Medical Jargon Demystified

Have you ever left your rheumatologist's office feeling like they were speaking an entirely different language? You're not alone. Medical terminology can be overwhelming, especially when you're newly diagnosed with rheumatoid arthritis and trying to make sense of your new reality.

This episode brings together a remarkable panel of experts who offer something truly unique – they're not just healthcare professionals who treat RA, they live with it themselves. Dr. Saimun Singla, an integrative pediatric rheumatologist, shares how his own RA diagnosis shaped his holistic approach to patient care, while Stefanie Remsen (known online as the "Rheumatoid Arthritis Coach") brings her perspective as both a nurse practitioner and someone who's navigated RA for over a decade.

Together, they break down confusing terms like DMARDs, biologics, and JAK inhibitors in simple, relatable language. You'll learn why your doctor might recommend one treatment over another, what "seronegative" actually means, and how to interpret those mystifying lab results. The panel explains the infamous "spoon theory" of energy management and tackles the often misunderstood concept of remission – is it really possible, and what does it look like?

Beyond just clarifying terminology, our guests offer practical advice on communicating with your healthcare team, including how to approach research you've done without creating tension. They emphasize that while medications play a crucial role, factors like diet, stress management, and sleep are equally important parts of the treatment puzzle that often go undiscussed in short medical appointments.

Whether you're newly diagnosed or have been living with RA for years, this episode will empower you with knowledge to better navigate your healthcare journey. Subscribe now and join our community of Spoonie Sisters who understand what you're going through.

Stef: https://www.instagram.com/rheumatoidarthritiscoach?igsh=NWJqYTFhMDJzMjd6

Dr. Saimun Singla: https://www.instagram.com/rheum.to.grow.tx?igsh=dWs1Zj

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Chapters

• 0:16 Episode Introduction and Guest Introductions
• 8:36 Personal Journeys with Rheumatoid Arthritis
• 15:54 Autoimmune and Integrative Approaches Explained
• 21:41 Understanding DMARDs and Treatment Options
• 27:52 Biologics, Infusions, and Insurance Challenges
• 37:41 Flares, JAK Inhibitors, and Progressive Disease
• 42:27 Patient-Doctor Communication and Research
• 49:07 Explaining Seronegative RA and Inflammation Markers

Transcript

Speaker 1: 0:08

Welcome back to my Spoonie Sisters. Today's episode is extra special because we are unpacking the medical jargon and confusing terms that can leave anyone newly diagnosed with rheumatoid arthritis or anything similar feeling overwhelmed. We're joined by two incredible guests who not only treat patients but also live with RA themselves. We have Dr Simon Singla, an integrative pediatric rheumatologist who blends traditional medicine and holistic approaches. We also have Stephanie Remsen, a nurse practitioner passionate about empowering patients with RA, and, of course, my guest co-host of the day, angelique Ingram. Hello, hello. I am so excited to have the three of you in this room with me. We're excited to be here, hello, everyone. Together we are breaking down those head-scratching words and phrases your doctor might use. Think things like biologic, dmars, flares and so much more so you can feel informed and empowered on your journey. So let's dive in and demystify the language. All right, are you guys ready for this? Yes, yes, stephanie, do you mind going first and telling us a little bit about your background?

Speaker 2: 1:17

Sure, my name is Stephanie. I'm known online as the Rheumatoid Arthritis Coach. I'm also a nurse practitioner in Las Vegas, Nevada. I was diagnosed with rheumatoid arthritis after the birth of my first son, who is now 11. And at the time, I had already been a nurse practitioner for nearly a decade. I was not only devastated excuse me, devastated by my diagnosis, but there were literally no resources available when I was diagnosed. I was so disappointed as a healthcare professional that right then and there, I decided that I was going to be a part of the community and create support in any way, and at that time there wasn't social media like it is. So I had an in-person support group and we've talked about how that has morphed and grown and become something really beautiful. That's my story in a nutshell.

Speaker 1: 2:06

How has your personal experience shaped the way you approach patient care?

Speaker 2: 2:12

I think I say what people are thinking more. Now I'm probably too straightforward, but I just say it Like do you think you're going to, you know, have another child soon? You have to have this hard conversation, or, you know, maybe you can't play football anymore, maybe we have to find you a different hobby? And although it is crass and very straightforward and blunt, sometimes these things need to be said, you know. And so I think that that's what I wished people had done with me instead of. I think some people are kind of a little too gentle and too soft sometimes, and I know that that's bold and different from anybody else's answer, but I think that that's what makes me different.

Speaker 1: 2:54

So'm going to. Can you share a bit about your journey, not just as a healthcare provider, but also a woman living with?

Speaker 3: 2:59

RA? Yeah, no, definitely. I was diagnosed with RA in my fingers almost 10 years ago now, so this was after the birth of my second child, and I was straight out of fellowship at the time into like rheumatology world, right, like you're a grown-up rheumatologist at this point. So I'm thinking the pain and fatigue I'm having in my fingers is anything but RA. I'm like, oh it's, I just had a baby. Oh, it's the fluid, it's the breastfeeding, it's the being tired all the time and stress, and it took like six months to finally get to a rheumatologist who's like this is RA.

