In today’s episode, Paulina, Ananthi and Jo share what’s new in their experience of taking methotrexate for rheumatoid arthritis. This includes discussions of having to titrate the dosage up or down due to liver enzyme numbers, decisions about whether to add a biologic medication in addition to methotrexate, and reflections on the emotional ups and downs of living with a chronic, unpredictable illness during a pandemic.
This episode is a follow up to episode 45 (which was originally recorded in July 2020), where eight patients shared their experiences taking methotrexate for rheumatoid arthritis or psoriatic arthritis. Today’s episode was recorded in the fall of 2021.
Episode at a glance:
- Paulina provides an update to her methotrexate journey and what has helped her cope with the ups and downs of rheumatoid arthritis
- Ananthi shares how she initially tolerated methotrexate but her liver enzymes went up so she had to fiddle around with the dosage a bit to get to a just right amount
- Reflections on the need to stay on top of tracking our bloodwork and take charge of our care
- Jo explains how she felt she wasn’t able to control her disease well with methotrexate alone but her doctor did not think she qualified yet for biologics, which was a very sad and frustrating experience
- Everyone reflects on how the pandemic continues to affect their ability to make appointments and see their doctors
- We reflect on the limitations of standardized assessments for rheumatoid arthritis
- Everyone gives a piece of wisdom for listeners
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
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This is 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:
Paulina Burzynska has been a 𝑅ℎ𝑒𝑢𝑚𝑎𝑡𝑜𝑖𝑑 𝐴𝑟𝑡ℎ𝑟𝑖𝑡𝑖𝑠 𝑊𝑎𝑟𝑟𝑖𝑜𝑟 since 2014. Paulina moved countries and became a yoga teacher focusing on healing through the body, mind and soul. She shines a real and raw light on RA throughout her journey on Instagram. Connect with her there: @with.paulina
Ananthi Ramachandran: I’m Ananthi aka @ar_versus_ra on Instagram. I’m 35 and I’m a Biologist. I’ve had RA for just over 1½ years and in that time I’ve been learning to live (physically and mentally) with my diagnosis. I use my Insta account to raise awareness of RA and give back to the community. My DMs are always open to all to answer questions or to provide a friendly ear.
Jo Mistreanu is a scientist living with Rheumatoid Arthritis who can be found on Instagram at @thejosphere
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:
- Links to things mentioned in episode or additional listening
- Mtx
- Speaker social media
- Paulina Burzynska @with.paulina
- Ananthi Ramachandran @ar_versus_ra
- Jo Mistreanu @thejosphere
- Cheryl’s Arthritis Life Pages:
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl 00:05
Yay. So hi, everyone, we are so excited to have some of our panelists back again to do our experiences with methotrexate part two. So, we’re going to start by just having everyone introduce themselves. Paulina, would you like to go first?
Paulina 00:23
Yes, of course. Um, so hi. I’m Paulina, originally from Poland. I grew up in the UK, and I’m currently living in Germany. Um, I am 24. I was diagnosed with rheumatoid arthritis in 2014 when I was 18. And it’s been an interesting journey.
Cheryl 00:47
Yes, yes. And you’re a yoga teacher extraordinaire.
Paulina 00:52
That’s true. I’m a yoga teacher, focusing on the healing part of yoga for our community as well as everyone else, because everyone needs a little bit of healing in their life.
Cheryl 01:04
That’s wonderful. Thank you so much. How about Ananthi next?
Ananthi 01:09
Hi, everyone. I’m Ananthi. I’m 35 and I’m living in the UK. And I was diagnosed with rheumatoid arthritis last year, so fairly new-ish. Yep, I’ve got plenty to talk about with the methotrexate. So, I’ve had an up and down journey with it. So, looking forward to sharing that with yourselves.
Cheryl 01:32
Thank you so much. And Jo.
Jo 01:37
Hi, I’m Jo. I’m originally from Romania, but have been living in the UK for the past five years now. I have been diagnosed with rheumatoid arthritis when I was 19. So, that was four years ago and have been on methotrexate for three years. And like everyone else in this room, I have things, plenty of things to say about methotrexate. So, I’m excited to share my journey with you today.
Cheryl 02:06
Thank you so much. And I am Cheryl Crow, the host of The Arthritis Podcast, you might have heard my voice before, and I just turned 40. And I got diagnosed with rheumatoid arthritis when I was 21. And I’ve been on methotrexate almost the entire time, except for my pregnancy and a couple years postpartum when we weren’t sure if we were going to, we were planning on trying for another baby. So, we stayed off of methotrexate for a little while, but the rest of the time I’ve been on it. So, that’s my in a nutshell version. So, last time, we shared our experiences with methotrexate overall and that was in the summer of 2020. And when we’re recording this now it’s the fall of 2021 in the Northern Hemisphere, so it’s October 2021. So, and Paulina, why don’t we go first with you? Would you like to share anything that’s changed about your journey? Or, actually, maybe summarize your, your journey with methotrexate and then share anything new. Does that sound good?
Paulina 03:06
Yeah, of course. Um, okay, so a little summary. Up until 2020 when we did the first part of this talk, I was put on methotrexate in 2014 when I was first diagnosed. I only stayed on it for six months, and I was put on the oral, so on the pills. And the reason why I only stayed for six months — and once again, this is a very quick snapshot to not keep this another two hours — I was only on it for six months because I did something I really, really don’t recommend anyone doing, and I just stopped taking the medication because I didn’t want to take it anymore. I was very convinced that everything I was doing is going to keep me super amazing and well forever. So, I stopped taking methotrexate after six months of taking it. Luckily for me, and I honestly think it was pure luck and a little bit of extra work from my side, for two years I was in remission. And in my terms, remission is still having some pain, but it not impacting my day-to-day life to a level where I felt that I needed to take medication because I know that everyone has a different understanding of what remission is. So, that’s what remission was for me.
