Patient PrepRheum is a podcast series hosted by Naomi Creek, GHLF Australia’s National Coordinator,
who has lived with rheumatoid arthritis for over 40 years.
In this series, Naomi speaks with fellow patients and renowned doctors to explore important and often-misunderstood aspects of living with autoimmune arthritis and related conditions in Australia. Listen to interesting, relevant discussions with people who live with arthritis to help you feel more empowered.
PATIENT PREPRHEUM EPISODES
Check out all seasons of Patient PrepRheum below and wherever you listen to podcasts. Be sure to subscribe for access to future episodes. Tell your family and friends to listen too, so they understand more about what you’re going through.
SEASON 4 – LUPUS
Lupus (SLE) is an autoimmune disease in which the human immune system becomes hyperactive and attacks healthy tissues. Symptoms can affect many different body systems, including joints, skin, kidneys, blood cells, heart and lungs. While there is no cure, lupus can usually be managed with medication and lifestyle changes.
The four main types of lupus are neonatal and paediatric lupus erythematosus (NLE); discoid lupus erythematosus (DLE); drug-induced lupus (DIL); and systemic lupus erythematosus (SLE).
In this season of Patient PrepRheum, host Naomi Creek is joined by Professor Eric Morand, a renowned rheumatologist and lupus patient Julie Norris. Across two episodes, they help us to understand lupus, how it is diagnosed, the advancements in new treatments and what it’s like to live with such a complex condition.
Episode 1: A New Horizon for Treating Lupus
In our first episode, host Naomi Creek discusses all things lupus with Professor Eric Morand, a Sir John Monash Distinguished Professor, a physician-scientist and Dean of the Sub-Faculty of Clinical and Molecular Medicine at Monash University. He is a clinical rheumatologist specialising in systemic lupus erythematosus (SLE) and is Head of the Monash Health Rheumatology Unit.
Professor Morand provides an insightful overview of lupus and its symptoms and shares the challenges of diagnosing and treating lupus due to its complex nature. He highlights the importance of achieving early diagnosis to minimise damage to body organs. Professor Morand also talks about the role of genetic factors and the need for patient self-efficacy and empowerment.
Their conversation covers treatment options for lupus including new targeted therapies, clinical trials and the potential of CAR T-cell therapy for achieving drug-free remission.
Episode 2: From Pain to Power – A Lupus Journey of Hope
In our second episode, Naomi chats with Julie Norris, who lives in rural Victora and whose life has been profoundly shaped by resilience, compassion, and advocacy. Living with lupus for more than 34 years, she has navigated the daily challenges of a chronic illness while raising her son as a single parent.
Julie shares her challenging diagnosis journey and emphasises the importance of self-efficacy, symptom tracking, and why understanding your blood tests can help make your treatment journey smoother. She also highlights how a new immunotherapy treatment has significantly improved her quality of life. Julie goes on to discuss her memoir, ‘Shattered Silence, Reclaiming My Voice’, which documents her lived experience and advocacy for better patient empowerment and communication among healthcare providers.
Julie’s story is one of survival and renewal, and she continues to use her voice to empower others—to remind them that they are not alone, and that together, communities can create lasting change.
SEASON 3 – AXIAL SPONDYLOARTHRITIS
Axial spondyloarthritis (axSpA) is the broad term for types of autoimmune arthritis that typically affect the axis formed by the spine and sacroiliac joints (where the spine connects to the pelvis) and can also involve other joints and areas of the body.
The two most common forms of axSpA are ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis (nr-axSpA).
In this season of Patient PrepRheum, host Naomi Creek is joined by two patients with axSpA who share their experiences of living with this chronic and painful condition. Together with three health professionals, they look at the diagnosis and treatment of axSpA, common comorbidities and tips for managing the condition.
Episode 1: Understanding Axial Spondyloarthritis: Diagnosis and Treatment
In this episode, host Naomi Creek and her guests discuss the early stages of axial spondyloarthritis (axSpA).
Cherie Cleland (70) lives with a non-specific form on axSpA. She has tried numerous treatments over the years and has developed other health conditions including inflammatory bowel disease and thyroid, kidney and heart issues. Cherie and her husband love travelling and cycling.
Shayne Van Der Heide (57) was diagnosed with ankylosing spondylitis at age 30 but felt very isolated with little support from his doctors. Shayne later had spinal surgeries and developed Parkinson’s disease. He lives a full life spending time with his family, managing a training organisation and cycling for exercise and enjoyment.
Cherie and Shane share their long diagnosis and treatment journeys and the impact of axSpA on their lives. They emphasise the importance of good doctor-patient communication and of getting quality information and support to help them feel less overwhelmed and alone.
Dr Michael Yoon is a rheumatologist at Campbelltown Hospital in Sydney, NSW, with a special interest in axial spondyloarthritis (axSpA). His passion for patient-centered care and clinical research drives his continuous efforts to enhance treatment approaches.
Dr Yoon explains the challenges of diagnosing axSpA as there is no definitive test and symptoms are similar to those of other conditions. Doctors rely on a mix of tests, imaging and clinical judgement. Treatment can range from anti-inflammatories to medications that suppress the immune system, along with exercise and lifestyle adjustments.
Episode 2: The Role of Inflammation in axSpA and Its Comorbidities
In episode 2 of this season, Naomi and her guests discuss the comorbidities associated with axial spondyloarthritis (axSpA).
