Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,779 members • 6,751 posts

All posts for August 2016

Google Analytics for the Vasculitis UK Website July 31st - August 30th 2016

Google Analytics for the VUK website for July 31st - August 30th 2016 23,000 users 63,100 pages viewed 74% new users 26% returning users Average session 2...

Google Analytics for the VUK website for July 31st - August 30th 2016 23,000...

Suzym2u

Moderator•8 years ago

2 Replies

Vasculitis a lifelong mystery ?

Recently had dramatic admission to hospital presenting with right upper body chest pain and left temple pain and tenderness Blood tests confirmed raised ESR...

Recently had dramatic admission to hospital presenting with right upper body che...

Juneelizabeth

•8 years ago

6 Replies

No blood test till I was bad.

I was back and two the doctors for a good few months... with a very sore ear and what they thought where flat feet... I couldn't walk far because I had bad...

I was back and two the doctors for a good few months... with a very sore ear and...

Muppet1234

•8 years ago

3 Replies

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Changing Steriods

Hi All. I wrote a few months ago asking for advice on stopping Prednisolone and going onto Hydrocortisone as tests showed my adrenal gland wasn't functioning...

Hi All. I wrote a few months ago asking for advice on stopping Prednisolone and ...

ludo

•8 years ago

2 Replies

New Alliance for Rare Autoimmune Rheumatic Diseases

New Alliance for Rare Autoimmune Rheumatic Diseases ! British Society of Rheumatology, Vasculitis UK , Lupus UK and Scleroderma/Raynauds UK. Please follow this...

New Alliance for Rare Autoimmune Rheumatic Diseases ! British Society of Rheumat...

Suzym2u

Moderator•8 years ago

4 Replies

Essential Tremor with MPA

Diagnosed with MPA in April, 2016. One month in hospital, lungs, kidney and vascular attacked, having some kidney damage p...Stage 4. My question, about six...

Diagnosed with MPA in April, 2016. One month in hospital, lungs, kidney and vas...

dijomc9

•8 years ago

11 Replies

Azathioprine and MPA

I'm lucky that my MPA has gone into complete remission, except for some kidney damage. I've been able to stop my prednisone and now (!) I've been on 100 mg of...

I'm lucky that my MPA has gone into complete remission, except for some kidney d...

Hidden

•8 years ago

11 Replies

Not a health question but for those of you on the State Pension.

For those of you who are on the State Pension and need to contact the Pension Office, dial this number 0800 991234 then option 4, ignore the beginning which...

For those of you who are on the State Pension and need to contact the Pension Of...

Sima1952

•8 years ago

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I'm new and looking for advice

I'm recently diagnosed ANCA positive vasculitis(possible Churg Strauss). Since coming out of hospital I have had constant tummy/bowel problems. I am taking...

I'm recently diagnosed ANCA positive vasculitis(possible Churg Strauss). Since c...

nanaC

•8 years ago

16 Replies

Any help with cutaneous vasculitis ?

I am new here so gave no idea how to use this site but recently got a rash that won't go away . Painful burning and itchy . Diagnosed as cutaneous vasculitis ....

I am new here so gave no idea how to use this site but recently got a rash that ...

Brissynorthside5

•8 years ago

3 Replies

Emotions, Relationships and Sexuality

New page on the Vasculitis UK website Adapting to life with vasculitis can be a challenge which will become easier the more you know about it. Most people can...

New page on the Vasculitis UK website Adapting to life with vasculitis can be a...

Suzym2u

Moderator•8 years ago

3 Replies

Share your views on the new standards for keeping patient data secure - closing date September 7th

This is an important issue for all those with a rare disease. Future research into rare diseases requires sharing clinical data and anonymised patient......

This is an important issue for all those with a rare disease. Future research in...

Suzym2u

Moderator•8 years ago

5 Replies

Wegener's spreading its wings.

Oops, posted this in NRAS by mistake. 70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who...

Oops, posted this in NRAS by mistake. 70 year old male with Wegener's I was di...

lfu2

•8 years ago

21 Replies

No flair ups thank god

In 2008 the doctors forgot me.. I was supposed to be on methotrexate but I was forgotten... when finally I was seen I had to have a X-ray .. they found fluid...

In 2008 the doctors forgot me.. I was supposed to be on methotrexate but I was f...

Muppet1234

•8 years ago

4 Replies

New to this site

Hi I was just having a look on google about vascalitus... I was first diagnosed with it in 2007.. I had very sore feet in work and a very sore left ear .. went...

Hi I was just having a look on google about vascalitus... I was first diagnosed ...

Muppet1234

•8 years ago

1 Reply

Renal ultrasound

Just had my results back.Entirely normal.very reassuring my neurologist words.Could this be the end of my investigations ???? To thinking I may have cerebal...

Just had my results back.Entirely normal.very reassuring my neurologist words.Co...

jan85uk

•8 years ago

8 Replies

Are Angiograms useful in diagnosing Vasculitis?

Hello, I have heard mixed things about whether an angiogram is useful in diagnosing vasculitis. I was wondering how many of you received one while trying to be...