And then two years after that, I moved to Germany and during my move, new climate, new people, new responsibility. It’s a lot of new stress. I think that sort of kick started my condition again and 2017 was it, yeah, my condition came back full force, double the force than the first time. So, I was put on methotrexate straightaway again, on I think it was 25 milligrams again. So, the really high dose, or at least for me, that was the highest I’ve been. And I’m, on this time, Germany does it that they put you on injections straightaway rather than the pills. So, I was on it. I have been on it up until twen — well, let’s say I’ve been on it. And last time we spoke I think I mentioned that I might have to start a new medication because my body seemed to not be responding to methotrexate as well as I wanted it to. And, and that’s basically what happened. So, now a new update. After 2020, after our first chat in October last year, so funnily enough exactly a year ago, I was put on a biological. I was put on Cimzia, and I have been on it ever since. I am still on it now. I also kept my methotrexate. My doctor said that she doesn’t want to increase my dosage of methotrexate because I managed to go down to 7.5 milligrams. But because I was on it for three years and she said, Well, the stuff that I’m experiencing, maybe it’s good to try something different. So, that’s what we did. And the biologic worked wonders for me. It actually shifted my current flare that I was having in that moment in October last year, pretty much in a few days, which was incredible. My elbow flare just disappeared.
And now, let’s say two months ago — because this is the crazy roller coaster that we’re on with Paulina here — two months ago, I was having a telephone appointment with my doctor, because all of the travels and everything happening in the world, I wasn’t able to go see her in person. So, I had a telephone conversation with her. And I basically suggested because I was feeling really well at that time, I suggested to her that we stopped methotrexate just to see how I feel. I was on a low dose, so I could just come off of it. And I’m very happy that I’ve got a very good relationship with my doctor, we trust each other. So, when she hears from me that I want to give something ago, she knows and trusts me that that’s sort of my decision, and I’m not going to take anything else for an answer. So, we agreed, and I took off methotrexate, I haven’t been on it for like eight weeks now. However, hi girls. However, I think I’m gonna have to say hello to methotrexate again very soon. Eight weeks have been wonderful to only have to inject myself once every two weeks. However, the past couple of weeks, I’ve had my usual introductory flare ups with my fingers swelling, itchiness, because that’s a random one I get, I get very itchy in the joints before I get a flare. Now, I’m not very bad just yet. So, I’m waiting a few more weeks because I am keeping my fingers crossed that it’s not because I’m not taking methotrexate, but it’s because we’re having a season change, and my body hates season changes. So, let’s wait a couple more weeks. And in two weeks time, I’ll make the decision if I will go back on methotrexate, maybe go on it once every two weeks, rather than every week and see how my body does then. But that’s a short slash long slash weird roller coaster update of the first part two now.
Cheryl 09:00
Yeah, and well, and I think for those listening who might have been, you know, recently diagnosed with other conditions, sometimes you think, okay, there’s one treatment, you know, like you have an ear infection, and maybe you take antibiotics, you know. But for rheumatoid arthritis, it’s actually very normal or common to have to play kind of, what’s the analogy? I want to say ping pong but that’s not really like it. Where you, you’re not really —
Paulina
Roulette?
Cheryl
Yeah, roulette. Yeah. A little bit like that, where you’re having to kind of try this, if we up the dose of one, reduce. So yeah, being able to be flexible with that, you know, mentally is important. Was it hard? Is it hard for you to cope, Paulina? I’m curious with some of those ups and downs are the unknowns. Like, is this — if I go off of it, is it gonna work? Or, you know, how —?
Paulina 09:52
Yes, so 100%. I mean, you know me, most of you here on the screen know me and maybe the listeners also, maybe not. I tend to stick to the good side, or the more positive side, that like realistic side. But yes, I’m a human, I have emotions. And every single change is not pleasant. Going back to this time last year, when I knew for a good few months that new medication is probably something that I’ll have to start. But the moment I went to my doctor, and she said, yeah, okay, this is your prescription for the new medication. It was insane. Like my body, my heart started beating super fast. My hands started shaking. I knew this is good for me, in a way, right, this is what I needed at that time. But then straight afterwards, I just went into the waiting room to have my blood tests done like I always do after seeing my doctor, and I just cried. Because it’s not easy to be like, yeah, I actually need this, I needed that extra medication. And then two months ago, roughly, let’s say two, three months ago, when I stopped my methotrexate, right, this is a good time. You get to take off a medication, you get to only prick yourself once every two weeks and only go through the ugh, stinging, ouchies, sort of plaster moment every two weeks, and not every week. So, that was a very good, happy moment. However, I’ve been having rheumatoid arthritis for a while now. So, I also, at the back of my mind, was aware that, you know, I’m coming off of this medication, I’m going to enjoy this happy moment. But yes, I’m also aware and realistic that it might not last, it might not work out, it might be different. And now having these flares, the last couple of weeks, I think it was like two days with my period coming, and all the hormones and all that beautiful jazz when my flare ups get worse as well during my period, it was like, just sad. Just like, why, I could be doing well. This is, you know, it’s like an internal fight. Like, one side of me is saying, “You don’t need this, it’s just a season change. This is just your period.” And then, another side of me is like, “Okay, well, I don’t want to push it because I don’t want to get like really bad and then have to slowly get back being better again.” So, as it’s trying to keep that balanced all the time. It’s hard, emotionally, physically, just to juggle all of that all the time.