Dr Arupam Raman is a rheumatologist at South by Southwest Specialists in Gledswood Hills, NSW. She also holds a Master of Medicine (Internal Medicine) from the University of Sydney, further strengthening her expertise in managing complex conditions and delivering evidence-based care. Dr Raman is actively involved in medical education and contributes to the ongoing development of rheumatology treatment approaches.
Dr Raman outlines the most common comorbidities associated with axSpA, including hypertension, obstructive sleep apnoea, fibromyalgia and depression. She looks at the role of inflammatory cytokines and risk factors in developing comorbidities and believes patients should be screened for such conditions so they can be managed proactively.
Naomi is also delighted to talk with Cherie Cleland and Shayne Van Der Heide from Episode 1 again. Cherie and Shayne both live with comorbid conditions and openly share how they manage these conditions alongside their axSpA. Finally, they reflect on the ups and downs of talking to family and friends about their conditions.
Episode 3: Managing Daily Life and Self-Care with axSpA
Naomi and her guests discuss ways to manage axSpA in daily life in this third episode of the season.
Janet Millner is an experienced physiotherapist and a valued member of the rheumatology team at the Royal Hobart Hospital in Tasmania. She has special interests in the management of spondyloarthritis and persisting musculoskeletal pain. Janet’s clinical role includes supporting people with complex rheumatological conditions to optimise their fitness and ability to function.
Janet emphasises the role of regular exercise in maintaining joint function and overall health. She acknowledges that exercise can be challenging for people with axSpA and discusses how it can be adapted to suit individual needs and preferences.
Naomi’s guests from the previous two episodes, Cherie Cleland and Shane Van Der Heide, return to share their experiences of managing axSpA holistically. Along with Jane, they discuss various ways to keep moving, such as cycling, swimming and physiotherapy.
The guests also share tips on other lifestyle changes that can help people with axSpA, including using modified furniture and other aids, working from home, slowing down during flares and asking for help when needed. All believe that even doing a few minutes each day can make a difference.
SEASON 2 – PSORIATIC ARTHRITIS
Psoriatic arthritis (PsA) is a complex condition and one that is frequently underdiagnosed. Around a third of patients living with psoriasis go on to develop psoriatic arthritis, however many of these live with PsA symptoms unaware that they have PsA. Without psoriasis being an indicator for diagnosis, the symptoms of PsA can mimic other inflammatory arthritic conditions such as rheumatoid arthritis and osteoarthritis. A proper diagnosis can take years for some patients.
In this mini-series, we will share a deeper understanding of psoriatic arthritis. We’ll talk with patients about their journeys with the condition, self-management tips and the best ways for them to discuss their treatment options with their doctor.
Episode 1: Psoriatic Arthritis – An Underdiagnosed Disease
In this episode, we talk with Dr Premarani Sinnathurai, a specialist in the Rheumatology Department at Royal North Shore Hospital and Clinical Senior Lecturer at the University of Sydney. She was awarded her PhD from the University of Sydney in 2019 on Comorbidity and Patient-Centred Health Outcomes in Psoriatic Arthritis. Her research focuses on the role of comorbidity and adiposity on outcomes in psoriatic arthritis. Her clinical work includes specialist psoriatic arthritis clinics in addition to general rheumatology and acute referral clinics.
Dr Sinnathurai discusses the complexities of psoriatic arthritis, including inflammation in joints, tendons and skin and the challenges of diagnosing the condition. We learn about the importance of early diagnosis and appropriate treatment as well as the comorbidities associated with psoriatic arthritis. We also hear about the various medications and lifestyle changes that can help people manage the condition, highlighting the importance of individualised approaches based on patient priorities and patient-doctor partnerships.
Episode 2: Patient Journeys and the Road to Diagnosis
In this episode, Naomi is joined by two patients. Kay Boucker is from New South Wales and was diagnosed with psoriatic arthritis in 2013. Kay lived with psoriasis for many years before experiencing other symptoms like fatigue, tendon pain and uveitis. She said it took her GP a long time to be convinced about her PsA symptoms but she was finally referred to a rheumatologist. Kay also lives with type 2 diabetes and depression and says singing is her happy pill for helping her through life’s challenges.
Naomi’s second guest is Andrea McMahon from South Australia. Andrea was diagnosed with rheumatoid arthritis, Sjogren’s syndrome and fibromyalgia in 2010. Then, four years ago, she presented to her rheumatologist with new symptoms of splitting nails and lower back pain. Shortly after that she was diagnosed with psoriatic arthritis. The ups and downs in her journey have taught her patience, pacing and resilience. Andrea remains optimistic for her future and continues her life with as much activity as she can.
Kay, Andrea and Naomi share their experiences and insights on managing psoriatic arthritis and living with chronic illnesses. They emphasise the importance of lifestyle factors, seeking knowledge, and finding support systems. Kay and Andrea discuss the impact of their conditions on their daily life, while offering practical advice and personal anecdotes to help others navigate the challenges of living with chronic conditions.
Episode 3: Psoriatic Arthritis – Self-management and Getting on With Life
In our third episode, Naomi is chatting with Simone Bye from New South Wales, who lives with psoriatic arthritis. Simone was diagnosed in 2018 and is a mum of two young children. She says the hardest part of her journey has been trialling and medically failing so many treatments, which has made it difficult to be the parent she wants to be for her kids. Despite these challenges, she is doing her best to manage her condition and get on with life.
