#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.
On how and when to speak to your rheumatologist, 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.
How often should I see my rheumatologist for a routine check up?
Dr. Lacaille breaks it down “Really depends on the situation, there is no standard to frequency, but in general, if we sort of try to make general guidelines, everybody should see their rheumatologist at least once a year – even if you are in remission, everything has been stable, and there’s no change to their medications, the very minimum once a year. If your disease is stable and you’re doing well, then usually about once every six months, and if your disease is not stable and you’re changing your medications, it should be once every three months to four months.
I think it is important that patients know that although we have long wait-times and we have busy practices, rheumatologists want to make sure that they are seeing patients with rheumatoid arthritis and other inflammatory arthritis in a timely fashion and that if patients have uncontrolled disease, we do not want our patients to wait. If you have an appointment booked in six months and things have changed and your disease is no longer well-controlled, we don’t want you to wait six months to come and see us and then find out when we see you six months later that things have been bad for four months. A change in pattern of your symptoms that suggest that your disease is not as well controlled as before. If you are still having symptoms after a week it’s okay, but if you’re three weeks later and you’re still having symptoms.”
When should patients be on the lookout for contacting their rheumatologist?
Diane suggests “If things are really not well-controlled, that’s when you need to contact your rheumatologist for an early appointment. A way to tell things are not well is if there is swelling. We have very little tolerance for swelling. We don’t like swollen joints that are persistently swollen because that’s when there can be damage to the joints. One manifestation of rheumatoid arthritis outside of your joints, and that’s when it’s hard because you may not know what those are. Let’s remember that RA is systemic autoimmune disease, so if you have a flare-up in your organs including the eyes, I want to know.
So any swelling, symptoms that persist, especially increased pain or fatigue and when the symptoms are interfering with your ability to do what you need to do. If you are starting to struggle at work, with taking care of your family, with doing what you need to do, whatever those things are, and it’s not just a little blip, a little something temporary like a week or so, if it’s starting to last weeks, that’s when you need to contact your rheumatologist. Another reason to contact your rheumatologist if you suspect you have a moderate or severe infection of some kind. “
What are some side effects to be on the lookout for to bring up to your rheumatologist?
When you have new symptoms that are unusual for you, you should bring them up at your next rheumatologist appointment because you don’t know if they could be side-effects of your medications.
If you have a new symptom and you don’t know if it’s a side-effect, I would say go to your family doctor first. If your GP really doesn’t know what this is, and this is persisting, then it might be worthwhile to contact your rheumatologist and discuss it at your next appointment
Patients often ask me that “I don’t know. Should I be telling you about this because I don’t know if this is a side-effect of my medication? But I think it’s a good idea to bring it up if it’s unusual and if it hasn’t been explained by something else by your family doctor. And I think for side-effects, I would say your first go-to is not your rheumatologist, unless you know it’s a side-effect of the medication, then you should contact your rheumatologist outside of your office. If your rheumatologist had discussed with you that you could potentially get this, this, this side-effect and you are getting one of those, then you should contact your rheumatologist.
I’m in a flare, I can’t see my rheumatologist for a while, can my family doctor help in the meantime?
Could go see your family doctor because they may have ideas of things that you could do in the meantime until you see your rheumatologist. Also, depending on your doctor and your rheum, often when we dictate back to the family doctor and sometimes will give guidance on what can be done in between if things are not well-controlled. I might tell the GP “she’s not responding well to this. You can increase the dose of their medication until this goes.” Depending on the shared-care model that we have with the family doctor, there might be some options that have been described by the rheumatologist that your family doctor would know what to do in between.
What should I do if I suspect I have an infection?
Dr. Diane Lacaille breaks it down “Infection really depends on what your medication is. Some medications that we use to treat RA, although they interfere with the auto-immune reaction that causes the symptoms, they don’t suppress the immune system per se. It’s important to ask your rheumatologist if your medication needs to be stopped for infection. You don’t have to worry if you have an infection. You don’t need to stop these medications if you have an infection.
Otherwise, if you have an infection and you are on a medication that suppresses the immune system, it depends on the severity of the infection. If it is a severe infection then you want to hold your medication while you are treating the infection. This will give your immune system the chance to fight off the infection. If it’s a mild infection that is easily controlled, like for example, you have mild urinary tract infection and you take your first dose of your antibiotic and the symptoms go away, you don’t need to stop your arthritis medication.
