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Patient Stories, Podcast

Riding the Rheumatoid Arthritis Rollercoaster: Methotrexate, Medication Changes and More with Ali DiGiacomo

July 25, 2022
35 min read
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Summary:

On Episode 76 of the Arthritis Life Podcast, Ali DiGiacomo describes the emotional roller coaster she experienced while managing a flare up of rheumatoid arthritis and switching up her medication regimen.

Ali and Cheryl discuss how overwhelming medication changes can be, and Ali describes what it was like to switch doses of methotrexate, switch to a new biologic medication and add prednisone and NDSAIDs in the mix.  Ali & Cheryl also discuss what it’s like to have costochondritis and how they cope with unresolved health issues while still trying to live a full, joyful life. 

This episode also includes reflections about how to cope with social media jealousy within the chronic illness community, how to set boundaries with friends and loved ones during covid times, and more.  This interview was conducted in February 2022.

Video

Episode at a glance:

  • Flare up leads to medication changes: Ali shares what it was like to switch biologics, take a course of prednisone and add in NSAID (Non steroidal anti inflammatory medications) and alter her methotrexate dosage
  • Heartbreak: when Ali discovered she wasn’t in medicated remission, she feels heartbroken
  • Emergency Room Visit: Ali goes to the emergency room with severe pelvic pain, doesn’t get any clear answers, follows up with both Gynecology and GI doctors 
  • Costochondritis and “hypochondriac” accusations: Cheryl & Ali discuss their experiences with costochondritis and how they were both accused of being hypochondriacs before their accurate diagnosis of costochondritis
  • Coping: we discuss how we cope with the ups and downs of chronic illness life
  • Covid and social life: discussion about how to set boundaries socially around covid precautions
  • Social Media and Jealousy: reflections about how to cope when others seem to be doing better than you 
  • Everyone is different: there’s no badge for managing RA a certain way
  • Ali’s advice to people just starting out on Methotrexate, or who are hesitant about it

Medical disclaimer: 

All content found on Arthritis Life public channels 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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Ali DiGiacomo : Hey! I’m Ali, I got diagnosed with JIA at the age of 15. I’ve been battling this disease for about 14 years now. I love to bring awareness regarding autoimmune diseases, specifically Rheumatoid Arthritis. I also chose a career as a Personal Trainer to prove to Spoonies that we can move our bodies in a fun safe way!

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen 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:

[Introductory music]

Cheryl: 

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.  

Cheryl:  

Oh, I’m so excited to have Ali back on the podcast. Welcome, Ali!

Ali:  

Yes, I’m so excited to be back. I can’t believe it’s been two full years. Like, what?

Cheryl:  

I know, I know. So, fill us in. What has changed for you since the summer of 2020 when we last checked in about methotrexate and other medications? What has been going on?

Ali:  

Oh, my goodness. A huge roller coaster, honestly. So, last time I chatted with you guys, it was summer of 2020. I believe I was on 10 pills, which is, I believe, like 25 milligrams of methotrexate. I was on — that’s like the highest dose, usually, for rheumatoid arthritis patients, is 10 pills a week, 25 milligrams if you’re injecting. And again, I have not injected methotrexate. My whole journey has been with the tablets, because I handle it quite well and I’m also kind of lazy to make the switch. But so, I was on, I was always on 10 pills for since I started back in 2016. Until there was that time I went off it, which I talked about in the last podcast. And then, I was doing okay. So, I was on Enbrel, I was on methotrexate at that time. And I was able to get down all the way to three pills, which is like the lowest, it’s like four to three. And I worked my way — so, you have to like work your way down to get there. So, I worked my way down. We were all really excited. 

And then, come Thanksgiving of last year. So, 2021, I started to flare. I was unable to squat. So, if anybody remembers, I’m a personal trainer. So, I move for a living. And I was having a hard time explaining a squat to a client. And I teach DanceFit classes like three to five times a week, and I was having a really hard time. And so, I went to my rheumatologist and I’m like, “Hey, like, usually I come here and I’m feeling great, but I’m not doing so well.” And she looks at my knees and she’s like, “You have fluid in both of your knees,” and I was like oh, my goodness. 

