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Your SpAce - Making medication decisions

Making medication decisions

Welcome to Your SpAce. Here we build skills together to live life with axial SpA.

Your SpAce is for anyone with axial spondyloarthritis (axial SpA), including ankylosing spondylitis (AS). Whether you’ve just been diagnosed or you’ve been living with the condition for years, Your SpAce is here to support you.

There are lots of medications available to help treat your axial SpA, so this section of Your SpAce shares information and advice to help you make decisions that are right for you.

We’re a community, so take your time watching the videos and get involved in the comments sections. We can help each other by sharing experiences and advice.

Use our resource sheets to help you make decisions about axial SpA medications, and track your medication doses. Download a copy to print.

Download a copy to complete on your computer. Simply download the document, open with your usual PDF reader, click on the text boxes to complete, and then save a copy.

To visit Your SpAce topics on pain, fatigue, flares, and getting the most out of appointments, follow the links below.

Understanding your medication options

For support getting active with axial SpA, visit our exercise webpage. For more information on medications for axial SpA, visit our medication webpage.

Click to view video transcript

An essential part of managing axial SpA symptoms is through keeping active, exercising, or by being supported in an exercise programme with physiotherapy. We have resources linked below on activity, as this will look different for each person.

There are different medication options that can be really helpful to add in if your symptoms aren’t controlled enough through activity alone. The aim with medication is to control your symptoms to allow you to continue with activities such as exercise, family commitments, work, social life and more.

It can be overwhelming to understand what your options are, as there are many medications available now. Lots of factors influence which medications you may be offered, but it can be helpful to research in advance. You can find out more in the links below.

The first medication usually offered is anti-inflammatory medication. If the first anti-inflammatory isn’t helpful after the recommended time period, or you’re experiencing side effects, speak to your GP or rheumatology team and ask about trying a different one. Some people respond better to different anti-inflammatories.

It’s important to be under the care of a rheumatologist to oversee your treatment. The second step of medication is often biologic therapy, and these can only be prescribed by a rheumatologist. There is evidence emerging that suggests biologic therapies started earlier may reduce the progression of axial SpA inflammation and longer-term changes. If the first biologic you try isn’t right for you, then discuss the next steps. You might be offered a second biologic, or there may also be the option of a Jak inhibitor.

This section of Your SpAce explores how you can make decisions about medications that are right for you and how to give them the best chance of improving your symptoms. Watch our next video for advice on making decisions and do share your experiences and advice in the comments.

Making medication decisions

Click to view video transcript

Take your time when deciding about medications for your axial SpA and discuss your options with your rheumatology team. If you’re considering biologic therapy, you may be able to speak to a biologics nurse for detailed advice and information. Use our treatment decision resource sheet to help you sort your thoughts and work together to find the right medication for you.

It’s important to talk about your life and lifestyle when making these decisions. For example, if you travel lots you might prefer something that’s taken once a month. Also, if you’re planning a family in the future, this will influence what medications are best suited to you.

Discuss what medication your healthcare professional would recommend, ensuring they explain any potential side effects. Make them aware of any allergies you have and any other medications you’re taking, including any herbal or natural remedies and supplements.

Deciding to start a new treatment can bring up lots of different emotions. Some people feel hopeful that this may help them, but it can also bring up difficult feelings. If you’re experiencing anxiety or feeling down, do speak to a loved one or you may wish to speak to a professional. In some areas you can self-refer to Talking Therapies, but your rheumatology team may also have someone you can speak to. You can also seek support from other people with axial SpA. Although everyone is affected differently, it can be nice to speak to others who can empathise.

You can ask for time to think before starting a new medication or switching medications. If you wish to do this, discuss it with your healthcare professional, make it clear how much time you need, and ensure you have a follow up appointment booked within the right amount of time.

Medication can make a huge difference to life with axial SpA, but it’s still essential to keep active and there are lots of helpful self-management techniques we’ve shared in other Your SpAce modules.

Getting started and continuing biologic therapy

Use our medication tracker sheet to help you track your medication doses. Download a copy to print.

Download a copy to complete on your computer. Simply download the document, open with your usual PDF reader, click on the text boxes to complete, and then save a copy.

