and habit-forming

And a quick health related post as well, because shit’s been going down! Kind of!

Well, to be honest, it hasn’t been anything that wasn’t already expected. I went in for an appointment on Tuesday, with the nurse and doc running the trial I’m on. Hypothetically, it was for my next dose of the drug, but we all went into it knowing that, unless something had happened of a dramatic nature over the weeks beforehand, there wasn’t any point continuing. So we’re not.

And I finally nodded, in moderate defeat, when prednisone was brought up. The many and varied medical staff who I deal with have all been very understanding of my reluctance to take steroids, and so I’m only on a low dose, and will be tapering after a month. I’ve been feeling a little better – I’m not sure if it still needs a day or two to really kick off, or whether the dose is just too low… I’m really hoping the former. But regardless, the slightly more major thing, kind of, since the pred is just a temporary measure, to hopefully jump-start my feeling better (although to me it feels sort of like a bigger deal, since I’ve been saying ‘…no, thank you’ for the past year, almost) is that next week, I have my first infliximab (aka Remicade) infusion. Fiveish hours on the IV. Hooray.

I mean, I’ve had an iron infusion before, so I kind of know what’s up, but still, megadrugs! Problem is, the trial drug I’ve been on is a TNF blocker too, and I had minimal – if any – response to it. So it stands to reason that the infliximab (I’m getting used to calling it that, even though most of the internet does refer to it as Remicade, because my medical folks all do) may well not work for me either. But in the positive column, it has a proven track record – been around since about 1999, I think? – as opposed to being in phase II of a trial.

So we’ll see. Maybe I’ll even liveblog (or livetweet, more likely, let’s be honest) the whole exciting experience next Wednesday! It is fun slightly freaking out one’s Facebook friends list with sassy bathroom mirror pictures of yourself attached to an IV… oh wait, here’s one I prepared earlier!

What a sexy face, n’est-ce pas? And that bedroom hair! Oh, stop!

But yes. So, we continue the quest towards Successful Medication Ideally Without Total Colectomy. Which currently means that I’m taking upwards of 15 tablets a day, in addition to the soon-to-occur infusions. What an exciting life I lead. Oh, and this whole starting infusions thing at the same time as starting meds with possibly super-duper fun psychological-and-other-stuff side effects? All at the most stressful time of year for me as a textbook buyer for schools. SWEET AS.

One thought on “and habit-forming

  1. Hi Briar,
    Love that name… I read this post and saw myself, literally! I was wondering if they tested your gut for fungus (yeast)? Nothing worked on me either and then I found out I had a lot of yeast and got on nystatin and almost all of my UC symptoms have gone away with exception of some bloating. I feel like a human again…
    Love the blog, keep up the good writing..

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