So, of course, when this happens the first thing is okay, we need to up your methotrexate. So, I went from, I believe, it was four pills at this time. I doubled it. She was like, you can progress, like add on every like two weeks. And knowing me, I go all in. So, I said, “I’m just gonna double it.” I don’t recommend that. I recommend taking your time with it because I doubled it and cue those methotraxate hangovers. It was rough. I was feeling all of those migraines. It was very intense. It was like starting over for the first time. And then, what we came to find out was that my Enbrel was not working. So, it turns out I developed antibodies to the Enbrel medication. And then, over Thanksgiving break, my doctor called and said, “We need to make the switch to Humira.”

Cheryl:  

And how many years had you been on Enbrel? 

Ali:

Yep, it had been about two and a half years at that point. 

Cheryl:

Okay, okay. And that’s a really common experience to have. Like, if you’re starting to feel worse, like if there’s a point where you’re like, should I — is there any wiggle room with a biologic? Like, with Remicade, for me, we were able to kind of say, okay, instead of every six weeks, let’s come every five weeks, every four weeks, let’s increase the dosage, versus like Enbrel, I think you don’t really — you can’t really switch it up too much, right? So, you’re like, okay. A little methotrexate is what we can switch up, but it’s rough. Once — and I had the same thing with Enbrel — once your body makes antibodies to the medication, it’s hard to recover from that. So, then, so yeah, then you got prescribed Humira. What were your feelings about having to switch?

Ali:  

Oh, yeah. So, at first, I was okay with it. I was actually, I was excited. I like to change. So, it didn’t really put me down. The only thing that kind of put me down was okay, so because the Enbrel wasn’t working, so it wasn’t really doing anything for me and I was down to four pills of methotrexate, it kind of just goes to show that my body cannot live without medication right now. And I think that’s where my heart kind of broke a little bit because I’m like, nowhere near remission. So, basically, I was on four pills of methotrexate. And for spoonies, that’s not much at all. It’s just to keep those — there’s a word for it, but it’s just to keep like those antibodies in there. So, actually, I’m not allowed to go off methotrexate until I try to get pregnant, just to get my body used to it. So, I’m not used to it. But, you know, continue that. 

So, anyway, so it kind of broke my heart a little bit that, because I was on the lowest type of medication, my body still cannot handle that. Because even though on medication, I was feeling so good, I thought I was in medicated remission. It kind of hurt a little bit to know I’m not in a medicated remission. I’m actually nowhere near remission. But I let myself feel those feelings. I had my pity party. I mean, it was Thanksgiving. So, like I ate all the fun things. I was with family and I got the news right before we went to like a Christmas parade, so it wasn’t that big of a hit. And yeah, and so then, I started Humira about two weeks after that.

Cheryl:  

And I remember — so, for those of you who don’t fall Ali on social media, you need to. @AnotherDaywithRA on Instagram and Tik Tok. She’s got just entertainment value, and helpful insights, and motivation, and good ideas for, you know, physical activity and such. But, I remember, you know, you’re just — you’ve done a great job of just sharing like those ups and downs with such, you know, honesty. And I think it is a little bit scary for a lot of people. Even if you have hope, like starting a new medication, you’re like, okay, because my body has made antibodies to other ones, but it worked before then — at least I don’t want to put words in your mouth, but that’s what I usually think. Okay, it worked really, really well until my body made the antibodies. So, maybe the next one will also work really well, you know, until I maybe, hopefully, don’t. But. 

Ali:

Until I have antibodies, and then I’ve got — yeah.

Cheryl:

Yeah, but like, so when you started Humira, like, how was your response? Did you have any side effects or —?

Ali:  

No side effects except for maybe one, fatigue. I noticed — it could have been because my body was flaring, like I was in a full body flare. Knees filled with fluid; my elbows were hurting. I just was feeling awful. And I was also, I didn’t mention this, but I was taking steroids and the strongest NSAIDs you could possibly take, because I don’t react to all the NSAIDs. Like, it doesn’t help me at all. So, she put me in the strongest one. 

So, with prednisone, NSAID, starting Humira, and doubling my methotrexate, I felt awful. So, I don’t really know if it was the Humira. I think it was the combination of everything. Yes, because the NSAIDs and prednisone combination is not fun, if anybody has done it. 

When I was working, and I was still teaching class and group fitness, and I was trying my best, but I would have to modify and even tell them “Hey, guys, I can’t move today, we have to not dance and do something else.” But yeah, so the fatigue was something I noticed. After I stopped the prednisone, stopped the NSAIDs, because I was only on those for about two, three weeks, I noticed I was very tired and exhausted. 

