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Summary:

In this episode of Rheumer Has It, hosts Eileen and Cheryl sit down with rheumatologist Dr. Glenn Hazelwood to debunk common myths and misunderstandings about medications for treating rheumatic diseases like rheumatoid arthritis. The discussion addresses concerns about medication side effects, the importance of treating rheumatic diseases early, and the false stigma that using advanced treatments indicates more severe disease or personal failure. 

Dr. Hazelwood emphasizes the importance of balancing risks and benefits and provides insights into how modern treatments can significantly improve quality of life. The episode emphasizes the safety and necessity of these medications and highlights the benefits of starting treatment early to prevent long-term complications. 

This episode is particularly valuable for anyone newly diagnosed with rheumatoid arthritis who is navigating the complexities and concerns surrounding medication.

Episode at a glance:

  • Meet Rheumatologist & Researcher Dr. Glenn Hazelwood:
  • Busting Myths About Medications
  • Challenging Stigmas Around Advanced Treatments
  • Addressing Misconceptions About Medication Use

Medical disclaimer: 

All content found on Arthritis Life public channels (including Rheumer Has It) was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl Crow, OT created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Dr Glen Hazelwood

Glen Hazlewood is a rheumatologist and Associate Professor of Medicine at the University of Calgary. His research focuses on medication effectiveness and safety, patient preferences, and clinical practice guidelines in rheumatoid arthritis and other rheumatic diseases. He is the current Chair of the Guidelines Committee through the Canadian Rheumatology Association (CRA), and leads Canadian rheumatoid arthritis guidelines.

Eileen Davidson Bio

Eileen Davidson, also known as Chronic Eileen, is a disability and chronic illness advocate from Vancouver BC Canada. Living with a diagnosis of rheumatoid arthritis, she spends a large focus on volunteering and creating awareness around arthritis. With The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) Eileen is the Educational Media Assistant. Along with AiArthritis, Eileen is a member of the Arthritis Research Canada patient advisory board, and author with over 100 published articles.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript: 

[00:00:05] Eileen Davidson: Welcome to Rheumer Has It, the podcast that busts myths, highlights evidence and inspires hope living better with rheumatic diseases.

[00:00:13] Cheryl Crow: Through our plain language, interviews with experts, we offer actionable knowledge so you can thrive today.

[00:00:19] Eileen Davidson: My name is Eileen

[00:00:20] Cheryl Crow: and my name is Cheryl.

[00:00:22] Eileen Davidson: Join us as we bust myths.

[00:00:24] Cheryl Crow: And spotlight evidence.

[00:00:27] Eileen Davidson: Now, today I’m very excited to introduce rheumatologist Dr. Glenn Hazelwood, and I’ve been privileged to have had the opportunity to have been involved with some projects with Dr. Hazelwood and have seen him speak as he is a researcher with Arthritis Research Canada and being on the patient advisory board.

I, I’m very lucky to get to be exposed to fantastic rheumatologists and researchers like him. Now I will get him to explain his role, his how he got involved in rheumatology, and a little bit about himself and the work he does. Can you tell us about yourself, Dr. Hazelwood?

[00:01:04] Glen Hazelwood: Yeah, absolutely. Thank you both for inviting me today.

So I’m a rheumatologist in Calgary, did my medical training residency all in Calgary. Went to Toronto after my clinical training to do a research degree my PhD in research methods, clinical research methods. And then I’ve been back in Calgary since 2012 and work as a researcher here. I see patients with all sorts of rheumatic diseases, both in the hospital and in clinic.

A lot of the research I do is focused in rheumatoid arthritis. And focuses on a few things. One is guidelines. So I I’d lead the Canadian guidelines for rheumatoid arthritis. Very involved with those different research on, on medication effectiveness and safety patient preferences. And how do we, how do we sort of capture the patient in our guidelines and in treatment decisions we make.

So, thanks again for having me.

[00:02:08] Cheryl Crow: We’re so happy to have you and you’re just talking right up our alley, because today’s topic is busting myths about medications. And for me, as somebody who has been highly medicated for rheumatoid arthritis for 22 years, and which has enabled me to function, you know, dance and swim and run around with my son and I, I’m so grateful to these medications.

