Episodes

  • Psoriatic Arthritis: Self-Management and Getting on with Life

    Psoriatic Arthritis: Self-Management and Getting on with Life
    Jul 22 2024

    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.

    Contact Us

    We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

    Meet the Team

    Host: Naomi Creek, National Coordinator at CreakyJoints Australia.

    A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

    This second season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia.

    For more information, visit the CreakyJoints Australia website.

    See omnystudio.com/listener for privacy information.
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    37 mins
  • Psoriatic Arthritis: Patient Journeys and the Road to Diagnosis

    Psoriatic Arthritis: Patient Journeys and the Road to Diagnosis
    Jul 22 2024

    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.

    Contact Us

    We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

    Meet the Team

    Host: Naomi Creek, National Coordinator at CreakyJoints Australia.

    A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

    This second season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia.

    For more information, visit the CreakyJoints Australia website.

    See omnystudio.com/listener for privacy information.
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    37 mins
  • Psoriatic Arthritis: An Underdiagnosed Disease

    Psoriatic Arthritis: An Underdiagnosed Disease
    Jul 22 2024

    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.

    Contact Us

    We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

    Meet the Team

    Host: Naomi Creek, National Coordinator at CreakyJoints Australia.

    A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

    This second season of Patient PrepRheum is produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints Australia, and made possible with support from UCB Australia.

    For more information, visit the CreakyJoints Australia website.

    See omnystudio.com/listener for privacy information.
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    25 mins
  • Methotrexate; Management, Myths and Milestones

    Methotrexate; Management, Myths and Milestones
    Aug 4 2022

    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.

    See omnystudio.com/listener for privacy information.
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    40 mins
  • Audio Guide: Methotrexate

    Audio Guide: Methotrexate
    Aug 4 2022

    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.

    See omnystudio.com/listener for privacy information.
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    8 mins
  • Audio Guide: Patient/Doctor Communication

    Audio Guide: Patient/Doctor Communication
    Apr 20 2021
    This is an audio guide about patient and doctor communication brought to you by CreakyJoints Australia. Be sure to go to the CreakyJoints Australia website, and join for free to keep updated on all of our resources. TRANSCRIPT This is an audio guide about Patient and Doctor Communication, brought to you by Global Healthy Australia.Whilst many patients have had positive experiences working with their health team, there are still many of you who are unsatisfied with the quality of treatment and are frustrated by the ineffective communication experienced when approaching your GPs/ specialists...Here we would like to offer our top tips so Doctors and Patients can “Get on The Same Page” PATIENTS Get your needs met, ask, ask and ask some more! This is about YOU, Doctors are here for you.Be realistic - You won’t always get all the answers from a doctor, so seek advice so you know where to go next! This process is empowering in itself, there may be setbacks along the way but keep up a proactive mentality/approach and you will land in the right place/direction Get your needs met - if you are unsatisfied with your doctor, you are 100% entitled to ask your records to be transferred to a new one! It’s common practise and they won’t take it personally. Helpful ways to keep up effective communication and manage any hesitancy around discussion If you feel nervous or have a particularly sensitive issue, bring a friend, a support person, social worker or someone you feel comfortable with to generate a feeling of safety and security when verbalising your issue.If helpful, Jot down some points before hand so you have a reference point that will keep your discussion on the right track in case you get confused/lost/shy etc. Remember, you are not the first one who has come with the issue you have! Be accountable with record keeping Doctors need as much information as possible, the more you have the better you are treated. If you struggle with this make sure to stay as prepared and organised as possible. This is your best chance at getting the treatment and support you need! Be accountable. DOCTORS It is essential that doctors have a proper understanding of their patients. Whilst this may seem obvious, this is not to minimise the health care communities efforts, it’s to address the feedback that there are some barriers that need to be addressed. Quality Communication Get clear on your patients value systems: Sometimes patients have a hard time verbalising their needs... Gain a clear understanding of the patient as a person, ask direct questions that get YOU clear on their needs. What do they like to do with their time? What kind of lifestyle do they seek? What is getting in the way of your wants/needs/desires?Pre appointment surveys may be helpful to identify your patients concerns and needsHolistic Understanding: The condition goes beyond physical aspects, affecting emotional, social, spiritual and intellectual aspects of life.Be conscious that there are topics patients struggle to discuss, so you may need to help encourage them on this, remind them its a safe, non-judgemental space. Broaden your list of resources/ information to offer up. You are a Hub of information for them. Every patient responds differently to therapy. Be well-versed/updated on the latest news/stats and new developments within Arthritis care. Broaden your pool of resources to suggest to your patients.Get yourself acquainted with key players in the field, help to navigate getting across everything! You’ll be more prepared. Rosemary: “For sufferers, information is power. It’s one of the ways we cope with the condition”. People respond differently, be conscious of their personality types when making non-medical based suggestions. Always be meticulous with record keeping, patient history and handover to specialists “Something huge I think is missing is an automatic referral for anyone diagnosed with a chronic pain condition to get access to mental healthcare” Desire for A common platform to keep all records on like the “My Health Record” app. “I was prescribed a medication that led to hair loss. Things like this can and do have self-image implications! I learnt years later from another specialist that I did not need to take that medication after all!” Always be meticulous and thorough with notes on your patients and collecting relevant information - make sure you share this knowledge promptly and accurately to all members of your patients medical/health/lifestyle team/ support network. Managing complex issues/ chronic illness especially in Hospital settings A known setting where information can be easily lost/miscommunicated. Take extra care here, having a Complex Disease Coordinator in clinical settings could help keep communication efficient and streamline. Acknowledgement: This is tough and yes there are ups and downs. Remember this condition does not own you, you have a right ...
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    5 mins
  • Audio Guide: Medicine Approval and Access in Australia

