Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for March 2014

As a vasculitis patient, you may be able to help in clinical research.....

http://www.vasculitis.org.uk/research/participate-in-research

John_Mills

Volunteer•11 years ago

5 Replies

The British Heart Foundation have started a petition for fairer prescription charges. (From Twitter this afternoon via Lupus UK )

For anyone who maybe interested in reading and signing this petition http://campaigning.bhf.org.uk/ea-action/action?ea.client.id=57&ea.campaign.id=26016

For anyone who maybe interested in reading and signing this petition http://ca...

John_Mills

Volunteer•11 years ago

1 Reply

Progress so far

I've just completed week 5 of couch to 5k and can't believe I ran for 20 mins, i should be match fit at this rate for my race for life in aid of vasculitis UK...

I've just completed week 5 of couch to 5k and can't believe I ran for 20 mins, i...

3113nettie

•11 years ago

3 Replies

Want to take advantage of all our features? Just log in!

P-ANCA MPO positive since 2008.

Now the rheumy says I don't have vasculitis. One other test is positive now, and it is for the disease that the actor died from. I don't understand. I also...

Now the rheumy says I don't have vasculitis. One other test is positive now, and...

cruznlcsw

•11 years ago

8 Replies

The diagnosis and classification of giant cell arteritis

Tweeted this morning, so thought I would share it. http://www.sciencedirect.com/science/article/pii/S0896841114000201?np=y

Tweeted this morning, so thought I would share it. http://www.sciencedirect.com...

Suzym2u

Moderator•11 years ago

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Have you puffy/ purple circles under eyes?... as "a symptom" of vasculitis?

This is a new one for me, however it seems to coincide with all my other CNS vasculitis symptoms.

This is a new one for me, however it seems to coincide with all my other CNS vas...

RareLily

•11 years ago

8 Replies

Two events this weekend fundraising and raising awareness for Vasculitis. One in Carlisle and one in Northampton.

Anita Jobling is setting herself a New Year challenge to undertake the Carlisle Duathlon on 30th March 2014....

Anita Jobling is setting herself a New Year challenge to undertake the Carlisle ...

Suzym2u

Moderator•11 years ago

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West Country support group lunch

Our next lunch will be on Sunday 27 April at the Barn Owl, Guardian Road, Exeter EX1 3PE from 12.00 noon. The pub is just off the M5 near Exeter Airport. As...

Our next lunch will be on Sunday 27 April at the Barn Owl, Guardian Road, Exeter...

DevonLottie

•11 years ago

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Become a service user or carer member of the group developing NICE guidance about moving from children's to adult services for young people.

The National Institute for Health and Care Excellence (NICE) and the NICE Collaborating Centre for Social Care are looking for applications from service users...

The National Institute for Health and Care Excellence (NICE) and the NICE Colla...

Suzym2u

Moderator•11 years ago

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Uncomfortable heavy painful legs with WG and Stage 4/5 Kidney Failure.

I have WG and Chronic Kidney Failure and this last week I have been taking Paracetamol for painful heavy legs. I just don't know what to do with them, they are...

I have WG and Chronic Kidney Failure and this last week I have been taking Parac...

Essex-jill

•11 years ago

5 Replies

cataracts because of steroids

having a cataract op next week,and was just wondering if anyone else has had it done,and what the recovery time was for them for instance when you can drive...

having a cataract op next week,and was just wondering if anyone else has had it ...

quinnster

•11 years ago

7 Replies

I was told today that older people with vasculitis are not given medication. Could that be why the doctors haven't helped me yet?

I was told they don't know what to do by my internist.

cruznlcsw

•11 years ago

14 Replies

I have one question for all of you. Have anyone of you ever been on meds for high cholesterol?

Dawnbuttrum

•11 years ago

13 Replies

Hi fellow vasculiters , Has anyone had problems with biting their tongue whilst asleep?

I started doing this about 2 years ago and despite having a bite guard made at the orthodontist its still a problem as I have recently bitten through even...

I started doing this about 2 years ago and despite having a bite guard made at t...

maisie5

•11 years ago

7 Replies

Would you be willing to take part in a new study? Genetic Alliance UK are looking for patients and families to take part...

My Condition, My DNA - Shaping genomic sequencing uptake in UK healthcare Interested in how the genetic information of you and your family could be used in the...

My Condition, My DNA - Shaping genomic sequencing uptake in UK healthcare Intere...

Suzym2u

Moderator•11 years ago

1 Reply

Diarrhoea

I inject 17.5mg of methotrexate weekly. One of the common side effects listed is diarrhoea. We all had a tummy bug about 3 weeks ago with diarrhoea and...

I inject 17.5mg of methotrexate weekly. One of the common side effects listed is...

Hidden

•11 years ago

9 Replies

Vasculitis UK 2014 AGM - 11 May 2014

The 2014 Annual General Meeting of Vasculitis UK will be held on Sunday 11th May, 12.30pm at the Novotel, Bostocks Lane, Long Eaton, Derbyshire, NG10 4EP. The...

The 2014 Annual General Meeting of Vasculitis UK will be held on Sunday 11th May...

Suzym2u

Moderator•11 years ago

4 Replies

Weight loss whilst still on steroids ?

My 13 year old daughter has wegeners granulomatosis - diagnosed August last year - she is now on 5mg of prednisolone and is struggling with her weight gain. Am...

My 13 year old daughter has wegeners granulomatosis - diagnosed August last year...

