2013 was a coast year for my Cushing's. The Metyrapone that I get from the NIH has been keeping my cortisol levels down and I take hydrocortisone daily to replace what the metyrapone is blocking. I pee in a jug every 6 weeks or so and basically go about my daily life like nothing with my body is jacked up. Until now. I just couldn't quite close out the year! And I was so close! As Maxwell Smart used to say, "missed it by that much..."
My cortisol levels have been creeping up the past few blood/urine tests I've had but nothing that anyone was worried about. I was still in the low end of normal and even though technically being on Metyrapone means my cortisol levels should be non-existent, no one was too worried. Until now. I seem to have made it to the high end of normal which means that a) taking in a full dose of hydrocortisone daily in addition to making my own puts me way over the recommended daily allowance of cortisol, and 2) the tumor that is creating all this havoc is overpowering the medication. Think of it as an old western...the black hats are winning the shootout...
In response to this change of events, my fabulous team of doctors have decided to add in another medication in an attempt to regain control over my naturally generated cortisol level. Seeing that I am at the maximum daily dose of Metyrapone, and there aren't any other drugs left for me to try, it's our best (and close to only) bet. I've started taking a drug called Ketokonazole in a low dose once a day and will pee in a jug (good times!) and have blood tests every week to see if it's working.
Those long time followers of this blog may find Ketokonazole a familiar name. It was one of the first drugs I was on way back in the early days of fighting Cushings that had a rather bad result on my liver when I was ramped up to a high dose after lower doses failed to budge my cortisol levels. The doctors will keep that in mind as we watch what happens, and Keith and I will be a little more cognizant of whether or not my eyeballs are turning yellow. Live and learn...
It's kind of a bummer being back on the weekly jug peeing schedule. I thought those days were over as I happily was getting used to being stable and only having to do it every 6 weeks or so. But I also don't want my liver to crap out, and to see symptoms of the Cushings to start appearing again. My hair is finally grown back for heaven's sake! How many times do I have to endure it falling out! So I clear a space in the fridge for my jug, and set up a recurring blood draw on my calendar. There is not much else to do or whine about. I was scheduled to go back to the NIH for my annual radioactive scan parade in February anyway, so the timing of this all actually couldn't be better. No matter what happens, by the time we see what my body is doing on the new drug, it'll be time for me to fly off to Bethesda. Assuming nothing catastrophic happens between now and then my team back there will have lots of data to look at. It's fun to be a lab rat, huh?
So for right now I'm still going along as normal. Working, exercising, stripping paint in our house (some things never change!) will keep me busy and my mind off of wondering what will happen and my perpetually upset stomach. The good news is that it looks like I'm back in the blog business again! The bad news is that it looks like I'm back in the blog business again!!
