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Vasculitis UK

Treating My Vasculitis

By HealthNo Comments

Last week I was feeling a bit lost. My blood tests had come back positive for vasculitis. My ENT Consultant stated she had referred me to a vasculitis centre and started me on some steroids. She said that I wouldn’t need to be seen again by her, unless the Vasculitis Specialist requested it.

But instead of an appointment to see the Vasculitis Specialist, I got a letter through for another ENT appointment in a month’s time. Having checked this week, apparently the appointment is with a Vasculitis Specialist.

I didn’t know how to navigate the world of vasculitis. I didn’t really know much about what the diagnosis meant. I needed help. So I telephoned the Vasculitis UK’s helpline.

The volunteer who answered the phone was fantastic. But she didn’t have good news. The steroids just mask the symptoms and are not the treatment. The treatment is chemotherapy medications and immunosuppressant medications, with the aim of getting the vasculitis in remission (under control). I could be on this treatment for some time. As once the disease is under control, it will be about maintenance (keeping it under control).

The volunteer gave me some excellent advice around my local specialist treatment centre, which I have followed. Unfortunately, the centre hasn’t yet received a referral for me so I am following this up.

I have no idea what this means for me and my life at the moment. Right now, I’m just having to take it day by day.

Take Care,

Antony

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Thursday 23 May 2024

Vasculitis Facts

By HealthNo Comments

Vasculitis Facts

Vasculitis is a rare inflammatory disease which affects about 2-3000 new people each year in the UK.


Vasculitis means inflammation of the blood vessels. Any vessels in any part of the body can be affected.

Vasculitis UK – The Facts, last accessed: 07/05/24.

Vasculitis is an aggressive autoimmune disease where your white blood cells attack the small veins and arteries in a person’s eyes, nose, lungs and kidneys. The exact cause is unknown but a person is at higher risk of getting vasculitis if they have other autoimmune diseases such as diabetes.

There are different types of vasculitis including:

  • Granulomatosis with Polyangiitis (GPA), previously known as Wegener’s Granulomatosis,
  • Microscopic polyangiitis (MPA)
  • Eosinophilic Granulomatosis with Polyangiitis (EGPA), previously known as Churg-Strauss syndrome.

My ENT Consultant has referred me to a Vasculitis Specialist urgently as she is 99% sure that this is what I’ve got. I remember reading somewhere online that with one type of vasculitis the average life expectancy is 20 years from diagnosis. I’m 37 years old, which would mean my average life expectancy would be 57 years old if I have that type. Unfortunately I don’t know what type of vasculitis Doctors think I’ve got and the diagnosis isn’t yet confirmed.

Hope to have answers soon,

Antony

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Tuesday 7 May 2024
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