RA, Chronic Illness & Medication - When the "Cure" Is Barely One at All
Medication. For most people who have an illness, medication is a welcome remedy and a source of hope. For people with rheumatoid arthritis and other chronic illnesses, though, that’s not the case – even in the best of scenarios. Medication for people with chronic illness is like playing poker with the mob – even if you win, you sure as hell ain’t walking out unscathed. And probably, your knees will hurt afterward.
The trial and error approach in treating RA
Anyone who has lived with RA or another chronic disease for a while knows the medication game and how to play it. For those who don’t though, let’s break it down. Despite all of the medical advances and amazing, genius-level researchers who work in the pharmaceutical industry, the best method they have come up with to find meds that work for chronic illness patients is trial and error!
That’s right, you heard me correctly: the accepted treatment methodology for rheumatoid arthritis, a disease which disables millions and has been around for ages, is the same system that people use to find the right shoe size! Except, the only difference is chronic illness patients don’t have one of those fancy, foot-shaped, metal-measuring things that you just can’t resist playing with at the shoe store.
Side note: when I pull out my dumpster-fire shaped feet at the shoe store and the clerk pulls out the measuring tool, it usually ends in one of us in tears. Rarely me.
Efficacy of RA medications
Trial and error, the least scientific method of determining things, is the best that rheumatoid arthritis and chronic illness patients can expect when trying to find a medication that “works.” Now, you’ll notice the quotes around that word “works” because, yet again, chronic illness patients get boned - this time in the efficacy department.
If a patient like me does end up finding a medicine that works, it always comes with caveats. One of those exceptions is that on a day-to-day basis the meds won’t show up and work with the same efficacy. Yeah. Soak that in, folks. The best RA patients and others with chronic illness can shoot for is that their meds will work with the same reliability as a man-bunned millennial barista at a self-serve coffee house. Unfortunately for us, though, we can’t have our parents call our illness and tell it our medicine isn’t coming in today.
Medications that lose effectiveness over time
Another caveat is the “18-month time limit.” Many patients who have been living with RA and chronic illness for a long time know this time limit well. It’s the period after which chronic illness meds start to lose their effectiveness. Yup, just like meeting your wife on Tinder, things start to get a bit dicey after a year-and-a-half.
Will it still work? Somewhat, but the fuse has been lit. And once it blows up and stops working, it’s done.
Re-trying a medication may not be an option
Also, as a fun little kicker to make sure RA and chronic illness patients are especially screwed, you can almost never go back and re-try a med that has stopped working. It’s part of the reason people like me are so reticent to mess with a treatment regimen that is working.
We are absolutely terrified that if the apple cart gets upset somehow – be it surgery or the flu - the meds will have to be put on pause, and they may never regain their usefulness. It’s happened to so many of us and there are only so many different medications available.
The RA disease experience varies
Why is it like this, you may ask? Well, without getting thick into the weeds of the immune system’s molecules and stuff like tumor necrosis factor, interleukin blockers, Janus kinase inhibitors, etc., it’s just easier to say that two patients with the exact same chronic illness, like RA, can have their immune system be broken in two totally different ways.
RA may impact different parts of the immune system
For instance, after years of trial and error, it looks like my RA may be caused mainly by an issue with my interleukin-1 molecule. A friend of mine who has RA, though, thinks hers is most likely being caused by her TNF molecules. Unfortunately, there is currently no way to test which part of a patient’s immune system is malfunctioning without seeing if the medication designed for that specific molecule helps.
TL;DR: Chronic illnesses and autoimmune diseases with the same exact symptoms can be caused by hundreds of different molecules in the body with no way to tell who the culprit is.
It's not all bad news
After reading all of this you are probably thinking that it’s starting to sound like doctors are just guessing in the dark. Well, you are not completely wrong, but it is not all bad news. More and more, rheumatologists and other chronic illness doctors are finding ways to shorten the trial period for different drugs.
Also, they are combining biologics with meds that blast the entire immune system at once, which results in a measure of relief for the patient. As anyone who lives with the debilitating pain of RA can tell you, sometimes a little relief can be more welcome than a barf bag on a looping roller coaster. It smells better too.
This is not to discourage RA treatment
Chronic illness and RA are the only conditions where the “remedy” we accept – nay, shoot for, is a half-assed solution at best. We are told from day one that a 60 to 70 percent relief of symptoms, on a good day, is considered a total win and, if we can achieve that level of relief more than half the time, then we will be categorized as “under control.”
Relief from RA pain and joint damage
Yeah, it’s quite a thing to wrap your head around, and yet another way that RA and chronic illness pulls the rug out from under you. All in all, though, this shouldn’t discourage you from treatment, in fact, the opposite. Any relief from our pain and damage is worth any distance we have to go to get it. After 30+ years, take my word on that. Ok, time to order a double-shot latte from this barista who is barely here. I said whole milk, Trevor. Talk soon.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?