So, fatigue is not just being sleepy, it’s like, you just don’t have motivation to get up, you just, your body is exhausted as well as your mind. And so, I noticed that, and I started — I was never a nap taker. If you follow me on social media, I’m very hyper. I’m up at 4:15am every day, and I never used to nap until I started Humira. And then, I started to nap about like two hours a day, and it would knock me on my butt. And I would be in bed, and I’d be sleeping, and then I’d wake up feeling really groggy, because I’m not used to it. So, that was the biggest side effect with Humira. And I’m pretty sure it’s the Humira that’s causing that.

Cheryl:  

That’s so hard, that you touched on something that I think a lot of people listening will identify with, which is, it’s like, what’s causing what, you know? Like, you don’t — and ideally, to know, like, okay, is my fatigue from X medicine or from the disease, you’d be like, “Well, what if I don’t take this medicine and then see how bad it is.” But when you have multiple medicines, and you can’t risk going off them just to like, understand better what’s going on unless it’s like a terrible side effect, like, let’s say, for some people methotrexate makes them so nauseous that they can’t even eat at all, you know. It’s just, it can be so difficult to cope with that uncertainty. I think many of us, too. Like, okay, if you’re feeling, you know, like you have a little cold or like, your body’s fighting something and then you’re like, “Okay, well, is it my body fighting something? Or is it, you know, am I feeling more tired because of this or that?” 

So, yeah, since you went off the prednisone too, like, could you be having a rebound of fatigue where like — because I know, at least for me, prednisone makes me really even more hyper than usual, which is like, kind of scary. 

Ali:

Yeah. 

Cheryl:

And then I get, if I go off of it, and then I get tired. But yeah, so but now it’s been persisting, this fatigue. But has it been helping your disease overall, do you think, or —?

Ali:  

I do. I don’t have fluid on my knees. I just had my checkup last week. So, if you’re on methotrexate, usually go to your rheumatologist every three months to get your labs done and just kind of check you out. I’m the person that likes to go in person versus virtual because I want them to look at my joints and look at my knees. I even wear shorts in winter so that they can check my knees out. You don’t have to do that. But yeah, so I went to my checkup and everything is looking good. My labs are great. And I’m feeling not 100%, but I’m feeling a lot better than the full body flares experiencing over Thanksgiving. So, I think it’s — I think it’s working. 

The only thing is I did go to the emergency room back in December, so a couple months ago. And at first, I thought the only change was Humira. So, at first, I was a little nervous it was Humira because I was having, I guess, pelvic pain. So, it was like low, low stomach, like in that pelvic area, like where our women organs are. So, I was having pain there. And they could not figure it out. And I thought maybe, oh, maybe it’s Humira. But I checked in with my doctor. And she said that’s not a usual side effect. 

So, if you’re listening, you do want to notate these moments. And I just ordered a medical journal, so I’m going to notate how I feel every single day. And also, let your doctor know the side effects from your new medication because it gives you peace of mind.

Cheryl:  

Yeah, no, that’s it’s so hard and I know that yeah, we should do a whole episode on like, symptom tracking and because that can be so, so crucial, especially when you get into emergency situations, to have something that like someone else, even like a family member could bring in to communicate to the doctors too. Yeah, and to learn your own triggers. So, have you — did you get any resolution? Was it a pelvic pain from like the GI issues or —? I know you’ve had gastrointestinal — you and I are, well, buddies with having gastrointestinal issues. 

Ali:

Yup, yup.

Cheryl:

Along with RA, which is common, but still, it feels to me like no one completely understands like, what to do about it.

Ali:  

Especially when they realize that we have RA and they tend to dismiss us and say, “It’s your RA.” And I’m like, well, okay, but can we like, dig deeper? And I’m sure we can do a whole podcast about this episode. But yeah, so I actually, I went to the GYN and she kind of dismissed me a little bit. I don’t know, because I’m always going to the doctor because I have so many issues. And I think, or at least what I felt was that she thought, “Okay, she’s back again. Like, nothing’s wrong with her,” and so she dismissed me. I thought it was endometriosis. She assured me it’s not, even though I’m not 100% sure. But no resolution. 

I went to my GI, they have me on a really fun diet of being vegan, gluten-free, low FODMAP, plus the 25 items I can’t eat. So, the things us spoonies do to try to feel better is rough, but no resolution yet. We’re still waiting on some testing and hopefully get that figured out because I don’t want a trip to the ER again.

