Prednisone Withdrawal: When My Body Finally Said Enough

I was standing at the stove at work when I realized I was so exhausted that I genuinely felt as though I could lie down on the kitchen floor and fall asleep. Welcome to A Body Rebels. I'm Tate. This podcast shares my personal experiences and is not medical advice. Please speak with your own provider before making medical decisions. The voice you're hearing is AI because illness makes speaking difficult, but the writing, memories, opinions, and experiences are mine. Today I want to explain why I missed an episode last week and talk about what this fifth attempt to come off prednisone has taught me about pain, exhaustion, work, and finally putting myself first. First, I owe a small apology. If you subscribe to the podcast and you were expecting an episode last Tuesday, it wasn't there. And I didn't make some thoughtful decision that I needed a week off. I didn't look at my schedule and say, you know what? I'm gonna practice some self-care and skip this one. I just completely missed it.

Haha.

That's how out of it I was. Last week was particularly bad, and for several days I was pretty much wiped out. I had no physical strength, very little mental energy, and apparently absolutely no awareness of what day of the week it was. It wasn't until Monday night that it suddenly hit me. Holy shit. I didn't do a podcast. And once I realized it, I thought about those of you who subscribe and actually look for a new episode on Tuesdays, and I did feel that I should explain what happened. Not because missing one episode is some catastrophe. Nobody died because a body rebels didn't appear in their podcast feed. But if you make the effort to listen to me, I think you deserve to know why I disappeared for a week. And the answer is that my body basically took me out of circulation for a few days. I've lived with sarcoidosis for 20 years, and I've also been taking prednisone for 20 years. Over those years, I've tried four separate times to get off prednisone. Every attempt eventually reached a point where the symptoms became too much and the prednisone had to go back up. This is attempt number five. But there's one major difference this time. I'm taking methotrexate. Methotrexate is being used as a steroid sparing medication for me. The idea is that it can help control the sarcoidosis while I reduce the prednisone, so hopefully my body doesn't need to rely on prednisone the way it has for the last 20 years. And for the first time, I've made it all the way down to 2.5 milligrams. 2.5. I've never gotten that low before. On paper, that sounds fantastic. And it is. Getting from the doses I've taken over the years all the way down to 2.5 milligrams is a huge accomplishment for me. But my body apparently didn't receive the memo that this was supposed to feel like a victory. This has been the hardest prednisone taper I've ever gone through. And I really wasn't prepared for how hard it was gonna be. In the previous attempts, I'd reach a certain point, the symptoms would become too much, and we'd stop. This time my doctor has been much more determined to see whether I can get through that difficult stretch rather than immediately going back up on prednisone. She's a pusher. I don't mean that negatively. She just isn't willing to give up on the idea of getting me off prednisone as quickly as I might have in the past. Her attitude has basically been that if I can safely tolerate it, let's give my body some time and see whether I can get over that bump. The methotrexate changes the equation because now there's something else in the background, hopefully doing some of the work that prednisone has been doing for all these years. So I agreed. I pushed. And I pushed, and I pushed, and this time pushing hurt. The joint pain has been horrendous. Not one joint. Not one particular spot. Pain everywhere. There were days when it felt as if my entire body was protesting. Then there's the fatigue. And fatigue is such an inadequate word for what chronic illness can do to you. When most people say they're tired, they generally mean they need a good night's sleep. This isn't that. Sleep doesn't necessarily fix it. Rest doesn't necessarily fix it. You can wake up exhausted. You can sit down for an hour and get up exhausted. You can sleep and somehow feel as though you've been doing manual labor all night. And when it gets bad enough, even ordinary things start requiring calculations. Can I stand long enough to do this? If I walk into that room, am I going to have enough energy to walk back? Can I finish this before I need to sit down? Can I get through another hour of work? For a while, an hour or two was about all I had in me. And that's difficult when my to-do list doesn't care that I'm sick. The list just keeps growing. There are things I need to do at home. Things I need to do for work. Things I need to do for the podcast. Appointments. Emails. Phone calls. Every day something else gets added, and when you only have a tiny amount of usable energy, you start playing this strange game of triage with your own life. What absolutely has to happen today? What can wait? What can I ignore? What can I abandon completely? And that's how the podcast ended up falling off the list. Not intentionally. There simply wasn't enough of me to go around. The nausea has also been awful. For me, that one is especially interesting because I work as a private chef for one family. Food smells are part of my working day. Normally that's a wonderful thing. But when you're nauseated, smells that ordinarily wouldn't bother you can suddenly become overwhelming. I'd be cooking something and thinking, I don't know how anyone survives morning sickness. Because when you're already trying not to throw up and then you're standing over food, it's not exactly the ideal working environment. I've also been dealing with edema. My feet and ankles became badly swollen. I started wearing compression socks, and my diuretic dose had to be increased. I've had coughing. I've had pain. I've had that horrible feeling that my body is just completely depleted. And through all of this, I've still been trying to work. Which brings me back to that kitchen floor. I was standing there working one day, and the fatigue became so intense that I had this very clear thought. I could lie down right here. Not in a bed, not on a sofa. On the kitchen floor. I felt as