Cheryl 12:40
It really is a roller coaster. And yeah, thank you for elaborating on that. Because I do, I know that there’s people listening right now who feel less alone. They feel like oh, everyone else has an easier time than I do. But it really is. It is challenging for everyone. So, thank you. I want to hand the mic over to Ananthi. And would you like to share a little bit of your synopsis of your experiences with methotrexate and anything that’s changed since the summer of 2020?
Ananthi 13:11
Sure. So, when we last spoke, I had literally been on methotrexate for about two weeks, I think. So yeah, it was because I got diagnosed in the pandemic. So, in a nutshell, there was a bit of a delay with me being seen. So, I had my blood test, which showed a very obviously high rheumatoid factor, and got sent straight to the specialist at the hospital. But unfortunately, that hospital appointment got cancelled, so that was back in April 2020. So, we’re talking height of COVID here. So, I was kind of left to my own devices for like, two, three months. So, I eventually got seen end of June and my rheumatologist put me straight on methotrexate and of course steroids as well. So, I kind of had the two hand-in-hand. So, in most cases, the steroids are a temporary fix. Obviously, some people do need it longer and that’s okay as well. But in my case, I was only on them for the six weeks, like a tapering dose gradually, and I was left with methotrexate. So, I was on 15 milligrams in tablet form, so, I’m taking that on a fortnightly basis, so I was just getting used to that. And because when you — well in UK, at least — when you first started methotrexate, they make you go for fortnightly blood tests initially. And so, it’s every two weeks, and then it goes into monthly, and then it can get more and more spread out. So, I finished my fortnightly blood tests. And then I went into monthly and my inflammation markers were going down, down, down. So, that was lovely to see. However, liver enzyme was going up, up, up. So, I was kind of watching that.
So, I think, if I remember rightly, and there was like the range that I was given, don’t ask for the unit’s. But it was between one and 34; it was a good range. So, I think the first time I flagged it, it was 37. And the GP was like, hmm, okay. It’s like some old GP, like a primary doctor for the other countries. But yes, so. Yeah, so 37. So, they just said, I’ll just see the next time. The next time around, I think it went up to 50 something. So, at that point, I run the Hospital Helpline. I said, listen, I’m a bit concerned. It’s going up to in the 50s. And they said to me a very interesting thing of, so for most people, yes, we look at one to 34. However, you’re on methotrexate, and you’re on it for rheumatoid arthritis. Therefore, we’ll only get alarmed when it goes above 70. So, in my head, I was thinking, really? Is that normal? But anyway, I kind of gave it another month. And then lo and behold, it flew up to 80. So, this had taken me up to like the end of December, end of December 2020. So, at that point, I called the helpline, they categorically said, yes, we have a problem. So, they told me to come off methotrexate completely for two, four weeks, and have a blood test to check what my liver was doing then. And at that point, depending on those results, will they decide what to do with the medication.
So, also at this point, they were asking me whether I had been drinking or anything like that. And at that point, I was actually really, really good. I was, even though it was Christmas. I may have overdone it with the chocolate a bit but I didn’t touch any alcohol because I was terrified of the alcohol and methotrexate relationship, and especially with my liver doing what it was doing. I wasn’t going to go there. So anyway, I came off methotrexate for two weeks, did the blood test, and my liver dropped back into the 20s. So, from 80 into the 20s, that kind of shows the effect that it was having at the time. So, the guys at the hospital, they were very nice, so they dropped the dosage from 15 milligrams to 10. So, I was kind of excited, I thought, wow, this is kind of a Universe-given opportunity to reduce the dose, can I do this? So, I was then, in my head, I was like, fixated on managing with this dose from now on. And to be fair, I did. So, I saw my rheumatologist again in April. So, by that point, a few tweaky pains were coming. And I was battling with myself of should I put up with this pain and stick with 10? Or should I —? Because I know how I felt at 15. And that was as close to zero pain as possible. So, I was thinking with 10, do I handle a bit more pain and stick with the 10? Or what do I do?
So, my rheumatologist, he just gave me a lot of options. He said, it’s totally up to me what I choose to do. He said, I can up my dose, or I can combine it with another drug, or see how it goes. He did say to me that with methotrexate, and I don’t know whether anyone else has noticed this, but to give it a good 12 weeks before you make a decision. Because methotrexate effects aren’t instant, whether you’re coming up, whether you’re going down, you need to wait it out to see until it stabilizes to see what it’s truly doing to you and how you feel with it. That’s what he said to me. So, at this point, it was around the 12-week mark. So, I think I gave it about another three, four weeks. And then I just decided, I don’t think this pain is — number one, I probably could put up put up with it. But my underlying fear was, would me putting up with that pain cause underlying damage? And I did not want did not want that at all. So, I, instead of going up to 15, which I knew was having an effect on my liver, I’ve since upped it. So in June, maybe July, June or July, I upped it to 12.5. So, I’ve gotten in between. So again, that took a bit of self-battle, I would say, to accept that I was going back up, but also I recognized that I needed it. And it’s very much a trial-and-error game or roulette as we call it. You’ve got to do what you need. And your body will tell you, so you basically have to trust that. So yeah, so 12.5, I’m back on the monthly bloods. And there was — I did notice a slight upward trend. My last blood test showed you’re going back down again. So, I’m hoping this is my sweet spot where both liver and joints are happy. But it’s not been long enough. So, we will see. But so far, it’s okay on 12.5.
Cheryl 20:15
That’s so great. And it really is fascinating how certain things, it’s like, if you go over a threshold, then all of a sudden, the numbers get higher in proportion, you know. Like, you wouldn’t — the difference between 12.5 and 15 for your liver is a lot bigger than just that little amount. Does that make sense? Paulina, did you want to add? Are you —?
