Day three of 30mg of prednisone, and I am about 70% better than I was three days ago. I can’t believe it. I still have aches. My wrists are still sore, so are my feet and knees. My lower back is the sharpest and my right shoulder hurts more in some positions. I guess that’s because of the mechanical damage to the shoulder that needs cleaning out.
But it’s the intensity that has dropped. My muscles are sore from my first workout in a few weeks. And my joint pain is no worse than my sore muscles. When I got up this morning, I could stand, and walk. I didn’t need to hobble to the kitchen to get heat packs first thing. I was stiff, but I loosened up pretty quickly.
I didn’t sleep much last night, but that’s pretty normal. I am ravenous. Fine. None of this matters much when three days ago I was in so much pain I literally could not move.
And now the pain is mild.
This is awesome. It’s the kind of pain that if I get busy and get moving, I can put out of my mind. I can push through it. I think this is the kind of pain that most people think I am talking about when I talk about arthritis. I wish. This is very manageable.
But most importantly, this means most of my pain is reversible. Doctors have been casting doubt on whether or not I truly do have inflammatory arthritis. If my arthritis is active, or if I just have a pain syndrome. Or its pain from cartilage damage done before my inflammation was under control.
This response to prednisone proves that most of my pain is caused by active inflammation. It’s good to know. I was having serious doubts.
And if prednisone can reduce this inflammation, then maybe another drug can too. Maybe Orencia. Or something else. I have been getting to the point where I was thinking that NOTHING would ever help. Nothing could ever give me any kind of normal life. Which is a pretty depressing thought.
Prednisone can. If only I could take it always.
But it also makes me sad. Years I have been living with this pain. Years! There is a drug that can reduce it significantly. But it might send me blind. So I can’t take it for long.
I could live a normal life with this level of pain. An almost normal life. A comparatively normal life. It’s all relative.
Another problem is that it used to take 20mg to make me feel this way. Now it takes 30mg. So that would imply that my inflammation is worse. Also, today is just one day. It’s nearly 11am and I have vacuumed. I have folded the washing. And I have been to the shops and paid some bills. I will take an endone soon, because the pain is increasing after all of that. Also I don’t want to go cold turkey on oxycodone. After two weeks of high doses, I’ll taper down.
I’m tired, because I didn’t sleep much. Predsomnia. But this just emphasizes the difference between ‘fatigue’ and ‘tired’. Everyone gets tired.
So this is the first day I’ve felt decent in a long time. It’s only one day. Tomorrow I might be bed ridden again. Prednisone has never stopped the megaflares. It has reduced their intensity, frequency and duration, however.
So we’ll see. I’m back on top of things. For how long? I don’t know. I’m supposed to start tapering tomorrow. 2.5mg every 3 days. Until life gets too hard again.
And the cycle continues. This is literally the story of my life. I’ve written it all down and documented it, because this is the constant. At any one time I am either OK on a high dose of prednisone, tapering, or couch bound and wondering how much longer I can take it. It’s a tedious cycle, and no dmard has broken it.
I need to go back over all these posts and write it up properly. It’s the anatomy of a flare cycle for me. The reality of living with rheumatoid arthritis. This is all straight off the top of my head and uneditted. Its a quick diary. But it’s clear to me from writing all of this down that any depression I experience is secondary to pain. And that my pain is caused by active inflammation. I have to stay clear on those points, to deal with the doctors. To demand the appropriate treatment. To not be cast aside as a fibro case.
I am still flaring. I am always flaring. My wrists and feet and knees are still inflamed. Just less so than yesterday. Pain free has been off the table for years. Remission has been off the table for years.
Low disease activity IS possible however. And that’s what I’m aiming for. It will be good enough for me.