Naomi is also joined by Sarah Comensoli from BJC Health in Sydney. Sarah has several roles there as a director, head of marketing and manager of the allied health team. She has been practising as an Accredited Exercise Physiologist since 2008 and has worked in a number of clinical and gym settings since then. Sarah has been instrumental in building the Exercise Physiology service at BJC Health to be one which is unmatched in delivering care to those with rheumatic disease.
Sarah shares her expertise in working with rheumatology patients and says there is no “one size fits all” approach in helping people keep fit and healthy. She explains how tailoring an exercise program is the key to success in getting patients engaged in better lifestyle habits. Simone discusses some of the ways her allied health team are helping her integrate techniques into her daily life so she can function more efficiently, physically and mentally.
SEASON 1
Episode 4: Methotrexate; Management, Myths and Milestones
In this episode, we’ll be talking about methotrexate and clarifying how it is used in rheumatology settings. Methotrexate is one of the main medications used to slow or stop the progression of autoimmune arthritis and reduce disease activity.
We’ll hear from Janine Fisher, a patient who has lived with rheumatoid arthritis for 31 years. Janine shares her journey with methotrexate, starting with her initial concerns about taking it. She has tried various other treatments over the years and now uses methotrexate successfully in combination with a biologic medication to manage her condition.
Rheumatologist, Dr Irwin Lim will explain why methotrexate is widely used as a front-line treatment for many forms of autoimmune arthritis. He will also explain how it can safely be used by most people and dispel the myths that have developed around it.
In this episode, we’ll be talking about methotrexate and clarifying how it is used in rheumatology settings. Methotrexate is one of the main medications used to slow or stop the progression of autoimmune arthritis and reduce disease activity.
We’ll hear from Janine Fisher, a patient who has lived with rheumatoid arthritis for 31 years. Janine shares her journey with methotrexate, starting with her initial concerns about taking it. She has tried various other treatments over the years and now uses methotrexate successfully in combination with a biologic medication to manage her condition.
Rheumatologist, Dr Irwin Lim will explain why methotrexate is widely used as a front-line treatment for many forms of autoimmune arthritis. He will also explain how it can safely be used by most people and dispel the myths that have developed around it.
Dr Irwin Lim Profile
Irwin Lim is a rheumatologist and the director of BJC Health in Sydney. BJC Health is a dynamic, multidisciplinary group clinic that focuses on providing comprehensive, coordinated treatment solutions for patients suffering with arthritis and related diseases.
Dr Lim is heavily involved in the clinic’s educational activities for allied health professionals and GPs. Since late 2010, he has used social media for patient education, empowerment and engagement. He hopes to raise the level of awareness among the community of the conditions that BJC Health treats. He is also the editor of Rheumatology Republic.
HOST: Naomi Creek
PATIENT: Janine Fisher
DOCTOR: Dr Irwin Lim
TRANSCRIPT
Welcome to Patient PrepRheum. In this episode, we’re discussing methotrexate – management, myths, and milestones.
I’m your host, Naomi Creek, and it’s my pleasure to be exploring this topic with rheumatologist Dr Irwin Lim from BJC Health in Sydney, which is a multidisciplinary rheumatology practice. Their connected care approach means specialists and allied health professionals work together in a holistic way to treat the whole patient, not just the site of their pain.
I’m also joined by Janine Fisher from Geelong in Victoria, who has lived with rheumatoid arthritis (RA) for 31 years. Janine has a family, works full-time, and shares her experience living with RA and how methotrexate has played a role in managing her chronic condition. Welcome to you both.
Irwin, methotrexate has been around for decades, it’s considered a gold standard therapy. Can you explain what it is and why is it such an important medicine to treat autoimmune diseases?
Irwin: You’re correct, Naomi, it’s been around a long time, I suppose methotrexate has been used widely in rheumatology since the 1980s.
It’s a key drug in rheumatoid arthritis. But it’s also used a lot in psoriasis and psoriatic arthritis and, basically, for any autoimmune inflammatory arthritis. It’s known as a DMARD or disease-modifying antirheumatic drug. It’s effective, hence its use. It has another very important use that some of your listeners would know. It’s used as a steroid-sparing drug. And that’s commonly used in polymyalgia rheumatica or a various number of vasculitic diseases.
It’s used because it has proven to be effective over a long time. This doesn’t mean it doesn’t have problems, and I’m sure we’ll get to that soon. But for medicine that is relatively easy to prescribe, which is very cheap, compared to lots of other medications we have, it has bang for buck. Okay, so it’s an effective drug that we can use relatively easily.
Naomi: And is it often used with other medicines to treat things like rheumatoid arthritis or can it be used on its own?
Irwin: If we use the example of rheumatoid arthritis, it depends on what stage of the disease. So, usually, when I’m seeing a patient early in the disease, methotrexate is a typical starting drug. But remember that it treats the immune system. We use it to calm an over-aggressive immune system that is attacking the body. It is slow so it does take some weeks to months to really take effect.
While you’re waiting, you still need to help the person in front of you. And usually, that person is in front of you because they are in pain and they’re not able to do anything. So, it’s very rare that I’ll be using methotrexate by itself because, usually, I have to give an anti-inflammatory of some sort. Be that non-steroidal anti-inflammatory drugs or a COX-2 inhibitor or even a steroid — as long as we have a plan to get rid of the steroid.
So, I suppose the short answer is no, it’s usually used in combination with something. Then if you go a bit further along, if methotrexate does not prove to be effective by itself, we often use it in combination with other disease-modifying agents. Methotrexate seems to be a really important building block. Either someone does well on it by itself, or if not, it’s usually methotrexate with something else, unless a person can’t tolerate taking methotrexate.