Paulina 20:36
I have a question, actually. Did you — because I remember, I heard you saying that you were like monitoring your blood markers for your liver? And did you have to monitor it going up? Or was it the doctors monitoring it and letting you know? Or did you have to like, keep your —? I mean, I think you know what I’m trying to say?
Ananthi 20:58
I know what you mean. So no, it was me. So, I’m a bit of a — I’m a bit of a results nerd. I like to trend my results. So, that’s where the Excel spreadsheets come in. So, I do funky graphs. But actually, since then, my doctors have now got an app. And the graphs are on there for me. So, yay. But yeah, it’s, uh, at that time, I was very much trending my data, because I wanted to see for myself what was going on. Because also, when I reduced from 15 to 10, I noticed my inflammation markers were rising. They weren’t anywhere close to what they were originally not even close, but they were high for me. So again, I wasn’t too happy with it showing up in my blood work as well even though I could quite happily say I can cope with the pain. If it’s showing up in your blood work, then I didn’t want to argue for those kinds of results.
Cheryl 21:54
Yeah, Paulina. We’re on the same wavelength. I had the same question. And I think, at least in the United States, I know that if any of my blood work is out of the normal range, it does get flagged to my rheumatologist and they’re supposed to follow up. But I’m not sure if it’s that the way — that’s just my doctor, it could be different facilities, but you would hope that they would, someone would be monitoring that that it would get flagged in quote-unquote ‘the system’. Because not all patients have the same health literacy that you do.
Ananthi 22:29
Yeah, it’s true. So, with the with your family doctor, like the GP in the UK, what I found is that they will contact you, or they will say that the result is of concern, or whatever. And then they will — and you get a kind of an automatic text message as it were to say, oh, please call make an appointment. You make that appointment, and then they tell you anyway, it’s best to speak to your rheumatologist. And they’re separate. They’re in the hospital. So, my particular hospital has a rheumatology helpline, and it’s run by the nurses. So, I just, I skip my doctor and I go straight to the helpline. Because it’s quicker, basically. And also, if they don’t know the answers themselves, the nurses will just check with your doctor and get back to you. And I find that quite, it’s an unmanned phone line as well, you just leave a message and they’ll get back to you within 24 hours. So, that’s really helpful.
Cheryl 23:29
That’s so great. And can you remind the audience, your intellectual background or academic background?
Ananthi 23:38
Yes. So, I am a biologist, which is probably explains why I geek out on stats — well, not stats, I hate stats, but just graphs and lab results. And, yeah, I’m my own kind of study subject, I guess.
Cheryl 23:53
No, and that’s a great way to long-term, you know, be what I call like the CEO of your care team. Like, you are the nucleus of your care team, and you’re the one that’s going to be living with the implications of all your decisions. So, the more empowered you can be, the better. I see Paulina is ready to share too. Yeah, anything, please. This is like a open conversation.
Paulina 24:20
Yeah, no, I actually just wanted to sort of repeat what you literally just said, but in a good and a bad way. It’s like fortunate and unfortunate that we sort of have to become our own doctors in a way, or our own care team. Because yeah, no matter which country you’re living in, or what sort of relationship you have with your doctor or the system in that country, it’s still us. Like, your own health, that really is in the line. And there’s one of you and one of what you’re looking at, whereas the doctors have like loads of patients to look after. So, it’s also in a way understandable if they miss stuff, or if they are not on top of it as maybe we would want them to be, which is unfortunate. But then, also fortunate because I feel that when we spend time — and I do the same, I have no biology background whatsoever, or like medical background — however, I stay on top of my blood results all the time. Because it’s also empowering. I feel like it builds up my confidence, and it built up my confidence about my condition and how I can help myself rather than having that feeling of relying on a doctor to tell me where I’m at or how I’m feeling or what to do next. I feel like understanding at least the key blood results, the key markers like the inflammation markers, the liver markers, I feel like at least understanding those helps me feel a lot more confident. And it’s sort of like a — like a, yeah, I know what I’m doing when it comes to health condition management in a way.
Cheryl 26:02
Totally. And we always get to this topic of you know, ‘If I ruled the world’, but if I did, really, there would be like a very rigorous, you know, maybe multiple weeks, you know, weekly check-ins with different providers when you first get diagnosed to like, ramp you up. Like, I would literally call it like Arthritis School or something like that, you know, because like, I’ll say I always give us example. But when I got diagnosed with gestational diabetes, I was given an immediate appointment with diabetes educators, they trained me what do your insulin numbers mean, what can you do, la-la-la. And it was like, so helpful, but I never got anything like that with rheumatoid arthritis, which has, for me, been, it’s been a lot more complex to manage. So yes, Ananthi.
Ananthi 26:48
Yeah, I was just gonna add on that. Because rheumatoid arthritis is, it’s not one of those that — it’s not like a text — it’s not a condition with textbook symptoms, in the sense that everyone experiences it differently. So, I think in that, it’s very important to communicate what you’re feeling, how you’re feeling to your doctor, because they can’t assume that everyone is the same. And they don’t, because they know. So, I think it is very important that you do advocate for yourselves. And just because one dose of a medication is working for one person, it may not work for you. So, I think it’s important to have that conversation.
Cheryl 27:25
Yeah, absolutely. Absolutely. And you will, you know, become what they call a lot of doctors and health people will say the patients are the expert in their own care, or their own experience of their care. And so, there’s all these models now, like, you know, shared decision making as a best practice in rheumatology, meaning the decisions are made not just by the doctor as the voice of God telling you must do 12 milligrams, so you must do 10 milligrams. It’s a conversation back and forth, between the providers or the health, you know, health professionals and the patient. So, yeah, this is so great. Any other questions for Ananthi before we move on to Jo? I appreciate all the objective data that you’re able to track. And yeah, I think if nothing else, those listening, you know, this is a good reminder to always check your own blood work as well and make sure you get on things right away. So, how about you, Jo? Oh, sorry. Sorry, we’re gonna add more.
