Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for July 2017

Wegener's Granulomatosis with polyanginitis

Hi all, I have had this disease since 1990. I'm doing ok, but have suffered a lot of destruction to my sinus cavity, my nose and my eyes have scarred to the...

Hi all, I have had this disease since 1990. I'm doing ok, but have suffered a lo...

Lillybweggie

•7 years ago

20 Replies

Vasculitis & the tongue

Hi all, Recently Ive had a oral check up with my dentist. Some pictures were taken due to finding a large mass of superficial pigmentation under my tongue, &...

Hi all, Recently Ive had a oral check up with my dentist. Some pictures were t...

LauraMk30

•7 years ago

9 Replies

Economic impact of Vasculitis

I am involved in the Scottish Government Vasculitis Short life working group and the question of the personal economic impact of a Vasculitis diagnosis has...

I am involved in the Scottish Government Vasculitis Short life working group and...

Hidden

•7 years ago

27 Replies

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Cutaneous vasculitis flare up

I'm experiencing a flare up so am feeling pretty low at the moment. I am currently taking 20 mg prednisolone pregabalin 100mg twice a day and duloxetine for...

I'm experiencing a flare up so am feeling pretty low at the moment. I am current...

johanna-68

•7 years ago

6 Replies

For those diagnosed with Giant Cell Arteritis - this was tweeted just a few minutes ago

A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999

A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Pleas...

Suzym2u

Moderator•7 years ago

1 Reply

Date for your diary - Vasculitis West Midlands Support Meeting October 2017

The speakers this year are Dr. Lisha McLelland, Consultant ENT Surgeon at UHB (Queen Elizabeth Hospital), who will give a presentation dicussing ear nose and...

The speakers this year are Dr. Lisha McLelland, Consultant ENT Surgeon at UHB (...

Suzym2u

Moderator•7 years ago

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strange symptoms in head with dizziness and am in hospital but being fobbed off. no tests so far, worried

i am in hospital. MRI brain done. i have heaps of co-morbid conditions and been over to UK under the E112 agreement. i live in ireland. i came into a private...

i am in hospital. MRI brain done. i have heaps of co-morbid conditions and been...

anngrumps

•7 years ago

3 Replies

Cholesterol

Hi, my son has a sistemic vasculiti probably Mpa and he's taking prednisone and celltech (mmf) but he has high vale of cholesterol and tryglicerides . Any...

Hi, my son has a sistemic vasculiti probably Mpa and he's taking prednisone and ...

Wizzi

•7 years ago

4 Replies

Anyone ever experienced this?

So, for some reason, when my oxygen level is checked on my finger, it reads very low...in the 80's. When it is read on my forehead, it reads much higher- in...

So, for some reason, when my oxygen level is checked on my finger, it reads very...

Deedrah

•7 years ago

6 Replies

Long Term Treatment

Believe it, or not, and it does amaze me.....It's been Twenty Years, since I Collapsed with Vasculitis. I was given or, more correctly, my Mother was told that...

Believe it, or not, and it does amaze me.....It's been Twenty Years, since I Col...

AndrewT

•7 years ago

2 Replies

Churg Strauss Vasculitis

Hi everyone, I have had the above for 11years and would like to hear from others how they have managed this condition as it is extremely rare. Have had two...

Hi everyone, I have had the above for 11years and would like to hear from other...

Assie

•7 years ago

13 Replies

Low dose naltrexone..

Hi everyone.. Went to the doctor yesterday and put me back on prednisone and wants me to try low dose naltrexone.. She said that will replace the prednisone....

Hi everyone.. Went to the doctor yesterday and put me back on prednisone and wan...

judyann

•7 years ago

4 Replies

Dreaming and the Onset of Chronic Illness: Exploring and Developing the Concept of the Dream as a Threat Monitoring Mechanism

Just in case anyone is on researchgate and is interested, here is a report I recently wrote about teh onset of my autoimmune conditions. Though at the time,...

Just in case anyone is on researchgate and is interested, here is a report I rec...

charlieab

•7 years ago

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Has anyone on the Vas site had a vertical fracture of Lumbar 4?

Some months ago now, l wrote on the Vas' HU site about a compression fracture - via a fall - in my lower spine; this happened in August 2016. Well it turns out...

Some months ago now, l wrote on the Vas' HU site about a compression fracture - ...

Sima1952

•7 years ago

2 Replies

Rituximab ....

Hi all, I've been having a Rituximab infusion every three months (used to be two every six months) and went today for the latest one. Am feeling really...

Hi all, I've been having a Rituximab infusion every three months (used to be two...

CHARLIE49

•7 years ago

5 Replies

New here - Ankylosing Spondilitis sufferer (although controlled), + Vasculitis, Possible Polyarteritis Nodosa. On Pred, Sulfasal & Dapsone

Just looking to share info/advice and experiences with anyone else out there with these sort of ailments

Just looking to share info/advice and experiences with anyone else out there wit...

cclarke

•7 years ago

14 Replies

Septic Shock

Hello everyone, just me wanting advice about Dad again please. Dad was diagnosed with ANCA+ MPA pretty much a year ago. As far as I'm aware, he was in...

Hello everyone, just me wanting advice about Dad again please. Dad was diagnose...

Hidden

•7 years ago

4 Replies

What were your initial symptoms?

Before I start I have not been diagnosed with anything other than asthma. However..... Two years ago I was a fit 43 year old - running, cycling, kickboxing....