Naomi: I see. Janine, you’ve been living with rheumatoid arthritis and taking methotrexate for a long time now. Tell us a bit about that.
Janine: I’ve been on methotrexate for almost 30 years now. I started taking it after the birth of my first child. I had had other medications prescribed to me and they just didn’t seem to be working so I ended up going on to methotrexate.
I did a lot of searching about it when it was first prescribed to me. I was very nervous about taking it and did a lot of research. Well, back in the days, 30 years ago, there wasn’t internet so I used a medical clinic. They had an advisory clinic there that I could ring and get information from.
It was pretty scary and I asked my rheumatologist if my hair was going to fall out and that sort of thing and she said it wasn’t. I went on it and it worked really well. It was really effective. I had no side effects at all. And I used all the precautions. I’ve always taken the folic acid with it as well and I had no side effects.
It worked really well for me for about five years, and then we chose to have another child. I had to come off the methotrexate for at least a menstrual cycle, and then and then hopefully fall pregnant really quickly, which we did. I went into a bit of remission during the pregnancy so I was really good during that time. But, almost immediately after my second child was born the rheumatoid flared significantly.
After that, I didn’t breastfeed and juggled it a bit. We tried a lot of other things and it just never seemed to… I couldn’t get back to that stable position that I’d been in prior to the pregnancy. I stayed on the methotrexate and we’ve tried combinations of other drugs as well but often had reactions to them or it just wasn’t effective.
I kept going until the introduction of the biologicals and once the biologicals came along, that combination worked brilliantly. I’ve had a really great run with it and had no side effects whatsoever.
Naomi: That’s great. Sounds like you’ve had a pretty supportive rheumatologist too, to navigate through that pregnancy time and up until now.
I can really relate, Janine, to your fear of starting methotrexate. I remember having a similar fear when my rheumatologist suggested that I take it. And this was about 20 years ago. I think I had some denial in my mind about how bad my condition was. I thought I was okay. And I really wasn’t.
And I think, knowing that this medicine was also used to treat cancer, I thought, “Wow, my condition must be pretty bad to need such a medicine like methotrexate.” It was a really silly notion that I didn’t want to start it, but it was a real fear and it got to the point where my condition was just too bad to not try it. I had to take the risk and I’m still on it 20 years later. So, it’s certainly a great drug for me and I have had a few side effects but we can talk about those later.
Irwin, on myths and my fear of thinking it’s a cancer drug, it’s a chemotherapy drug. Am I taking chemotherapy?
Irwin: I think rheumatologists are very enthusiastic about methotrexate, sometimes over-enthusiastic. I think on the whole patients are usually afraid of methotrexate, and a little bit too much to the rights as well. So, it’s somewhere in between.
I now always assume that people will think bad of the drug — only because social media has actually amplified a lot of this. If you go to chat groups and the like, as you know, often it’s people who’ve had the worst experiences sharing it, and there are lots and lots of myths.
My typical spiel is to tell people that methotrexate started off being used as chemotherapy. In the 80s and 90s, it was used for (conditions such as) breast cancer and leukemia, however, the doses were grams daily by drip, or through the spine. How we, as rheumatologists, use methotrexate is 10 to 20 milligrams, sometimes more, but once a week, and orally. So even though the name — and the problem is the name — if they’d changed the name at the start it would be simpler.
The problem is giving people some understanding that at different doses, drugs work differently. What I would usually say Naomi, is if I gave you two Panadols for your headache, you’d take it. If I gave you 500 Panadols, for your headache, you’d bolt, right. You look at me and go, “Oh!” So that’s the same with methotrexate. The dose is different.
Now, I never tell people it’s a perfectly safe drug because it’s not. I actually say to my patients when I’m starting that 20 to 30 per cent of people cannot take it. They just don’t feel right. Either you feel yuck or you get nausea or you lose a bit of hair. And the plan is you don’t need to keep taking it if you have side effects because we now have alternatives. But you should start it.
For a disease like RA if you start it early enough — and if I can hold someone’s hand and get them across that fear and get it in early — I know, from various studies, 40 to 50 per cent of people will do well on methotrexate as monotherapy in the long run. If we get in early.
And even if you’re not in that group, I still have to try methotrexate, at least in this country, because as you know, it’s one of the prerequisites to move on to the biologics. And so I do talk to people about the fact that we do have these effective drugs as well. But unfortunately, or fortunately, because of the economics of it, you have to try the older medications first. So, I think if you can help people understand the rationale, and you don’t need to cover it in rose-tinted glasses, you just tell people the truth. There is no perfect drug. And I think that’s how I try to get around.
Naomi: Yes. And it’s a balance, isn’t it, of side effects versus effects? I can speak from my own experience that, yes, I do get a little bit of nausea and I do feel a little tired, but I know how effective it is for my rheumatoid so I put up with that once a week. I have moved on to injections now, instead of tablets and that has made quite a significant difference in my nausea.
Irwin: Yeah, I’m sure we’ve had this discussion before. Most people, in fact, everyone — and it’s human nature — is worried about the side effects of medication. It’s harder for people to worry about — I know that it’s not the right word —the side effect of not treating the disease. So it’s a balance. And it’s actually very hard for people to appreciate this, and it’s hard to actually convey it as well. And so, you’re right, everything’s a balance.
