#TalkOverRA -The Mission is to Achieve Remission, But What is Remission?

#TalkOverRA encourages Canadians living with Rheumatoid Arthritis to have more meaningful conversations with their health care providers to discuss resources, new treatment targets, and their own personal goals that can support better quality of life for Canadians living with RA.

Visit #TalkOverRA for a printable guide on how to speak to your rheumatologist about your goals today. 

What is remission though? To answer this difficult question I spoke with Rheumatologist Dr. Diane Lacaille. She is Scientific Director and Senior Scientist at Arthritis Research Canada, as well as a Professor, Division of Rheumatology, and Associate Head of Academic Affairs, Department of Medicine, at the University of British Columbia, in Vancouver. She holds the Mary Pack Chair in Rheumatology Research from UBC and The Arthritis Society of Canada (You can see me interviewing her and her daughter at the 2020 Canadian Rheumatology Conference here)

What is the difference between cured and remission?

Dr. Diane Laicalle explains the difference between the two “Let’s start with the definition of remission. The best way to think of remission is that the inflammation is gone. That is our definition. Your disease is well-controlled to the extent that the inflammation is gone. 

How does that differ from a cure? It differs in that if you are cured of a disease, yes, the disease is gone and it is not going to come back, whereas a remission means that a disease is so well-controlled that the inflammation is gone but the disease is not gone.

You have not been cured of your RA. It can come back. Or you might have a remission because of your treatment and if you stop the treatment, you may lose that remission. 

The thing you have to be careful about is that if you stop your treatment when you are in remission and your inflammation comes back, you may or may not be able to achieve the remission again. This is why we are very cautious about what we do with the treatment when people are in remission. Remission is our goal. Thankfully in 2020 it is a realistic goal for RA. Do we always achieve it? No. We like to. We try to. We don’t always achieve it.”

What happens if Rheumatoid Arthritis goes untreated?

Dr. Diane Lacaille “What we’ve learned from decades of research, decades ago when we didn’t have the same effective treatment that we have now, is that if we leave RA untreated, then there’s ongoing inflammation in the joints, it damages the joints, and that’s the reason why we are so adamant about wanting to get rid of inflammation. What used to happen to patients with RA is that the inflammation damaged the joints, it caused joint deformities, and once there’s joint damage, that’s irreversible, we can’t get that back with treatment – once joint deformities happen then people’s physical function is not the same. They lose their grip, ability to use their hands in an effective way, or they lose their ability to be able to walk, to be able to do even some simple activities that they were living.

We also saw that if people’s RA was not well treated, often they have to stop working. And if the inflammation is left unchecked, and there’s inflammation in the whole body, it doesn’t only affect the joints, it can affect other organs, like the eyes, lungs, heart, and it’s associated with other chronic conditions that are related to inflammation like heart disease… so people are at a greater risk of heart attacks, and they’re at risk of dying earlier than they otherwise would because of that unchecked inflammation.

So unchecked inflammation is not good. Now does that mean that this would happen to everybody? No, it doesn’t mean. It’s not like… I don’t want to have that fear factor of “oh if you don’t treat your RA, this is definitely going to happen to you.” But if you have a severe disease and you have unchecked inflammation, those are the things that could happen.”

Can Rheumatoid Arthritis affect the organs without joint pain or inflammation present?

Dr. Diane Lacaille “Yes. And it can do so when the joints are well controlled. So, often they’ll go in parallel – the joints flare, and these extra articular manifestations flare and often those will happen together. But you can get a flare up elsewhere, particularly the eyes. You know people can get a flare up in the eyes when their joints are good. Another thing that can happen with RA is inflammation in the lining around the heart that can give chest pain, and this can happen when the joints are well controlled. And so the same you can get inflammation in the lungs and it can cause people to get out of breath. So those things can happen even when the joints are well controlled.”

How do you tell if a patient is in remission? 

Dr. Diane Lacaille “From my perspective as a clinician, in order for me to call someone as being in remission, I have to find no swelling on the exam, because if you think inflammation has to be gone and there is swelling on the exam, then it means there is some degree of inflammation that is still there. That is not a true remission. If you have only a little bit of swelling, you might be fairly well-controlled but you are not in remission because there is swelling. I don’t think you can say you are in remission based on one visit. I can say you look like you are in remission today but remission has a concept of stability to it, we want a stable remission before we will be willing to start or recommend tapering medication.

There has to be no pain that I think is due to inflammation. By definition, if a disease is in remission, your disease will not damage your joints. There should be no radiographic progression and that is the reason why we aim for remission because when you have remission, there is no damage to the joint. There should  also be no radiographic progression..”

Do lifestyle changes like diet and exercise help achieve remission?

Dr. Diane Lacaille “I think it is all part of the management of arthritis. It is all together. I would say that it is rare to achieve remission with only lifestyle management, but similarly, you won’t necessarily achieve remission only with medication. You need both. It is a holistic approach to treatment. You have much better chances to achieve remission if you are taking the medications that control your disease and if you are managing the other aspects of your life, in terms of lifestyle, diet and exercise and self-care. 

