Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for November 2016

How common is GCA

Recently diagnosed with GCA in September I asked at my GP surgery how many other patients in the practice have it and was told I was the only one in a practice...

Recently diagnosed with GCA in September I asked at my GP surgery how many other...

Juneelizabeth

•8 years ago

13 Replies

Updated information for the Vasculitis Patient Symposium and Gala Dinner In Manchester - March 2017

Patient Symposium Timetable 9.00am Registration opens 9.45 Welcome and Introductions - John Mills - Chairman of Vasculitis UK 10.00 Dr Peter Lanyon (British...

Patient Symposium Timetable 9.00am Registration opens 9.45 Welcome and Introdu...

Suzym2u

Moderator•8 years ago

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Tooth implant

Hi all. Wondered if anyone has had a tooth implant. I have Wegeners (GPA). I need a tooth extraction and considering an implant I just wondered if anyone knew...

Hi all. Wondered if anyone has had a tooth implant. I have Wegeners (GPA). I nee...

ludo

•8 years ago

9 Replies

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Patient Experiences of Individual Funding Requests ( IFR ) Survey

Patient experiences of Individual Funding Requests (IFRs) survey ( Genetic Alliance/Rare Disease UK) Have you accessed a treatment or medication for vasculitis...

Patient experiences of Individual Funding Requests (IFRs) survey ( Genetic Allia...

Suzym2u

Moderator•8 years ago

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Post op follow up

Went today for follow up consultation after my op for sub glottic stenosis three months ago dr says it has come back a little as it has healed but it might...

Went today for follow up consultation after my op for sub glottic stenosis three...

russellk3

•8 years ago

4 Replies

HELP NEEDED

HAS ANYONE BEEN SUCCESSFULL ON CLAIMING ILL HEALTH COMPENSATION AFTER DISMISSAL FOR ILL HEALTH I AM FINDING MY JOB HARDER BY THE DAY DUE TO VARIOUS ILLNESS

HAS ANYONE BEEN SUCCESSFULL ON CLAIMING ILL HEALTH COMPENSATION AFTER DISMISSAL ...

toker1955

•8 years ago

4 Replies

Merseyside Cheshire & North Wales VSG Meeting

Our next Meeting is on Friday 9th December in the Linda McCartney Education Centre (Room 4) at the Royal Liverpool UV Hospital from 12-2pm followed by our...

Our next Meeting is on Friday 9th December in the Linda McCartney Education Cent...

SusanCh

•8 years ago

4 Replies

Tooth extraction

I have what my dentist called 'an extensive infection' beneath one of my lower back teeth. I was in a lot of discomfort last weekend but I've had 5 days of...

I have what my dentist called 'an extensive infection' beneath one of my lower b...

laidbackreader

•8 years ago

8 Replies

Back mri and back specialist

Just a update.Had my ncs and emg test.Was told at the end my left side was abnormal and that she would recommend a back MrI and that she would recommend I see...

Just a update.Had my ncs and emg test.Was told at the end my left side was abnor...

jan85uk

•8 years ago

2 Replies

Cortisol test and high levels of cholesterol

I am having a cortisol test on Monday carried out by the endocrinology team at Airedale hospital. I have CSS and managed to come off predisolone about four...

I am having a cortisol test on Monday carried out by the endocrinology team at A...

Katie18

•8 years ago

13 Replies

coming off meds

Hi all! I was diagnosed with Chrurg Straus in 2012, which has been controlled since by medication including Methotrexate. I have finally seen a specialist...

Hi all! I was diagnosed with Chrurg Straus in 2012, which has been controlled s...

sarahdollygirl

•8 years ago

3 Replies

Square 1

My daughter turned 40 years old in ICU Florida after experiencing rapid muscle loss and then a brain hemorrhage she was diagnosed with cns Vasculitis. She...

My daughter turned 40 years old in ICU Florida after experiencing rapid muscle ...

v4227

•8 years ago

2 Replies

End of tether

Hi guys. Some advice. 1 year history of purpurA, fatigue, joint pain, neuropathy. Three GPs, rheumatologist, dermatologist, two emergency admissions and still...

Hi guys. Some advice. 1 year history of purpurA, fatigue, joint pain, neuropathy...

clarevet

•8 years ago

10 Replies

Tocilizumab for Giant Cell Arteritis (Temporal Arteritis)

John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad)...

John Mills on behalf of VUK are interested in hearing about the experiences of a...

Suzym2u

Moderator•8 years ago

7 Replies

Tara Palmer Tomkinson article in Daily Mail

Tara Palmer Tomkinson I have just read about Tara and her benign pituitary tumour and it also mentions that she is suffering from a rare auto immune...

Tara Palmer Tomkinson I have just read about Tara and her benign pituitary tumo...

Essex-jill

•8 years ago

7 Replies

Tribunal

Well got my Tribunal date (7/12/2016) and a bag of nerves now not knowing what to expect, i have sent as much information as i possibly can, i think they have...