Naomi: And while we’re on the subject of myths and things like that, if you Google “methotrexate”, the word “cytotoxic” comes up with it. Can you explain a little bit about that? Because there are some, perhaps misunderstood, stories about this medicine and how you’re supposed to handle it if you take it.
Irwin: “Cytotoxic” is quite a generic term meaning that it can be dangerous to your cells. And, of course, it can at the right doses. Lots of things can and I’ll give you an example; paracetamol. If you take enough, you’re going to kill off your liver.
There are so many myths with methotrexate. I think, basically, because it started life off as chemotherapy. And among my own patients, they’ve been told by, unfortunately, other doctors who don’t deal with it, pharmacists, nurses… about some of these myths. For example, I wrote a blog post about years ago, because a patient told me, they had to double flush after they went to the toilet because they had methotrexate. Or, I’ll have people ask me, “Can I hold my grandchild? Because I take methotrexate?”
I think we’re not helping it because, if you go to hospital, in some protocols, they still treat it as chemotherapy, even within a hospital. I’ve had GP clinics where the nurses have refused to inject methotrexate because they want to handle it as a chemotherapeutic. It is frustrating. But I always have to come back to the doses we’re giving you. If it’s so cytotoxic that you can’t touch people, you have to wash yourself extra, how can you even put it in your mouth? It just comes down to the doses.
Naomi: Yes, exactly. Janine, you had a story about your experience with one nurse at a hospital, which seemed a bit outrageous when you told me.
Janine: It was only probably around two years ago and I’d gone into the hospital for a small procedure. During the preparation, I needed to use the toilet after she’d taken all of my information. When I came out, she put a sign on the door just because I’d take methotrexate on a Monday or whenever — it was within a certain amount of time — no one was allowed to go in and use that toilet after I’ve been in it until it had been cleaned again. I remember that type of precautions happening 30 years ago when I started it and during hospital visits, but I hadn’t had it again until this happened very recently and I thought, “Is that old school or…?”
Naomi: It sounds like there’s a bit of education to happen in lots of different areas of medicine, doesn’t it, to alleviate? It doesn’t give it a good name does it, hearing some of these stories? Which is a shame.
Janine: I still wash my hands after I take it because that’s what I was told, and not to touch anything else after I’ve used it so that just stuck.
Naomi: I’ve never been told that at all. I was never told even to wash my hands before or after (using methotrexate). When you know, putting it in your little pill boxes, you just handle it and I’ve never been told that. So, it’s good to know that in these small doses, it’s safe to be handling.
Irwin: I think, maybe a decade ago, to try to help people feel more secure, a group of rheumatologists in Canberra, I think they crushed methotrexate against their own skin, rubbed it in and then did serum levels of methotrexate to show people that it doesn’t actually get into your system. So you don’t have to wash your hands particularly, just because it’s methotrexate or the like.
Naomi: Okay, maybe we should share that video (laughs). But that sounds great.
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Naomi: So, some people taking methotrexate, as we said earlier, will experience side effects. What can be done about those especially if it is helping their condition?
Irwin: I suppose it depends on what the side effect is. The most common side effect tends to be people just not feeling quite right for the next 24 or 48 hours. That might be a bit of tummy upset or a bit of nausea or just malaise and fatigue.
There are little tricks we do. You are correct. Sometimes, if you convert people from oral to injectable methotrexate if the person is willing to go down that route — and it’s easier nowadays because you have the prefilled pens — it seems to be better tolerated, in some people, from that point of view.
Everyone in Australia on methotrexate is typically co-prescribed folic acid as something to reduce side effects. In most trials, it shows that it reduces the side effects of liver test abnormalities, but we believe it does more than that.
If you’re already on folic acid, sometimes we swap you to a very special activated form of folic acid called folinic acid. The reason we don’t typically use it first up, is it’s a lot more expensive, right? I think it’s between 5 to 10 dollars a tablet, but it’s once a week only for this. And again, some people do better on that.
This is not for everyone, but you will find some rheumatologists, including myself, if we really have to use the methotrexate, can use split dosing sometimes. So instead of taking, for example, 20 milligrams all in one hit, you might have a lower peak by splitting it into 10 and 10. The reason we try not to do that a lot is if people get confused, the people who tend to get in a lot of trouble with methotrexate tend to be people who accidentally took it every day for other than once a week or something like that. When you’re changing regimens, you want it in someone who can follow the instructions appropriately and not get confused.
And of course, sometimes you can’t change that side effect. If someone is just feeling off the only way is to either dose reduce — so if you’re on 20 milligrams, you might have to lower the dose — or, if that doesn’t work, you might actually have to stop it.
I’ve told you about the most common side effects, but there are other side effects, for example, liver test abnormalities and the like, that’s probably the common one. And that one’s a little bit more complex because it depends on what other medications the patient is on. It depends if they drink alcohol. So, you try to work and finesse possible reasons for that, and then try to improve things where you can.
Naomi: Okay, and just on the folic acid, does it depend on when you take the folic acid or which days you take it? Because I know I’ve heard of some patients who don’t take it every day but on the methotrexate day they have it slightly different regime with that.
Irwin: They are so many different regimes for folic acid. In Australia, the two common doses are 0.5 milligrams and the five milligrams and, depending on where your rheumatologist trained, the regime might be:
- 5 milligrams every day
- 5 milligrams every day but the day you take methotrexate
- One milligram which is two five milligram tablets
- The one I use is, five milligrams once a week the day after methotrexate
There’s no good research to inform us exactly what dose of folic acid is needed. All the research that has been done shows that most people do better on folic acid than on no folic acid. And because it’s such a cheap, safe vitamin, we just tell people to take it.