Bailey24

•11 years ago

12 Replies

dapsone

is anyone taking dapsone,as part of their treatment I was put on this 3 weeks ago,and feel absolutely awful,much worse than when I was on chemo feel sick all...

is anyone taking dapsone,as part of their treatment I was put on this 3 weeks ag...

quinnster

•11 years ago

6 Replies

What exercise do you do and how often? How easy did you find getting your fitness back following treatments and to what level?

I have just finished my chemo treatments and have signed up to a beginner's running club. I was stiff after my first attempt (which expected) and I hope I can...

I have just finished my chemo treatments and have signed up to a beginner's runn...

Hidden

•11 years ago

18 Replies

Palpitations

Does anyone else get palpitations,i find them really scary. I also take Levo for thyroid disease and reduced my meds and they almost stopped. Now they are back...

Does anyone else get palpitations,i find them really scary. I also take Levo for...

yorkshiregirl44

•11 years ago

15 Replies

The London Vasculitis Support Group Meeting 27th April 2014

The London Vasculitis Group Meeting will be held at the Swiss Cottage Community Centre, Winchester Road London NW3 on Sunday 27th April starting at 12 o'clock,...

The London Vasculitis Group Meeting will be held at the Swiss Cottage Community ...

Albasain

•11 years ago

2 Replies

Doctor v Consultant

Consultant requested the doctor, after a wait of 3 months, I be retested after a positive p-anca blood test. Nurse took bloods and I rang for result to be told...

Consultant requested the doctor, after a wait of 3 months, I be retested after a...

Linmur1957

•11 years ago

22 Replies

Become a patient partner - Wolverhampton CCG

Patient Partners is a free membership scheme providing interested local people regular information and also the opportunity to share their experiences of using...

Patient Partners is a free membership scheme providing interested local people r...

Suzym2u

Moderator•11 years ago

Be the first to reply

Human lung made in lab for first time

From CNN but this sounds encouraging for the long term. http://edition.cnn.com/2014/02/14/health/texas-lungs-grown/index.html

From CNN but this sounds encouraging for the long term. http://edition.cnn.com/2...

Hidden

•11 years ago

4 Replies

Martin loves to run and has raised money for other charities over the years. Martin is running this weekend for Vasculitis UK.

Martin was recently diagnosed with Wegener's Granulomoatosis ( GPA ) He is currently on chemotherapy treatment and if that isn't tough enough he still...

Martin was recently diagnosed with Wegener's Granulomoatosis ( GPA ) He is cur...

Suzym2u

Moderator•11 years ago

4 Replies

Starting this weekend team members: Georgia, Kathleen and Chloe will undertake three fantastic fundraising events for Vasculitis

During 2014 team members: Georgia Upjohn, Kathleen Macnee and Chloe Hopgood will undertake three fantastic fundraising events for Vasculitis UK. On 23rd March...

During 2014 team members: Georgia Upjohn, Kathleen Macnee and Chloe Hopgood will...

Suzym2u

Moderator•11 years ago

Be the first to reply

A question about remission.

I understand vasculitis can go into remission. I was wondering if this is a fixed medical term determined by medical professionals or is it a way people use to...

I understand vasculitis can go into remission. I was wondering if this is a fixe...

pinktiger53

•11 years ago

9 Replies

Can we be Organ Donors?

I totally want to do this. But can "we"?

HiveMind

•11 years ago

6 Replies

Has anyone had difficulty getting help, because the doctor is concerned about putting you on medication due to age and side effects?

Here in the States people are sue happy, and my rheumatologist appears fearful that if I have severe side effects he will get sued! So now I have to wait yet...

Here in the States people are sue happy, and my rheumatologist appears fearful t...

cruznlcsw

•11 years ago

13 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for March 2014

As a vasculitis patient, you may be able to help in clinical research.....

The British Heart Foundation have started a petition for fairer prescription charges. (From Twitter this afternoon via Lupus UK )

Progress so far

P-ANCA MPO positive since 2008.

The diagnosis and classification of giant cell arteritis

Have you puffy/ purple circles under eyes?... as "a symptom" of vasculitis?

Two events this weekend fundraising and raising awareness for Vasculitis. One in Carlisle and one in Northampton.

West Country support group lunch

Become a service user or carer member of the group developing NICE guidance about moving from children's to adult services for young people.

Uncomfortable heavy painful legs with WG and Stage 4/5 Kidney Failure.

cataracts because of steroids

I was told today that older people with vasculitis are not given medication. Could that be why the doctors haven't helped me yet?

I have one question for all of you. Have anyone of you ever been on meds for high cholesterol?

Hi fellow vasculiters , Has anyone had problems with biting their tongue whilst asleep?

Would you be willing to take part in a new study? Genetic Alliance UK are looking for patients and families to take part...

Diarrhoea

Vasculitis UK 2014 AGM - 11 May 2014

Weight loss whilst still on steroids ?

dapsone

What exercise do you do and how often? How easy did you find getting your fitness back following treatments and to what level?

Palpitations

The London Vasculitis Support Group Meeting 27th April 2014

Doctor v Consultant

Become a patient partner - Wolverhampton CCG

Human lung made in lab for first time

Martin loves to run and has raised money for other charities over the years. Martin is running this weekend for Vasculitis UK.

Starting this weekend team members: Georgia, Kathleen and Chloe will undertake three fantastic fundraising events for Vasculitis

A question about remission.

Can we be Organ Donors?

Has anyone had difficulty getting help, because the doctor is concerned about putting you on medication due to age and side effects?

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