But, as somebody also active on social media, I see a lot of misinformation or fear mongering about them. So we’re really happy to have you here today to help bust some myths and also address, yes, there are potential side effects, but also helping patients kind of weigh those against the potential benefits of the medications.

So I’ll turn it over to Eileen to introduce our first myth to bust.

[00:03:01] Eileen Davidson: Yeah. And medications. I think when you live with, we both live with rheumatoid arthritis, I think there is a very complex need for them. I, the, the connection to medications and my diagnosis of rheumatoid arthritis is I’m considered severe.

I’ve had many medications failed me, but also my aunt was diagnosed with rheumatoid arthritis like 40 years prior to my diagnosis. And I always knew of rheumatoid arthritis because she was in a wheelchair and she couldn’t really walk. Her hands were severely deformed and she suffered, you know, obesity from steroids. She was treated with gold and she was diagnosed before the time of biologics.

So, having seen the advances in medication and also the devastating effects that rheumatoid arthritis can have when left untreated, and also feeling those effects when you have uncontrolled rheumatoid arthritis. I think medications is an incredibly important topic because there’s a lot of misinformation and myths, and I think.

The what first myth that we need to bust because if you go into any Facebook group or on social media, there’s always talk about rheumatic disease medications are dangerous and have extreme side effects. What would you say to somebody who believes that?

[00:04:27] Glen Hazelwood: Yeah, so I have these conversations all the time with with patients and I think what, what you are seeing in social media is what I hear in my clinic a lot.

I think the, and you both touched on a really key, I think point for people to consider when they’re having discussions about medications is the disease itself can be dangerous. And have side effects and have complications.

So, you know, rheumatoid arthritis for example, or the other types of autoimmune arthritis, one, they affect the joints. They cause joint swelling, inflammation, pain, loss of function. They also cause inflammation throughout the body as well, and we know very well the effects they have on fatigue, which is really common in people with active rheumatoid arthritis and other rheumatic diseases.

We know that they, people with, you know, poorly controlled rheumatoid arthritis have higher rates of heart disease. Of higher rates of blood clots. There’s, there’s all sorts of a, you know, adverse health effects that you have if you have untreated rheumatic diseases, rheumatoid arthritis, or any of the other rheumatic diseases.

So, so I think that’s one thing to consider. The other thing is, yes, I think it’s important to acknowledge, you know, any medication can have side effects. I tend to lump medication side effects into rare adverse events that can happen. These are things like, you know, some medications can cause low blood counts rarely.

Or you can get, you know, allergic reactions to them or rarely they can have issues with the liver. These are what I, what I call adverse events, which is kind of unexpected rare things that can happen really with any medication, right? We’re very careful in rheumatology to monitor for those. That might mean regular blood counts. You know, checking in with the patient with visits.

One of the medications we use hydroxychloroquine, you get your eyes examined once a year. So we’re those, the, the chance of having one of those is uncommon and we can reduce that risk as much, much as possible through monitoring.

The other kind of group of, of adverse effects or what I call side effects, which is things you might feel when you take the medication.

These can be you know, upset stomach fatigue, different, different, you know, you take the medication and you feel a side effect in some way. And almost always we have ways of dealing with those, whether it’s lowering the dose of the medication, taking the medication a different way, if it’s too much switching to a different medication as well.

So, yes. You know, our me every medication has side effects. So do rheumatic disease medications. They’re very safe. We’ve used them long term in hundreds of thousands of patients with most of the medications. And we’re very, we’re very good at minimizing any potential side effects or, you know, adverse events from them.

[00:07:48] Cheryl Crow: That’s really, really helpful. Thank you. That’s exactly what I remember my rheumatologist saying when I first started the medication.

The second myth I would love your opinion on is this one really gets me when people say, oh, these medications only mask the symptoms and don’t address the disease itself, or don’t address the root cause.

[00:08:09] Glen Hazelwood: Yeah, yeah, exactly. So I, I, that is a definite misconception or myth. Because even in the name of the medications, we call them disease modifying, anti rheumatic drugs, so they, they modify the disease. It’s, it’s in the name.