Self-care is the big one. There is a big relationship between stress and flare-ups. Patients will frequently say “I flare when I overdo it. When I am not sleeping well. When I am doing too much and I am not taking care of my full self.” It is a holistic approach. Those things will increase the likelihood of your having  remission, but I would not encourage people to try to get to remission with those things alone.”

Does early intervention matter when it comes to achieving remission?

Dr. Diane Lacaille “This really depends on if your disease got caught early. So, the earlier we start treating, the higher our chances are of achieving a remission. This is the reason why we insist so much on early diagnosis and early treatment because we have our best chances of remission when we start treatment early.  If we wait longer we have a lower chance of remission. 

Even if I use the same medication and even if your disease is at the same level of disease activity, if I start the first medication within the first six weeks of diagnosis versus the first six months of diagnosis, we have a better chance of getting a remission if we start it earlier. This is really important for patients to know that. Sometimes they think it is just because their disease is worse.  

RA is like a big inflammation cascade inside your body that recruits a whole bunch of pathways and a whole bunch of inflammatory molecules, so the longer you let that brew inside and the more it becomes entrenched, the harder it becomes to stop it.”

If I’m in remission do I still need to take my medications?

Dr. Diane Lacaille “Yes, you do. You are in remission. It is not a cure. Maybe we can get away with less medication once we have achieved a stable remission. This is what we try to figure out as we taper medications – finding that sweet spot where you remain in remission and we find the lowest level of medication that can maintain that. 

If you don’t have a stable remission when we start tapering your medications we risk that the disease will come back and that you will lose that remission. If you lose that remission, it is not guaranteed that you are going to get it back. The key to tapering medications, once people are in remission, is to wait for a stable remission and to taper very, very gradually, a little bit at a time, waiting to see the effect and then tapering a little bit more. “

How can I be in remission if I’m still experiencing symptoms like fatigue and joint pain?

Dr. Diane Lacaille “There are other reasons why some people may have pain. People might have developed comorbidities like fibromyalgia, damage in their joints that is causing pain or they might also have OA. People may have pain for other reasons, maybe neuropathy or there may be mechanical reasons why they are having pain like alignment issues. You might have pain in your ankle because your arch has fallen and it puts strain on your ankle. It is not necessarily damage in the joint that is painful as there may be damage in another joint that is affecting the alignment in the joint where you are having the pain. There are a variety of reasons why you might still have pain even if you don’t have active inflammation when in remission or not. 

However, if you are still having pain, you need to bring this up to your rheum because you need to figure out together why you are having pain and see whether there is something that can be done to address this pain. You might benefit from some splints, braces, surgery. It doesn’t mean there is nothing that can be done because it is not inflammation. 

The other big one is fatigue. I would love to say that when you are in remission you will have no fatigue, but that is not necessarily true. Remission is not a cure. It does not mean your disease is 100% gone. 

You could also still be having some stiffness in the morning or with your mobility and you could still be having some fatigue even if you are in remission. Fatigue is the hardest thing to treat. There are some patients who remain fatigued. And again, the fatigue is multifactorial, you might also be fatigued for other reasons and not necessarily only inflammation. Depression, anxiety and Fibromyalgia are other big ones or if you are iron deficient, you might be anemic which also might cause you to be fatigued. There are so many things that can cause fatigue that it really needs to be looked at independently and all the possible causes of fatigue need to be looked at.”

How long does remission last? What are some reasons someone goes out of remission?

Dr. Diane Lacaille “Remission could last forever but it might not. That’s why it is called a remission – because the disease may come back or you might need to adjust your medications to maintain that remission.

For me, the key thing with remission, I tell patients, “you need to really listen to your body and if you want to maintain remission, you need to be in tune with your body and you need to not ignore symptoms and when you are sensing things are changing and you are starting to lose your remission, don’t wait too long.They are a little warning signal for you that your disease might be starting to get out of control. You want to react to that early on. As soon as you start to notice that you are more stiff in the morning or that you have a little bit more pain, you don’t want to wait until you see the swollen joints and the elevated inflammation. 

Whatever can cause a flare or can cause your disease to be less well-controlled can cause you to get out of remission. So it could be things like stress, infection, trauma,  when you’re not able to do your self-care, if you’re not sleeping well, or when you’re over tasked.

And then, you know, sometimes that’s also the disease. So it’s nice to know and identify what are triggers, and often people can identify triggers but people also have to realize that sometimes it’s just the disease has the mind of its own and the disease may evolve and may change, so don’t always be hard on yourself and blame yourself when your disease get out of control. I mean it’s nice to sense that you have control, and you can make a difference, and certainly there’s a number of things within your control that can help you remain in remission or close to, but sometimes it can also just happen on its own because that’s the disease. “

How Can Patients Become Their Own Advocates Today?

#TalkOverRA has created a printable PDF to help guide you get the conversation started with your rheumatologist about your treatment goal. Visit the #TalkOverRA website to find the printable PDF and get talking to your rheumatologist today. 

Are you ready to #TalkOverYourRA?

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