Cheryl:  

No, I’m so sorry. And I know you’ve had costochondritis before and that’s like the inflammation where the ribcage meets the sternum. And sorry, I’m like, remembering my own story as I’m listening to you because that’s — I’ve actually only ever been to the ER as a patient once. And it was when I had my first flare for costochondritis and I thought I was having a heart attack. 

Ali:

Mm-hmm. Can’t tell the difference.

Cheryl:

And I had, well, I had been in a car accident four months ago and I hadn’t had nerve pain on my arm that much. I had pain in my neck. But I had suddenly had this pain in my chest and some nerve pain, like numbness and tingling down my arm. I know for — and my left arm — and I know for women, those are like signs of a heart attack. I think I started like panicking and having shortness of breath and like but is it from panicking or is it from you? So, of course, I immediately in the ER get diagnosed as like a hypochondriac, even though I’ve never been to the ER before. It’s true that I wasn’t having a medical emergency but yeah, I did have costochondritis which closely mimics the symptoms of a heart attack because of just the severity of the chest pain, so. 

Ali:  

It does. 

Cheryl:

Yes. 

Ali:

Definitely. They say we can’t figure out if — we can’t differentiate the two. And I would be like, okay, then how do we know? 

Cheryl:

Yeah. 

Ali:

Because that’s like, if you read online, it says you can’t differentiate the two. It’s just as painful.

Cheryl:  

Yeah, so I guess you just have to go to rule it out because you don’t want to be like so scared of being accused of being hypochondriac that you’d like, die of an actual heart attack.

Ali:  

Exactly. It took them about five, six years to diagnose me with costochondritis after being like dismissed and being misdiagnosed. It took them five years. 

Cheryl:

I’m so sorry. 

Ali:

And two ER visits thinking I was dying.

Cheryl:  

Oh, that’s so scary. Yeah.

Ali:  

And of course, RA makes it worse as the rheumatologist tell us, because if we have like — anybody can get costo, it’s not an autoimmune disease. So, if we have RA, it just makes the inflammation way worse.

Cheryl:  

Yeah, yeah. I’m so, I’m so sorry. But I know, so you can see like, the topic of today is supposed to be, like quote-unquote ‘supposed to be’ methotrexate but like everything’s all interwoven, you know. Like, you don’t — and some people do like, that’s called monotherapy, if methotrexate — where they just, they have RA and they take methotrexate. And actually, quite a few people — I didn’t realize this till I was looking at like, the scientific journals. And it says like, this is from a 2019 article, it said like 50% of people do well — I don’t know how they qualified ‘well’ or quantified it — on methotrexate monotherapy, who have rheumatoid arthritis. 

And then, and so we’re kind of part of the population that needs the additional biologic and additional — but anyway, the point being is just you know, yeah, like, you start talking about methotrexate and then, you know, it spirals. Because you’re not going through just methotrexate, you’re having, you know, other GI issues, pelvic pain, and then you’re having biologics up and down, and then you’re trying to like have a life as a human being who wants to be an amazing personal trainer and is doing an amazing job despite all this. I don’t even — like, how are you coping? I don’t even know.

Ali:  

Yeah, no, it’s not easy. It’s easier when you’re doing okay on medication and everything is just fine. And I was that person that did well on methotrexate. I mean, for a good four or five years I did really well. And so, it definitely exists and it worked right away for me, which is great because biologics can take a while. Methotrexate, I think, is about like six weeks. And it worked right away. So, I love that and I love that half of the percentage is doing well, and that brings me joy. 

But coping… I mean, I’m doing okay. Of course, with COVID, it’s really tricky. It’s really hard. Especially upping my methotrexate and the fatigue that I’ve experienced with that and Humira, I just — I don’t really want to socialize. 

It’s also with COVID, because with us spoonies, like we’re more cautious about it. And I think people, even though with Omicron, which is if you’re listening to this podcast right now, is intense, but people are starting to calm down again. And like, get more comfortable. And I’m still like, no, I just, I’m not comfortable to meet up. I’m stressed about it. I’m so stressed in public. I’m a little stressed because I work with clients in person. So, I always have like a KN95 or whatever those are on. 

But coping with it, it’s hard. It’s not easy. That’s why I use Instagram as an outlet. So, whenever I’m having a hard time, I make a reel. So actually, if you ever see a reel it’s usually because I’m having a hard time and I try to make it funny.