though I could just curl up on the floor beside where I was working and go to sleep because I didn't have enough energy left to remain standing. And suddenly something clicked. I'm around heat. I'm around a stove. I'm cooking. If I've reached the point where I'm struggling just to remain upright and awake, this isn't determination anymore. This is dangerous. That was the moment when I knew I had to stop. Turn off the stove. Walk away. Rest. And surprisingly, I didn't feel guilty. Years ago, I probably would have. I would have been thinking about everything I hadn't finished. I would have been worrying that something wasn't perfect. I'd have been trying to convince myself that I could squeeze another half hour out of a body that was already begging me to stop. But I didn't. I felt relief. I've always had a perfectionist streak. I like things done properly. I like things finished. And I've realized over the years that perfectionism can sometimes be another form of insecurity. Sometimes we're not chasing perfection because perfection actually matters. We're chasing it because we're afraid of being judged. We're afraid somebody will think we're lazy. We're afraid we'll disappoint someone. We're afraid that if we don't keep producing, doing, and accomplishing, somehow that says something about our values. But I've reached a point in my life where I don't have the energy to live that way anymore. Literally. My employers are wonderful people. If something doesn't get done, it doesn't get done. It'll get done another day. Nobody is standing over me demanding that I sacrifice myself to finish dinner. The person putting that pressure on me was me. And this taper has forced me to look at that. When you're sick, particularly when you're chronically ill, there comes a point where you have to decide who gets priority. And I've decided it's me. That doesn't mean I don't care about other people. It doesn't mean I don't care about my work. It doesn't mean I don't care about this podcast. It means none of those things can happen if I completely destroy myself trying to keep all of them going. And there's another truth I've been thinking about. It's a little callous. But it's true. You can love your job. You can be dedicated. You can be the most reliable person in the building. Your employers can love you. Your coworkers can love you. You can be incredibly important to the people you work with. But if you drop dead tomorrow, eventually somebody else is gonna do your job. People may genuinely grieve you. They may miss you terribly. They may talk about what a wonderful worker you were. But the work still has to continue. Someone eventually sits in your chair. Someone takes over your responsibilities. Someone cooks the dinner. Someone answers the email. Someone fills the position. That's simply how work functions. But your family doesn't replace you. Your friends don't replace you. The people who truly love you don't put out an advertisement for another you. There isn't another version waiting somewhere to take your place. And I think sometimes we give our jobs the energy that belongs to our lives. We protect the work at the expense of the person doing the work. I've done that. A lot of people do that. And chronic illness has a rather brutal way of exposing how unsustainable that is. My body gave me a choice. I could keep pretending that everything needed to be done because I decided it needed to be done. Or I could accept reality. I wasn't functioning normally. I was sick. I was exhausted. I was in pain. I needed rest. So some things went on the back burner, including this podcast. And here's something else that's changed for me. There was no guilt. There was no regret. I didn't spend the week beating myself up because an episode didn't come out. When I finally realized I'd missed it, my reaction wasn't, oh my god, what have I done? It was more like, well, apparently I really needed that week. I'm sorry if you were waiting for an episode. I genuinely am. But I'm not sorry that I took care of myself. Those are two very different things. And I think that's something I'm learning during this fifth taper. I'm learning to listen sooner. I don't have to wait until I'm practically ready to sleep on a kitchen floor before I admit I'm tired. I don't have to wait until the pain is unbearable before I say something hurts. I don't have to earn rest by completely exhausting myself first. That's a very difficult habit to break when you've spent years pushing through. Chronic illness teaches you endurance because sometimes you have no choice. You learn to function with pain. You learn to function tired. You learn to adapt. You learn to keep going when your body isn't cooperating. And that resilience can be incredibly useful. But resilience can also become a trap if you start believing that because you can push through something, you always should. There's a difference between being strong and being reckless with yourself. I'm trying to learn that difference. I'm still going through this. I haven't reached some magical point where everything suddenly feels wonderful. The pain hasn't disappeared. The fatigue hasn't completely gone. I'm not standing here declaring victory and tossing the prednisone bottle into the sunset. But today, I am noticeably better than I was over the last couple of weeks. And I'll take that. After how bad things became, even a little improvement feels significant. The methotrexate seems to be giving us a chance to do something I haven't been able to do during the previous four attempts. I'm still at 2.5 milligrams. I'm still pushing forward. But I'm also paying much more attention to what pushing forward actually costs. Because getting off prednisone is important to me. But so is getting through the process in one piece. And if that means some things don't get done, they'll wait. If an email waits, it waits. If something on my to-do list moves to tomorrow, it moves to tomorrow. If a podcast episode occasionally doesn't appear on Tuesday because I'm too sick to produce one, then that's what happens. I would rather miss an episode than miss the message my own body is trying desperately to send me. And last week, that message was very simple. Stop. So I stopped. I'm Tate. Thanks for sharing this time with me. Until next time, take care of yourself. Keep breathing, and remember, sarcoidosis is only rare until you're the one living with it.