Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,850 members•6,872 posts

All posts for September 2024

Does anyone have experience of how Large Vessel Vasculitis (GCA /TA) may be affected by a long haul flight?

I’ve never experienced a long haul flight and, as we prefer to drive when we holiday abroad, I haven’t been on a plane for 15 years but I am booked to go to S...

I’ve never experienced a long haul flight and, as we prefer to drive when we hol...

•22 days ago

Covid Again - Watch this Space - Final Words

Hi all. Well it’s now 4 weeks since I first tested negative after nearly 5 weeks of Covid. So my final words on this may surprise a few and I haven’t changed...

Hi all. Well it’s now 4 weeks since I first tested negative after nearly 5 weeks...

•23 days ago

Vasculitis UK AGM

Looking forward to seeing many of you registering for our AGM. Register by emailing us at agm@vasculitis.org.uk We opted out of doing it face to face as...

Looking forward to seeing many of you registering for our AGM. Register by emai...

Administrator•29 days ago

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Experience with Endoxan 50mg and Alcohol

Hello I am being treated for renal-limited vasculitis from p-ANCA, MPO. eGFR has improved from 23 to 56 over last three months. So many lifestyle and dietary...

Hello I am being treated for renal-limited vasculitis from p-ANCA, MPO. eGFR ha...

•29 days ago

Autumn booster Covid vaccine

hi Does anyone know which vaccines will be offered in the Autumn for Covid. I want to make sure is not last years stock and therefore would not protect...

hi Does anyone know which vaccines will be offered in the Autumn for Covid. I ...

•1 month ago

ACTREMA FOR GPA

I am concerned about this blood sugar rising with Prednisone issue, has anyone with GPA gone quickly onto Actrema? Say within week or 2 of starting treatment

I am concerned about this blood sugar rising with Prednisone issue, has anyone w...

•1 month ago

PREDNISONE ALTERNATIVE

was looking at info on GPA initial treatment, and t A doctor/rheumatologist (USA) mentioned using a drug instead of steroids for initial treatment that was...

was looking at info on GPA initial treatment, and t A doctor/rheumatologist (US...

•1 month ago

HOW LONG DO FLAIRS LAST

Since I am new to this, how long do these flairs last ? or is it a variable thing.

Since I am new to this, how long do these flairs last ? or is it a variable thin...

•1 month ago

VASCULITIS CLASSIFICATION:

need help here , GCA is a large vessel vasculitis but it shows up on the temporal artery which is not a large vessel. PAN is medium vessel, but cant even find...

need help here , GCA is a large vessel vasculitis but it shows up on the tempor...

•1 month ago

COGANS SYNDROME

There are around 500 cases of this in the world, so is extremely rare, which means diagnosis becomes even more difficult. CG as its referred to is a form of...

There are around 500 cases of this in the world, so is extremely rare, which mea...

•1 month ago

Cogan's syndrome

Hello! So I was diagnosed with Cogan's in Oct 23. It all started with severe ear pain after my second COVID vaccine which progressed to hearing and balance...

Hello! So I was diagnosed with Cogan's in Oct 23. It all started with severe ear...

•1 month ago

Cogan's syndrome

Hello! Does anyone here have Cogan's syndrome? I was diagnosed last year. My symptoms started straight after my second COVID vaccine and worsened after my 3rd....

Hello! Does anyone here have Cogan's syndrome? I was diagnosed last year. My sym...

•1 month ago

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How to get a diagnosis?

Hi. I'm would like to know how long it take for a diagnosis if you don't have anca in the blood test. I had skin problem but i wasn't able to get an...

Hi. I'm would like to know how long it take for a diagnosis if you don't have an...

•1 month ago

EGPA x Skin nodules

Hello, I am new to this forum and my husband has EGPA, diagnosed in 2019.He's currently prescribed mycophenolate, pred 15mg x has nucala injections once a...

Hello, I am new to this forum and my husband has EGPA, diagnosed in 2019.He's cu...

•1 month ago

THYALAZINE AND THIAZIDE VASCULITIS

Does anyone have experience or more info on drug induced vasculitis fom Thyalazine or Thiazide ?

Does anyone have experience or more info on drug induced vasculitis fom Thyalazi...

•1 month ago

VASCULITIS AND VEINS

Can vasculitis affect larger veins ? I think the larger veins in my scalp are inflamed and very sore, can trace them under the skin and seem to correlate...

Can vasculitis affect larger veins ? I think the larger veins in my scalp are ...

•1 month ago

GCA Diagnosis, Arm/Leg Vasculitis?

Hello, I was diagnosed with GCA this past April in the emergency room. I was experiencing lightening jolts of pain on the right side of my head and had very...

Hello, I was diagnosed with GCA this past April in the emergency room. I was ex...

•1 month ago

ANCA BLOOD TEST

Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ear issues, vertigo, headaches and inflamed arteries in various areas, specialist...

Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ea...

•2 months ago

New Girl

Hello I’m new to this-just diagnosed with GCA. Interested in comments re Preds as I’ve been started on 60mg a day feel great but highly animated so only sleep...

Hello I’m new to this-just diagnosed with GCA. Interested in comments re Preds a...

•2 months ago

Biopsy injection

Hi has anyone had a skin biopsy on their shin/leg for suspected hsp/ Vasculitis?Iv got a biopsy on Wednesday and I'm really worrying and anxious. Is the...

Hi has anyone had a skin biopsy on their shin/leg for suspected hsp/ Vasculitis?...

•2 months ago

Scottish Winter 2024 Covid/flu vaccination programme

Full details from the Scottish Chief Medical Officer for the upcoming flu and Covid vaccination programme in Scotland. Click through to the PDF to see the full...

Full details from the Scottish Chief Medical Officer for the upcoming flu and Co...

Volunteer•2 months ago

Bronchiectasis

Dx with GPA in 2015, now newly dx with Bronchiectasis. Really really struggling, & doesn’t appear to be much available to help. Just wondered if anyone could...

Dx with GPA in 2015, now newly dx with Bronchiectasis. Really really struggling,...

•2 months ago

Suggestions on how to prevent infection/sepsis while on prednisone?

Hi everyone Does anyone have any suggestions on how to prevent infections or sickness while on prednisone? I've only been on a month and feel like i'm getting...

Hi everyone Does anyone have any suggestions on how to prevent infections or si...

•2 months ago