Cheryl:  

Yeah. Yeah, and that’s like, people don’t always understand. I do the same thing. And then they’ll be like, “Oh, she’s so happy because she’s like smiling or dancing around,” and you’re like, this is a coping mechanism. 

Ali:

Yes, it is. Yeah. We’re dying.

Cheryl:

It depends. Like, sometimes it is, like I’m legitimately feeling good today and I’m gonna do this. But I think it’s — there’s like a cognitive dissonance, right? If you see someone who looks like they’re smiling, then you’re like, they must be just like carefree and happy. And like, I wish I was — I wish I had what they have. And then, you realize, okay. You wouldn’t necessarily want to trade places because of all the difficulty.

Ali:  

Absolutely. Yeah. Yeah. And that also goes with methotrexate, on the topic of methotrexate. I don’t want spoonies to get discouraged, because methotrexate can be a rollercoaster ride. So like, when we chatted in 2020, I was on 10 pills. And then, between that time, I went down to three, and then I was up at four, and then it went down to three. And now, I’m back up at eight right now, eight or ten; we’re probably going to keep increasing. But I used to watch other spoonies, and I would see them go off of methotrexate. And they would be so excited, and they would post a video or a reel and they would be like, “I’m going off! Like, I made it, I did it. I’m in remission,” and my heart would sink and I would feel so upset. And then, like that same person maybe a couple months later had to go back on it. 

So, that’s why I try not to talk too much about the dosage I’m on. On a podcast, I don’t mind, I would love to tell you guys. And I’m an open book. So, if you DM me, I’ll tell you, but whenever I post a reel, I’m always like, I don’t want people to feel bad that I’m going down because you have no idea I’ll probably go back up in like, six months. 

So, just saying that and putting that out there in case you see somebody and you get really sad and discouraged. Just know, it’s a roller coaster, right? So, we may feel good at some points, we should celebrate those people. Because at first, I would feel all jealous and sad. But now I’m like, I get it. I get it now.

Cheryl:  

No, no. You’ve touched on so many good things in that reflection. And I think it brings me back to like, mindfulness, right. And like, so often it’s like, mindfulness is like, sometimes people — like, spoonies get annoyed if everyone’s like, “You just need to try mindfulness,” you know? Like, that’s, I mean, mindfulness in the sense of like, you know, connection to and awareness of the present moment. And the fact that this is what we get. Like, this is the present moment, and it might get better in the future, it might get worse. And like, that is something that I really feel like I’ve learned through chronic illness. 

Because in the past, I was like, such a control freak, and I’m still like a recovering control freak. But like what you just said, it’s like, you really, it showed me like the acceptance or the understanding you have that like, it’s up and down. Like, it’s just going to be. 

You might be on four pills this month, it might be eight months, eight pills next month, you know, and the sooner that people can kind of come to terms with that, rather than saying, like, “I have RA and all I need to do is figure out the perfect amount or the perfect —,” do you know what I mean? Because the more you attach yourself to that, like, there’s just this one way of coping with it, you’re setting yourself up for failure, because it’s going to change.

Ali:  

Yeah. I mean, you have this for life. So, it’s going to be a roller coaster. Some days are going to be great, some are gonna be really bad and you just have to look forward to those better days and support one another, even if somebody’s going into remission and we’re super jealous. Yeah, it’s life. It’s like, for life. So, they’re probably not going to be in remission that long and they come right back up. So, yeah.

Cheryl:  

Everything is impermanent. And I think also with — you brought up jealousy. I think it’s, maybe this is wishful thinking but I think it is really possible at the same time to feel like jealous or envious about someone else’s remission while also truly feeling happy for them, you know, and feeling like, oh – like, in a different episode that maybe will have already come out at this time, I was talking with two other women, autoimmune coaches, about their journeys and we talked about how, yeah, it’s hard when you’re not doing well, and you see on Instagram someone who’s, you know, in remission or whatnot, but to say like, what is jealousy? What is my jealousy or envy telling me? Like, it tells me that this is something that I want, you know, this is something I value. And they have it. 

And you know, I can do, there’s a zone of control that I have. Like, I can control my actions. Maybe in your case it’s what you’re eating, how much medication you’re taking, your communication with your doctor. And then, there’s a zone outside of that you can’t control. Like, you can’t necessarily control whether your body is going to make antibodies. Like, it just kind of decides to do that sometimes. But yeah, it’s just, yeah, sorry, just went on my own for a while.

Ali:

No, no. It’s important. Yeah. Especially with social media. It’s very important.