Paulina 28:31
Yeah, because what you just said, like, check your own blood work. And in addition to that, so check out your own blood work, and take it as an empowering activity rather than a, “Ugh, I need to check my blood work because my doctor doesn’t do nothing.” So, take it like I’m taking control. And it feels amazing to take control of myself. So, I’m going to check my own blood work, because I’m a doctor now.
Cheryl 28:56
Yeah. Yeah, no, that’s so true. It’s being this quote-unquote ‘CEO of your care team’. I always say it’s a blessing and a curse, right? Because sometimes we don’t have the mental spoons. We’re like, I don’t want to think about this anymore. I don’t want to learn any more about my condition. I just want someone to tell me what to do. You know, that’s how I felt after my son was born. I was like, I don’t want to — I don’t, I don’t know what to do. I’m overwhelmed. Someone just tell me what to do. But other times, you know, we have that capacity to say, like, I want to be empowered. I want to make these decisions. So yeah, context matters, too. But how about Jo, how was your experience then since July 2020 with methotrexate?
Jo 29:41
I think post July 2020 up until now, everything — personal, professional, health-related — it has been a roller coaster. So, at this point in time, it’s quite difficult for me to say that how my health has been for the past year has either been because my medication isn’t necessarily working anymore, or because of the stress that has popped up in different few times over the past few months. So, pre-July 2020, I had been on methotrexate for two years? Yes, two years, because I only started taking it a year after I was diagnosed, which is something that I still regret doing and not taking it as soon as my doctor told me to. Excuse me. So, I was diagnosed back home in Romania during a university holiday. So, I was still living with my parents. And my mom is a huge advocate of — she’s not a fan of Western medicine, let’s put it like that. And she had a massive influence on me not deciding to take the methotraxate as soon as it was given to me. And, you know, I was 19 at the time. I thought, It’s me against the world. I’m not going to take methotrexate. I’m just going to — this was my mentality three years ago — I’m just gonna take steroid for the rest of my life and manage my condition like that. But sooner I realized that that’s not possible. I can’t be on steroids for the rest of my life, because the side effects are not pleasant. And yes, they help with the pain, but it’s just a temporary solution. It’s not long-term, it’s not sustainable. And one year, I decided to spend the next university summer holiday in the UK because I found a job. And that’s when I decided to see a rheumatologist here, and decided to take on the methotrexate.
And when the options were put in front of me, either pills or the injections, I was so scared of needles. Like, the thought of injecting myself weekly it was, it was terrifying to me. So, I decided to stick with the pills. But the side effects I was getting from the pills, I was bed bound the next day. The nausea, the headaches, migraines were just — I could literally not do anything. It was literally like my week was six days instead of seven, which when you’re a university student doesn’t help your academic or your social life. And I took this to my doctor, and they did recommend me going on the injection. And as you guys have mentioned, it’s these changes this sort of make you break down a bit and scare you. And I think the first injection I took, I was with a nurse, because the first, here in the UK, the first two or three injections, someone is supervising you to make sure you’re okay and you’re able to do this on your own. And it took me I think, between 30 minutes and an hour to do that first injection. And I think the adrenaline was so high that I didn’t feel anything, so that was that was great. And then the second one all it took me about 20 minutes, which was an improvement from the first time. And then I stuck with the injections, which at that time, I think I was on 20 milligrams. It didn’t really give me a side effects. They were like minimal. But yeah, so this was pre-summer 2020, I was doing fine.
But since then, I have — I’ve graduated from my master’s which is a huge achievement. But after that came to downfall because I struggled with unemployment, and just be trying to find a job in the middle of a pandemic is not ideal. I would not recommend. But yeah, it was the truth of adulthood and I had to find a job. And what else happened? I moved houses in the past year. I had lost friends in the past year. So, like I said, it’s hard for me to say if I personally feel like my health has been decreasing over the past year, so I don’t know if it’s because my medicines aren’t working anymore or if it’s because of this constant stress that I felt like I’ve been under for the past year or so. I have, like Ananthi said, it’s quite difficult to see your doctor these days. So, I think in the past two years or so I’ve only seen mine a couple of times. And I did tell them that I don’t feel my medication is working anymore. And for a while, I also thought that my joints were hurting more because I had gained weight. But I managed to look to lose that weight and I still felt not very great. So yeah, I went to see my doctor. I was really hopeful they’d put me on biologics, because I did call the helpline, my hospitals helpline, which as a result of that, I managed to get my appointment. And they did say we could put you on this biologic, which, for me, was quite exciting prospect saying that I didn’t feel like my methotrexate was working anymore. And at that appointment, I literally broke down because I felt like nothing that I was telling my doctor was coming across, which is quite difficult, because I think I wrote a couple of pages of notes, just to sort of prove that I have been feeling worse, and here are the facts. And they do this thing when I think they measure your disease activity. And one thing that I’ve noticed after the over the past year or so has been increased pain and inflammation in my feet, which unfortunately is not included in that disease activity assessment. So, from their point of view, there was no reason for me to be put on biologics. So, Paulina just asked, what is the assessment? Basically, they feel all of your joints, and first of all, they see if they feel like swollen or tender. And they also ask you if it’s hurtful or painful. And at that point, which is also I think, a bit — it’s not really accurate, because if it’s a good day and you go to the hospital, it doesn’t hurt then.
