Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for June 2012

How high is high with an ANCA result?

i think this sort of question has been asked before but I would love to know exactly what is meant by my ANCA results. At worst, during a bad flare, my P...

i think this sort of question has been asked before but I would love to know exa...

Ayla

Volunteer•12 years ago

26 Replies

Does anyone else feel rubbish in heavy weather?

I have been feeling swollen,achy, extremely fatigued and can't be bothered this last week. Hope it goes away soon.

I have been feeling swollen,achy, extremely fatigued and can't be bothered this ...

LynneJ

Vasculitis UK•12 years ago

7 Replies

Does anyone get pain in the ball joints of their feet making it difficult to walk?

Recently, more so after stopping my steroids (3 months ago), I have experienced excruciating pain in the big toe ball joints of my feet. I cannot walk very...

Recently, more so after stopping my steroids (3 months ago), I have experienced ...

HiveMind

•13 years ago

14 Replies

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effective relief for pain with the flares?

i get horrible pain when my skin has flared up, not just my joints but the actual spots themself, exactly like the image below. it feels like numbing and...

i get horrible pain when my skin has flared up, not just my joints but the actua...

krasavica

•13 years ago

6 Replies

Predisolone and muscle weakness

Has anyone experienced extreme muscle weakness whilst taking predisolone? My overall symptoms have really improved but my muscle weakness is still very much...

Has anyone experienced extreme muscle weakness whilst taking predisolone? My ov...

Galaxy2

•13 years ago

26 Replies

Benefits and Work June 26th 2012 Newsletter

http://www.benefitsandwork.co.uk/news/latest-news/1556-26-june-newsletter

John_Mills

Volunteer•13 years ago

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NHS - Online Renal Patient View Service

Hi all, I felt this might be of help to Vasculitis patients whom see a renal specialists, maybe to other also. My last appointment with my renal consultant...

Hi all, I felt this might be of help to Vasculitis patients whom see a renal spe...

Regie79

•13 years ago

3 Replies

An update on where and what Vasculitis UK are about at the moment...

Just an update on what Vasculitis UK are about at the moment....VUK are involved with the current consultations on the “UK Plan for Rare Diseases” and working...

Just an update on what Vasculitis UK are about at the moment....VUK are involved...

John_Mills

Volunteer•13 years ago

12 Replies

If anyone would like to become a member of Vasculitis UK and is not already....

If you would like to become a memeber of Vasculitis UK please contact Susan sandjmills@btinternet.com We can send you the latest Spring newsletter and a...

If you would like to become a memeber of Vasculitis UK please contact Susan sand...

John_Mills

Volunteer•13 years ago

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Can anyone explain how I have neutrophilia while on Prenisolone? Does it mean my dose is too low?

My neurologist has suggested that I have low grade cerebral vasculitis. The symptoms, (mainly MS type + migraines) build up over time and usually respond to a...

My neurologist has suggested that I have low grade cerebral vasculitis. The symp...

Melon

•13 years ago

5 Replies

The poll I am unable to add to Other? P-anca Positive

Ziggy

•13 years ago

1 Reply

SORRY...we will have to start again with the two new polls..

healthUnlocked won't let me update the second poll so will have to satrt again when I can talk to the Admin guy. Sorry about all this.please be patient... :-)

healthUnlocked won't let me update the second poll so will have to satrt again w...

John_Mills

Volunteer•13 years ago

2 Replies

Wegener's and neurological symptoms?

Hi all, I have a question to ask about WG, is it common to have neurological symptoms with Wegener’s? The reason I ask is that I have been getting shooting...

Hi all, I have a question to ask about WG, is it common to have neurological sym...

Regie79

•13 years ago

6 Replies

TWO NEW POLLS.. What type of vasculitis you have?..

please look at both polls carefully before you complete the polls . If your type of vasculitis is not there please leave a comment on the second poll on what...

please look at both polls carefully before you complete the polls . If your type...

John_Mills

Volunteer•13 years ago

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Has anyone seen this website?

www.saveourbones.com This website may be of interest to some of you.

HiveMind

•13 years ago

4 Replies

Has anyone had had neutropenia .?

I have just got home from a week long stay in hospital as my neutrophil count was down to 0.1. I had a very strong course of antibiotics and the have now gone...

I have just got home from a week long stay in hospital as my neutrophil count wa...

Mikki

•13 years ago

4 Replies

Has anyone been diagnosed with cutaneous vasculitus ?

After an appendix operation 3yrs ago . I was quite ill being in hospital for 5 weeks . Had very large painful rash , when this rash fades it leaves bruise like...

After an appendix operation 3yrs ago . I was quite ill being in hospital for 5 w...

sarah27

•13 years ago

6 Replies

Hi, Has anyone been diagnosed with Osteoporosis with their Vasculitus? Particulary Churg Strauss?

5 weeks after my sister was diagnosed with Churg Stauss at 37, she has now just been diagnosed with osteoporosis, but they can't treat her for it until her...