Or, you have a minor cold, you don’t need to hold your medication. But if you have a severe flu and you’re in bed and missing work and you are really sick, then yes, you should skip your arthritis medication if your rheumatologist suggests.
So, generally, I say that if you are needing antibiotic treatment, unless it is just a mild urinary tract infection (UTI), or the symptoms are not going away easily with the antibiotics, then you might want to hold your disease modifying agent or your biologic – definitely if you are admitted to hospital.
I would say things like pelvic infections, and infections inside the body that are more severe infections, you have to hold. But the ones like mild UTI and some mild sinus infections, may or may not need to be held. An infection to the kidney, inside your pelvis, pneumonia, you would hold. The more serious infections you would hold. A skin infection that goes down right away when you start your antibiotic is okay. But if it starts spreading it is not. It is all about the seriousness of the infection. Any serious infection or any infection that doesn’t respond to antibiotics you would hold.
I don’t necessarily want to hold off the biologic or the disease modifying agent when they get an infection because you have to weigh the risk of not controlling the disease versus the risk of the infection. If you are not sure, contact your rheum and sometimes you can just leave a message. It doesn’t mean you need to see your rheum or talk to your rheum. Depending on what the system is, you can send in an email that describes the situation and says “I have a UTI and I just started antibiotics. I’m already feeling better. Do I need to stop?” Well, the answer to that is no. but if “I have a bad respiratory infection. I’m coughing a lot. I’m out of breath. I’m on an antibiotic. Should I be stopping my medication Generally, if your disease is well-controlled, I would say “yes, you would stop it.” However, if you have severe disease or your arthritis is not well-controlled and you know this is going to be a big flare, then it becomes a matter of weighing risks and benefits.”
How common is anxiety and depression in people with rheumatoid arthritis?
Diane notes “It has been recognized in recent years that anxiety and depression is definitely more prominent in patients with RA. Patients with rheumatoid arthritis (RA) have higher rates of anxiety and depression, compared to the general population. Depression, in particular, has been linked to increased RA symptoms, such as fatigue, diminished response to treatment, and greater disability – revealing a large gap in patient care.
We don’t know exactly what is the mechanism by which people have increased anxiety and depression. I think it is multifactorial. There is a lot at play. For depression, people with RA or any arthritis, they are dealing with a lot of losses and it really destabilizes your regular coping mechanisms and your way of dealing with life. Those are all the kinds of life-stressors that can cause depression. We think there may be a link between inflammation levels and depression but it is not totally clear. We know that when people’s disease is more active, they have more depression, but is that a direct cause and effect, or is it a correlation. It is hard to tell.
The other big factor there is sleep and pain. Pain, fatigue, and depression is a big triangle. If you sleep- deprive people, their depression gets worse, so you can precipitate depression, and if you are not sleeping well because of your arthritis because you are having pain at night, that is going to affect depression. Similarly, the more pain people have, the more depression they have. If you improve the pain, the depression improves, but also the more depression you have, the more pain you have. It’s a two-directional arrow. You have to address both independently and that’s a very important message. Although they are related, you have to address them independently because they both have their own things that feed into it.
Research has recognized that depression is often under diagnosed in patients with arthritis because a lot of the symptoms often don’t get recognized and get attributed to arthritis. So some of the symptoms of depression are that you aren’t sleeping well, you’re more tired – patients will think “Well, that’s just my arthritis.” Or you are not enjoying things because you are in pain and again you think it’s your arthritis. It is often under-diagnosed. So, where your rheumatologist can be helpful is in recognizing “should we be more worried about depression here or can all of this be explained by the arthritis?”
Generally, most rheumatologists are not comfortable prescribing anti-depressants. I would say very few would prescribe themselves. Partly because if you start prescribing an anti-depressant, you need to follow the response to the anti-depressant and adjust the dosing etcetera. It would be better for your family doctor to be prescribing your anti-depressants.
There is also a lot of counselling around coping with having arthritis and how this impacts your daily life. People like social workers, counsellors or a psychologist can be extremely helpful. It’s not just about prescribing antidepressants, there is the whole counselling side of this and the non- pharmacological treatment of depression that is very important. That is something your rheum or family doctor can refer you to. There are also good online resources for depression. More and more now there are online modules to deal with depression that are available. “
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.
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Next part of the #TalkOverRA blog post series to help my Rheum-Mates have more meaningful conversations:#TalkOverRa- The Mission is to Achieve Remission, But What is Remission?