Before I start I have not been diagnosed with anything other than asthma. Howeve...

Brenviking

•7 years ago

15 Replies

Do you have positive or negative experiences of taking prednisolone?

Do you have positive or negative experiences of taking prednisolone? We are looking for brief accounts of people’s encounters with prednisolone, especially...

Do you have positive or negative experiences of taking prednisolone? We are loo...

Suzym2u

Moderator•7 years ago

19 Replies

Important Patient Survey

Please can those of you who have been diagnosed with vasculitis, who have not already completed this survey, please take a moment to complete it. John took...

Please can those of you who have been diagnosed with vasculitis, who have not al...

Suzym2u

Moderator•7 years ago

3 Replies

West Country Summer BBQ

Hi everyone, this year's 'come rain or shine' West Country Vasculitis Support Group Summer BBQ will be held on Sunday 20th August, 1.00 - approx 4.00 at my...

Hi everyone, this year's 'come rain or shine' West Country Vasculitis Support G...

DevonLottie

•7 years ago

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Primary or Secondary? I'm confused..

I was wondering how to know the difference between primary and secondary vasculitis. I am anca negative and was checked twice. How can the doctor tell the...

I was wondering how to know the difference between primary and secondary vasculi...

judyann

•7 years ago

12 Replies

New Blue veins

Hey all, hope your enjoying the sunshine 🔥💛 I've had some new symptoms over the weekend & this morning I've noticed that my right foot & ankle has blue...

Hey all, hope your enjoying the sunshine 🔥💛 I've had some new symptoms over...

LauraMk30

•7 years ago

13 Replies

VASCULITIS MANAGEMENT

Hello, With reference to John Mills's article in the AGM magazine regarding how poor Wales NHS actually were in treating Vasculitis patients and signs of...

Hello, With reference to John Mills's article in the AGM magazine regarding how...

Yeprat

•7 years ago

17 Replies

Surprise in the post today from France

Surprise for John Mills in the post today - France Vasculitis June Newsletter dropped on our doormat this morning and John was featured in their newsletter 😊...

Surprise for John Mills in the post today - France Vasculitis June Newsletter dr...

Suzym2u

Moderator•7 years ago

5 Replies

Wound update again 😱

Hello everyone, Well it's been a few days since using the gel dressing. My partner cleaned & redressed it this morning & he retched with the smell.. The...

Hello everyone, Well it's been a few days since using the gel dressing. My par...

LauraMk30

•7 years ago

6 Replies

Can't get a diagnosis

Hi everyone I've not been dx with vasculitis but everything is pointing to it apart from my crp and esr level. I was in A&E last Saturday and again on Thursday...

Hi everyone I've not been dx with vasculitis but everything is pointing to it ap...

Johnbrooks1973

•7 years ago

5 Replies

Recent Diagnosis of CNS Vasculitis (10 year old)

Hi, After a recent trip to A&E my 10 year old daughter has recently been diagnosed with CNS Vasculitis. My question is what are usually the next steps? We have...

Hi, After a recent trip to A&E my 10 year old daughter has recently been diagnos...

Lolabola

•7 years ago

3 Replies

Rare Autoimmune Rheumatic Diseases Patient Survey

The Rare Autoimmune Rheumatic Diseases Patient Survey This survey has been developed on behalf of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA), a...

The Rare Autoimmune Rheumatic Diseases Patient Survey This survey has been devel...

Suzym2u

Moderator•7 years ago

8 Replies

Google Analytics for the Vasculitis UK website - June 3rd - July 4th 2017

Google Analytics for the VUK website www.vasculitis.org.uk June 3rd - July 4th 23,000 users 55,200 pages viewed 2 mins average viewing time 75% new visitors...

Google Analytics for the VUK website www.vasculitis.org.uk June 3rd - July 4th ...

Suzym2u

Moderator•7 years ago

Be the first to reply

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2017

Wegener's Granulomatosis with polyanginitis

Vasculitis & the tongue

Economic impact of Vasculitis

Cutaneous vasculitis flare up

For those diagnosed with Giant Cell Arteritis - this was tweeted just a few minutes ago

Date for your diary - Vasculitis West Midlands Support Meeting October 2017

strange symptoms in head with dizziness and am in hospital but being fobbed off. no tests so far, worried

Cholesterol

Anyone ever experienced this?

Long Term Treatment

Churg Strauss Vasculitis

Low dose naltrexone..

Dreaming and the Onset of Chronic Illness: Exploring and Developing the Concept of the Dream as a Threat Monitoring Mechanism

Has anyone on the Vas site had a vertical fracture of Lumbar 4?

Rituximab ....

New here - Ankylosing Spondilitis sufferer (although controlled), + Vasculitis, Possible Polyarteritis Nodosa. On Pred, Sulfasal & Dapsone

Septic Shock

What were your initial symptoms?

Do you have positive or negative experiences of taking prednisolone?

Important Patient Survey

West Country Summer BBQ

Primary or Secondary? I'm confused..

New Blue veins

VASCULITIS MANAGEMENT

Surprise in the post today from France

Wound update again 😱

Can't get a diagnosis

Recent Diagnosis of CNS Vasculitis (10 year old)

Rare Autoimmune Rheumatic Diseases Patient Survey

Google Analytics for the Vasculitis UK website - June 3rd - July 4th 2017

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