Cheryl 37:11
Yeah, I think it’s the — I think, I’m guessing it’s the DAS-28, which is the measure of disease activity for rheumatoid arthritis. And yeah, and I’ve chatted about this with my rheumatologist. It’s, you know, it’s hard because there’s, if there’s any tenderness at all, you’re supposed to say, you know, yes. But it doesn’t differentiate between mild, moderate, severe. And then what is that tenderness? And what is that pain preventing you from doing in your life? At the end of the day, the reason to control these diseases is so that we can actually function in our lives. And if, regardless of what the scales say, if you can’t function your life, that’s a problem, you know? Oh, sorry. Ananthi, you have your hand up.
Ananthi 37:53
Yeah, I was just, I’m so sorry, Jo. I feel you but I don’t understand — I don’t understand how the feet aren’t included in that score. Because if you if you think about it, your hands and your feet have the most bones in your body. So, you’ve got the most joints. So, what’s RA, joint pain, right? So yeah, I just wanted to voice my frustration for you, Jo. That was what that was for.
Cheryl 38:20
Yeah, swollen joints out of the 28, quote-unquote ‘the 28’, the 28 joints that are examined in this assessment. And, you know, RA, yeah, like an auntie says it affects the joints, particularly that have synovial fluid in them. And the synovial fluid is in the joints that move the most, and so little toes that are flexible, yeah, are included in that. Yeah, yeah. Paulina?
Paulina 38:45
So, I think I mentioned that in our part one as well, about this whole assessment jazz. I think maybe I’m coming from the side because I have a comparison of how I was treated and looked after in the UK versus how it is now in Germany for me. And in the UK, I remember now, now that you mentioned this like feeling of the joint, oh, my goodness. I would laugh in their faces. When I was first diagnosed, I was not this person. I was someone very different. I would just laughing their faces when they did that. And that stick man that you have to circle all the joints that are hurting you right now? Ugh. So, I think I mentioned that in part one. But in Germany, they do a similar assessment when you go into the doctor’s office and you’re seeing your doctor. However, before you go, and even when I go in just for a blood test, I always have to fill it out fill out a form. And the form is the assessment that I believe is the one that we should be getting. So, it has I think 32 questions, and each question has three potential responses. So, the responses are ‘Yes’, ‘Yes but with pain’, or ‘No, not at all’. And the questions are — Can you take a shower? Can you write a letter? Can you run 100 meters for the bus? Can you stand in line for 30 minutes without seating, like without having a seat?
So, I feel like these ones are a much better representation because yeah, like you just said, Jo, you go into the doctor, and that day, you’re having an amazing day, because obviously, the joints are scared of the doctor. So, they go away, and they’re feeling amazing. So, on that day, you’re feeling super fab. But then yesterday and the week before, it was completely different. Whereas I feel if you have these more like questions relating to real life, not just your physical body and how it’s showing, that, for me, when I first got that assessment, I was like, wow, like, now the doctor can truly understand what happens in our life. And it makes me feel like I’m understood a lot more, that it’s not just a joint condition. Because that’s just like the smallest part of living with rheumatoid arthritis, is worrying about our joints. It’s actually the day-to-day stuff that we are dealing with. And to have these questions at a doctor’s office just like put them on such a good note for me. So, summing it all up. I am just disgusted by the system, about this whole joint stick man circles. Literally, let’s laugh in their faces, protest, and do everything. But it’s okay. This is just me going OTT a little bit.
Cheryl 41:42
No. Well, and I love I mean, it’s so funny because I can — I always say, when I became an occupational therapist, I actually didn’t do it with arthritis in mind. I wanted to help children with developmental disabilities. And I learned so much that helps with arthritis in occupational therapy school. And one of the things that we do, and I’m always like, thinking through the occupational therapist lens is like, we look at how does your condition affect your ability to function in your individual life context. It’s going to look different. Like, somebody who has 20 swollen joints out of 28, who’s a truck driver and has three kids is going to be different than somebody who is a video game streamer — I’m thinking like the most random jobs — or teacher or, you know, a grandparent, and there’s so many. Your life context interacts with your physical state. So, it’s so bizarre to me whenever people only look at the physical objective measures, because that just doesn’t tell the story at all. Anyway, so soapbox. But back to Jo, sorry. It was like your story made us just really get on our soapbox. Yeah, but no, you should, you know, I’m so sorry. So, we left off in your chronological story that you were having severely increased, not just pain, inflammation, but just difficulty functioning in daily life. And your doctors were like, let me just touch these joints and count how many are tender and make this decision. So, then what happened?
Jo 43:19
So, I literally just broke down because it seemed like all of those notes that I emotionally had to like, find the power to write all those things that have happened to me over the past year, and me telling them to this person that I haven’t seen before. I don’t know if it’s — I don’t know if Ananthi can relate. But I don’t think I’ve seen the same rheumatologist twice. So, it’s literally just a different random person seeing every time I go in, which is another thing about the system that sort of bothers me. But that’s another discussion. But basically, it and I was telling her look, I came here today because over the phone, you told me that there was this possibility of you putting me on biologics. And then she said, because of your disease activity score is not high enough, we don’t think we should put you on biologics, but we can increase — I’m also on sulfasalazine, by the way — but we can increase your sulfasalazine back. Which I was on a higher dose of sulfasalazine before but it wasn’t compatible with me and it just seemed crazy to me that they suggested something that I was previously on that didn’t work.
