Remission With Lupus: What It Looks Like

When you hear the word remission, a lot of times people think of cancer. Often being diagnosed with cancer means you go through a variety of treatments and procedures to kill the cancer—whether it’s radiation, chemo, surgery, or a combination of all. With cancer, remission means that the cancer—the foreigner invading your body—has been removed. 

When it comes to lupus, sometimes you do take the same chemo medications used to treat the cancer but there is no foreigner invading your body to remove. Your body is the attacker so you can’t just “remove” it. 

As of today, it’s been 14 years since I was diagnosed with lupus. And believe it or not, it’s only recently that I feel like I’ve entered remission.

Remission with lupus, at least for me, is learning how to live peacefully with my body.

It means I have a lot more good days than I have bad days.

Remission with lupus just means I have a lot more good days than I have bad days.

What Remission Looks Like For Me

I feel like I’m finally in a place that I can call my “new normal.” I’m able to hold a full-time job and still have the ability to do chores/errands, exercise routinely, and spend time with family and friends – the mundane things we sometimes take for granted.

Someone on the outside seeing those things, it’s easy to see why someone might get confused on what remission with lupus looks like. Yes, I’m the best I have in years and am able to do all those things, but that doesn’t mean it’s always easy sailing. For me, this is the reality of what remission looks like: 

It does not mean I am cured

I’m going to be blunt… lupus is forever. No matter what you do, you can’t just get rid of lupus because it’s your own body’s immune system getting out of control. And obviously, you can’t just remove your immune system. 

Going into remission doesn’t mean I’ve cured my lupus. It just means that for a little while, my body’s immune system is under control (and that looks different for everyone) and isn’t going crazy attacking itself. The lupus is still very much in my body, it’s just waiting patiently for an excuse to come out (e.g., stress, sunlight, etc.).

I am not flare-free

This is an important one to talk about. I always thought that once I entered “remission,” it would mean I was finally flare-free. I couldn’t have been more wrong. 

I’ve found that for me, being in remission just means that I have a lot more good days than I have bad days. 

It means I am able to live what I consider a normal life. I can have a full-time job, I’m able to exercise a few times a week, I have the energy to see my friends and family, I can do things I enjoy, and I can live my life the way I want. 
But this doesn’t mean that I don’t have flares—my flares are just not as extreme.

I still have bad days where my joints ache, where I have to sleep sitting up from inflammation in my chest or neck, days when I’m too exhausted to do anything other than lay down and rest.

The difference is that the flares aren’t as extreme and painful and I’m able to recover without the constant need of higher doses of medications like steroids (though every once in a while I do need help from them). Don’t forget to check out Prednisone: Friend or Foe?

I still take multiple medications daily

Again this is different from person to person. If you are in remission, you might or might not be off your medications. For me, I consider myself in remission even though I still take 5 different medications a day to help keep my lupus under control. 

This might seem like a lot but I’ve come a long way since my really bad days when I used to be on more medications and higher doses. I’d really like to be medication-free one day and for the last few years, I’ve been actively working with my doctors to see if I can wean off some of them (and so far I’ve weaned off of prednisone).

I do not know how long my remission will last

There is no way to know how long my remission (or yours) will last. Lupus affects each person differently so it makes sense that remission looks different for each person. For some people, remission might last a few months, for others, it can be years.

Remission looks different for everyone

It can’t be said enough, lupus affects each person differently and remission is no different. For me, remission means that I’m able to live a normal life except I still get the occasional small flare, I still have lupus symptoms like joint pain, fatigue, pleurisy, and skin lesions (just to name a few). I still take 5 different medications a day. I still have to sleep sitting up a few times a month from neck and back pain. For someone else, being in remission can look very different.

Keeping You In The Loop

How Do You Define Remission?
This is how I’ve chosen to define remission. Maybe some of you out there have another perspective on what remission is for you. Whether you feel the same or have another perspective on what remission means to you, I’d love to hear it! 

Leave a comment below or Contact Me.