The reason why some people worry about taking it on the same day as methotrexate is a theoretical worry that it might reduce the effectiveness of the methotrexate. But again, I’m not aware of any studies that really show that.
Naomi: Okay, and, and would the folinic acid be the same case if you took it at the same time?
Irwin: We typically suggest folinic acid to be taken 12 to 24 hours after methotrexate. Again, because it’s such a potent activated form of folic acid, the worry is if you take it at the same time as methotrexate is you lose the effectiveness of the methotrexate.
Naomi: Okay. Janine, how do you go with your folic acid?
Janine: I’ve always taken the folic acid with it (methotrexate) and I take it every day but the day that I take methotrexate. I take five milligrams every day other than the day I take the methotrexate, so hopefully, that’s not an overdose. But I have heard different things if you go into a hospital setting or something and there’ll be a doctor or someone there who might say, “No, no, that’s not right. You’d have to take it in this day.” And that’s different. So, I’ll just stick to what I’ve been prescribed. I’ve always used it.
Naomi: When you mentioned alcohol and the liver — that it can affect your liver if you are on methotrexate — I think that’s a big concern in the community about how much can we drink when we’re on methotrexate. I know I am very careful on the day that I take methotrexate, particularly that I try not to drink much. I don’t drink much anyway. But I try and do my dose midweek when we’re unlikely to have a party going on so I avoid the weekends. What are the rules around drinking alcohol?
Irwin: When I was training in the hospital system 20 years ago, my rheumatology mentors then would have said, “No alcohol. No alcohol at all.” And that’s ridiculous. I mean, they all knew that people were drinking, but they said no alcohol.
I think a more nuanced explanation to people is useful. Think of alcohol as a potential liver poison. So, if you’re already worried that methotrexate may potentially irritate your liver if you add two together, there’s more toxicity to the liver. There are studies that suggest — I can’t remember the exact amount — but something like seven to 10 standard drinks a week seems to be okay. But everyone’s slightly different.
The way I tell my patients is, that I don’t mind them having a drink but try to keep it to below seven standard drinks a week. Most of us do that. And if you don’t, then methotrexate might not be the right drug for you anyway, if you can’t even take to that. And I agree with you, I do tell my patients to typically take the methotrexate during the weekdays when they’re not drinking so that they can celebrate on a Friday or Saturday night when it’s the usual time you have a party or go out.
What we also do is at the start of the journey, and starting someone on methotrexate, we often do their blood tests much more often. It might be the first month, then monthly, then two monthly and we watch. And if your drinking is relatively steady, your medication is relatively steady, and you’re watching these blood results and nothing’s happening, then, from my point of view, it’s pretty safe. Then we just extend the (gap between) blood tests over time.
I think the problem is in people who are very heavy drinkers and who can’t stop, that’s going to always be an issue. And then, of course, people who drink every single day quite a bit, and that’s a problem. So, methotrexate might not be the best option for those or people who binge. Again, if that’s uncontrollable, then that’s a bit of an issue.
Naomi: Taking methotrexate can make you more sensitive to the sun. And I know, for myself, I have had a couple of melanomas taken off and I’ve been told to have my skin checks at least every year, I actually have them done every six months because of the fact I’ve had some melanomas. This seems to be something that perhaps isn’t talked about a lot with rheumatologists and their patients. How important is it?
Irwin: Oh, it’s important, of course, in Australia, because skin cancer is so common. But you also need to understand that having rheumatoid arthritis alone increases skin cancer risks. That’s known.
Being on a drug like methotrexate, does it really increase your skin cancer risk over and above RA and over and above the fact that you’re a white Aussie? If you lived on the Gold Coast (for example), you’d be very worried, right? You’d be checking your skin all the time.
I think it’s hard to know, I certainly do tell people that it does make them a little bit sun-sensitive, but we have a lot of drugs that do that, including hydroxychloroquine. It’s going to always be slip, slop, slap anyway, and check. Now, we’ve mentioned the biologics already, and particularly the TNF inhibitors — they do increase the risk of non-melanoma skin cancers. People do need yearly checks on those.
It’s always hard to tease out the effect of having a disease and the effect of this disease being uncontrolled versus controlled, and what that does to underlying cancer risk. Then you add in the medications, which tend to be given to people who are not well controlled anyway, to get control. So that’s where it’s hard to tease out what causes what risks.
I think in general, people with fair skin need to have skin cancer checks.
Naomi: Janine, do you have skin checks?
Janine: I haven’t. This has been really reassuring in a lot of ways, about the alcohol. But with the sun, no, I’ve just always avoided the sun. And I found that I feel a bit funny when I spend a bit too much time in the sun so I don’t go in the sun. But no, I haven’t had regular checks, but I will. That’s good information. I’ve never been told that that was something that I needed to do. Other than the regular promotion that you see on it.
Irwin: With the skin cancer checks, it doesn’t have to be very onerous. If you have stable disease and never had skin cancer before, it might be as simple as once a year your GP just looks over your skin. And of course, if you are quite fair, then you know that it should be done, depending on what part of Australia you live in, of course.
Naomi: And, being immunocompromised, what are the other risks, like getting other infections while we take methotrexate?
