Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for September 2016

can vasculitis go for ever

i was told today that i had 1percent of vasculitis and that it has gone now and it defintley would not come back, i was very ill in 2013 had 3 strokes and was...

i was told today that i had 1percent of vasculitis and that it has gone now and ...

carl2

•8 years ago

14 Replies

Lab help please? Very confused...

I am new to all of this and still looking for answers. My dr has ran a lot of tests and suspected vasculitis or because of all of my symptoms and lung...

I am new to all of this and still looking for answers. My dr has ran a lot of t...

katkatdd

•8 years ago

6 Replies

Nerve Biopsy - how bad can it be?

I still haven't had my peripheral neuropathy cause diagnosed. Its confirmed by emg and nvc tests but bloods all ok except P-ANCA positive (no mpo or pr3). My...

I still haven't had my peripheral neuropathy cause diagnosed. Its confirmed by e...

TallKeith

•8 years ago

32 Replies

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Vasculitis flare up symptoms

Hi Everyone, my finance was diagnosed 2 years ago with Vasculitis MPO and was told he was in remission for the past year. I'm curious how many if you had the...

Hi Everyone, my finance was diagnosed 2 years ago with Vasculitis MPO and was to...

Christina1960

•8 years ago

13 Replies

Vasculitis and Marijuana Oil

Have any of you considered using marijuana oil to treat your vasculitis? My dad just started but he's unsure of dosing. He's only using 2 MG right now but...

Have any of you considered using marijuana oil to treat your vasculitis? My dad ...

jrbeutin

•8 years ago

10 Replies

Cyclophosphamide Side Effects Good and Bad

I had a Vascular autoimmune disease (Cerebral Vasculitis) with my brain and one of the medications that my Neurologist put me on to stop the vascular problem...

I had a Vascular autoimmune disease (Cerebral Vasculitis) with my brain and one ...

phil60

•8 years ago

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North East Vasculitis Support Group Meeting 1st October 2016

Final reminder about the North East Vasculitis Support Group Meeting next weekend. See attached for directions. I have sent a copy of the details by email to...

Final reminder about the North East Vasculitis Support Group Meeting next weeken...

Suzym2u

Moderator•8 years ago

1 Reply

Churg Strauss- alternative treatments??

Hello everyone Diagnosed 4 yrs ago with CS. It is non severe- so far. Long term pred treatment has resulted in osteoporosis and paper thin skin. I have periods...

Hello everyone Diagnosed 4 yrs ago with CS. It is non severe- so far. Long term ...

vivavida

•8 years ago

9 Replies

Steroid side effects

Hi my son has been on steroids 20mg for the past 10 days now to dampen down his immune system and just started with methotrexate. Its all working well but the...

Hi my son has been on steroids 20mg for the past 10 days now to dampen down his ...

Kitkat101

•8 years ago

4 Replies

On husband's behalf

Hi I'm new to the site and I'm posting on my husband's behalf. He began to be ill last Christmas, loss of appetite with stomach pain which went round to his...

Hi I'm new to the site and I'm posting on my husband's behalf. He began to be...

vee21

•8 years ago

34 Replies

Possible vasculitis diagnosis looming...

Hi guys! I'm new here, and I just wanted to ask a few questions about diagnosis of vasculitis. After being ill since May, I was finally diagnosed with...

Hi guys! I'm new here, and I just wanted to ask a few questions about diagnosis...

nicole92

•8 years ago

13 Replies

Vasculitis Group Coffee Morning - Beer, Devon

Hi everyone, Just to let you know that the West Country Group will be at Ducky's Beach Cafe in Beer on Sunday 9th October from 11.00am if anyone would like to...

Hi everyone, Just to let you know that the West Country Group will be at Ducky'...

DevonLottie

•8 years ago

1 Reply

Medical ID bracelets

Hello My wife was diagnosed with EGPA in February 2015 and is currently taking pred along with half yearly Rituximab infusions. We have been thinking about...

Hello My wife was diagnosed with EGPA in February 2015 and is currently taking p...

Riff1954

•8 years ago

12 Replies

Churg Strauss Syndrome with Cardiomyopathy and Heart Failure

Hello In 2015 I was diagnosed with cardiomyopathy and heart failure left ventricular systolic dysfunction. My ejection fraction (pump rate) was 29% and after...

Hello In 2015 I was diagnosed with cardiomyopathy and heart failure left ventric...

Rowmarsh

•8 years ago

3 Replies

Vasculitis Patient Symposium 2015 - Feedback

After the 2015 Vasculitis Patient Symposium in London last year , we were unable to collect feedback. We are holding another vasculitis patient symposium in...

After the 2015 Vasculitis Patient Symposium in London last year , we were unable...

Suzym2u

Moderator•8 years ago

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Medical test

Hi! My self YASHVIR KUMAR , day before I have been done my H1/N1 Test . everything is OK but crp is showing 28.6. What should I do next step .

Hi! My self YASHVIR KUMAR , day before I have been done my H1/N1 Test . everythi...

KUMARYASHVIR

•8 years ago

1 Reply

Every day.

For the past 8 months I have been living in an awful hell. I wake up with a headache and go to bed with one. It radiates from the sides of my head. I have been...

For the past 8 months I have been living in an awful hell. I wake up with a head...

Anthrdayanthrheadche

•8 years ago

10 Replies

Neural Vascultis Orlando Fl

I have been battling Cerebral Vascutis since Oct of 15 and still have most of the same symptons now as then. Balance problems numbness on both sides of my body...

