth/Southhampton/Pool/Dorchester/Salisbury area

We have been contacted by a lady who wants to start a support group in the Bournmouth/SouthHampton/Pool/?Dorchester/Salisbury area ...would anyone be...

We have been contacted by a lady who wants to start a support group in the Bourn...

John_Mills

Volunteer•12 years ago

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If anyone would like a hard copy "Route Map for Vasculitis" please would you send me a private message

If anyone would like a hard copy "Route Map for Vasculitis" for your GP, Vasculitis Nurse or Consultant or just a copy for yourself please send me a private...

If anyone would like a hard copy "Route Map for Vasculitis" for your GP, Vasculi...

John_Mills

Volunteer•12 years ago

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Has anyone been told that they have a low immunoglobin level due to Rituximab?

If so, has iv ig been offered or have they been told that repeated Rituximab may be cancelled? My new Rheumatologist at the local Hospital was suggesting that...

If so, has iv ig been offered or have they been told that repeated Rituximab may...

SusanCh

•12 years ago

5 Replies

BBC Watchdog finds 'weaknesses' in sickness benefit system (between the Government and Atos)

This is an interesting article from the BBC which Martin found. I thought I would share it. http://www.bbc.co.uk/news/uk-19244639

This is an interesting article from the BBC which Martin found. I thought I woul...

John_Mills

Volunteer•12 years ago

2 Replies

I was diagnosed with WG in March 2010, can anybody enlighten me as to the difference between anca positive and anca negative.

Kezzia

•12 years ago

1 Reply

Is it or isn't it? Can you help please?

Hi everyone,I did post here a few months ago on behalf of my daughter,who like so many have had a nightmare trying to get a dxs. Then a few months ago. She...

Hi everyone,I did post here a few months ago on behalf of my daughter,who like s...

nanny4

•12 years ago

7 Replies

I have to have an operation under general anaesthetic.

because i have a blocked tear duct, they told me that they need to cut the side of my nose open near to the corner of the eye so they can then make a new...

because i have a blocked tear duct, they told me that they need to cut the side ...

Ulysses31

•12 years ago

4 Replies

Abdominal pain. Does anyone have an analgesic that actually works? Not to be confused with gastritis, which is also a problem. Thanks

JennyH-M

•12 years ago

4 Replies

pred-head humour

I was in a charity shop today. A book was on a shelf, lying on its side. The one word title was written in large capitals. I turned to my friend and asked her...

I was in a charity shop today. A book was on a shelf, lying on its side. The one...

hamble99b

Volunteer•12 years ago

2 Replies

New "Understanding Vasculitis" information leaflet now available

A simple vasculitis information leaflet to share with friends family and work colleagues to help them understand all about Vasculitis.

A simple vasculitis information leaflet to share with friends family and work co...

John_Mills

Volunteer•12 years ago

12 Replies

E-newsletter and Vasculitis UK Christmas cards.

The Vuk Christmas cards have arrived today. If anyone would like a pack or two please message me or send an email sandjmills@btinternet.com with your address...

The Vuk Christmas cards have arrived today. If anyone would like a pack or two p...

John_Mills

Volunteer•12 years ago

Be the first to reply

Feeling so much better

It is 3.5 years since I was hospitalised for vasculitis WG. I Ifinished all medication 9 months ago, apart from calcium as I have osteopenia. Apart from the...

It is 3.5 years since I was hospitalised for vasculitis WG. I Ifinished all medi...

mags1701

•12 years ago

6 Replies

Getting a wheelchair

Hello, I am in hospital at the moment and I have been enquiring about getting a wheelchair. When the airways become narrow it can be difficult to get...

Hello, I am in hospital at the moment and I have been enquiring about gettin...

Lucylucciano

•12 years ago

7 Replies

max strength ear plugs

I'm going to spend a short break with a friend who snores very loudly. Any one found any ear plugs that would help? thanks, sandra

I'm going to spend a short break with a friend who snores very loudly. Any one f...

hamble99b

Volunteer•12 years ago

6 Replies

I have WG and just starting on Azthripine drug can anyone tell me about any adverse effects or what to expect

archie2

•12 years ago

14 Replies

Pain Clinic appointment - IN FOUR MONTHS!!!

I have WG and have suffered from bad, virtually constant, headaches for the last 18 months. I have seen a Consultant Neurologist who gave my GP a list of 3...

I have WG and have suffered from bad, virtually constant, headaches for the last...

Dbis22

•12 years ago

12 Replies

Rituximab does anyone know the regime for this drug and what about side effects???

Hidden

•12 years ago

8 Replies

only recently diagnosed with wegeners.hearing gone in left ear.Starting on predisnolone.,next week.Should not have have looked it up online

A bit frightened of the possible prognosis. Thank you john.

buddy70

•12 years ago

40 Replies

Bowel involvement

Turns out it was my bowel that had become involved. Just back from 5 night stay in Worcester Royal after a PR bleed and significant lower intestinal pain....

Turns out it was my bowel that had become involved. Just back from 5 night s...

Wellsie

•12 years ago

2 Replies

Follow Vasculitis UK on Twitter https://twitter.com/vascuk

https://twitter.com/vascuk

John_Mills

Volunteer•12 years ago

Be the first to reply

Im here on behalf of a friend

So I have found myself very close to someone suffering from Vasculitis and thanks to this has also developed Addisons disease. Admittedly I had never heard of...

So I have found myself very close to someone suffering from Vasculitis and thank...

alexj

•12 years ago

9 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for August 2012

Hello, I have suffered from GCA (temporal arteritis) for most of the last 4 years. I am now back in remission for the second time.

WAV anyone recommend a wheelchair accessible vehicle? re-posted, can't see replies

anti-depressants do help

Restless leg syndrome??

WAV anyone recommend a wheelchair accessible vehicle?

Anybody with urticarial vasculitis help answer a few questions :)

LDN

Vasculitis UK - Christmas cards

ATOS

Possible new Vasculitis Support Group in the Bournmouth/Southhampton/Pool/Dorchester/Salisbury area

If anyone would like a hard copy "Route Map for Vasculitis" please would you send me a private message

Has anyone been told that they have a low immunoglobin level due to Rituximab?

BBC Watchdog finds 'weaknesses' in sickness benefit system (between the Government and Atos)

I was diagnosed with WG in March 2010, can anybody enlighten me as to the difference between anca positive and anca negative.

Is it or isn't it? Can you help please?

I have to have an operation under general anaesthetic.

Abdominal pain. Does anyone have an analgesic that actually works? Not to be confused with gastritis, which is also a problem. Thanks

pred-head humour

New "Understanding Vasculitis" information leaflet now available

E-newsletter and Vasculitis UK Christmas cards.

Feeling so much better

Getting a wheelchair

max strength ear plugs

I have WG and just starting on Azthripine drug can anyone tell me about any adverse effects or what to expect

Pain Clinic appointment - IN FOUR MONTHS!!!

Rituximab does anyone know the regime for this drug and what about side effects???

only recently diagnosed with wegeners.hearing gone in left ear.Starting on predisnolone.,next week.Should not have have looked it up online

Bowel involvement

Follow Vasculitis UK on Twitter https://twitter.com/vascuk

Im here on behalf of a friend

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