    Audio Guide: Medicine Approval and Access in Australia
    Apr 20 2021

    This is an audio guide about the approval and sale of therapeutic goods in Australia, brought to you by CreakyJoints Australia.

    Be sure to go to the CreakyJoints Australia website and join for free to keep updated on all of our resources.

    TRANSCRIPT

    This audio guide is about the approval and sale of therapeutic goods in Australia. It is brought to you by CreakyJoints Australia.

    Before therapeutic goods (including medicines, biologicals, vaccines, medical devices and products such as vitamins) can be sold in Australia, they must be approved for sale by the Therapeutic Goods Administration (or “the TGA”). The TGA is a part of the Australian Government Department of Health.

    Individuals or organisations, such as pharmaceutical companies, can apply for (or “sponsor”) a therapeutic good to be considered for sale in Australia by the TGA. Sponsors must also supply evidence of their product’s quality, safety and efficacy gathered through clinical trials. The submission is then evaluated by the TGA.

    If approved, the product is added to the Australian Register of Therapeutic Goods as a “listed” or “registered” product according to its risk profile. No medicine is 100 per cent risk-free, but the risk is greater for some medicines. Therefore, they place more rigorous controls on higher risk “registered” medicines than lower risk “listed” medicines.

    Listed products can be sold through supermarkets or pharmacies without a prescription, though not all are evaluated by the TGA for efficacy.

    All registered products are always evaluated for efficacy before they go on sale. Some are available in pharmacies over the counter after consultation with a pharmacist. Prescription products are only available with a valid prescription from an approved health professional and can only be sold through pharmacies.

    The Pharmaceutical Benefits Scheme (or “PBS”) heavily subsidises the cost of prescription products for all Australians with a Medicare card as well as some Australian visitors. For example, the actual cost of some medications for autoimmune arthritis is well over $1,000 but, through the PBS, consumers pay less than $50 for them at the pharmacy.

    Sponsors can apply for registered products to be added to the PBS. These applications are considered by the Pharmaceutical Benefits Advisory Committee (or “the PBAC”). The PBAC is an independent body of health professionals and consumer representatives appointed by the Australian Government.

    The PBAC meets at least three times a year to review the applications on their agenda. They assess relevant information from the sponsor, the TGA and public submissions before deciding if they should recommend products to the Minister for Health for inclusion on the PBS.

    Public submissions can come from patients, carers, members of the public, health professionals or consumer groups and are a valued part of the process. They help the PBAC understand how the proposed product will benefit consumers. These perspectives may be quite different from those presented by the sponsor.

    Products that are on the Australian Register of Therapeutic Goods but are not included on the PBS may still be sold in Australia but they are not subsidised by the Government.

