Help! My Doctor says I’m in Remission – What Does It Really Mean for my Lupus?

This post is part of a new series where I give my two cents on some of the most commonly asked questions and concerns of lupus patients. Have a question or topic suggestion? Click here to contact me – you might see it posted on the blog!

I was officially diagnosed back in 2000. For years before that, my swollen joints, fatigue and pain was labeled as ‘juvenile arthritis”. While I was technically on an NSAID anti-inflammatory, it really did nothing to help my symptoms and I limped my way through high school (and art school, no less) with painful, marble-sized joints. Once I started prednisone, all those symptoms vanished and I was astounded by this miracle drug – I thought I’d get to live a normal life.

Now, 15+ years later, I’m dealing with multiple recurring fractures in both feet, osteopenia in my lower spine – and just last week, I managed to tear my plantar fascia,  while sitting on a bus.  Oh yeah and even typing this out, I can barely bend my right elbow, because the joint decided to swell up for absolutely no reason at all.

My point? I’m technically considered in remission.

Yep, the big “R” word. It’s the thing that every lupus patient longs to hear. The magic word that signals and end to the pain, the tiredness and maybe even our medication. Unfortunately kiddies, it’s not that simple.

What is remission anyway?

In my experience (yours will likely vary), I’ve had the term remission explained to me in a few ways. On one hand, I’ve been told it’s an absence of all lupus symptoms. You feel better, you function better, you start feeling like a human being again. In this sense, you may still have some mildly active lupus in your body, but everything is well controlled and you can largely go about your business.

The other explanation is almost the inverse of the above; your blood is free of signs of lupus, but you might still be experiencing symptoms that will need to be controlled in some other way.

How a patient experiences remission is going to rest on two things: the patient and the doctor. If a patient is feeling great, but has active lupus, the doctor might or might not label them “in remission” depending on the doctor’s goals and what else might be going on with the patient. As with everything else in lupus, it’s going to be a different journey for every patient.

But don’t party yet

I wish I could tell you that once you’ve hit remission, everything is perfect and peachy-keen. For some of you, it might be, in which case rock on with your bad selves. However, for many others, the damage caused by the lupus and the side-effects of the treatments can still cause you tons of problems – even years after you’ve been put in the “remission” box.

If you want to get technical about it, I was “in remission” for just shy of 2 years. Right up until the time they biopsied my failing kidneys, I was showing perfectly clean lupus bloodwork. When they found active lupus only inside my kidneys, my head just about exploded. If there’s a moral to that story, it’s don’t start skipping on your self-care just because your bloodwork has come back clean. Get tested regularly, keep taking any meds you might still be on and, most importantly, listen to your body.

Prednisone, is still a really common medicine and it’s side-effects are practically legend: bloating, the moon-face, weakening of the skin, weakening of the muscles and bones, all  of which can heavily impact your day-today life for months after you’ve stopped taking it. Side-effects are different for everyone, but my sampler platter has included vertigo, fractures and recently, fat pad atrophy (meaning I no longer have nice padded heels to walk on – weird right?). Since every person is a unique walking cocktail of chemicals, you might get side-effects you haven’t even heard of – or you might have nothing at all.

Define your remission

What does your remission look like? If you’ve been declared “in remission” but still can barely function, then it might be time to talk with your doctor. You should both be on the same page as to your goals and what ‘remission’ means in your individual case. Set a realistic goal for remission and talk about what steps you can start making to get there. Maybe you’ve been stable on your medication, but not where you want to be – should you change up your treatment? You doctor should give you a solid idea of the risks and potential rewards of changing your treatment and be able to give you options.

Until science coughs up a cure, remission is the goal for lupus patients. We all want to be as functional and symptom-free as we can be. So, what does your remission look like to you? If you’re already in remission, how is it working out? Let me know in the comments below!

7 thoughts on “Help! My Doctor says I’m in Remission – What Does It Really Mean for my Lupus?

  1. I’ve been trawling the net trying to work out this word ‘Remission’ which isn’t quite what I thought.
    I was diagnosed in 2014, after a couple of years of horrendous symtoms and a very bad reaction to immunosurpressents I gradually began to feel like me again. In my last visit to the Rheumatologist, the consultant told me the brilliant news I was in remission! Whoooooo. She told me that I didn’t need to see her again for 6 months. Great!
    The confusing thing about it was that a week later the pesky joint pain, rashes and chest pain started again. Don’t get me wrong, they were no way near as bad as before, just a tiresome all over ache like when your about to get the flu. I first thought – well I’m about to get the flu. However, these aches and pains come and go regularly leaving me thinking this is a lupus thing. But how as I’m in remission? Thank you for this post as it now all makes sense!

  2. Agreed @Lee. I rebelled and decided to stop taking my meds (I was going through some things) but, that was a big mistake. I wasn’t off them for long but, it was long enough. My doctor had a plan to start decreasing my meds slowly a year ago but, they are apprehensive about it because they don’t want me to have a flare.

  3. What happens when your doctor decides you are in remission and wants to go cold turkey on your lupus medications? Because I hear this from patients ALL the time! They end up with a terrible flare-thanks to being in “remission”.

    • Doctors can be a little too eager to patient off their meds – they know how toxic they can be. Maybe trying talking to them and explaining your concerns? You know your body better then they do. If you could work out a gradual taper schedule it could be a win-win for you both. However, if your doc’s ready to pull the plug no matter what you say, you can always go to another doctor and get another opinion. I think things work best when our doctors are on the same page as us.

    • I have never had a doctor tell me to go cold turkey on my meds for a remission. However I have done it myself. Big mistake! Don’t do it.

  4. I have had two remissions since I was dx’d in 1988. Felt so great! But both times I went outside and enjoyed the sunshine and did a lot of physical activities. And both times I put myself in very bad flares that nearly killed me. So please be careful. Remission does not mean you are cured.

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