Speaker 3: 3:33

And so for me it was more like denial, I think, was the beginning part of my journey, and then somewhere in the back of my head I also thought that I'm going to start this medication and everything is going to be fixed, everything is going to be all good, we're good, and it was far from that.

Speaker 3: 3:48

It took me like nine different biologics to finally get to where I am, and so I wish someone had told me kind of like to your point, stephanie that it's not a one and done course. Ideally, we want everyone to have a simple course, but, to be real, it's like a roller coaster and a lot of it is, unfortunately, trial and error. Even though we live in the century with the science that we have, we're just not there yet to say, oh, you look like this, your labs look like this, you should be on this medicine. It's just we're not there yet. So it took me a while to kind of understand the nuances of diagnosis and treatment and what it really meant for me as a person, not from the physician side, but what my journey would look like was quite unclear and I had to kind of figure that out on my own, bumbling around essentially, simon, how has your personal experience shaped the way you approach patient care?

Speaker 3: 4:37

I think, like what Stephanie said, definitely bringing up the uncomfortable parts of, hey, we're going to try this medication, it might not be the right one, we're not going to be married to it if it's not the right one. So I kind of paint the picture of expectations versus reality type of thing. I want them to know both ends of the spectrum. So this is what my hope is, this is what may happen and this is what we might need to do. So I give them hope but at the same time, realism, I guess, in terms of we might have to pivot, and that's okay.

Speaker 3: 5:08

You might have pain, even though your disease is completely quiet, and that's okay because we are going to figure out other things that might be able to help you. And that's kind of where my the whole reason I went down the integrative fellowship pathway was there's got to be other stuff to be able to treat you know RA and to be able to cope with this. So things people weren't talking about in clinic, like how I'm eating, how stress is affecting my disease, what about sleep, what about balancing, like work and life and kids and stuff, so that was such a bigger part of my life and the medication was like this much of my life. So I think I've kind of approached it to be more holistic on purpose, because a lot of people use the word holistic in many different ways or definitions. But for me it's really like taking a 360 view of your life and figuring out okay, you're having pain, your disease is quiet. Is anything else kind of contributing to that, and what else can we do besides medications to help your pain or help your stress?

Speaker 1: 6:00

or anxiety, things like that. I love what both of you had to say. I feel like when you go into the doctor and find out you have RA, you really expect that one and done, kind of like you said, simon, you expect, okay, here's the medication, and I felt that I was going to be healed, I was going to have my life back, and it doesn't work that way. I went through biologic after biologic. Also, angelique, did you feel that way too? You know what?

Speaker 4: 6:27

I did not, because when I was, I was more recently diagnosed with RA. My journey started when I was diagnosed with dermatomyositis 22 years ago and that was when everything fell apart for me. But when I became stable in that disease again, I had remission for, you know, 22 years, until recently, when I was diagnosed with rheumatoid arthritis and Sjogren's syndrome, I knew it wasn't a one and done. I knew that there wasn't a one and done. I knew that there wasn't going to be a treatment. I knew then that it takes a whole lot more to, as Dr Singel was saying, it's about diet, it's about your daily practices. I went into mindfulness when I was diagnosed with myositis and that has been a huge impact. So I could definitely relate to more of the holistic side and looking at myself as a whole rather than, you know, thinking that a treatment is going to cure me, although I might say my bone marrow stem cell treatment was very impactful, very impactful with my RA.

Speaker 1: 7:33

Part of me wonders. I think we were well, simon. You might be younger than the rest of us, I think, but being an 80s kid, I think I grew up in a generation where we kind of thought we went to the doctor, something was prescribed and you get better. And I looked at my RA like that, how I'm like oh you silly girl. What were you thinking? As women that have married and had children and all the things, I don't think we get enough credit for how much we put ourselves through emotionally, mentally and physically. Women, we're like the glue of the family and we tend to feel like we have to do all the things and it creates a big toll, and so part of me is watching the cycle with so many women and wondering is there a connection there?

Speaker 3: 8:28

I don't know if anyone feels the wrong way as well and cause a flare, because the immune system and nervous system are very closely intertwined, from what I've observed, which is why stress is such a known trigger for autoimmune conditions.

Speaker 1: 8:40

I think you phrased it way better than I did.

Speaker 2: 8:44

Nobody ever told me that this was going to be the magic pill or the magic treatment. Nobody ever said I'm married to it and I got to stay on it. So I think my care team was a little bit more blunt.

Speaker 1: 8:54

That's good being. As an 80s kid, I had that mentality of you go to the doctor, you get the thing, you get better. And so I looked at my RA that way and it's not like that. There's so much that you have to do. It's not just's the thing.

Speaker 3: 9:10

I'm like why hasn't anyone said this Clearly from the beginning? To be honest, real talk. Why doesn't anyone say that there's so much more than just taking the medications, showing up for your labs every three, four months being?

Speaker 4: 9:27

for me, for instance, when I was diagnosed with my myositis, there was a traumatic event that happened a year and a half prior in my life and you know, those kinds of events can really trigger someone's immune system, of course, and it can be very, you know, impactful and powerful, because you know a lot of our physicians. They don't go into that and of course you know what's happening in your life, like you say, what are you eating, what kind of? What's your, what's your routine? Look like, you know what are you doing, and I think that's really important. You know when you know we see our physicians and doctors that we talk about these things, but of course you know it's really hard because they're not actually trained in those spectrums. Right, they're taught science and that's all right.

