Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for August 2018

Support group

Hi everyone is there any groups near Newcastle upon Tyne , thanks

John196

•6 years ago

4 Replies

East Midlands Vasculitis Support Meeting on Sunday

We have just 4 places left for The EMVSG meeting if anyone is interested in going. There is no charge for attending. Speakers are a Nephrologist who has a...

We have just 4 places left for The EMVSG meeting if anyone is interested in goin...

Suzym2u

Moderator•6 years ago

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Reversible Cerebral Vasoconstriction syndrome?

Hi, I am new here and sending this post on behalf of my neice who is currently in Hospital with severe headaches. She is 37 years old. They think it might be...

Hi, I am new here and sending this post on behalf of my neice who is currently i...

GlenAlva

•6 years ago

3 Replies

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Vasculiitis specialist consultant

Hi, Sadly I find myself in the situation where my father has been diagnosed with lung cancer however also very quickly developed vasculitis which has...

Hi, Sadly I find myself in the situation where my father has been diagnosed wit...

Heart85

•6 years ago

15 Replies

North West Support Meeting

Come and meet others with same or similar conditions at the North West Support Group meeting. Sunday September 9 between 2.00 - 4.00 pm MacDonald Trickled...

Come and meet others with same or similar conditions at the North West Support G...

Jann

•6 years ago

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COMING OFF PREDNISOLONE

Hi All, I was diagnosed with vasculitis just over a year ago. I reduced pred very quickly down to 11mg and then by 1mg a month as my consultant thinks it...

Hi All, I was diagnosed with vasculitis just over a year ago. I reduced pred ver...

tommi47

•6 years ago

27 Replies

Cerebral vasculitus

I am looking for any help or advice thst my life will not be like this for ever. I am bed bound at 40 my left foot is paralysed and i am having fits every day....

I am looking for any help or advice thst my life will not be like this for ever....

Joan78

•6 years ago

12 Replies

Flying

I know this is going to come across a weird question. I feel I have to ask to settle this niggling in my head. I have Cutaneous Vasculitis. My issues are from...

I know this is going to come across a weird question. I feel I have to ask to se...

lou1972

•6 years ago

7 Replies

Can medical marijuana help me

Hi am Anetha (24) and I have been told to have takayasu arteritis type 5 and I had two angio and 4 stents and a ballon procedures but it never helps and am...

Hi am Anetha (24) and I have been told to have takayasu arteritis type 5 and I h...

Anetha

•6 years ago

5 Replies

'Heavenly' Cooler Weather, to come

I have just seen the Forecast, for the Bank Holiday Weekend. It's set to get cooler, actually quite a bit cooler, maybe even 'Shivery' cold.....Wow, bring it...

I have just seen the Forecast, for the Bank Holiday Weekend. It's set to get coo...

AndrewT

•6 years ago

2 Replies

Help

Mark, found out about Wegener’s about 2 months ago! Did the 4 chemo infusions. Now have diabetes! Looking for low salt/ renal kidney diet, any suggestions? I...

Mark, found out about Wegener’s about 2 months ago! Did the 4 chemo infusions. N...

BeasT234

•6 years ago

9 Replies

Feeling sore on hydroxychloroquine

Hello, I’ve been on a reduced dose of hydroxy for urticarial vasculitis for a couple of months and am working up to a full dose. However I’ve started to feel...

Hello, I’ve been on a reduced dose of hydroxy for urticarial vasculitis for a co...

phoebe-18

•6 years ago

4 Replies

Document published by the BMA just a few days ago regarding the impact of a No Deal Brexit.

This document is about the impact of a “No Deal Brexit” , published by the British Medical Association a few days ago. This is posted only for your...

This document is about the impact of a “No Deal Brexit” , published by the Briti...

Suzym2u

Moderator•6 years ago

10 Replies

Pain relief ideas please.

Pain relief ideas, please. I live in US and Dr wants me to stop taking hydrocodone. I just flared again. Back to 30mg pred. Every time I step down on pred,...

Pain relief ideas, please. I live in US and Dr wants me to stop taking hydrocodo...

Jessileigh

•6 years ago

21 Replies

Finally have the last 2 blood test results.

Well guess what? The last set of tests now show anca neg. Some of the full blood count seems to be returning slowly back to within normal range's although the...

Well guess what? The last set of tests now show anca neg. Some of the full blood...

Boudica1

•6 years ago

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Has anyone actually tried this?

As, some of you, may well know, I am a Middle-aged Fat man who has 'Non-specific ANCA Vasculitis'. Actually about five different, not specifically named,...

As, some of you, may well know, I am a Middle-aged Fat man who has 'Non-specific...

AndrewT

•6 years ago

4 Replies

North West Support Meeting

Live in the Manchester, Lancshire or Cumbria area. Want a chance to catch and talk to people who share the same issues and experiences and can understand your...

Live in the Manchester, Lancshire or Cumbria area. Want a chance to catch and ta...

Jann

•6 years ago

3 Replies

More than fed up.

What the point of this site and the Vasculitis site let alone the so called doctors that are supposed to be treating me. So far have a diagnosis for U.V and...

