This is more for me than for anything else. A log of where I’m at with my prednisone taper.
I have been on Xeljanz for 12 weeks. I have been at 9mg of prednisone for two weeks now.
The list of things my doctor tells me I should ‘just put up with’ is long and obnoxious:
Daily chest pain.
Daily tachycardia – an average of 4 hours of tachycardia a day. It’s not very fast, usually between 100-120 beats per minute. But it does spike up to the 150s and 160s when I am lying down. And have been lying down for hours. I know its not dangerous, but its not supposed to be happening. And it pre-dates the pred taper, so that isn’t it.
Peripheral neuropathy – constant, painful pins and needles in my hands and feet.
Tinnitus – constant ringing in my left ear.
Icepick headache in my temple, constant frontal headache
Daily upper GI pain attacks. Sometimes mild, sometimes severe. When severe, they only last about 15 minutes, but it’s a horrible 15 minutes.
Constant nerve pain in my left hand. The cubital tunnel surgery was unsuccessful in my left hand, and in fact made things worse. My hand function is still less than 20%, my grip strength (both hands) is classed as ‘very poor’. That’s the worst category. It will never get better, I understand that. But the left hand feels like it has been cut open. I still look at it and sometimes can’t believe it’s not bleeding, particularly on the pinky side of my hand. But you get that. I was warned this could happen. It just wasn’t very likely. But hey, this is me we’re talking about.
As I taper down on prednisone, pain levels are increasing. I’m living at 8s now, and spending most of my time lying down. This isn’t because I want to, and it pisses me off. I usually push hard. But this as hard as I can push now. I haven’t left the house in over a week, with the exception of an essential grocery run. The grocery store is 1km away. I had to go, and I have to go today to pick up my meds. No choice.
Every joint is flaring, every day. The cortisone shot into my shoulder was successful, and so I can have surgery to permanently relieve that pain. Ditto for my lumbar pain, I could have another radiofrequency ablation on my SI joints. I can’t see the point now, when all my joints are almost as bad.
When I get up in the mornings the pain is horrible. I get up at 7am because that’s when my kids get up for school. I am not getting mobile until 11am. I take my oxycodone. I wait. I slowly start to move. Stretch. Rotate joints. Stretch some more. Gradually increase the range of motion. And rest in between. It takes four hours to be able to take a shower. And then I need to rest again.
The fatigue is probably worse though. And the nausea. I don’t have any energy with which to push, and if I push too hard I get the vapours and throw up. Nice. So my couch is my friend.
The nights are long and horrible. I don’t sleep unless I have taken a lot of oxycodone and valium. Or I just lie there awake, just me and the pain. I hate the nights.
The headache makes it hard to think. The lower on prednisone I go, the worse the headache gets. Nothing eases it. I think the headache is the worst thing, actually. It’s really messing with me.
I have upped my oxycodone to deal with the extra joint pain, which will earn me a lecture when I need to refill my pain meds early. I can’t wait for that conversation. It also means right now I am dealing with the oxycodone side effects as I adjust to the higher dose – nausea, dizziness, dopiness, the itches. Those should abate over the next few days as I adjust to the dose. And hopefully control the pain. At least some of the time.
Right now I’m either in too much pain to move, or too doped to move. But if I don’t try to control the pain, it will lead to depression and then things will get really ugly.
Apart from that, I do nothing. Gym is impossible. Leaving the house is impossible. I’m excited if I leave the couch. My mind is too foggy to achieve anything. I can’t remember anything. I can’t think. I can barely string two words together. I’ve got nothing to give. I’m back to a non-life. Existing. Not living.
I do try to do one thing every day. One thing. So that I don’t feel like I’ve totally given in. So that I feel like I’m still functioning. One thing. That’s enough for now.