Speaker 2: 10:16

Now, so, yeah, yeah, I was definitely asked more about, like you say, stress and lifestyle. I was asked so many times if I was going to have another baby. Personally, I was very frustrated because I so like to constantly ask are you going to have kids, do you want kids? Yeah, I felt like nobody ever asked me like, do you eat too much pizza and Coke? Like people were just like, do you want another baby?

Speaker 2: 10:56

Like make these huge life decisions, like right now in the seven minute visit, and then I'm a medical professional so I could read these things and I could understand medications and whatnot and so many of the meds you really can take until you're ready to conceive or even until you conceive, like when you find out you're pregnant. So many of these meds you can just stop and, although it's not ideal for RA and I get that, but there was so much fear around like do you want to have another baby? And I was just like, oh my gosh, can't we just like eat a little bit less pizza and like take it a little slower here? Like I felt like there's so many integrative things, like Dr Singla was saying, that are just I know this was off topic, but I think little steps in lifestyle are much more important than the big steps we often take right away. Absolutely, absolutely.

Speaker 1: 11:45

Most definitely, and I don't think it was until my second rheumatologist that I got asked any questions. My first one, it was like he didn't even want to take it seriously, didn't want to spend time with me, just in and out the door as soon as possible. But the second one, that's the one that took me seriously and that's the one that said okay, how are we eating? Are you getting the exercise that you need? All the things, all the things that I feel like should be asked.

Speaker 3: 12:09

I think a lot of it comes down to also training, like you mentioned. Like you have to jam the medical part of it into 10, 15 minute visits, which in itself is too short to talk about head to toe your symptoms and then on top of that add more things about like diet, because I think from the doctor perspective you're like, okay, you're going to say something and I'm not going to know how to address you or guide you, so we're just not going to talk about it. That's kind of that's the approach of like let's not bring it up if I don't know how to help you Because nobody goes into medical school or any sort of trained like medical professional setting to be like I'm not going to help them. It's more limitations put on us by the system as well. So the current situation stands that if you want to practice like more of an integrative way, you have to go out, go above and beyond what you're normally presented to do that research, learn on your own and then be able to counsel patients.

Speaker 3: 13:02

And it's hard. Who's going to do that? What's the motivation to do that? For me it's like, well, I had RA and I felt like this was a pain point for a lot of people, and so I was like I'm going to fix this for myself and for the patients. The motivation has to be there and the setup has to be there as well. Definitely.

Speaker 1: 13:18

I also think it's our job too, as a patient, to talk to you about things, maybe ahead of time, if we have a chart, send a message and say, okay, these are the topics that I would like to cover if we need to make a you know multiple appointments or a longer appointment, and that way they're not feeling rushed, you're not feeling rushed, you can talk about all the things that need to be talked about and, yeah, that might take a couple appointments, but if that's what you got to do, that's what you got to do.

Speaker 4: 13:43

So I think it's really interesting, dr Stingler, that you mentioned that you know there's some fears, underlying fears on your side as well as the physician, because there's on both sides. Now, you know, I didn't really think that, you know, a physician would be a little fearful about bringing up a certain topic because they wouldn't know how to address that. And that makes sense, you know, and that can really cause even more miscommunication between doctor and patient relationship and that's really, really interesting that you mentioned that. But I agree with Jen, you know it's on us as well as patients to be proactive. But you know it's just hard for patients, especially if they're really, you know, disabled or you know if they can't speak or you know their communications, you know just not clear enough to get that across, to be as proactive as we need to be. But it's an interesting angle.

Speaker 1: 15:07

What are some of the most common terms that overwhelm patients early in their diagnosis?

Speaker 2: 15:14

Sure, I think autoimmune in itself, just that word itself. People not just patients, just family members, friends they say, what does autoimmune even mean? And my answer is always your immune system, which is supposed to protect you from germs, gets confused and starts attacking your own body by mistake, kind of like friendly fire, and people seem to really understand that statement and that analogy. Or sometimes I'll say you know, an autoimmune disease is like having a home security system that mistakes you for an intruder and the alarm keeps going off even though you keep putting in the code. So I think that that's probably the number one term that people come to me as a coach that say like what does autoimmune even mean?

Speaker 1: 16:00

That's a really good description, dr Singlet. Before you even dive into yours, there's one I actually was thinking about as we were talking that I think I should have you explain because integrative. I don't think that everyone understands what that means yeah, yep, no, that's a great thing.

Speaker 3: 16:16

And also integrative is kind of like you's throwing around like the word holistic, because people can be functional medicine and call themselves integrative. But true integrative training is where you learn. I kind of think of it like a pyramid. Your first go-to to treat anyone is going to be okay, what's the traditional stuff, say, what are the medication, what's the disease process, diagnosis, what are the labs I need to get? Let's get a name, let's get a treatment going Now, based on what you're telling me, on your lifestyle history.

Speaker 3: 16:43

So like what you're eating, how you're moving, how you're sleeping, your stress, are there other things that we should be doing to optimize your health? Are you a vegan, vegetarian? Do I need to check your B2 folate level? Do you have a lot of anxiety? Do we need to talk about acupuncture or do we need to pull things from the Eastern side of the world to kind of see if that would be helping? So it's blending what we know on this side of the world in our traditional training with more what's viewed as complementary or alternative therapies.