Irwin: It’s a very good question. And I’ve had this talk again and again and again because of COVID. Right? And a drug like methotrexate is an immunosuppressive medicine. But what I want people to also understand is that the people who we are using methotrexate in, typically, in rheumatology have an overly aggressive immune system. So, we’re putting in an immunosuppressive to wind it down and try to get it closer to normal.
You will actually have lots and lots of people on drugs like methotrexate, even though it’s an immunosuppressant, who don’t actually get recurrent infections. Of course, there is a risk of overdoing it and overshooting and you know, dropping it to a point where you get recurrent infections, but that tends to be the minority of people on the typical doses of methotrexate we use.
Again, there’s a complicating factor because some people are uncontrolled on methotrexate alone. So, you end up being on combination treatments. In particular, if you do need long-term prednisone, that really is immunosuppressive and that really does increase infection risks — particularly the longer you’re on it. I hope I’ve explained that well enough.
Naomi: Talking about COVID. Janine, you experienced COVID, earlier this year, how did that affect you and you’re taking methotrexate?
Janine: I stopped taking the methotrexate and I went in pretty quickly to get the antibodies being immunosuppressed/compromised. And I stopped it so I probably missed about four doses of methotrexate over time. And I really felt it. It’s taken me a while to pick up. In fact, I haven’t really picked up. During it, I got a couple of extra infections after COVID. And I really just haven’t picked back up to having my rheumatoid in a stable situation again, so it’s taking its time.
Naomi: And so, you resumed your methotrexate after you got through the worst of COVID?
Janine: Yes. Once I’ve got through COVID, I picked it back up and it’s still taking its time. It may be COVID, as well, just the long-term effects of COVID, that I’m having difficulty with.
Naomi: Irwin, do we find when people come off methotrexate, that it does take a little while to build that, I guess, load back up into the system to get people back to where they were?
Irwin: It’s a nuanced answer because it depends on the context of it. If someone’s extremely well controlled, and they’ve stopped methotrexate themselves, or we decided on a tapering schedule, generally I tell them when we stop it, it may take up to 6 to 10 weeks to know because it needs to come out of your system.
But of course, the advice is, if you start noticing that you’re getting worse, don’t wait until you’re really bad to restart the methotrexate. So typically, the earlier you start the methotrexate again, the less it needs to build up. So that’s what I mean by it being nuanced.
I live in Sydney and, if you believe the figures, it’s 20,000, at least of infections a day at the moment. And we’ve had lots and lots and lots of patients catch COVID. The people who’ve been on monotherapy as methotrexate — if they have been well controlled and have a mild COVID illness, you know, the typical one going away within a week — they just hold off one dose of methotrexate, then restart it after. By and large, thankfully, most people have had very mild diseases.
It’s harder when you have to hold off the methotrexate longer. It’s harder if you have a disease where you’re not just on methotrexate, you’re on a biologic or a specialised DMARD, or combination DMARD therapy because you’re stopping more than one medication. So, I don’t think we can work out if stopping methotrexate is the cause of it (ongoing symptoms).
Now the problem of having COVID, especially if it’s most serious, is it also irritates your immune system. So, some of the worst effects of COVID or any infection are because there’s a secondary response by the immune system, which is why a lot of rheumatology drugs like Actemra (tocilizumab) are being used to help patients who are very sick with COVID. So, it’s hard to tease out. Is it the effect, Janine, as you said, is it the effect of COVID making you sick or stopping withholding your drugs? Or both? Right? It is very hard to know.
Janine: It’s also a bit of a journey, having had the vaccinations in that, originally, we were advised to stop the methotrexate to have the injections. So, I guess it’s been an unsettled time for me and methotrexate over the last six months.
Irwin: I think it’s good that you brought up the vaccinations because obviously, anyone on methotrexate needs to have COVID vaccinations. I mean, all of us need COVID vaccinations unless there’s a good reason.
It has been shown that methotrexate — when you look at a group of people — will result in lower antibody production to COVID vaccines. And so that’s why ATAGI has decided that people who are on methotrexate at 10 milligrams and above need to have three primary doses, not the two, and then subsequent boosters.
The data about stopping methotrexate after the COVID vaccination to try to enhance your body’s ability to make antibodies is based on some very elegant studies with the flu vaccine. Where, if you withhold the methotrexate for two weeks after the flu vaccine, you get better coverage.
Now, most rheumatologists in Australia would probably suggest after the COVID vaccine, you stop one or two doses of methotrexate depending on how well controlled your disease is. And, of course, we make changes depending on what happened with the first vaccine and the second vaccine and the like. I certainly have had patients who felt that they flared quite a bit by stopping the methotrexate so we didn’t bother stopping the methotrexate. We’re in the lucky country. People on methotrexate can have up to five COVID vaccines now. So, if you’re only limited to the two, you really want to get, as much out of them as possible. But here, with the boosters, I think that becomes less of a worry.
Naomi: Okay, and what about withholding it prior to you having any of these vaccines and in fact, the flu vaccine as well? Should we not have the methotrexate the week of and the week after?
Irwin: I think withholding after is more important. But it all depends, again, on the timing. Let’s say you booked in for your COVID vaccine on Tuesday, but your methotrexate dose is Monday. This is where you have to finesse the advice. It doesn’t make sense to take your methotrexate on Monday and then have whatever vaccine on the Tuesday, you just skip the Monday and assume that’s the week that you’ve missed. Does that make sense?
That’s why it’s very hard to write guidelines around all of this. Because it’s not easy, because it’s once a week, you take it at different times, you may not be able to exactly schedule your vaccine at the right time. So, I think that, in general, I stop the one after.
