A few hours ago, I spoke with my rheumatologist about this nasty flare that I can’t seem to kick. We agreed on the cause, my father’s death recently, but we’re at a loss as to what we could actually do about it.
My pain management doctor had me do a course of steroids which, for the first time ever, made no difference. My allergies and asthma were fantastically controlled but that was it. My joints remained swollen, the pain continued to be intense, my temperature still rose, and my fatigue was just as debilitating. My rheumatologist agreed that I had taken a high enough dose where I should have felt and seen a difference.
We also agreed that it was too soon to throw in the towel with Simponi Aria infusions. Having my last infusion the day before my father’s funeral wasn’t a bad idea as I had thought. My rheumatologist said that it would have done something regardless of the state I was in emotionally. But alas, it did not.
I’m going to proceed with my next scheduled infusion, the first week of January. If that doesn’t work, it will be time to consider Remicade.
So if I can’t take prednisone again and I’m not ready to switch biologics just yet, what can I do? Not much. I’m going to inject the maximum of methotrexate this weekend (going from .8ml to 1ml). I’m going to try my best to rest- hopefully with my doctor ordering me to to take it easy, I’ll feel a little less guilty about doing so. I’m going to continue to take pain meds all day, every day, and maybe get a joint or two injected at my next pain management appointment.
Most would have been disappointed after having a similar conversation with their doctor, but I wasn’t. I felt validated- my doctor trusted me to share my current health status accurately without an in person visit. She told me I was doing the right things and gave me hope that I would be on the path to feeling better soon.
If you’re a provider reading this, please know that as patients we know you can’t fix everything, every time. But just hearing us out, telling us that we’re doing a good job, is sometimes enough to encourage us to keep up the fight.