Speaker 3: 17:12

When you use complementary or alternative therapies as the primary starting point, that's not traditional medicine and that's not integrative medicine. That's just doing something that's not standard of care for a medical condition right in this world. So I am okay when, hey, you're doing this medication because your disease is bad, you have joint pain, let's do all the other stuff that other people do to see if it helps, as long as the risk is low and the benefit is high. So you're integrating and weaving in therapies from different parts of the world, different medical systems, right, traditional Chinese medicine, even Ayurveda. You're using lifestyle as a way to kind of optimize your health and disease.

Speaker 1: 17:50

That's a really good explanation. Do either of you have any other jargon that you would like to explain?

Speaker 3: 17:56

I think remission is another one, because you're like remission, what does that mean? Or maybe you know someone with cancer that's used that word like oh, I'm in remission, and you're like, shoot, do I have that? Is that the same process? And remission, for any rheumatologist at least, is going to be when the disease active, is non-existent or very minimal, based on like kind of what the doctor is hearing on what their exam is showing and what the labs are showing. That's when we say you know what we want, the immune system may have gone rogue but we have, course, corrected it and things are quiet and we want it to stay like this for a long time.

Speaker 3: 18:34

And so sometimes when I say, okay, that's, our ultimate goal is remission, and sometimes people can be in medicated remission, where they need to be on medicine to stay in remission. Or ideally, like the Holy grail, is non-medicated remission Right, and so we just are. We're going to try to go towards that, but we may just need to be on the most minimal amount of dose to stay in remission, if not. I hope that makes sense.

Speaker 1: 18:55

It most definitely does. And next I'm going to ask you, angelique are there any terms that you think somebody may in the newer side of diagnosis? Is there a term you think they might want to have explained?

Speaker 4: 19:07

I would say autoimmune, just like Stephanie was saying, I think. For me, you know, that was a really scary thing. Also, growing up in the 80s, the first thing that I was thinking when the doctor told me I was autoimmune was HIV and it scared the heck out of me, you know, until the doctor explained to me exactly what was happening with my myositis and understanding what really autoimmune meant. Okay, this you know, we can manage this and this is something that you know is part of my life now. But I think autoimmune was the main term. Remission is another one that even now it's like some of us, you know, in our community we say, okay, remission, that's really used like for cancer patients. But so should we say disease stability, are we just being stable? We say disease stability, are we just being stable? So, yeah, there's always that confusion around using that word remission in the autoimmune and the chronic illness community. But those are the only two that I would think.

Speaker 1: 20:03

I think, my favorite one to explain, and I should have told you all to bring them, but it's the spoon theory. Did any of you even know what the spoon theory was when you were diagnosed? No, I sure didn't Never, even Never heard of it. And it's amazing because you know it was a famous blogger sitting out to lunch with her friend, gathering up all the spoons and trying to figure out a way to describe lupus.

Speaker 1: 20:25

People ask me about the spoon theory. This is how she explained her allotted energy for the day. Each spoon was like a bar of your battery, and so you could start your day out and you know, you get up, you take a shower, you eat breakfast, maybe you're making lunches for the kids. Each thing takes away some of that energy and you could get to lunchtime and if your disease is not well controlled, maybe you already need a nap. Maybe your disease is extremely active right now. Right, that's the one I'm always explaining to people is the spoon theory, and I want to have us talk about DMARTs. What are they and why are they so important to RA treatment? So, dr Singlet, I'm going to direct this one to you automatically.

Speaker 3: 21:07

Yeah. So when I these I just call it alphabet soup to patients, I was like I'm about to throw a lot of alphabet soup at you and it's okay. I draw it out for them on kind of what I'm thinking, and then every visit I make sure we understand what this alphabet soup is. So I usually start with kind of this triangle and I say, when we're talking about treatment for RA, at the very bottom is the first thing that you're going to reach for. So that's like your NSAIDs, your, you know, diclofenac, all those type of Aleve in that family of medications, along with NSAIDs. At the bottom is also steroids. Okay, well, we all know those are not long-term medications. Those are kind of to help us in the short run. As you keep going up the triangle. These are going to be more things that are going to help us get off of the steroids, get off of the NSAIDs.

Speaker 3: 21:55

And the first rung right above the NSAIDs and steroids, is what we call DMARDs, and DMARDs stands for Disease Modifying Antirheumatic Drugs. It is a mouthful, which is why we call it DMARDs, and so these were in the kind of invention of these medications. These came out before what's at the very top of the triangle which is biologics. So DMARDs, the most well-known one is probably methotrexate, which we also borrow from the oncology world. We just want to be oncologists, that's what it is, but we borrow it, but our dosing is different, the way we use it is different, the way we give it is different. And so methotrexate is a well-known DMARD and the point is to use it so we can get off the stuff that are more band-aid type of treatments.

Speaker 3: 22:40

And then, like I said at the top, is this newer category of more sophisticated medications called biologics. And the word biologics does not make any sense If you don't know what context you're using it. You're like what is that? So it's more sophisticated than DMARDs. These came out more in the late 90s, early 2000s, so they're relatively newer.