Cheryl:  

Well, yeah. Especially with social media. And oh, yeah, the other thing I was gonna say, I don’t know whether you have a soapbox on this, but, I mean, this might sound controversial, but I honestly feel like you don’t get like a badge or a like, prize for controlling your disease one way or another. 

Ali:

Yeah. 

Cheryl:

Like, I don’t feel like when I was in unmedicated remission during my pregnancy, I don’t feel like that was like an accomplishment that I needed like a badge for versus when I’ve been on, you know, the maximum 25 milligrams of methotrexate injected with like the maximum amount of biologics and prednisone. None, like, I kind of feel like there’s this false hierarchy people get sucked into where like — just to be blunt — like, if you can eat the perfect diet and control your disease perfectly, like you get like, a prize. Like, we’re all gonna die in the end. 

Ali:

Exactly, yeah. 

Cheryl:

I’m like, we’re trying, like, we want to have the best quality of life we can have possible, you know. But sorry, do you have thoughts on that? I don’t want to put you in an awkward position.

Ali:  

No, no, no. It’s not awkward at all. No, yeah, absolutely. Especially with this diet I’m doing right now. Like, this is no way to live. Like, I don’t care if I see people like on Instagram who are like, I am in remission because I’m eating this very clean diet and exercise and I do that. Like, that’s great, good for you. But like, not all of us can do that. 

And you know I post about this all the time on my reels that like, you may want to live that life. But also, we may need medication. And that’s okay, too. It doesn’t matter. If you’re in remission, that’s great. If you need medication, that’s great too. Some of us need a little extra help. But we also want like, quality of life. We want to have fun. I want to go out and have some tacos. Like, yeah, there is no badge for however you handle the situation. And I always say, treat yourself after you inject, like get some chocolate, do something fun. But absolutely, yeah. No, I 100% agree.

Cheryl:  

Yeah, and I love that you’ve done a lot of work on, you know, against medication shaming, or like, it’s like a double negative. Like, anti-shaming people for taking Western medication. And again, like, it’s, I don’t want to invalidate if someone’s worked really, really hard. I know, people who sacrifice a lot and work really hard to like, be able to afford a clean diet or organic foods and have invested a lot, and that’s what they value and actually brings them like a sense of like, this is working. That’s working and that’s great. 

But yeah, I don’t — the part that I think can be toxic on social media is when you, people imply or outright say that ‘My way is better’. Like, you know, like, I’m like, I used to, you know, live a completely like quote-unquote ‘normal life’ on Enbrel and methotrexate, like, and I don’t think that that would have been — there’s some value judgement that I would have been ‘better’ if that had been able to be achieved through diet and exercise and like, quote-unquote ‘natural methods’. Like, the point is to get to where you can, you know, function in your life and have a good quality of life, so.

Ali:  

Yeah, absolutely. And all of our disease is different. It’s very progressive, or maybe it’s not, but yeah. That’s the point a lot of people don’t think about. Like, this is not just like, we feel like shit. It’s attacking our body, and we can have joint damage and things can happen, so.

Cheryl:  

Yeah. Yeah, actually, it’s interesting. I was talking to a naturopath about this, who I really trust. So, she has ulcerative colitis. She’s my naturopath, but I get advice for my stomach, and a little bit for the RA. But yeah, she’s like, you know, you’re just — you have a more aggressive form of RA. Like, you need the medication. It’s just like, some people, I would advise them if their RA is like, you know, really not severe and really not aggressive – like yeah, I wouldn’t go more all in. 

But she’s like, you know, a lot of people don’t understand that nuance. Not all RA is created equal, you know. But anyway, yeah. So, we could talk all day on our soapboxes, but is there anything else you would want, just now that I have you here in your wisdom, was there anything else you’d want the audience to know, or like either about methotrexate or just any parting words of wisdom?

Ali:  

Yeah, words of wisdom. So, I get a lot of DM’s about people just starting methotrexate. And actually, I wish I started sooner because I probably caused joint damage to my body avoiding it because I was so afraid. And at the time, I didn’t have a rheumatologist I could trust. So, I kind of felt like a guinea pig. I felt like she was throwing drugs on me. And then, you read the words low dose of chemo, which again, it’s very, very, very low dose; very low dose. And then, you get scared. But my best advice is to talk to your doctor about it. Straight up go to your doctor and say, “Hey, I’m scared. I’m scared of this. I’m scared of this. I’m scared of side effects,” and they’ll give you peace of mind. 