And how they do that is they, when, when you have an autoimmune disease, there’s different, you know, the immune system is incredibly complex and there’s a lot of different cells and proteins and, you know, cells and protein signaling cytokines, all of these things are active and can be active in different ways and for different diseases and the medications target those different pathways to shut down that inflammation.

So I think sometimes people, because we don’t cure the disease, think of it as complete cure, as in you never have the disease anymore and it’s gone. The medications don’t do that, but they treat the, the processes that are driving the inflammation that’s causing. Whether it’s the joints or, you know, lots of our diseases affect other organs throughout the body.

They absolutely affect those pathways to shut, you know, to, to stop the body from reacting against the joints or whatever tissues.

[00:09:32] Eileen Davidson: Thank you for walking us through that. That was very well explained. And yeah, I do find that the medications really do kind of explain what they do in the name. I like that you brought that up.

We’re moving on to now stigmas to challenge about the medications involved for rheumatic diseases. Now, what would you say to somebody who says that using advanced treatments like biologics means that your disease is severe?

[00:10:00] Glen Hazelwood: Yeah, I think, you know, there’s some, maybe some truth to that. The thing about rheumatic diseases is it’s really true that every, everybody’s different in some way how the disease behaves. For example, in rheumatoid arthritis, which joints it affects. Does it affect lots of joints or not as many joints?

Everybody is a little bit different in terms of how the disease behaves in them. And sometimes a medication that works for one person won’t work for another person. And I think it doesn’t necessarily mean the disease is more severe but it might just mean that it’s, the key part of the immune system that we need to target can be different between different people.

And so if we use one medication that works on one part of the immune system and it doesn’t work for someone it might just mean that in you or you know, in someone else, it’s a different part of the immune system that’s driving the disease.

So unfortunately, we’re not at the point where we have really good tests to tell us which medication will work, you know, a hundred percent in one individual versus another, that, that’s where we’d like to go. But just because you, you might respond to one medication and Cheryl would respond to a different medication, doesn’t mean your disease is more severe. It’s just different, I think is how I would, how I would conceptualize it.

[00:11:34] Cheryl Crow: That’s, that’s really helpful. There’s so many different myths and sigmas, someone asked me once, if I have to get an infusion, does that mean my case is more severe than somebody who has an oral tablet? And I never thought of that, but it’s like, no, actually, that doesn’t correlate necessarily, right? The method of delivery does not correlate to how severe also.

[00:11:55] Glen Hazelwood: Yeah. And the other thing when you take a medication, whether it’s a pill or an injection, there’s a whole complex pathway that needs to happen for that medication to work on the arthritis, and people can metabolize medications differently.

We know that it’s not as simple as, you know measuring your blood tests and picking the right medication because the medications, how your body processes the medications and metabolizes it can vary a lot from individual to individual.

[00:12:30] Cheryl Crow: Yeah, that makes a lot of sense.

This one may be really quick, but what would you say to somebody who says, taking medications means that you failed to manage the disease naturally and it’s a sign of weakness?

[00:12:43] Glen Hazelwood: Yeah. I think with autoimmune diseases, people didn’t do anything to get these, Right?

In the vast majority of people are otherwise healthy and they’re not doing, none of their lifestyle choices are, are causing them to get these diseases. There’s a big genetic component. There’s a big, big bad luck component that these diseases start. So you know, there’s really not, there’s nothing you can do to, you know, will away the disease or to – yes, you can, you know, employ healthy behaviors, you know, not smoking we know that smoking is actually one of the risk factors for rheumatoid arthritis, some of the other rheumatic diseases.

But there’s no, it’s not a, a flaw in a person for getting, getting these diseases. And similarly we know that, that once the conditions start, you know, the vast majority of people need medications to control them.

And the other thing I think is really important to keep in mind is the earlier we start medications, the earlier you take medications, the better the outcomes are long-term. And even for people who, you know, for some conditions we can sometimes get people into drug-free remissions.

So where you’re, you’re off medication, even if it’s for a period of time and your disease is controlled, the best chance you have to to get to that is to actually get the disease under control quickly. So that’s always, that’s always, I, I try to counter with, nobody wants to take a, a medication, right?

