Prednisone Wars

Since 2010, I've been taking corticosteroids on a daily basis. When I was first prescribed it in massive amounts, it was like a miracle. My cough disappeared. My breathing was like normal. Yes, I had to monitor every bite of food I put in my mouth, but I experienced an amazing turn around in the symptoms of my disease.

But prednisone is not without risks so I understand why my docs want to wean me off it. Especially since I'm on CellCept, which is supposed to allow me to get off prednisone completely.

My body, however, has other plans.

After six years of dependence on it, my adrenal gland is thoroughly out to lunch. I'm not producing any corticosteroids on my own. And even if I step down as little as 1 mg a day and hold that new level for weeks, my lung function deteriorates.

Granted, I have not had any objective testing, but just based on how I'm able to go about my day, I notice a difference immediately. It may not seem like much to you, but being able to walk slowly around my own home or to stand long enough to prepare a meal for my family without being tethered to Herkimer (my Portable Oxygen Concentrator) is a win for me. If I drop below 10 mg. a day of prednisone, I can't do these simple things.

Sometimes I feel as if I'm snorkling through life...waiting to surface for the next puff of O2 from Herkimer. Don't get me wrong. I love my POC. He's my world-expander, my freedom to still have adventures. But I dearly love to go without him when I can.

When I last spoke with my doc at Mayo, he said finding the prednisone "sweet spot" was more art than science. After nearly five months of miserable tinkering, during which I hit my lowest level at 3 mg a day, I've come to believe that I was already at my sweet spot before we started this fiasco. At 3 mg, it took me 45 minutes to walk a mile on my treadmill. At 10mg, I can do 2 miles in about 55 minutes.

So I'm holding steady at 10 mg.

Since an average healthy person's adrenal glands produce between 7 and 10 mg. of cortisol (the natural substance prednisone replaces) each day, I'm simply on the high side of normal. It's times like these when I remind myself that doctors are only "practicing" medicine. While I am grateful for their guidance and expertise, I'm the one who ultimately decides how to manage my symptoms.

I choose to be more active. I choose to push back against this disease, to feel normal as long as I can. I choose not to give NSIP an inch without a fight.

When you're dealing with a chronic progressive disease, war is the only option.