So, when you start methotrexate, it is scary, but you have a huge support system with us. We have a lot of friends on it. If you want to DM me, that’s great. I’d love to talk about it. But first, go to your doctor. Let them know what you’re afraid of and they’ll tell you, “Hey, we’re going to monitor you for every month. We’re gonna do some labs. We’re going to make sure nothing happens. We’re going to make sure you’re okay.”

Because a lot of people DM me and say, “I’ve been avoiding it for months.” And I’m thinking, oh, my God, their poor joints. Like, how are they walking? And because that’s what I did. I didn’t have any social media at the time. So, I waited. And I don’t know, I waited for seven weeks. And I really wish I didn’t do that because I could have really hurt myself. That’s when I got my knee drained seven times in a row. So, don’t do that. Talk to your doctor.

Cheryl:

Your knee drained?

Ali:

Yeah. It’s drained. Once a week for seven weeks. Yeah. Finally, at the last week, they were like, “You can get very sick if we drain your knee again.” So, I finally — they kind of forced me on methotrexate a little bit. But I was that person. I was that person that avoided it. I was so scared. I didn’t know anybody on it. I read the low dose of chemo, freaked out. But yes, please talk to your doctor. 

Cheryl:

Very common.

Ali:

Yes, absolutely. So, don’t wait. Write your list down. Either message your doctor on a portal, or go in person, and write. And they’ll give you peace of mind. I think that’s my best piece of advice. Also spoil yourself after you take it.

Cheryl:  

No, those are great. And I think one of the most common things I’ve seen, that you alluded to, is people exclusively comparing the possible risks or downsides of methotrexate and not considering all the potential benefits of it, methotrexate. And considering the potential risks of inaction. 

Like you said, the inaction, not taking the action of taking it, is a risk. And it’s very, very hard for humans to like, get that. But it’s like, okay, well, if you go out, if you think about an analogy, like sunscreen. Like, going out on the sun, if you have to have like, really pale skin like mine, you’ll go out in the sun for like four hours. Like, there’s an action I can take that would mitigate the risk, right, putting on sunscreen. But anyway, yeah, so it’s just —

Ali:

That’s a great way to put it. Yeah. 

Cheryl:

Yeah. It’s like, there’s all this really interesting health, public health research where it’s like, health promotion behaviors versus health detection behaviors, like getting a mammogram, which could like, detect an issue versus like a certain, like sunscreen that’s a protective — anyway, it’s hard. And I don’t, yeah, I think you’re very right to help — or sorry, no. You’re right. Like, you don’t need my approval. 

But like, I think that the more that people are exposed to the fact that like, not everyone has terrible side effects on methotrexate, like, you know, and that there is a risk of not taking it, and it can help them make a more balanced decision. 

And, you know, one of the best other things I’ll say real quick, is this nurse practitioner who focuses exclusively on rheumatology, Christine, who I’m going to have on the podcast, she said, you know, when people were really hesitant to start a med, I just tell them, it’s dating, it’s not a marriage. If you start methotrexate, and you feel like complete crap, you don’t have to stay on it forever. It doesn’t stay — it’s not like one of those birth control shots that like stays in your body for five years or whatever, you know.

Ali:  

Yes, yes. It’s temporary and you can always change. 

Cheryl:

Yeah, yeah. Yeah, exactly. And like —

Ali:

Just give it about two months. Because usually, two months. If you’re not feeling so good, give it about two months.

Cheryl:  

Yeah, yeah, that’s true. It can be kind of like some meds where the side effects are bad in the beginning, and then they go away, so.

Ali:

Yeah, ’cause your body’s got to adjust to it.

Cheryl:

Yes, thank you so, so much. This is just, I know this is helping so many people. I got such good feedback. I mean like, maybe I didn’t even say this yet on this part of this episode. But my most downloaded episode of all The Arthritis Life podcast has been ‘What’s it like to be on methotrexate’, so I’m just so grateful that you’re able to come back because I know people are dying to hear the update.

Ali:  

I love it. A lot has happened in three years.

Cheryl:  

Oh, thank you again.

Ali:  

Thank you for having me. I love talking about this. And feel free to slide into the DM’s if you have any questions. I love talking about it.

Cheryl:  

Yes, @AnotherDaywithRA. 

Ali:  

Yes. Thank you.

[Ending music] 

Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.