But anyway, and later on she came back with her supervisor which is because they’d have to discuss their plan for you with consultant doctor or whatever. And that person came in the room, the consultant, which is a doctor that I’ve seen before, so I was very relieved to see a familiar face. And she explained to me very nicely and in a way that made sense to me why I’m not being put on biologics, and why things are the way they are. And she’s basically told me that because you said that painkillers don’t work and anti-inflammatories don’t work, we feel like there’s not enough inflammation in your body. So, giving you biologics and something stronger would actually have worse side effects than they will help you because of this low level of inflammation. So, they’ve given me amitriptyline, which I think is — it’s a, I think it’s usually used to treat depression, but at some level, it overlaps. And it helps. It helps with pain and I was really happy, I was having trouble with sleeping as well. And that also helped me sleep better. So, it was a very interesting appointment that I had. But and I’m not really sure that I am happy with the outcome, but at least I’m moving forward with the treatment that they’ve given me and just see how I go. And if things go better then yay me, and if not, then I feel like I can’t live like this for the rest of my life.
Cheryl 46:35
Yeah, I’m sorry. Yeah, I guess it’s hard to follow up. And I don’t want to speculate too much on, you know, like, we’re not obviously doctors, you know, so, you know, that they gave the best recommendation that they felt at the time. But yeah, that a lot of it is just saying, okay, you know, what are the baby steps I can make today? Like, you’re saying, okay, can I take this measure? And is it improving my sleep quality? That’s good, because better sleep is correlated to better, you know, less fatigue, and less inflammation, and less pain. So, you know, and then maybe long-term, they’ll cycle back and say, okay, yeah, now you’re, you know, now we think biologics might work for you. So, it’s hard when you enter into an appointment with like an expectation, like, I think we’re going to make X change and then that gets kind of derailed. It can be a very kind of powerless feeling. Because you ultimately, you can’t just go to the store and get a biologic if you want one, right, you have to have the doctor’s recommendations. So, I’m going to pause for just one second. Thank you, Jo, so much for sharing that. I think that a lot of people, again, are gonna resonate with the, you know, crying in the doctor’s office. I mean, we can have a club or like a sticker that you get, like ‘I’ve cried in the doctor’s office’, you know? Yeah, it is. I’ve also cried in the bathroom, in the waiting room. You got to hold it together till afterwards and then cry. So, I mean, I’m smiling now. But yeah, it’s just to say that, you know, it’s totally common, it’s very, can be very overwhelming, but I’m glad that the new medication they gave you is helping with sleep. Because yes, sleep is such a good foundation for everything. So, just to wrap it up with you three, I would love to just give you a chance to share anything else you want to share with the audience, you know, about wisdom. I know you are all so wise, you know, wisdom for the audience on, you know, living and coping with rheumatoid arthritis and all these ups and downs, or just anything, anything else you might want to say. This is your chance to go on your soapbox. That’s what I like to do. Would anyone like to go first?
Ananthi 48:57
Okay. So, okay, so I would probably say, just because of the unpredictable nature of RA, I think we’ve all experienced the whole we wake up each day and feel different. So, based on that, I would probably say an approach that I’ve taken in the last year is to take a day at a time. I kind of have before I — before I kind of had, especially when it comes to my job, I kind of have a to-do list like for each day. But now I can’t bank on the fact that I’m going to be productive on a day. So, now I have — I’ve spread that to-do list over a week and I kind of split it into kind of easier tasks, and then hard, like the normal tasks. And so, depending on how I feel on that day, I work through each part. So, Wednesday’s is my — hopefully no one from my job will see this because you will this will explain why I’m zero productive on a Wednesday — that’s my methotrexate hand over day. So, Wednesday’s tends to be my life admin, kind of potter around, look busy, tidy the lab, and just kind of hide in the corner and hope they won’t speak to me kind of day. But it’s my — that’s how I kind of get through the working week, I guess. Yeah, just taking a day at a time. Do what I can, make it Wednesday. Exactly, Paulina. Yes, fake it till you make it, until you go to bed. But yes, it’s, I would say that that’s pretty good. And also, I know we’ve got the queen of yoga on this call as well. But before I started RA, well, before I got RA, I was a very avid gym goer. I didn’t believe exercise was a thing until I was breaking a sweat and dying on the floor. This is not the case, any movement is key. It really does help. Even if it’s a leisurely walk, it’s yoga, it’s stretching. Everything helps. So yeah, I would I’m a real advocate for movement. And it doesn’t have to be sweating movement.
Cheryl 51:12
So true. I’m exactly in the same boat. I used to be so hardcore. And now I’m like, you know, if I dance for five minutes, that’s awesome. You know, that’s getting my blood pumping. And yeah, I love it. I love it. Thank you Ananthi. And that tip about spreading your to-do list over the week is so, so smart. I literally made me feel the sense of relief just thinking of it that way. Because then you avoid that kind of feeling where you’re like, it’s two o’clock in the day, and you’re looking at a to-do list, you know, like, there’s no way I can get through this, you know, the rest of this. And you can just say, oh, this is just my week to-do list. I have the rest of the week. So, I love that. Paulina, did you want to go next?
Paulina 51:53
Yeah, sure. Um, before I go into the actual tip I wanted to share, I’d love to add on into this to-do list. So, make a weekly to-do list, take off the stuff that you do, separate them into like, hard, challenging, et cetera. But when you do something that’s not on the list, add it into the list and tick it off. It feels so good, damn good to tick stuff off that it wasn’t on that. Even simple things like I’ve changed my bedding, or like I’ve had a shower, add it to the to-do list, tick it off. Because at the end of the day, or like at the end of the week, if it’s like a whole weekly to-do list, you’ll look at that list and you’ll feel so proud of how many ticks you have on there. Just from the simple things of like, I got out of bed today. Tick that. Hey, I changed my bedding, I brushed my teeth; tick it. It feels good to just tick stuff off. Sometimes, just add stuff on that after you’ve done them, not before.