If we had a, a choice, but it’s that, that risk benefit. We want the medications to control the disease. We wanna control the disease as quickly as we can and as completely as we can. And that’s the best chance to, you know keeping you healthy, the best chance of getting into remission, staying into remission long term.

[00:14:48] Eileen Davidson: I think that is a very important message that you just brought up and really ties into our next topic, which is two very important misconceptions to correct. First, what would you say to somebody who says, medications just make you sicker?

[00:15:09] Glen Hazelwood: Yeah, I think that, that gets back to the, the issue that autoimmune diseases can make you, are making you sick, right?

Almost universally people have fatigue, if it’s affecting the joints, there’s pain. They’re not, the joints aren’t functioning as. As they were, the inflammation is, you know, going throughout the body with different diseases you can, they can affect the organs like, you know, lupus, other types of autoimmune diseases.

So, so that’s what we’re trying to control and medications is the tool we have that we have, you know, strong evidence for that works well to, to control the disease from making you sick.

And again, getting back to the medications. Yes, medications can have side effects, but in the vast, vast majority of, of people we can see, , and through monitoring and through working with people to adjust the medications find a medication that you’re not getting side effects from, and that’s controlling the, the disease.

So it’s really, it’s, it’s all about the risk benefit. Cheryl, you mentioned it in the introduction weighing the, the benefits of treatment versus the, the risks of treatment.

[00:16:32] Cheryl Crow: Yeah. I think that’s, that’s so important. I don’t know whether you’ve ever heard this phrase, but Dr. Christine Stamato, who’s a new nurse practitioner, she used to be the president of the Association of Rheumatology Professionals in the US..

She says, you know, when my patients are medication hesitant, I just tell ’em, “It’s like dating. It’s not a marriage or it’s not a tattoo.” And it, I think that that was such a refreshing perspective. Like, for me at least, i didn’t even know people were so scared to take methotrexate till I made an educational patient video about how to inject methotrexate, and I’m like, I’m so helpful. And everyone’s like, wait, aren’t you, aren’t you like throwing up and like feeling horrible ’cause you take methotrexate?

I was like, no, I’ve been taking this for 10 years. I, it, it works. And they’re like, anyway, so long story short, it’s, you don’t know until you try. So I think that’s a good perspective.

[00:17:19] Glen Hazelwood: That’s exact. Honestly, I have the same conversations for people who are really hesitant to, to start a medication.

The other thing is you can always stop it, yeah right? Like if you really, the only way you’re gonna know, the nice thing about our medications actually, as opposed to say, you know, a medication you take take for high cholesterol where you never feel any, any better from the medication, you will know whether the benefits of the medication are worth, worth it for you after you take it.

[00:17:53] Cheryl Crow: Yeah.

[00:17:53] Glen Hazelwood: So, so that’s really, and the vast majority of time it is and so that’s exactly right. That’s what I always say as well, is you can always stop the medication, you know, if it’s not working, if you are having side effects from it. And you’ll be able to tell after you take the medication, you know, for three months, say whether it’s working or not.

Yeah.

[00:18:20] Eileen Davidson: That’s definitely true and it is a shared decision between the patient and the rheumatologist and how the patient wants to treat the rheumatic disease too. They’re not just told, here’s a medication, you have to take it, and they’re only given one option there. There are options, the process of having to wait for them to see if they’re the one that works for you.

Granted, they don’t have immediate side effects that need to be stopped. It can be a daunting experience, but when you do find that medication that works without those minimal side effects, like in Cheryl’s case, methotrexate, it’s really rewarding. But I also do wanna bring up, me and Cheryl are by absolutely no means sponsored by pharma companies.

Yeah. We are patients who walk and talk the real life world of having to navigate the many different medications for rheumatic diseases and understand that untreated rheumatoid arthritis can be very devastating. Yeah. Yeah. And I’ll just, and me And me as well, so as well, just

[00:19:22] Glen Hazelwood: to put that out there.

[00:19:23] Cheryl Crow: And I will also say that I’ve been on methotrexate plus a biologic for 22 years. So my disease is also on the more severe side that requires both, like, biologic plus methotrexate. So I don’t wanna, and I’m on my fifth biologic in 22 years, so similar to Eileen, I have had the up and downs of like, you know, one medicine works really, really well for a number of years, and then my immune system’s like, wait a minute, I’m gonna thwart you and then I have to pivot.

