When You're in Treatment Limbo for Your Lupus

I’ll be the first to admit that exhaustion is hitting me hard lately. Fevers, joint pain and swelling, insomnia, skin rashes, swollen lymph nodes, and persistent tachycardia with dysrhythmia have run me down. I have a “made for public” smile on my face, I’m managing to wear all of my hats and balance all of the spinning plates I’m required to carry, but my eyes will tell stories to the people who know what to look for. In private, I want to cry from the realization that I’m stuck— stuck reacting to symptoms rather than treating my disease. It’s frustrating.

Like many people with lupus and other autoimmune diseases, I’m in treatment limbo at the moment: no way forward, no way back, and little control over my symptoms. The hard truth is that treatments become less effective over time; our immune systems “learn” their way around the drugs, leaving us in need of a new plan – and we learn quickly that the options are pretty limited.

Autoimmune diseases are by nature challenging to treat, and there are few drug options specific to lupus. The side effects of the drugs that we do use to control our symptoms and disease activity (combinations of disease-modifying antirheumatic drugs, anti-inflammatories, steroids, and chemotherapy drugs) are often just as frustrating or debilitating as the disease activity itself.

All of the options have consequences.

So how do you deal with the frustration that comes with treatment setbacks? It’s a big weakness of mine. It’s why I feel like I’m stuck being reactive when all I want is to be proactive.

I had some hope over the summer. My specialists recommended a new drug that was specific to lupus. It was the first proactive treatment I’d had, and as a planner, it made me feel like we were finally going to make some headway. There was a mountain of insurance paperwork, then speciality pharmacy accounts, infusion scheduling, out-of-pocket payments totaling hundreds of dollars each, and finally the infusions themselves. I got three doses in, not yet enough to have a significant effect on my disease activity.

…and the side effects floored me.

I used to pride myself on my stubborn exterior. I’m all fight when it came to side effects – but this drug left me on my knees, literally. It came to the point where the side effects were more serious than the progression of the disease itself, so I was pulled off of the treatment. Back to square one. Back to the drawing table for a new plan. Back to being reactive.

I’ve been in treatment limbo for six months and counting. The frustration is real, and so is the notion that we don’t always have a visible light at the end of the symptom tunnel — that we usually end up enduring with little knowledge of when the flares will subside, and that is physically and emotionally painful. But it also takes strength.

So for those of you who are enduring treatment limbo or cycles of flares that seem relentless, know that you have a unique strength — one that allows you to find scraps of hope, and to overcome disappointment after disappointment. One that pushes you to keep going even when you don’t know when your symptoms will subside, or how challenging the side effects will be. Know that you’re really becoming masters of dealing with the unknown, and that you’re living with what many people would consider the unlivable.

I know that I’ll eventually feel better…I hope so, anyway. But right now I’m surviving, scraping, clawing, and screaming my way forward. It’s not pretty, and it’s not graceful in the least, but it’s a way forward. Don’t be ashamed to scrape your way forward, too. You don’t have to make it beautiful; you just have to make it work. Be vocal about what you need from your doctors and your loved ones, and don’t be afraid to fall down for awhile. But no matter what, keep going.

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Gettyimage by: BrianAJackso