Well got my Tribunal date (7/12/2016) and a bag of nerves now not knowing what t...

SandieB

•8 years ago

7 Replies

Hemotologist

Great no reply. :( why do I bother

jan85uk

•8 years ago

5 Replies

New to forums and talking about my life with wegeners/gpa !

Hi everyone , I'm Dave and a wegeners or gpa diagnosed patient of many years and I'm 42 years old, I've flicked through nearest of you and am wondering if...

Hi everyone , I'm Dave and a wegeners or gpa diagnosed patient of many years and...

Dave-evans

•8 years ago

16 Replies

Hemotologist

Well it's been almost a year since first hemotologist appointment. I have bee told I'm a working progress,and that due to wbc count high and going up and......

Well it's been almost a year since first hemotologist appointment. I have bee to...

jan85uk

•8 years ago

2 Replies

Another 'Scam'?

Dear Everyone, (I think that covers all 'bases') I had a phone call today, bear in mind that I haven't had this phone long, asking if I had had an 'accident'-I...

Dear Everyone, (I think that covers all 'bases') I had a phone call today, bear ...

AndrewT

•8 years ago

5 Replies

Why am I having shooting pains in my forehead.

For the past 2/3 weeks I have been having short sharp stabbing pains across my forehead, from my right to the left temple, they last just seconds and are...

For the past 2/3 weeks I have been having short sharp stabbing pains across my f...

jackrussell

•8 years ago

5 Replies

Ideas for working from home?

I'm very interested in hearing what people have found possible in terms of working from home, or working in a reduced capacity because of their health. It's...

I'm very interested in hearing what people have found possible in terms of worki...

CloudGazer6

•8 years ago

7 Replies

Passera4

Hi to Casii, Footygirl and all the other members who encouraged me. I went to the hospital today for my results. I am one of the lucky ones, it seems that...

Hi to Casii, Footygirl and all the other members who encouraged me. I went to th...

Hidden

•8 years ago

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Vasculitis talk for patients - RD&E Exeter, Thursday 9 February, 6.30pm

Hi everyone, further to my earlier posting with regard to the talk for patients on vasculitis and its treatment, the date for the talk is Thursday February...

Hi everyone, further to my earlier posting with regard to the talk for patients ...

DevonLottie

•8 years ago

2 Replies

Augmentin

I suffer with Wegener's granulomatosis and had cause to get some antibiotics at the weekend through 111 & The out of hours Doctor to combat a hacking cough...

I suffer with Wegener's granulomatosis and had cause to get some antibiotics at ...

Lauriescott1

•8 years ago

4 Replies

Living with wegeners

Hi my name is Russell I have been living with wegeners for a year now when I was diagnosed I was told how rare it was but it seems to be not as rare as they...

Hi my name is Russell I have been living with wegeners for a year now when I was...

russellk3

•8 years ago

20 Replies

Vasculitis Talk - RD&E, Exeter

Early notification of a talk on vasculitis to take place at the RD&E, Exeter. Full details are yet to be available but confirmed speakers to date are Dr Lucy...

Early notification of a talk on vasculitis to take place at the RD&E, Exeter. Fu...

DevonLottie

•8 years ago

13 Replies

Ileostomy and Behcets

I was rushed into hospital in early October and had to have surgery to remove part of my small intestine, then given an ileostomy, it was not Behcets related...

I was rushed into hospital in early October and had to have surgery to remove pa...

Cathomp

•8 years ago

17 Replies

Liver involvement in wegeners

Has anyone with Wegeners had liver involvement?

ludo

•8 years ago

4 Replies

Vasculitus

Vasculitus of the liver very rare disease I've been told has anyone else got it.

Vasculitus of the liver very rare disease I've been told has anyone else got it....

Wordsley

•8 years ago

13 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for November 2016

How common is GCA

Updated information for the Vasculitis Patient Symposium and Gala Dinner In Manchester - March 2017

Tooth implant

Patient Experiences of Individual Funding Requests ( IFR ) Survey

Post op follow up

HELP NEEDED

Merseyside Cheshire & North Wales VSG Meeting

Tooth extraction

Back mri and back specialist

Cortisol test and high levels of cholesterol

coming off meds

Square 1

End of tether

Tocilizumab for Giant Cell Arteritis (Temporal Arteritis)

Tara Palmer Tomkinson article in Daily Mail

Tribunal

Hemotologist

New to forums and talking about my life with wegeners/gpa !

Hemotologist

Another 'Scam'?

Why am I having shooting pains in my forehead.

Ideas for working from home?

Passera4

Vasculitis talk for patients - RD&E Exeter, Thursday 9 February, 6.30pm

Augmentin

Living with wegeners

Vasculitis Talk - RD&E, Exeter

Ileostomy and Behcets

Liver involvement in wegeners

Vasculitus

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