PsA 102: What it Means to Be on an Effective Treatment Plan

In my last article, I took the time to break down and asked the question "What Is An Effective Treatment Plan?". I shared how my medicine is “technically” effective, or rather, I might be on an effective treatment plan, but I still have to manage a great deal of pain and fatigue.

Now I'd like to explore: Why is this concept so difficult for loved ones to understand?

What don't my loved ones understand?

One of the things I found to be the most difficult for my loved ones to understand is that treatment doesn't mean cured. Mostly because I don’t believe they have a frame of reference for being “partially better” while taking medicine.

If you’ve never had a chronic illness, then you will never understand how you can take prescribed medicine, follow the doctor’s advice, and still be “sick.” Let's break it down.

What do our psoriatic arthritis medications do?

Unfortunately, with psoriatic arthritis, we don’t take our medicine and do our exercises to “get better.” Rather, we do our best to manage our lives so that we don’t get worse. It’s a total mind scramble when you think of it that way.

But what individuals without psoriatic arthritis (PsA) seem to rarely understand is that just because a medicine is deemed by the medical community to be “effective,” it doesn’t mean that I am 100% free of my PsA pain and fatigue.

How does the word effective complicate that?

Quite the contrary actually. In fact, I believe the term should be changed from “effective” to perhaps the more vague and ambiguous phrase of “just not worse.” Because in my experience, “effective” is described by most people in the medical field as anything averaging from 20-30% improvement in my symptoms.

Because in what world (besides meteorology) is 20% of anything acceptable? So while yes, my symptoms are perhaps not worse, I certainly wouldn’t call it an “effective treatment.” If you do the simple math, and take a 20% improvement for example. That means that I still have the other 80% of my symptoms and disease progression to deal with on a daily basis. 80% of the swollen hands. And 80% of the fatigue and rashes.

How have my standards changed over the years?

If I accept this fact, then I’m not so disappointed anymore when I don’t see the symptom improvement that I had hoped for. In a bit of a twisted way, I’ve found it to be freeing. Over the years, I guess I’ve lowered the bar so many times for my expectations of treatment that at this point, I’ll just take anything.

I don’t feel as much like a failure when I have bad days or my medicine doesn’t magically give me back my old “pre-PsA” self. Perhaps it is just a mechanism of self-preservation.

Why wasn't it healthy to look at the efficacy?

Looking at the “effectiveness” of my medications has for far too long had me focusing on the negative. I was constantly thinking about how my medicine wasn’t working as well as I wanted it to. It hasn’t given me back as much time with my kids as I would like. And it certainly hasn’t “cured” me, no matter how much I wish it would.

I’ve even considered these thoughts to be selfish. There was a time when there were next to no options to manage PsA disease progression. There was a time when we didn’t have the ever-expanding options for treatment that we have today.

What have I learned?

After years of doing my best to manage my life with psoriatic arthritis, there are a few things I've learned - maybe effective medicine lessens the pain, maybe it controls a portion of the inflammation, but it doesn’t always stop the pain.

But what happens when we start to slide back from that meager 20-30%? Treatments go by and before you know it, you start thinking that you’ve dropped down to 15%. What then? Worse. Then you are faced with the same question all over again. What does it mean to be on an effective treatment plan?