Sunday, August 14, 2011

One would think...

...that given I now have the Blogger application on my Tablet that I would be posting more frequently right? Apparently not, or maybe. Given the lengths of time that have elapsed between posts in the past, these last few have been coming thick and fast.


Two weeks ago I had an appointment with Peter to check on the progress of my Whooping Cough and assess whether I could commence my next course of Rituximab. The Whooping Cough is progressing as it should, unfortunately it's not going to go away overnight, the Rituximab on the other hand is not going to happen.

My ESR and CRP levels remain quite elevated, leading to Peter concluding that the Rituximab has had very little impact on the disease itself. I'm pretty sure this has not been helped by the fact that I have not had Cyclosporin for nearly two months. At any rate, since it is the only thing that appears to have worked in the past, I will be recommencing 6 weekly infusions of Infliximab starting this coming week. We're really not sure what is going to happen fro here. The last few times I have been given Infliximab, I have had a rather nasty reaction to it. The plan this time is to pre-load me with large doses of an Anti-Histamine and Methyl-Prednisolone in an attempt to prevent any negative reactions. Here's hoping, as I also believe Infliximab is one of the few things that has made my quality of life as high as it has been. That plus Peter keeps telling me that if it weren't for the Infliximab, I would be dead today. Geez doc, way to keep reminding a guy...

I have not long returned from Bowen, having visited my mother for her birthday. She was quite happy to see us, even minus Madison, who was away at a sleep-over birthday party for one of her friends. Today was mum's first birthday in a nursing home, and while she seems to be settling in okay now, I think it helped her to feel better being surrounded by family for a few hours.

Travelling seems to be taking more and more of a toll on me as time goes by. I guess the body is starting to break down at an alarming rate now, and thanks to the ever increasing doses of pain killers I am being prescribed in an attempt to make life more comfortable, the brain is starting to follow suit. It's not that I feel any less like myself, more of a case of not being to concentrate on anything for any length of time, constantly forgetting what I was going to do when I get somewhere, and not having much patience for anything any more. Before anyone starts to worry though, I should reassure you that I have taken it upon myself to drive as little as humanly possible.

Well, it's time for me to start settling down to my night time routine, so as always, I will keep you posted as things occur.



  1. Jason. What condition were you in when diagnosed with this disease?

  2. Hi lildreamer,
    Are you referring to before the first symptoms or how far it progressed before diagnosis?
    If you would like, you can email me at, or