    If there is a product that you would benefit from that is not currently listed on the PBS, you can ask your healthcare professionals or relevant consumer groups to help you bring it to the attention of the PBAC. This could start the process of making the product available to you and others like you.

    See omnystudio.com/listener for privacy information.
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    5 mins
  • Audio Guide: Biosimilars

    Audio Guide: Biosimilars
    Apr 20 2021
    This is an audio guide about biosimilar medications, brought to you by CreakyJoints Australia. Be sure to go to CreakyJoints Australia website, and join for free to keep updated on all of our resources. TRANSCRIPT Audio Guide 1: Biosimilar Medications This is an audio guide about biosimilar medications, brought to you by CreakyJoints Australia. A biosimilar medication (also known as a “biosimilar”) is a very close duplicate of an original brand of biologic medication (or “biologic”). Biologic medications are developed from living cells and are used for a wide range of conditions including diabetes, chronic kidney failure and some types of cancer. They are often also prescribed to treat autoimmune conditions such as rheumatoid arthritis, psoriatic arthritis and Crohn’s disease. You might already be using biologics such as etanercept (sold under the brand name Enbrel), infliximab (sold under the brand name Remicade) or adalimumab (sold under the brand name Humira) to help treat your condition. Biologics have large complex molecular structures compared to tablet medications. (Picture a basketball next to a pea and you’ll get the idea.) As a result, they cannot be processed through the digestive system. Instead, they are injected or infused into the bloodstream. Unlike the synthetically made generic versions of tablet-form medications (which are 100 per cent identical to the original brand-name medication), biosimilars are almost identical copies of biologics. Biosimilars are made using the same research and materials as the original reference biologics they replicate. The manufacturing processes are also exactly the same. Biosimilars even have the same active ingredient name as their reference biologic, but they are sold under different brand names. However, the end products can never be exactly the same as the original biologics, so they cannot be reproduced identically. Both biologics and biosimilars can even vary slightly between batches. Does this mean biosimilars are safe? Yes, they are. The very minor differences between a biosimilar and its reference biologic mean that the biosimilar has the same safety profile as the reference biologic. Both must go through the clinical trial process, although biosimilars can use some of the data from the clinical trials conducted for their reference biologic. Biosimilars must also pass the same strict regulation processes of Australia’s Therapeutic Goods Administration. Biosimilars will not be approved if they don’t meet the same quality, efficacy and safety standards as their reference biologics. Is there a cost difference between biologics and biosimilars? While biologics are planned and developed from the ground up, biosimilars are based on biologic structures that already exist. This means they are more cost-effective to produce than their reference biologic so they can be sold to the government at a lower price. Additionally, every time a new biosimilar is launched, the price the PBS pays for ALL equivalent medicines in the category drops. For example, if a new adalimumab biosimilar is approved, the price to the PBS of the reference biologic HUMIRA plus other approved adalimumab biosimilars all drop to the same lower price. In the long run, that means less expensive medicine as the cost savings allow the government to invest in other medications and areas of the healthcare system. There is no price difference for consumers between biologics and biosimilars as these are sold at the same fixed price through the Pharmaceutical Benefits Scheme (PBS). However, consumers benefit from the increased range of treatment options available to them. How are biosimilars prescribed? Only rheumatologists and clinical immunologists are authorised to prescribe biologics and biosimilars in Australia. If you have autoimmune arthritis you will most likely see a rheumatologist to access either of these medication types. There are several ways you may be prescribed a biosimilar. Firstly, if you meet the access requirements and have not previously been treated with a biologic medication your rheumatologist may prescribe an appropriate biosimilar for you if there is an approved one on the market for your condition. Also, if you have tried a biologic or biosimilar of one active ingredient and it didn’t work for you, your rheumatologist may prescribe a biosimilar with a different active ingredient that you haven’t tried. Second, you may receive a biosimilar brand if you have been treated with an original biologic brand of the same active ingredient (such as etanercept) and it has been successful. Your rheumatologist can simply specify the biosimilar brand name they use on your prescription. (This process is known as “switching”.) Finally, just as brands of synthetic medications can be substituted with their generic counterparts at pharmacy level, so too can original brands of biologics be substituted with their equivalent biosimilars without the ...
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    8 mins