Speaker 3: 23:02

But now we're getting more and more data on it and what we're finding is that they're sophisticated in that they target one part of the immune system, whereas DMARDs are kind of like they smother, like a blanket, the entire immune system. So it's working globally, which is sometimes why you have more side effects with the methotrexate, like hair loss, oral ulcers, you know, you can become low in your white blood cell count and things like that. Biologics just go and target one component of the immune system, and so when we're talking about therapy, everyone's therapy, and the way you combine different things can be different. What I do know is that you should not be on unless your rheumatologist says otherwise. Right, and they have good reasoning for this. But you should not be on two biologics. You can be on a biologic and a DMARD Heck. You can be on biologic DMARD and a steroid and an NSAID, but the goal is just to get you on the most minimal amount of all of those, at the lowest dose to keep you in remission.

Speaker 1: 23:55

So that's kind of how I think about it. Oh wow, well, as you were telling us this, I drew it out. I was like, ok, I need this in like picture form for myself. I've been writing target one component because I think that's a fantastic idea. It makes so much sense, and how much better would we feel in understanding if all of our rheumatologists explained it that way.

Speaker 3: 24:18

Right, it takes probably four or five extra minutes, which is too long, which is precious Precious.

Speaker 1: 24:25

You did it really quickly, okay, so now you've touched on biologics, and they sound super intimidating to most of us. What should the newly diagnosed patients know about them?

Speaker 3: 24:35

So usually in the way that rheumatologists have been trained is that you start with the DMARD and then, if that doesn't work after about three months, then you go up to the bio. Either you add a biologic or you jump ship from the DMARD and start like monotherapy or just one medication with the biologic. And so it really depends on how severe the presentation is, what your blood work is looking like, because sometimes I'll go straight to a biologic, I'll bypass the bottom two altogether and say they're not going to do much for us, we're just wasting time, the time is not on our side, and that the only person really that gets between me and the biologic is the insurance company at this point, because they're going to say do you really want to go to the most expensive route? First, Because methotrexate is like 15 bucks from the front, like why would you want a patient to suffer, especially if I'm telling you from my experience that it's a no-go, it's not going to work. You're just, you know, causing more joint damage, more pain, more inflammation. That's not going to help anybody. So the way our current system is is we have to play their game, otherwise there's no way someone should be paying $6,000 every week for an injection right. That's not realistic for the majority of people out there.

Speaker 3: 25:44

So what I like to do is and that process, by the way, of insurance companies denying you right off the bat for biologic, that's called a prior authorization.

Speaker 3: 25:54

So any medication that can be picked up from like Walgreens or CVS, you know, like steroids, naproxen is probably not going to require a prior authorization, unless it's some special formulation or something special about it. A biologic, however, will most likely require a prior authorization because the insurance company is not going to give it out like go ahead, we'll cover it. They're going to say do you really need this? Have you failed other stuff? And if so, show us proof and then we'll send it to you and so that prior authorization process can eat up two, three weeks easily of back and forth. And you're still hurting, you're still stiff, you're probably on steroids at this point. So that's a frustrating part I will say about being a rheumatologist, but these are things that people should know about. When I hear my doctor's going to prescribe me something, I hear OK, I'm going to go to Walgreens and I'm going to go get it the next tomorrow. That's just not how biologics work in terms of me prescribing it to you, getting it at your front door.

Speaker 1: 26:48

Sometimes we hear the word infusion floating around and people might not realize that that has to do with biologics. Do you mind explaining what infusion is and also, I guess, what helps you make a decision if they need to go the infusion route or injecting themselves route?

Speaker 3: 27:06

That's a great. That's a great question, I think so. Infusion biologics, basically, can be administered in different ways. Most of the time it's what we call a subcutaneous injection. The needle is a small tip needle that goes into the fat layer of our body and then it gets absorbed over the next couple of days after injecting it. Some people need an infusion, which is where the nurse comes and puts in the IV right into your vein and then you sit there on a chair and the little bag delivers the medication into your vessels blood vessels.

Speaker 3: 27:39

You know there's a lot of things that goes into that decision of why you would need an injection versus an infusion, because an infusion for anybody is a bigger pain in the butt. I would think having to take time off of work and wait there. And then what if they need to poke you on the other side. Like, there's a lot of time and effort and money involved in this. Infusions in general are probably more pricey, so it's going to take a longer authorization process. Extra copay yes, yes, exactly, and they're going to be charging you fees to go and do the administration and blah, blah, blah. There's a lot of behind the scenes stuff that gets you a yes, you may now go, proceed and get the infusion, but the decision is not simple. It really is again on that doctor patient relationship, what they're hearing, what they're seeing and going from there. But typically that's not your first go to of like you need an infusion right away Unless there's always outliers to every situation. But typically that's not anyone's go to.

Speaker 1: 28:36

I think I was the oddball. It was a lot of. I'd had so many allergic reactions that they were like yeah, we're doing infusion with you, Right, we want to watch you yeah. And that's not always the case.

Speaker 2: 29:04

Yeah, definitely. What were you going to say? We just have to tell our patients or clients that like this is just how insurance works. This is just, jen. You tried everything else and fusion is our only other option. I know you're scared, but this is it. Like you, either you either want to try it or you don't. And sometimes I think, when you take away a lot of the gray, you know like some patients really want knowledge and want to be empowered and want to know everything, and sometimes you have to take the other approach and just be like it's either you do or you don't, and that's just all. These are all the tools I have as your provider today.