Cheryl
Love it.
Paulina
And my tip. So, we’ve mentioned so many amazing ones throughout the whole podcast and in all of the other ones. And when you talk to us on social media or listen to the other amazing podcast from Cheryl, there’s so many tips on there. But there’s one that I wanted to share that only became true to me probably in the past year or maybe more like six, seven months. And I’ve only just realized it as a good thing. Before, I wasn’t ready for it, so I’m saying this tip and if it doesn’t resonate with you, that’s also completely fine because it didn’t resonate with me until like six, seven months ago. My tip is you are not just rheumatoid arthritis. Like, there is so much more about you. There is so much more about your life, about who you are. And it’s really easy to get hung up on just living a rheumatoid arthritis life. Like, eating the stuff, the medication, the blood tests, the doctors, the how-am-I-feeling, the giving yourself what you need in that day because you have that condition. But really, we are so much more.
And I think the tip that would link to what I’m trying to say is to find something that you love doing that has nothing to do with your condition. Because overpowers our life, especially in the beginning of our diagnosis, or in any changes in our condition. It takes over so much power of our life, of our hobbies, of our relationships, even our relationship with ourselves, that taking a moment to just be like yes, I have rheumatoid arthritis, but I am not rheumatoid arthritis. I am, you know, I love doing this, I love doing that. I am this person, I am that person. And trying to take a moment to connect to who you truly are on that deeper essence, on that deeper — yeah, that without using like Yogi terms, these woo-woo terms — without using all of these terms, but just trying to connect to your nature, like to your natural, deeper nature; the state that you were at your most balanced, most healthy self, without all of the other societal things that were put on you, the responsibilities that were put on you, the health conditions that were put on you, the titles, the jobs, all of this. When you strip all of that apart, just trying to connect with who you are truly, and doing more of the things that feed your soul, would probably be my tip. When you’re ready for it. I wasn’t ready for it until like six, seven months ago. So, like I’m saying, it means a huge lot to me right now to acknowledge that there is so much more to me than — I mean, ‘than just’ is a really incorrect term I don’t want to say ‘than just rheumatoid arthritis’, but yeah, than just rheumatoid arthritis. It’s just a part of who I am. But there is so much more, and try to not lose touch with that.
Cheryl 56:25
That’s beautiful. I’m going to turn that into its own sound bite because that’s so beautiful. And I think I’m just going to piggyback on that just really quick before moving on to Jo, because I think one of my little, one of my ‘Aha!’ moments has been really saying, “What can I do now today in my current life?” not, “How do I become the perfect RA manager so that I can have this better future,” because of course, we all want a more pain-free future or less painful future, we want a happier future. It’s just part of being human. So, you know, we always want more. But instead of making your whole job about managing your RA perfectly, or doing the perfect diet, or the perfect whatever, saying what can I do today? Can I connect to my core being and what brings me joy, like Paulina said. It’s so empowering. It’s such a relief to take away that burden to be the perfect patient. And so, can you tell I’m a recovering perfectionist. I hate the word perfect now. Like, it’s a bad word. So, thank you. I’m so inspired. Okay, Jo, what would you say?
Jo 57:37
I feel like where I am right now with my arthritis journey, I don’t feel like I’m in a position to give any tips. I think what I’m gonna say is more like an indirect tip. And also, this is just a reminder that arthritis is not just joint pain. And I wish I knew this when I first began. And there are a lot of places to spend, so to say. And also, try not to compare yourself to all of these Instagram accounts that you’re following. Because this is something that I’ve been doing over the past year. And it’s not the best thing to do, especially when you feel a bit stuck. And because arthritis is such a huge umbrella. And we all, this starts from our different medication routes. I think you could pick, I don’t know, 10 to 15 people in a room, people with arthritis in the room, and they’re all being different medication, they have different stories, and that’s okay. And it’s just important to just focus on yourself and focus on your journey and do what makes you happy and feel accomplished despite of the pain.
I feel like I have let pain pay a big part of the past year or so. But I’ve met my current boyfriend which I’m very grateful for. And he’s just, he’s helped me see that life is more than just arthritis, like Paulina said. And I’ve just been doing all this stuff that I would have said in the past, “Oh, I can’t do this because I’ve got arthritis.” I’ve just learned to ride a bike at 23 which, if you told me like a year ago, I would have laughed in your face. I’m taking driving lessons, which again, if you told me that a couple of years ago, I would have said yeah, that’s not happening. I’ve been going climbing, and I think Paulina said it perfectly — your body’s not just arthritis. And, you know, it is sad that this is something that we have to live with but I feel like in a way I wouldn’t have come this far and enjoy life with all of this, with all that’s going on, if it wasn’t for arthritis, which is a very strange thing to say, I think, that I feel like, there is greener — the grass is greener on the other side. And there will be some tough signs, but they definitely help. It definitely helps appreciate the good times even more.
Cheryl 1:00:35
That’s beautiful, you said it that you didn’t feel in a good place to be able to share wisdom. But that was very wise. I’m thinking here like, oh, my gosh, she’s only 23 and she’s learned these lessons that I’m still learning at 40. So, you know, thank you all so, so much. I really, really appreciate your time. You know, I, again, I know that there’s going to be a lot of people who feel more supported and less alone through listening to your journeys. So, thank you again.
Paulina
Thank you.
Ananthi
Thank you.
[…] was originally recorded in July 2020. You may also be interested in episode 58, which includes an update from Jo, Paulina & Ananthi from fall […]
[…] may also be interested in episode 58, which includes an update from Jo, Paulina & Ananthi from October […]