Naomi: Right, okay. And if people aren’t sure ATAGI does update the guidelines around this, don’t they?
Irwin: Yes, also on the Australian Rheumatology Association website, under the patient section, there is specific advice for vaccinations.
(Note: you can also view the latest version of the Australian Rheumatology Association’s advice about COVID-19 vaccinations for people with rheumatic disease at https://creakyjoints.org.au/covid_19/rheumatologists-share-covid-vaccination-advice-for-rheumatology-patients/ )
Naomi: Well, I think we’ve covered a whole heap of great information on methotrexate today. So, I want to thank you guys for joining me today. It’s been really wonderful. Hope to, hear from you and have you join me in a future episode.
If you are considering if methotrexates fit into your treatment plan, speak to your rheumatologist.
If you want to learn more about methotrexate, listen to our audio guide or find more information at creakyjoints.org.au.
Thanks for listening to this episode of Patient PrepRheum.
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Episode 3: Improving Patient/Doctor Communication
In our third episode, Naomi learns some top tips from fellow patient Sarah Clark about having good communication with your doctor. Sarah tells of her rocky start with her initial diagnosis and early treatment until she found a specialist who really listened to her. Rheumatologist, Dr David Liew shares some wonderful insights and what helps him provide the best care possible to his patients. Click info button for full description and transcript.
Episode 2: Accessible Medication Through the TGA & PBS
In episode 2, we hear from Janine Monty, who lives with multiple autoimmune conditions. Janine shares why having access to a large range of affordable medicine is key to her being able to manage her everyday life. Rheumatologist Paul Bird explains the important role the Therapeutic Goods Administration (TGA) and Pharmaceutical Benefits Scheme (PBS) play and how patients can have a say in improving access to a medicine. Click info button for full description and transcript.
Episode 1: The Next Step with Biosimilars
In our premiere episode, we’ll be talking about biologic medicines and biosimilars. These are medicines that are used to slow or stop the progression of autoimmune arthritis and reduce disease activity when conventional tablet-form medications aren’t working well enough for you. We’ll hear from Ann-Laherty-Hunt, a patient with RA and from Rheumatologist Dr David Liew. Click info button for full description and transcript.
PATIENT PREPRHEUM AUDIO GUIDES
Want to learn more about these topics? We’ve taken the hard work out for you by summarising all the important facts and packing them into short, easy-listening podcasts. Breeze through these mini-presentations and come out with a whole lot of knowledge! Check them out below and be sure to subscribe for access to future episodes.
OUR LATEST AUDIO GUIDE
Audio Guide 4: Methotrexate
Learn more about the medication Methotrexate in this short audio guide that accompanies Episode 4: Methotrexate – Management, Myths and Milestones. The guide gives an overview of Methotrexate and delves deeper into how the medication works, how it is used and its side effects.Click info button for transcript.
Audio Guide 3: Improving Patient/Doctor Communication
Listen to helpful tips for patients and doctors to bridge the gap between patient and doctor. Click info button for transcript.
Audio Guide 2: Medicine Approval and Access in Australia
Learn more about the role of the Therapeutic Goods Administration (TGA), the Pharmaceutical Benefits Advisory Committee (PBAC) and the Pharmaceutical Benefits Scheme (PBS). Click info button for transcript.
Audio Guide 1: Biosimilars
Learn more about biosimilars – what they are, how they are made and why they are an important treatment option for patients to consider. Click info button for transcript.

YOUR HOST
Naomi Creek,
National Coordinator, GHLF Australia
Naomi’s role at GHLF Australia is to coordinate education, advocacy and support activities for their patient and carer community. She works closely with patient groups, health care organisations and health care professionals, as well as the GHLF global office to identify Australian community needs, so her team can create relevant and helpful resources.
Naomi’s personal experience of living with rheumatoid arthritis since the age of 12 has made her a passionate advocate for others living with arthritis and chronic conditions. She believes patients must have access to the right resources to understand their condition and feel empowered to manage their own health. Naomi has an extensive background as a patient representative and volunteer community leader, including leading the Young Women’s Arthritis Support Group (YWASG) for 10 years in Melbourne and being a board director and community speaker at Arthritis Victoria.
MORE RESOURCES
Here’s a sample of some of resources found on our website. Be sure to visit often to see the latest offerings.
10 Things to do After an Arthritis Diagnosis: Top Tips From Patients
You’ve just found out you have arthritis. Now you need to know how to live with it. These practical tips will help you get started.
Patient Guidelines for Living With Arthritis
These patient guidelines offer detailed, accessible explanations of symptoms, treatment options, integrated medicines and therapies, diet and exercise, as well as how to talk to family and friends about your condition.
Government Support for People With Chronic Illness
Are you searching for government pensions and benefits for Australians with chronic health conditions? We’ve listed the most common ones here.
Patient Stories
We’ve devoted this page to your personal stories so you can read about other people’s experiences and learn from them. We hope they will help you feel less isolated and that they will validate your own feelings and concerns.
Living With Arthritis During Covid-19
We’ve sourced the latest information from the Australian Government, the Australian Rheumatology Association and a selection of other official and reputable sources to bring you important resources to live well through Covid-19.
Choosing Your HealthCare Team
Choosing your own healthcare team will help you gain a better understanding of your condition, assess which treatments are right for you and help you manage your health more effectively.
Patient PrepRheum is a podcast series produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from our generous sponsors.

