Speaker 3: 30:03

This is it to simplify, otherwise people will do their own research and be like, well, what about this? What about?

Speaker 2: 30:10

that, and then they want like ivermectin, and then you're like how did we go down this? You know, right, right, right, that's a throw that out there. But like sometimes you're just like and as that role you just. These are just the tools that the medical community has developed over the last hundreds of years, and this is all I have to offer you, and this is how we get it.

Speaker 3: 30:28

And it's a lot to say with like evidence, right, like this is what's worked with so many people ahead of you, and sure you might not be that person that falls into that cohort or that group of people that did well, but we're going based on what we know. Right, I have to make a decision based on what I know and what I'm seeing and then craft the best path forward, and so that trust factor needs to be there, because it's the number one thing I've noticed is when patients are hesitant or fearful or scared, some part of their brain is not being answered, some question in their sitting, in their heart or in their mind is not being answered, and it's like they're going to go do their own thing. With the chat, gpt and WebMD and Google. Between those, they're going to get their source or resource however they need, and so it's very important to be frank and open with them as well.

Speaker 1: 31:14

You also have no control over how they're going to take, how you talk to them, because you've got these patients that come in that have different backgrounds. You're not aware of the way they were raised or the kind of lifestyle they have, and so maybe being frugal doesn't go over well because they had people that were too harsh with them. That's not on you guys. You guys are doing the best that you can to treat your patients and give them the information they have. It could be incredibly difficult to try to figure out how to talk to each person.

Speaker 4: 31:42

We know, with chat, gpt and all these different resources now that we have in front of us, I mean, there's just so many avenues that we can go down. I'm sure it makes it really hard for physicians and other people in the professional capacity to handle clients in such a way.

Speaker 3: 31:59

Yeah, not just physicians but from the patient side. Like I definitely chat GPT and stuff and I'm like I'm overwhelmed. Now I'm like in analysis paralysis here. I don't know how to move forward. There's too much information.

Speaker 4: 32:12

Right, right, it goes both ways.

Speaker 1: 32:15

So, stephanie, my next question is for you what does the term flare mean to you, both as a patient and in your professional life?

Speaker 2: 32:26

So flare is a very vague, undefined term, and that's whenever you have a symptom that is worse. Now, that could mean you always have the symptom and it gets worse. Or it could mean sometimes you don't have the symptom and it appears out of nowhere, right, because you can have wrist pain all the time, and then it gets much worse and that's a flare. Or some people have no wrist pain and then wake up with wrist pain, right? So a flare is anything is defined by me as anything that deviates from the norm and, of course, anything that prevents you from living your best life, right? So if, like sometimes, flares are still livable and I think people forget that they think if I can live with it, if I can manage it with medications or whatever else I use to manage my symptoms, it's not considered a flare. It still is. It's just a manageable flare, Right? So that's what I think.

Speaker 1: 33:17

And Dr Singla. We've also heard about JAK inhibitors. I had never heard of a mentel. I think it was last year. How do they fit into the treatment landscape?

Speaker 3: 33:25

So JAK inhibitors are kind of more of the newer developments in the class of biologics because they're targeting the JAK stat pathway of the immune system. When I started fellowship even graduating fellowship we didn't use any of these medications. This is I had to learn after graduating and everything. But typically it's reserved for okay, you failed this type of biologic like an anti-TNF, let's say so. Anti-tnf is a biologic that's targeting just TNF-alpha. If that didn't work, maybe we'll switch you to a different biologic like an IL-6 inhibitor. So IL-6 is another molecule that a biologic is kind of targeting.

Speaker 3: 34:03

As you keep going down the line of stuff to target, jak inhibitors are probably the most recent invention by man of what to target to treat RA basically. So it's typically not your again first line medication. For some people it is, depending on how severe stuff is, but for most rheumatologists it's kind of you tried this, you tried this and now we're at JAK inhibitors. Or you add it to methotrexate because you just need super hard control of your RA. So it's a newer one and it affects we're still learning about it, let's just put it that way in terms of risk of infection, long-term risk, things like that. But if you need it, like Stephanie said if you need it, you need it.

Speaker 1: 34:43

This is what we know is next and it's considered a biological as well, right.

Speaker 2: 34:47

I think the cool thing about just for your audience, jen, that oh my gosh, I'm sorry that JAK inhibitors have that I just didn't hear said yet is that they're usually every day. You take it every day and although that can be more cumbersome for certain patients, especially pediatric patients, it's also kind of anxiety relieving for people who worry about getting sick on their biologics because they're a little bit easier to stop. So I find patients are just more like the people that are really really worried about like turning off their immune system. Jack inhibitors have kind of like changed the game in that because they can just not take it tomorrow.

Speaker 4: 35:23

And it's also oral, so it's really important.

Speaker 2: 35:27

So it's really important. It's just a pill.

Speaker 1: 35:31

Exactly, I've been on it for almost a year and a half these symptoms I've ever had. Actually, I don't even notice any symptoms actually. Wow, that's really good. Yeah, it's so far my favorite drug, the medication I was on before it. All kinds of symptoms. You had to make sure you ate enough or your stomach would get sick or you get a migraine. This one doesn't matter and I take it every night with dinner and I don't notice a darn thing.