I have been battling Cerebral Vascutis since Oct of 15 and still have most of th...

DGBR

•8 years ago

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PMR&GCAuk North East Support RESEARCH 'YOUR EARS'

We are a registered Charity for PMR and GCA. Currently we are running a research project and need at least 5OO completed surveys . On this link you can read...

We are a registered Charity for PMR and GCA. Currently we are running a researc...

jinasc

•8 years ago

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Merseyside Cheshire & North Wales VSG Next Meeting Friday 7th October

Just to confirm that our next Meeting is on Friday 7th October at 10am-12 noon at the Linda McCartney Education Centre in the Royal Liverpool University...

Just to confirm that our next Meeting is on Friday 7th October at 10am-12 noon a...

SusanCh

•8 years ago

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Dad Microscopic Polyangiitis

Hi Everyone Dad has just finished his sixth course of Cyclophosphamide and has been told he will now have to take Azathioprine for at least 2 years. He only...

Hi Everyone Dad has just finished his sixth course of Cyclophosphamide and has b...

Hidden

•8 years ago

12 Replies

New App to Support Vasculitis Patients and Research

If you have ANCA vasculitis which has involved your lungs, nose or sinuses, are now in remission, and you would like to be involved in developing this...

If you have ANCA vasculitis which has involved your lungs, nose or sinuses, are ...

Suzym2u

Moderator•8 years ago

8 Replies

Cerebral Vasculitis to start of with but then Testical Cancer, and now the start of Bladder and Bowell cancer

17 yrs. ago in 1999 when I 56 and healthy. After 3 seizures my Neurologist sent me off for MRI’s I was diagnosed with Cerebral Vasculitis. The actual disease...

17 yrs. ago in 1999 when I 56 and healthy. After 3 seizures my Neurologist sent ...

phil60

•8 years ago

10 Replies

Summarizing Medical Issues

Good day vasci friends. For months now, I've been putting off a chore: namely, summarizing my medical conditions, treatments and ongoing issues into a succinct...

Good day vasci friends. For months now, I've been putting off a chore: namely, s...

michichgo

•8 years ago

2 Replies

Possible Vasculitis

First of all I would like to say what a fantastic site. I have found all comments extremely helpful and it puts in to perspective how serious this disease can...

First of all I would like to say what a fantastic site. I have found all commen...

Ianhend

•8 years ago

13 Replies

About me - as at September 2016

I have Coronary Heart Disease, for which I have an annual review with my GP. This is fortunate because in November 2013 it enabled her to discover that I had a...

I have Coronary Heart Disease, for which I have an annual review with my GP. Thi...

jgold

•8 years ago

4 Replies

Churg Strauss/EGPA and cellcept?

Does anyone have CSS or as it is recently renamed, egpa? I can't find a group for that specifically but you seem to have members here who have it. I have been...

Does anyone have CSS or as it is recently renamed, egpa? I can't find a group fo...

karens62

•8 years ago

9 Replies

Excellent support meeting at Scarborough Hospital yesterday

Just wanted to say that we were invited to the second Vasculitis support meeting yesterday at Scarborough Hospital. it was attended by 40 😊 John Mills spoke...

Just wanted to say that we were invited to the second Vasculitis support meeting...

Suzym2u

Moderator•8 years ago

2 Replies

If you have been diagnosed and/or treated for Vasculitis in Wales and happy to share your experiences.

If you have received a vasculitis diagnosis and/or treatment in Wales, UK, in the past 5 years and you would be happy to share your experiences please get in...

If you have received a vasculitis diagnosis and/or treatment in Wales, UK, in th...

Suzym2u

Moderator•8 years ago

4 Replies

Circulation booster

Afternoon all. Can anyone tell me if the use of a circulation booster such as Revitive is good for vasculitis. My partner has it in the lower legs, there are...

Afternoon all. Can anyone tell me if the use of a circulation booster such as Re...

Julesinspain

•8 years ago

4 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for September 2016

can vasculitis go for ever

Lab help please? Very confused...

Nerve Biopsy - how bad can it be?

Vasculitis flare up symptoms

Vasculitis and Marijuana Oil

Cyclophosphamide Side Effects Good and Bad

North East Vasculitis Support Group Meeting 1st October 2016

Churg Strauss- alternative treatments??

Steroid side effects

On husband's behalf

Possible vasculitis diagnosis looming...

Vasculitis Group Coffee Morning - Beer, Devon

Medical ID bracelets

Churg Strauss Syndrome with Cardiomyopathy and Heart Failure

Vasculitis Patient Symposium 2015 - Feedback

Medical test

Every day.

Neural Vascultis Orlando Fl

PMR&GCAuk North East Support RESEARCH 'YOUR EARS'

Merseyside Cheshire & North Wales VSG Next Meeting Friday 7th October

Dad Microscopic Polyangiitis

New App to Support Vasculitis Patients and Research

Cerebral Vasculitis to start of with but then Testical Cancer, and now the start of Bladder and Bowell cancer

Summarizing Medical Issues

Possible Vasculitis

About me - as at September 2016

Churg Strauss/EGPA and cellcept?

Excellent support meeting at Scarborough Hospital yesterday

If you have been diagnosed and/or treated for Vasculitis in Wales and happy to share your experiences.

Circulation booster

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