Vasculitis Update June 2019

Hallo all. I’ve been a bit quiet on the vlogging/blogging front, as I’ve been having a bit of a flare.

My vasculitis has mostly exhibited through ENT symptoms like sinus pain, nose bleeds, ear infections and related oesophageal infections, costochondritis and bronchitis. This led to my Rheumatologist at the time creating the term “ENT Limited ANCA Associated Vasculitis”. I needed a diagnosis at the time, as my employers were being less than understanding about the whole rare disease thing… he suspected I had the early symptoms of GPA, but was unwilling to label it that at the time.

My GP has since told me that one other person has been diagnosed with ENT Limited ANCA Associated Vasculitis, so hey – it’s trending!

I have also had recurring gastrointestinal problems, kidney infections, UTI’s and general pain. I’ve had some CT scans and ultrasounds, but they couldn’t really find anything. They suspected there may be kidney involvement with my vasculitis, but due to the mildness (ha) of the symptoms, it was decided to stick with my current treatment.

I kept going back to my GP and Rheumatologist because it felt like nothing was happening. My energy levels have been decreasing, I’m constantly exhausted again, had really bad brain fog, been irritable, unmotivated, insomniac and pain, pain, pain.

They found blood and high reactive proteins in my recent urine tests, and my blood tests showed I am experiencing a flare. I had come off the methotrexate and was down to 2.5mg of steroids daily. I had almost lost all the 6stone I gained from when I was first on steroids. Now I’m increasing to 7.5mg prednisolone daily, with two weeks of 15mg, 2 weeks 10 mg first, just to get it into my system.

I’m in week 2 of 15mg, and I’m so tired. I find it incredibly hard to get out of bed, want to sleep all day, and then at bed time my mind wakes up and decides to remember the lyrics to every random song I’ve ever heard. I haven’t gained any weight yet, but I am retaining a lot of fluid.

I also keep coming out in cold sores. Soooooo attractive. When I can drag myself out of the house to run errands, I keep bumping into people who do not recognize me, because no makeup, hair pulled back –jeans and hoodies! This is not me.

I’m sticking to the Keto diet, as this is the thing I’m finding most effective for managing my weight whilst taking these medications. I am hungry all the time.

I will post further updates as I can. If you have any tips on managing weight whilst on steroids please let me know, but dont suggest the gym. I will slap you.

5 thoughts on “Vasculitis Update June 2019

  1. Hahahaha, that prednisone meme made me laugh, so I showed hubs and he was all “that’s so you”. And yes, managing weight on it is so hard. I can’t do keto because of my bowel disease (no nuts, no raw fruits and veg, no fatty meats, no oils) so I am just ‘steroid hangry and … heavy’.
    I hope it gets better for you soon. Thinking of you!! x

    Liked by 1 person

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