Vasculitis Update

I had a meeting with my Rheumatology Nurse yesterday, and got updates on recent scans, tests and my treatment plan.

To read the story of my diagnosis/ journey so far click here.

My vasculitis seems to be limited to my ear, nose and throat area, with other general vasculitis symptoms such as fatigue. I have also had several “infections” related to my kidneys, which is quite worrying.

Recently I had scans of my sinuses to see if there is a visible problem, such as an obstruction, or if the symptoms I feel are purely down to my vasculitis.  The scan came back clear. My symptoms are relatively stable, the plan is to get me off of the steroids and potentially onto methotrexate. Yaaaay!

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I have a love/hate relationship with prednisone; I am really happy in that before I started taking it I literally found it difficult to get out of bed, and would generally only make it as far as the settee, but on the other hand there is the (massive) weight gain, bloating, and generally puffiness. Below im going to post a before and after prednisone picture of me – I’m not trying to be negative, or body shaming or anything like that, this is purely to demonstrate the effect steroids have had on me.  I have lost about a stone since dropping from 7.5mg to 5mg a few months ago, and initially was on 10mg. I’ve been on them since September/October last year, which is a significant period of time.

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I’m feeling really optimistic; I try to explain to people that I am not going to get “better,” this is an illness I am going to have to manage for the rest of my life. The rheumatology nurse said I am doing all the right things, she’s really pleased with me and I’m going to keep doing them. Some days I do just want to stay in bed all day, but living in such a beautiful area it would be a crime to not go outside and get fresh air.

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My life is going really well at the moment; I’ve moved and love my new home, I’ve just started a new job with a manager I love and have worked with before, I have the best, funniest, weirdest husband, and my friends & family are all happy.  What more could you ask for?

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My next appointment with the Rheumatologist is in August, so I will post another update then.

Let me know you’re vasculitis war stories and successes in the comments below!

Cheerio!

Stephani Xxx

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2 thoughts on “Vasculitis Update

  1. My husband had kidney failure and has to take prednisone as well. He’s gained some weight also and I know he’s sensitive about it. You’re not being negative, you’re telling it how it is! But good for you for working so hard to not let the medicine or the disease defeat you!!!

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    1. Oh no, I’m sorry to hear about your husband. I think size and weight is a sensitive area at the moment in general, especially with the Body Positivity movement; I was just trying to say there’s nothing right or wrong with this size, it’s just not normal for me and it’s making me uncomfortable. Xx

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