Speaker 2: 35:57

It's crazy just to like throw something very random out there, but I feel like in healthcare a lot of other healthcare spaces are going in the direction of not daily dosing or pills. A lot of other healthcare spaces are going in the direction of not daily dosing or pills. A lot of other healthcare spaces are going in like injectables, weekly or monthly or more than monthly, except RA. Ra is coming back to this like daily pill space. It's very interesting but it's important because our patients and clients they have other things besides RA. Right, they're not just RA, but it's just. It's really interesting to see like they're on injectables for other things but then we're putting them on pills for their RA. Interesting.

Speaker 1: 36:35

And if you cycle through enough things and you get to the point where you're desperate, like I was, you're going to do whatever they tell you to do. It doesn't matter if it's an infusion. If it's an injection or if it's pill, I was just like, okay, what can I do to clear up my joints and my skin? What is my best option that can work together? I was very lucky that there was one that would work for everything. Are there any misconceptions around terms like chronic or progressive that you wish patients understood?

Speaker 3: 36:59

better. I can go first. I think people get confused between the word chronic and acute. Let's just start there. Acute is like well, I have the flu, it's an acute illness because it's going to go away. Right, it happens and then stops. Chronic is like it starts and then maybe it might get better, but there's no permanent stop in sight. So it's lifelong is the other term that I kind of use for it. Progressive is something that we hope to stop with the use of medications. Right, we don't want it progressing and getting worse. We want to keep you in remission and keep everything quiet. But the reality is some people have it chronic, number one, but also progressing, and we need to either do more, take a different approach, maybe make sure we get the diagnosis right, but every rheumatologist's goal is to stop it from being progressive, at least from my understanding and my training.

Speaker 2: 37:50

Progressive is a very scary word to lay people and medical professionals right. It's throwing that out there. People get very overwhelmed. So I often approach that very, very gently and just say like this will progress unless you treat it. The goal is remission. But it's just to note that it's a very scary term and if you were at an office and somebody said it to you and you were scared, you're completely validated and we get it. We know it's scary. What?

Speaker 1: 38:16

advice do you have for patients who feel too intimidated to ask their doctor to explain these words?

Speaker 3: 38:23

Yes, I think a good place to start is going online, finding spaces like Stephanie's and yours, shannon, about what's the community that I can reach out to or lean on without feeling like I'm going to be judged about the questions I'm asking. So maybe do your own research with a grain of salt right Go down the chat GPT rabbit hole, just control yourself if you can and try to get the best answers that make the most sense and then when you approach your doctor, you can say you know, I had a question about this. I've been kind of reaching out to others who have RA. Don't say I've done my own research because we don't know where that leads, but say my understanding is this Do you think that's correct? Do you have anything else to say? So approach it from a place of. I was curious, I reached out for help. What do you think that's?

Speaker 1: 39:06

very sound advice. I worry that it's offensive to go into a physician's office and say I've been doing all my research. I don't want to come across like I don't trust you.

Speaker 3: 39:16

It has to do with being the physician side too, Like there's zero reason for you to be offended because it's not about you, it's about the patient. So I would not feel bad about asking questions. Just don't come from a point of oh, I did my research and this is you questions.

Speaker 4: 39:30

Just don't come from a point of oh, I did my research and this is, you know. I think it's all about the language we use. You know. We need to be mindful of that and be kind to you, know what we're asking and put that into just to learning that language of communicating with our doctors.

Speaker 2: 39:44

Absolutely. I actually love when people come in and say I've already read about this or I read on the ACR website or on this website that like these are in the guide. I love it and I encourage them. I'm like I'm so glad that you read about it and sometimes I'll even make not a joke but like a joke where I'm like it's good you already read because you know your insurance only gives me seven minutes with you, you know, and then it kind of like breaks the ice. You know your insurance only gives me seven minutes with you and then it kind of like breaks the ice. But I love when patients know more and read more. I love when they are.

Speaker 2: 40:16

I mean, I've learned so much from patients over the years. I wouldn't know so many things. Just even one time like this was like 15 years ago. A patient told me that they drink a protein shake with their methotrexate injection every week. When they took it. I don't know what it is or why it helps, but I've passed that tip on to hundreds of patients now and it helps so much with the nausea and the hangover and the you know XYZ that people have on methotrexate. And like a patient taught me that I didn't learn that in school. Yeah, have you made a reel for that yet?

Speaker 1: 40:52

No, Stephanie, I'm so disappointed in you.

Speaker 2: 40:57

My point is for your audience. We love when you read. We love, I love when you know things and you come in knowledgeable, even if it is obscure or unpopular, like maybe you do come in and want to talk about like I brought up ivermectin earlier because I've had quite Even if it is obscure or unpopular, like maybe you do come in and want to talk about like I brought up ivermectin earlier because I've had quite a few people come in lately and ask, but let's talk about it, I'm glad you read about it, like, let's dissect it. I really encourage everybody to read and know more because knowledge really is power. And you know, sometimes people can say I just cannot remember to take a daily pill, I just need a shot. And then you just you get more out on the table because they come in knowing something about the medicine and then also about themselves, and it just makes things easier.

