Juggling RA in the Covid Era
Sometimes you have a bad month. Or two. You don’t get to choose. You don’t get to postpone. You just have to juggle your way through.
Trouble with biologics
In mid-December, when my 5th biologic was supposed to kick in, and I was going to start weaning off prednisone, all heck broke loose. I’m not sure if it was the ceiling or floor that fell through, but something came crashing down. And, so did the balls I was juggling.
RA symptoms emerge together
The fatigue was first. The worst since I was diagnosed. I couldn’t figure out why I was so tired. Then the pain, all over. The worst was my hips and hands. I was really struggling with the stairs in our home. My hands were hot and buzzed and sometimes crackled. There’s more, and many of you have either felt or heard it before.
Instead of weaning the steroids, we increased it. It took 2 weeks instead of the usual couple of days for me to start to feel a little better. Another infusion, and no improvement. Luckily, I had an appointment 2 weeks post-infusion for my doc could see me at its best. One look at my hands and it was obvious. The rest of the exam was predicted by my difficulty getting onto the exam table. A steroid shot and time to talk about a new biologic.
Here’s where the discussion got really interesting. In 2021, how are we going to juggle choosing a new biologic, planning on vaccination, and reconciling that any dose of prednisone 10mg or above increases the risk for severe Covid? In my state, I am told to expect vaccination in April. How does that affect our decisions? So many balls to juggle!
RA questions in the Covid era
- 1) Which biologic will be number 6? What will it mean for Covid risk or vaccine efficacy?
- 2) Do we add a new cDMARD?
- 3) Do I postpone the new biologic until I can get vaccinated, hoping it will be sooner than expected? This may mean increasing the steroids and the risk for severe Covid disease ...
- 4) Do I start a new biologic now, knowing that once vaccination is available there may be a 2-6 months dosing schedule to work around? But, maybe I could start decreasing Prednisone if I start a new biologic ...
- 5) How do I manage the current flare?
- 6) When can I see my out of state family? Start my new volunteer position? Get my haircut?
And a few days later, the orthopedist throws in another ball
- 7) "We really need to repair that rotator cuff before the muscle atrophies any more."
- 8) Where in the heck does shoulder surgery fit in with #1-6?
- 9) How will I tolerate decreasing steroids pre-op?
Relief from RA pain
Thankfully, increasing the dreaded-miracle steroids has me functioning better. It’s a temporary fix I am grateful for. My mood has improved and my tears have mostly dried up. I’m in questioning and planning mode, which after years of writing care plans, I’m actually pretty good at. I guess it’s time to learn how to juggle one-handed.
RA demands that we become jugglers. The balls we juggle vary over time and from person to person. We juggle symptoms, energy, comorbidities, jobs, family, friends, medications, other therapies, and hopefully joy and fun.
How’s your juggling act going?
How often you do experience an unexpected boost of energy?