Psoriatic Arthritis: When Your Dosing Schedule Dictates Your Life
When I was young, I looked at life within very clear chunks of time. In grade school, time revolved around holidays-Christmas break, summer vacation, and of course, my birthday. As I got older, life began to revolve more in terms of semesters, taking them one at a time in manageable chunks.
Things are looking quite a bit different now. These days I have to take life ten weeks at a time. My biologic’s dosing schedule dictates pretty much my entire life.
A new pattern with psoriatic arthritis
I’ve been living with psoriatic arthritis for years now and lo and behold, I’ve been forced to look at life within a new pattern. Gone are the days when my life revolved around holidays or school semesters, even now with kids of my own. Nope. Now my patterns are dictated by my medication dosing schedule.
I currently take the biologic medication Stelara, which has a 12-week dosing schedule. After doing a pretty good job tracking my fluctuating symptoms and flare patterns, I’ve noticed that I can get a generally reliable 10 weeks of time with “lessening symptoms.”
What a dosing schedule looks like
I say “lessening” because I’ve yet to find a medication that gets me more than a 40-50% overall improvement of my PsA symptoms. Which is still a little above the average improvement (in my experience). So while I’ve never really been “symptom-free,” those 10 weeks of symptom improvement have been a lifeline in a series of otherwise rocky years.
However, you may have noticed that my 10 weeks doesn’t line up very well with the original 12-week dosing schedule of Stelara. This leaves a solid two weeks where I just sit and watch my body get worse. Rashes pop up. Joints swell and fatigue forces canceled plans. I spend those two weeks counting down the days and hours before my insurance allows me to refill my Stelara.
There is no “one-size-fits-all” approach
This often leads me to wonder when we are going to start looking at patients as individuals? When will medical professionals and insurance companies realize that there is no “one-size-fits-all” approach to diagnosis, medication, and treatment options? It isn’t right that I and other PsA patients often find ourselves at the mercy of what our insurance companies deem to be “acceptable” to allow a refill.
Yes, I know the dosing schedules are created after a great deal of research and for many people, these schedules work really well. But there are also quite a few of us who fall outside the “norm range” for dosing. And for us, it can really impact our lives.
Do your plan your life around your dosing schedule?
Don’t get me wrong, I know how difficult it was to find a medication that would give me even the 10 weeks, so I hope I don’t sound ungrateful. I know, you are likely thinking, “Two weeks, what’s the big deal?” And in many ways, you are probably right to think that. After all, I know how lucky I am to have found something that at least somewhat works.
And yet at the same time, I have “STELARA DAY” in all caps throughout my calendar so that when I attempt to make plans, I know that I literally can’t put anything on the schedule for two weeks before my shot day. And then tack on another week after my shot day for fighting the flu-like symptoms caused by my medicine. But that’s a story for another day. So for now, all I can do to take life 10 weeks at a time.
Does anyone else plan their entire life around their dosing schedule? Does your dosing schedule dictate your life?
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?