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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