Hello, I have heard mixed things about whether an angiogram is useful in diagnos...

MattC13

•8 years ago

6 Replies

Doctors or studies of HUVS in the United States

Does anyone know of a doctor or research study in the United States? I have recently been diagnosed with HUVS and no one in my area knows anything about it...

Does anyone know of a doctor or research study in the United States? I have rec...

Snugglybrighteyes

•8 years ago

7 Replies

pANCA positive, GPA and Anti-GBM (Goodpasture Syndrome)

Hello - my mother has pANCA positive, GPA and she has Anti-GBM disease which is named as Good pasture Syndrome. This has impacted her Kidney and she is on...

Hello - my mother has pANCA positive, GPA and she has Anti-GBM disease which is ...

gouravjazz

•8 years ago

2 Replies

South Yorkshire Support Group Meeting

We are looking forward to the South Yorkshire Vasculitis Support Meeting next Sunday. Gosh that has come round quick! It is really easy to find so hope to see...

We are looking forward to the South Yorkshire Vasculitis Support Meeting next Su...

LynneJ

Vasculitis UK•8 years ago

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picture this in 6 hrs sleep

many thanks for the reply I have woke up this morning with this on me hand now not only has this thing attacked me ankles knees and ligaments not to mention...

many thanks for the reply I have woke up this morning with this on me hand now ...

minka

•8 years ago

5 Replies

any info appreciated

i started of with some ankle pain that spread to my knee now i get cold feet and ligaments that apear not to be working properly in both ankles and knees my...

i started of with some ankle pain that spread to my knee now i get cold feet and...

minka

•8 years ago

8 Replies

Vasculitis of the GI Tract

Hello, I am a 25 year old male, and my GP has recently referred me to a vasculitis specialist at UCLA. From what I have read, vasculitis of the GI tract is...

Hello, I am a 25 year old male, and my GP has recently referred me to a vasculit...

MattC13

•8 years ago

8 Replies

Sonography sonogram of kidneys

After leaving hospital yesterday I feel a bit of relieve but also fear.My neurologist has already told me he thinks I may have cerebal vasculities.And by...

After leaving hospital yesterday I feel a bit of relieve but also fear.My neurol...

jan85uk

•8 years ago

6 Replies

Recovery from strep throat

I have cANCA positive GPA and had two rituximab infusions in January 2016 after which I had a fab spring with long forgotten levels of energy. I take 5mg...

I have cANCA positive GPA and had two rituximab infusions in January 2016 after ...

Hidden

•8 years ago

8 Replies

VASCULITIS

Thank you Suzi and Andrew for your replies. Thank you for the support and wishes and good luck with your personal cases. Lynn on the helpline was a great help...

Thank you Suzi and Andrew for your replies. Thank you for the support and wishes...

Yeprat

•8 years ago

3 Replies

West Country BBQ

A great day was had yesterday at the West Country Vasculitis Group BBQ. Lots of laughter as always and the sun shone againt this year! Thank you to all those...

A great day was had yesterday at the West Country Vasculitis Group BBQ. Lots of ...

DevonLottie

•8 years ago

8 Replies

Alendronic acid and osteonecrosis of the jaw

I've already mentioned this on FB, but there may be others on here that are not on FB. I'm experiencing bone trying to poke through my gum and although I've...

I've already mentioned this on FB, but there may be others on here that are not ...

suffolkgirl

•8 years ago

4 Replies

Henoch-schonlein Purpura.

Hi. My wife is being passed around GP's who admit no experience of this condition- Henoch-schonlein Purpura. Just had 1 blood test - still waiting results. No...

Hi. My wife is being passed around GP's who admit no experience of this conditio...

Yeprat

•8 years ago

12 Replies

Green Book?

I have read on here that some mention a "green book" can anyone enlighten me as to what the book is and how would I get one? I have MPA diagnosed nearly two...

I have read on here that some mention a "green book" can anyone enlighten me as ...

tisme2

•8 years ago

6 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for August 2016

Google Analytics for the Vasculitis UK Website July 31st - August 30th 2016

Vasculitis a lifelong mystery ?

No blood test till I was bad.

Changing Steriods

New Alliance for Rare Autoimmune Rheumatic Diseases

Essential Tremor with MPA

Azathioprine and MPA

Not a health question but for those of you on the State Pension.

I'm new and looking for advice

Any help with cutaneous vasculitis ?

Emotions, Relationships and Sexuality

Share your views on the new standards for keeping patient data secure - closing date September 7th

Wegener's spreading its wings.

No flair ups thank god

New to this site

Renal ultrasound

Are Angiograms useful in diagnosing Vasculitis?

Doctors or studies of HUVS in the United States

pANCA positive, GPA and Anti-GBM (Goodpasture Syndrome)

South Yorkshire Support Group Meeting

picture this in 6 hrs sleep

any info appreciated

Vasculitis of the GI Tract

Sonography sonogram of kidneys

Recovery from strep throat

VASCULITIS

West Country BBQ

Alendronic acid and osteonecrosis of the jaw

Henoch-schonlein Purpura.

Green Book?

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