What the point of this site and the Vasculitis site let alone the so called doct...

Boudica1

•6 years ago

10 Replies

Still C-ANCA +

Well just seen letter sent to GP from hospital. It seems I'm still c-anca positive but pr3 neg. They also sent another letter to skin clinic about the need for...

Well just seen letter sent to GP from hospital. It seems I'm still c-anca positi...

Boudica1

•6 years ago

2 Replies

Vasculitis Fellowships

Vasculitis U.K. and the British Society for Rheumatology are working together to offer 5 “Vasculitis Fellowships”. Successful applicants will experience 3 days...

Vasculitis U.K. and the British Society for Rheumatology are working together to...

Suzym2u

Moderator•6 years ago

2 Replies

East Midlands Vasculitis Support Group Meeting September 2nd

There are one or two places available. The East Midlands Vasculitis Support Group are meeting on Sunday September 2nd 2018 at the Holiday Inn, Bostocks Lane...

There are one or two places available. The East Midlands Vasculitis Support Grou...

Suzym2u

Moderator•6 years ago

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Royal College of GPs Training and Practice Guidelines

I discovered this on the Lupus UK HU page. Not sure whether it's a recent update or has been there for some time but it seems to indicate that GPs should be...

I discovered this on the Lupus UK HU page. Not sure whether it's a recent update...

RichardE

Volunteer•6 years ago

2 Replies

Is this Wetter Weather, a Relief?

Is anyone else finding, this lovely wet weather, a considerable Relief? What I'm getting to is- Have you been able to 'GO'? I have found (sh)it so! It is,...

Is anyone else finding, this lovely wet weather, a considerable Relief? What I'm...

AndrewT

•6 years ago

2 Replies

Seizures

Hi My husband had Cerebral Vasculitis 5 years ago, and now has had two tonic chlonic seizures. We are needing to find some kind of alarm system which he can...

Hi My husband had Cerebral Vasculitis 5 years ago, and now has had two tonic chl...

Simmonds797

•6 years ago

3 Replies

Iga vasculitis or iga nephropathy

Hi is there any difference between iga vasculitis and iga nephropathy? How serious is having persistent ++blood and protein in urine and microalbumin level...

Hi is there any difference between iga vasculitis and iga nephropathy? How serio...

SarahAli

•6 years ago

2 Replies

Urgent attention - rheumatologist

Hi Ive been suffering rashes for years and was being treated with Plaquenil. But whereas the rash only was limited to my feet, over the last 18 months the rash...

Hi Ive been suffering rashes for years and was being treated with Plaquenil. But...

SlandTR

•6 years ago

7 Replies

Blood test - is it vasculitis or not?

Hi, I am new, but not sure if I should be on here. 3 yrs ago my Neurologist found I have P-Anca, negative MPO. He then referred me to a Rheumotologist who was...

Hi, I am new, but not sure if I should be on here. 3 yrs ago my Neurologist foun...

Aussiebird87

•6 years ago

8 Replies

2nd Rheumatology appointment

Forgot to ask about the results of the last set of bloods they did. DOH. A younger doctor this time who was highly pleased with me for the symptom diary, quick...

Forgot to ask about the results of the last set of bloods they did. DOH. A young...

Boudica1

•6 years ago

2 Replies

2 episodes of struggling to get my words out, not sure if I’m stuttering or generally unable to get the words out!!!! Can anyone relate

Approx 6 weeks ago I was out with my daughter , and was just generally trying to have a conversation and it was hard work. Words were hard to get out. I...

Approx 6 weeks ago I was out with my daughter , and was just generally trying to...

Lisalou19

•6 years ago

7 Replies

Kidney transplant

Hi I am 26 a have just received a kidney i am having trouble with my legs they are extreamly painful , stiff and swelling it feels like I'm constantly walking...

Hi I am 26 a have just received a kidney i am having trouble with my legs they a...

Hidden

•6 years ago

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Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for August 2018

Support group

East Midlands Vasculitis Support Meeting on Sunday

Reversible Cerebral Vasoconstriction syndrome?

Vasculiitis specialist consultant

North West Support Meeting

COMING OFF PREDNISOLONE

Cerebral vasculitus

Flying

Can medical marijuana help me

'Heavenly' Cooler Weather, to come

Help

Feeling sore on hydroxychloroquine

Document published by the BMA just a few days ago regarding the impact of a No Deal Brexit.

Pain relief ideas please.

Finally have the last 2 blood test results.

Has anyone actually tried this?

North West Support Meeting

More than fed up.

Still C-ANCA +

Vasculitis Fellowships

East Midlands Vasculitis Support Group Meeting September 2nd

Royal College of GPs Training and Practice Guidelines

Is this Wetter Weather, a Relief?

Seizures

Iga vasculitis or iga nephropathy

Urgent attention - rheumatologist

Blood test - is it vasculitis or not?

2nd Rheumatology appointment

2 episodes of struggling to get my words out, not sure if I’m stuttering or generally unable to get the words out!!!! Can anyone relate

Kidney transplant

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