[00:19:50] Glen Hazelwood: And, and I think the you know, sometimes it can be frustrating because there’s so many options and we don’t know which one is gonna work for you. There is, there can be a bit of that trial and error. I mean, the counter to that is, you know, Eileen, you mentioned I forget some relative was on gold shots back in the day. The counter to that is we have many options now for most of our diseases.

We have so many more treatments, so we can almost always find something that’s gonna work for, for someone without, you know, troublesome side effects where they, take it without, without having too many negative adverse events from the medication.

[00:20:34] Eileen Davidson: That is such an important topic to bring up and also really highlights that we need precision medicine which hopefully comes out in.

Alright. So, yeah. We’re gonna wrap up this very interesting and extremely important episode with one takeaway that you would like a listener to take away from this episode.

[00:21:04] Glen Hazelwood: I think the I think it’s being having knowledge about the risks of not treating when you’re thinking about what medications to take and I think that’s one – sometimes there can be a lot of focus on, oh, this medication has this side effect listed. That means I’m gonna get this side effect of the medication. Without trying to consider that, you know, it is all about the risk benefit balance, and we, we have, you know, many, many years of research and many studies from many different countries on these medications, very comfortable using them. They’re very safe. We have lots of options.

So, you know, when you’re trying to make that decision of, of what treatment to take and whether to, to start treatment really factor in the the, the harmful effects of disease is having on your body when you’re, when you’re making those decisions.

[00:22:05] Cheryl Crow: Yeah. That’s so helpful. Something that Dr. Frankl, Linea Frankl told me once too, that I thought was very convincing is that these medications are so safe and effective, that it’s actually unethical to run an unmedicated control group in a clinical trial, at least in the US you can’t have an unmedicated control group ’cause you’d be denying people a treatment that would slow down a progressive disease. Is that the same in Canada?

[00:22:31] Glen Hazelwood: A hundred percent. Yeah. That’s a really good point. And

[00:22:34] Cheryl Crow: that, and usually, yeah, human subjects review boards are very conservative, so they’re not gonna say that unless it’s extremely safe. Right?

[00:22:42] Glen Hazelwood: Yes. Yeah. And it’s always better to, to start treatment early.

Mm-hmm. You know, even if you’re hesitant about medications. You know, to take the medication early because there’s really that early window of opportunity where you have the best chance to, to prevent long-term complications. And then when things are going well, work with your rheumatologist to see what the, you know, to see if you can reduce down your medication to the minimal amount you need to keep things controlled.

[00:23:16] Cheryl Crow: So helpful. Well, thank you so much. If people want to connect with you or learn more maybe about your research, I know you’re not a lot on social media, but where, where can people connect with you?

[00:23:27] Glen Hazelwood: Yeah, I can be Googled arthritis Research Canada. If you go to that, website can’t remember the exact link, but Eileen would, would know it as well.

You can go to that and connect to me through there, through email, and I’m happy to yeah, happy to answer questions.

[00:23:44] Eileen Davidson: Thank you. Excellent. It’s arthritis research.ca, by the way. Yeah. Great website. And you can find so much about the all the amazing researchers and research going on at Arthritis Research Canada at that link.

Now, thank you so much for being here today, and thank you all for listening to another episode of Rheumer. Has it Join us next time as we bust another myth or highlight another stigma or a misconception.

[00:24:14] Cheryl Crow: Thanks so much. Bye. Thank you so much.

3 comments

  • Throughly enjoyed this information!! I thought of my Mom who suffered severely with Reaumatorid Disease. She was unfortunate to live in a time when biologic medication was not yet readily available! I have tried many medications throughout the years for my RA. I found that the Rituxin infusion works well for me so far! I don’t like taking pills so the infusion guarantees that I get the medication when I’m supposed to. Thanks to all 3 of you for your information you have shared!

    • Thank you so much for taking the time to share your experience, and for listening to our episode – I’m so glad you found it helpful and that your meds are currently working! Thanks again! – Cheryl