For advice on self-injecting, watch our video.

Click to view video transcript

Biologic medications are usually delivered to your home by a specialised delivery company. Often a nurse will guide you through your first injection.

Keep a note of any contact details you need somewhere safe that you can access easily, for example your rheumatology advice line, biologics nurse, and medication delivery company. Usually the delivery company have an app you can download to manage your deliveries and report any issues.

It can take up to 3 months or more for you to start feeling an improvement after starting biologic therapy, so it’s important to track your symptoms over time. You’ll also be monitored by a healthcare professional to check how things are improving.

When you’re taking a long-term medication, it’s easy to lose track of doses, particularly when it’s working well and you’re feeling good. If you’re struggling to remember to take your medication, consider using a paper calendar, an electronic calendar with reminders, or ask a friend or family member to help remind you. You can also use our medication tracker sheet, linked below.

While taking biologics, you’ll usually need regular blood tests to monitor for any side effects. Keep up to date with these, even if you feel the medication is working well. If you’re struggling with side effects, contact your healthcare professional as soon as possible.

Some people are nervous about self-injections. If you’re finding this difficult, speak to a biologics nurse or the medication helpline that’s often available through the delivery company. You can also watch the video linked below for practical tips.

It’s important to take your medication as prescribed. However, there are times you should stop biologic therapy under guidance from a healthcare professional. For example, if you’re having surgery or have a serious virus or infection. Contact your rheumatology department for more details or before stopping. If you’re seeing another healthcare professional or are admitted to hospital, make them aware of the medication you’re taking.

It can be really helpful to speak to other people with axial SpA, as they can often give practical tips and share advice. Do consider coming along to one of our free online meetups.

Remember that activity and exercise is essential for managing axial SpA long-term, even if medications are managing your symptoms. Using self-care techniques have a really positive impact too. Explore the other Your SpAce topics for practical tips and advice, as well as to hear from other people with axial SpA about what’s worked for them.

How others make decisions about medications that are right for them

Click to view video transcript

It’s important to me that my treatment choice is a shared decision. I read information from my clinicians, do my own research, and listen to other patients. Weighing up whether information comes from trusted sources, but remembering that there’s no one size fits all. I make sure the medication I’m trying is suitable for my axial SpA, but also for my correlating Crohn’s disease. I ask my clinicians if they’re aware of any potential adverse negative effects, or drug interactions. But it’s also important to me that I know I have a clear pathway of support if I do encounter a negative response.

My top tip when making a decision around new medication is to understand side effects, but not get scared or phased by them. It’s very easy to look at a number of like 1 in 100 get side effect X. But I like to flip that on its head and look at it more positively, because that means 99% of people using that drug didn’t get that side effect. So try and frame it in a positive sense, because these drugs have been thoroughly tested and the benefit generally far outweighs any of the potential side effects.

Hi, I’m Yeliz Prior, a healthcare professional living with axial spondyloarthritis. As someone well versed with the medication options and research, I thought I’d have it all figured out. But the truth is, finding the right treatment for me was a challenge. It took working closely with my rheumatologist exploring various treatments to really understand what my body needed. Now with weekly biologic injections and daily NSAIDs, I’m managing my symptoms well. It’s been a journey, but one that’s led to better quality of life, and if I can do it, you can too. Let’s keep the conversation going.

Hi, I’m Joe, and since my diagnosis with axial SpA in 2012, I’ve been navigating the world of medications. Primarily relying on biologics for treatment. Initially I left the decision to my rheumatologist, however, over the past 12 years I’ve become more involved in my care. Researching, listening to others’ experiences, and discussing options with my clinical team. And while I value their expertise, the ultimate decision often rests with me, considering the treatment’s potential benefits for managing my AS, reducing my pain and fatigue, and helping me live well. Biologic therapy has had its challenges, but overall it’s made a positive impact on my condition. So any alternative would need to offer similar benefits to earn my confidence. Thank you.

Find support from other people with axial SpA: Your SpAce meetups

Connect with others by attending one of our free online meetups. They’re relaxed and friendly. An opportunity to meet other people with axial SpA, get support and share experiences.

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