The "My Meds May Not Be Working Anymore" Panic

Last updated: July 2020

Anyone who suffers from RA is familiar with the way the disease is treated. We go through a trial and error period, sometimes taking years, until we find a medication that works well enough to be worth the effort. Rheumatoid Arthritis isn’t alone in this treatment protocol, but where our illness does differ is that there is no guarantee that the solution we find will last forever. In fact, most times it doesn’t and when you start to sense you may be reaching the end of the road with a certain drug, a very unique type of anxiety starts to set in – the “my meds might not be working anymore” panic.

Finally finding RA medication that worked

Like many others who suffer from RA, it took me a while to find something that gave me relief from my particularly aggressive form of the disease. Now, when I say “a while,” I mean it – somewhere in the ballpark of twenty-five years. That’s a quarter of a century.

My doctor, God bless him, never gave up trying and, after a particularly nasty bout of pneumonia and a two-month stay in the hospital, he recommended the medicine I’m currently on and it worked. It just worked, no strings. It was a minor miracle and I was thrilled to finally be getting some relief. I mean, I knew in the back of my mind that it would probably stop working someday but that was a tomorrow problem.

My medical conditions were under control

Fast forward to a few months ago when I finished up with chemo I was receiving for a lymphoma diagnosis and I was ready to get back to my life. RA under control, no cancer, no side effects, no problems. God, it was a welcoming feeling to reach that finish line. It had been a long hard crawl, but I had made it and came through with flying colors. It was an unequivocal win, and I suppose that should have made me suspicious because nothing with this illness is ever such a clear cut success.

The return of RA symptoms

About a month after the chemo ended I began to wake up with morning stiffness worse than I had in years. I chalked it up to the exercise I was doing to regain some of the muscle mass I lost with cancer. That worked for about a week and, when the stiffness kept getting worse, I thought maybe I was eating or drinking something that was messing with my system.

Trying to figure out why these symptoms returned

So, I revamped my diet and kept track of everything I was putting in my body for the next month or so. Unfortunately, no matter what I tried, I couldn’t seem to discover anything that was causing my symptoms. Then I thought maybe my injections weren’t being absorbed due to years of scar tissue build up in the injection sites. To counteract that possibility I began injecting into a new area, one I had never used before.

Has my RA medication stopped working?

That brings us to today. After a week or two of trying a new injection site, I’m still feeling the same symptoms – symptoms that are unmistakably indicative of an RA flare. Its been almost ten years since I felt like this, and I can tell you one thing – it’s terrifying. I’m not ashamed to admit I’m panicking just a little bit because at this point there can really only be one reason for my deteriorating condition – the medication that has let me live a normal life for a decade is starting to fail.

What will happen if this treatment stops working?

I want to cry every time I stop and think about the consequences of coming to the end of this particular treatment. Life before was awful – I could barely get out of bed some days and even the good days were nothing compared to a good day on meds that worked. I actually got to ride a bicycle last summer! That was something I’d never thought would be possible, and it was liberating. Now, though, as I sit here and write, the demon cousins of anxiety and disappointment are right behind me and I’m digging deep, running, running, running, to make sure they don’t catch me. All my joints are hurting, I’ve got that “low-grade fever ache,” and every time I move I wince in pain.

I hoped that the medication would've lasted longer

What makes all of this worse is that it has been so long since I’ve felt this way that I’d finally forgotten that almost all RA meds inevitably stop working. I had begun to believe, at long last, that against all odds my doctor and I had found the right key to my particular RA lock, and that all I had to worry about now was dealing with the damage the disease had already done. It’s as if the illness waited until I had the most hope, the most optimism, the most excitement for the future, and then said “Ok, time to bring the ceiling crashing down.” That’s RA though – it always hits you when it will do the most damage. It waits until you are strongest and then rips your heart out to show it to you before it stomps it into the ground.

Bracing myself for what is next

Here I am now, trying not to let the panic take hold. I keep telling myself that I’ll deal with whatever comes, as I always do, and that if I have to get back on the medication merry-go-round, yet again, so be it. I had almost ten good years – that’s more than many RA patients get in a lifetime. It was a gift and I hope I used it well, but it’s going to be difficult to say goodbye to that relatively care-free life. I just keep stopping to look up and say “God please no.”

I have a doctor’s appointment next week so that is D-day, and when we storm the beaches this time I hope we can pull out an unlikely win just like the real D-day heroes. Anyway, sorry no humor this time... I wasn’t feeling it? Next time, I promise. Talk soon.

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