5 weeks after my sister was diagnosed with Churg Stauss at 37, she has now just ...

Cloe

•13 years ago

13 Replies

Orders for the Route Map, T shirts, hoodies, polos and fun t shirts.

I have just finished packing and parcelling up the last orders for Route Maps for vasculitis, t shirts hoodies etc today... so if anyone has not received...

I have just finished packing and parcelling up the last orders for Route Maps fo...

John_Mills

Volunteer•13 years ago

7 Replies

Has anyone had yellow nail syndrome with vasculitis. My partner has Vasculitis and two of his fingers have turned yellow?

matswesslen

•13 years ago

3 Replies

Has anyone had their eggs frozen before starting Cyclophosphamide infusions?

John_Mills

Volunteer•13 years ago

5 Replies

vasculitus ????

morning i am a newbie to this site , a bit about me back in march 2012 after moving home i got what looked like a pea size lump on right pinky...

morning i am a newbie to this site , a bit about me back in march...

messy94

•13 years ago

2 Replies

What's the difference between HUV and HUVS ?

I'm not sure if anyone else on here is diagnosed with Hypocomplementemic Urticarial Vasculitis but having just discovered this link :...

I'm not sure if anyone else on here is diagnosed with Hypocomplementemic Urticar...

RichardE

Volunteer•13 years ago

4 Replies

My 15 yr old son has had 4 x 8hrs of intravenous gamma globulin and 12 hours of pred steroid, but seems no better.

Any advice would be appreciated and should he have an angio gram as risks are hight with no real prognosis.

Any advice would be appreciated and should he have an angio gram as risks are hi...

dcorbett

•13 years ago

3 Replies

does anyone have itchy palms of your hands and soles of your feet? (i have WG)

mandijt

•13 years ago

5 Replies

ROUTE MAP FOR VASCULITIS

I posted another 30 RM's out yesterday if I have missed anyone please send me a private message. Thank you Susan

I posted another 30 RM's out yesterday if I have missed anyone please send me a ...

John_Mills

Volunteer•13 years ago

6 Replies

Please support Kirsty if you feel you can.. Kirsty is taking on the 3 Peak Challenge for Vasculitis UK.

Just follow the link to Kirsty's justgiving page... https://www.justgiving.com/Kirsty-Landles

Just follow the link to Kirsty's justgiving page... https://www.justgiving.com/...

John_Mills

Volunteer•13 years ago

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Please read Danielle's story... .

Danielle's mum lost a long battle with Microscopic Polyangitis on May 15th of this year. Please support Danielle if you feel you can...... but do take a...

Danielle's mum lost a long battle with Microscopic Polyangitis on May 15th of t...

John_Mills

Volunteer•13 years ago

1 Reply

Volunteers Wanted!!

Volunteers wanted to take part in a study into "Fatigue in patients with ANCA Associated Vasculitis" ...Dr Andrew McClean is still looking for healthy...

Volunteers wanted to take part in a study into "Fatigue in patients with ANCA As...

John_Mills

Volunteer•13 years ago

17 Replies

inaugural meeting in Cardiff 23/06/2012,,,have lost details of venue and time please

ehughes

•13 years ago

1 Reply

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for June 2012

How high is high with an ANCA result?

Does anyone else feel rubbish in heavy weather?

Does anyone get pain in the ball joints of their feet making it difficult to walk?

effective relief for pain with the flares?

Predisolone and muscle weakness

Benefits and Work June 26th 2012 Newsletter

NHS - Online Renal Patient View Service

An update on where and what Vasculitis UK are about at the moment...

If anyone would like to become a member of Vasculitis UK and is not already....

Can anyone explain how I have neutrophilia while on Prenisolone? Does it mean my dose is too low?

The poll I am unable to add to Other? P-anca Positive

SORRY...we will have to start again with the two new polls..

Wegener's and neurological symptoms?

TWO NEW POLLS.. What type of vasculitis you have?..

Has anyone seen this website?

Has anyone had had neutropenia .?

Has anyone been diagnosed with cutaneous vasculitus ?

Hi, Has anyone been diagnosed with Osteoporosis with their Vasculitus? Particulary Churg Strauss?

Orders for the Route Map, T shirts, hoodies, polos and fun t shirts.

Has anyone had yellow nail syndrome with vasculitis. My partner has Vasculitis and two of his fingers have turned yellow?

Has anyone had their eggs frozen before starting Cyclophosphamide infusions?

vasculitus ????

What's the difference between HUV and HUVS ?

My 15 yr old son has had 4 x 8hrs of intravenous gamma globulin and 12 hours of pred steroid, but seems no better.

does anyone have itchy palms of your hands and soles of your feet? (i have WG)

ROUTE MAP FOR VASCULITIS

Please support Kirsty if you feel you can.. Kirsty is taking on the 3 Peak Challenge for Vasculitis UK.

Please read Danielle's story... .

Volunteers Wanted!!

inaugural meeting in Cardiff 23/06/2012,,,have lost details of venue and time please

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