Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,774 members • 6,747 posts

All posts for July 2019

Steroids

I have been Told I have vasculitis. I have five vasculitic ulcers on my left foot and the.pain of these is terrible. Trouble is my TVN nurses do not seen to...

I have been Told I have vasculitis. I have five vasculitic ulcers on my left foo...

•5 years ago

Yet MORE 'Scammers'

Dear All, MORE 'Scams', I'm afraid😡. This time allegedly from 'Apple....their App Store'. A, to me anyway, 'Quite Believable' Invoice, was sent, to my Email...

Dear All, MORE 'Scams', I'm afraid😡. This time allegedly from 'Apple....their A...

•5 years ago

Adrenal insufficieny

I have a synacthen test booked and suspect that after 5 years on quite high doses of pred that my adrenals have been damaged. My questions are: 1. Has anyone...

I have a synacthen test booked and suspect that after 5 years on quite high dose...

•5 years ago

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Ad Blocker

Dear All, I 'appealed' to these pages, a few weeks ago, for an Advertisement (Ad) Blocker. I subsequently, managed to install one. It has 'Blocked' over TWO...

Dear All, I 'appealed' to these pages, a few weeks ago, for an Advertisement (Ad...

•5 years ago

Not vasculitis

Hi I wrote a post earlier this year about a rash on my legs my gp told me it was vasculitis, and referred me to a dermatologist who I actually saw on...

Hi I wrote a post earlier this year about a rash on my legs my gp told me it wa...

•5 years ago

is it a risk to stay on imuran when i have had 4 skin cancer surgeries in the last 8 month's

i have GPA Valastitis for 3 years have been in remission for 1 year. i take imuran 150ml a day. i have had 4 skin cancer surgeries in the last 8 months. My...

i have GPA Valastitis for 3 years have been in remission for 1 year. i take imu...

•5 years ago

Methotrexate, how have you been on it ??

Following pet scan , now have diagnosis of large vessel vasculitis, new treatment pathway of pred and methotrexate, interested in how others have felt

Following pet scan , now have diagnosis of large vessel vasculitis, new treatmen...

•5 years ago

Specialist centre in Wales?

I would value advice on specialist centre for vasculitis in Wales. After 9 years with no flare, under respiratory consultant because my lungs were main organ...

I would value advice on specialist centre for vasculitis in Wales. After 9 years...

•5 years ago

GPA under control but still get joint pain

I have GPA which is under control but I still get joint pain. My rheumatologist has scanned my joints & says its not inflammatory so is unrelated to the gpa....

I have GPA which is under control but I still get joint pain. My rheumatologist...

•5 years ago

Incontinence and cerebral/CNS vasculitis

I just posted something on my own personal Facebook wall, and thought I should post something here too. I have cerebral vasculitis, for 25 years this year,...

I just posted something on my own personal Facebook wall, and thought I should p...

Volunteer•5 years ago

Chung Strauss recovery.

Hi I was diagnosed with Chung Strauss in 2015 after sudden and severe issues with arm/leg numbness and pain and also chronic digestion issues. Pleased to say...

Hi I was diagnosed with Chung Strauss in 2015 after sudden and severe issues wi...

•5 years ago

Could this be Vasculitis?

Hi I’m new here, don’t know that I have Vasculitis so wondered if you’d be able to share some symptoms with me, I don’t necessarily want to visit a GP and ask...

Hi I’m new here, don’t know that I have Vasculitis so wondered if you’d be able ...

•5 years ago

Vasculitis, Renal and Respiratory Training Day - Imperial College London

On Wednesday of this week John and myself, spent the day with around 100 doctors on a Vasculitis, renal and respiratory training day at Imperial College...

On Wednesday of this week John and myself, spent the day with around 100 doctors...

Moderator•5 years ago

IM METHYLPREDNISONE EVERY 3-4 WEEKS LESSENS WEIGHT GAIN, FRACTURES, MOONFACE THAN ORAL METHYLPREDNISONE IN DOUBLE BLIND STUDY FROM 1997!

I will try to share the link, but is from a Journal of Rheumatology, 1997! I was surprised 1) this has been known for 12 years 2) the lessening of side...

I will try to share the link, but is from a Journal of Rheumatology, 1997! I was...

•5 years ago

Isotope skeletal x rsy

Isotope skeletal x ray. Has anyone had this to look for signs of inflammation?

Isotope skeletal x ray. Has anyone had this to look for signs of inflammation? ...

•5 years ago

Complications with PACNS/ Cerebral Vasculitis

Was diagnosed with PACNS in 2015, biopsy proven, after several years of severe headaches, memory loss and fatigue, advised now in remission. Originally had...

Was diagnosed with PACNS in 2015, biopsy proven, after several years of severe h...

•5 years ago

Gca and lower legs cramps?

I'm currently awaiting the results of a temporal artery biopsy. My ophthalmologist feels that I don't have gca as my bloods have come back normal. I've...

I'm currently awaiting the results of a temporal artery biopsy. My ophthalmolog...

•5 years ago

Churg Strauss Association-does it still exist-diagnosis advice please

Hi all! I’m trying to access their website but without success. Similarly emails fail to send...I’m not diagnosed EGPA but have asthma, chronic sinus problems,...

Hi all! I’m trying to access their website but without success. Similarly emails...

FeelingGreatNot

•5 years ago

Is Vasculitis classed as a disability?

I am not looking to claim any sort of benefit but I understand that I can get specialist equipment VAT free if I have a chronic illness (HMRC gives diabetes as...

I am not looking to claim any sort of benefit but I understand that I can get sp...

•5 years ago

new here/temporal arteritis/extreme fatigue

Hi,new here introducing myself. Brief history: hyperparathyroidism operation 2003-rheumatoid arthritis diagnosis 2007-hospitalised with sepsis 2018- diagnosed...

Hi,new here introducing myself. Brief history: hyperparathyroidism operation 200...

•5 years ago

Newly diagnosed - Vasculitis (Churg Strauss)

I have just been diagnosed with Churg Strauss also know as EGPA. Am undergoing some cyclophosphamide infusions, as well as 50 mg of steroids. Any tips on how...

I have just been diagnosed with Churg Strauss also know as EGPA. Am undergoing ...

Jakebordercollie

•5 years ago