Speaker 2: 41:38

I think I love when patients read and know, when the patient has more knowledge and then they can take their personal influence and put it into that knowledge. I think it helps limit my decisions. Dr Singla treats kids right Like if you have parents that do not have a lifestyle where they can give their child a medication every day. You just know that's not an option, right? And so then they already read about it. They come to you and tell you that and those are the simple things that we can just check, check, check. You know that don't require medical training or medical school. So it's really nice when you can take knowledge, add it to your lifestyle and then bring me more information.

Speaker 1: 42:14

I'm sure these might be some fan favorites. People want to hear your version of these. I think you wanted to take the seronegative.

Speaker 2: 42:21

Yeah, so seronegative rheumatoid arthritis is basically when you have symptoms and possibly radiographic support or x-ray support of rheumatoid arthritis, but the labs are not always positive or indicative of rheumatoid arthritis. So basically your labs can be completely normal but you can show like you can look like you have rheumatoid arthritis. I like this question and this explanation because I am actually seronegative. I like this question and this explanation because I am actually seronegative. My rheumatoid factor is like barely ever high and then my anti-CCP is consistently negative. I've had, or non-contributory or whatever you want to call it, but I've had a few in the past that were a little elevated. But technically, on paper, I'm seronegative, so it's been interesting. But I have all of the other symptoms, I have the x-ray support, I've responded to appropriate treatments, yada, yada. So that's what seronegative is.

Speaker 3: 43:17

When we say seronegative, seronegative just means like a CRO, like what's going on in the blood? Are there markers floating around in your body like little proteins? So when we say seronegative you are negative for both rheumatoid factor and CCP. Those are two of the labs that we check from the get-go to see where you are on that spectrum of RA. Like Stephanie said, you can be seronegative RA and have full-blown RA, the response to biologics or therapy People with rheumatoid factor. That's why when some people say like oh, my labs were all negative, so my doctor said I didn't have RA.

Speaker 3: 43:55

Ra is a very clinical diagnosis. The doctor needs to have hands on your joints to figure out if there's fullness, stiffness going on. Are you giving them a history of? I'm having trouble in the morning bending my fingers. You know I feel stiff because you can have negative RF and negative CCP and still have RA.

Speaker 3: 44:08

When we see the rheumatoid factor in CCP positive, automatically you're classified as seropositive RA, meaning your course has potential to be more aggressive than somebody who doesn't have those markers. So for us it's almost like risk stratification of we're going to check these. You have RA, but we're going to check to see if these are positive or negative. Either way we're going to start treatment. If you're seronegative, you know it might change your management of how you're going to treat somebody. But seropositive is almost like, okay, we got to keep close tabs and make sure this medication works, because it can progress and cause you to have more of that chronic course of little divots in the bone right, which are called erosions, or cartilage being damaged, things like that. So for us it's just a matter of how aggressive do we need to be if you're RF and CCP positive?

Speaker 1: 44:58

And your labs can change. You can eventually.

Speaker 3: 45:00

Yeah, in rheumatology training once it's positive you're trained not to recheck it. Now rheumatoid factor I have seen turn positive after an illness and then it turns negative. So we do trend. That CCP is a little bit different. I haven't seen that and maybe other people have. But usually when both are positive together that's pretty strong clinical indication that you can have severe form of.

Speaker 1: 45:25

RA. So the last ones I was going to have you explain is the ESR and the CRP.

Speaker 3: 45:30

Yes, so the ESR. Another name term for it is the sed rate, sedimentation rate. But basically ESR stands for erythrocyte sedimentation rate. It's probably more than what people want to know, but essentially what someone is doing in the lab is taking your blood and seeing how fast your red blood cells drop from the top of a little tube from here to here. So the longer it takes for it to or let's just put it this way the higher your ESR.

Speaker 3: 45:55

Basically there's something in the blood that's causing inflammation, essentially in the setting of a rheumatologic diagnosis. So when your CRP is more of a, it's a marker of inflammation but it changes faster compared to the ESR. So sometimes you'll see patients can come in with, let's say, rfccp, positive RA. Their ESR are both elevated, and then you recheck it in about six weeks. The ESR might still be a little bit elevated but the CRP is normal because there's a little bit of a lag time on when it takes for the ESR to completely normalize, whereas a CRP you'll see more real-time, day-to-day changes in. So they're again indirect markers of how inflamed are you, because you can have negative CRP and ESR like they're normal and have bad arthritis. So I've seen both cases.

Speaker 1: 46:43

I could listen to you all day.

Speaker 2: 46:45

ESR and CRP are both non-specific markers of inflammation. They can be elevated for a lot of different reasons too. That's a good point.

Speaker 1: 46:53

Thank you all for being here. I could seriously ask you questions all day long, even if they're ones I think I already understand.

Speaker 4: 46:59

Exactly. I've learned so much today. Thank you both for being here.

Speaker 3: 47:03

Yeah, no, absolutely. There's a lot of gray area in the world of rheumatology. It's a good chance that if you're confused, there's tons of other people out there confused. It's not just you and the rheumatologist is not confused, but there's different art of medicine too. So that might be what the gray area is.

Speaker 1: 47:19

We're on your team? Yes, we are, and thank you again so much, and listeners until next time. Whatever you are, be a good one.