Managing MS

Understanding side effects and symptoms

Understanding side effects and symptoms

Symptom or side effect? Side effect or symptom? Understanding the difference between the two isn’t easy, but being able to identify a symptom from a side effect can help you to have more effective conversations with your healthcare team and make treatment decisions that are right for you. 

Living with multiple sclerosis (MS), it’s likely you’ll experience a range of symptoms. It’s also likely that you’ll experience side effects associated with any disease modifying treatments (DMTs) that you may be taking. But how can you tell the two apart? The broad nature of MS symptoms makes it extremely difficult to distinguish side effects of treatment from symptoms caused by the condition itself. However, having a good understanding of side effects and symptoms and what they are, can help you to have more informed conversations with your neurologist, and together you can determine the most effective management plan for you.

    Symptoms are physical or mental changes experienced by someone due to a particular disease. As the MS disease process targets the central nervous system (CNS), MS can result in a wide range of physical and mental symptoms. But it’s important to remember that every person living with MS is different and not everyone will experience the same set of symptoms. The symptoms you experience will depend entirely upon the areas of your CNS that are affected by MS, and so you may experience some symptoms that are completely absent in others living with the condition, and vice versa.

    Physical symptoms related to MS can include mobility problems, fatigue, pain, problems with balance and issues with speech, vision and swallowing. People living with MS may also have difficulties with concentration, multitasking and problem solving, in addition to experiencing emotional symptoms such as depression and anxiety. If you would like more information, you can explore the symptoms of MS in further detail

    Make sure you talk to your doctor about any symptoms you are experiencing.

    Make sure you talk to your doctor about any symptoms you are experiencing. It’s important that you highlight any new or changing symptoms to ensure your treatment plan continues to be the most appropriate for you.

    With any treatment that you take, there is a possibility you will experience side effects. These are secondary and unfavorable reactions that occur in response to a treatment. To help support your understanding of side effects that can occur while taking a DMT, we have grouped together some of the most common side effects related to different MS treatment types. Looking at the different MS treatments you can see that some side effects are common among all DMTs, whilst others are more specific to the type of DMT or are associated with the method of administration.

    Risk of infection
    Due to their influence on the immune system, all DMTs can increase your vulnerability to infection and reduce your ability to fight them off. As such, it’s important to monitor for signs of infection as a side effect following treatment with a DMT. Some of the main signs of infection to look out for include a fever, chills and swollen glands. Speak to your doctor or MS nurse immediately if you are experiencing any of these side effects. 

    Possible side effects associated with DMT method of administration
    Side effects can also be directly related to how a treatment is administered. Some DMTs are taken orally in tablet form once or twice daily or are self-administered by injection.  Others are administered by infusion, whereby the drug is given directly into a vein. This type of DMT is given in the clinical setting by a trained healthcare professional. Each method is associated with their own selection of side effects.

    For example, DMTs given by injection are often self-administered on a regular basis and may result in a response at the DMT delivery site. Such side effects are called injection-site reactions and are usually mild. These include:

    • Redness
    • Itching
    • Pain
    • Swelling
    • Bruising

    For DMTs administered by infusion, most of the side effects occur during and/or up to 24 hours after an infusion and are collectively known as infusion-associated reactions. Whilst they may differ between treatments, some common infusion-associated reactions include:

    • Headache
    • Fever
    • Rash
    • Nausea

    The side effects mentioned above are not exhaustive and will differ between DMTs. It’s important to make sure you are familiar with the potential side effects of your MS treatment, however whilst you may experience side effects that are listed above, you may experience some that haven’t been previously reported. You may find it useful to ask your neurologist what side effects you are more likely to experience with the treatment you are prescribed. If you know what to look out for, you’ll be able to identify them earlier.

    Make sure you talk to your neurologist about any side effects that you experience.

    Make sure you talk to your neurologist about any side effects that you experience. This will ensure that your neurologist understands the full impact they are having on your quality of life and that they are treated appropriately.

    When assessing your treatment plan, your neurologist will consider your preferences for treatment and the relative impact of both symptoms and possible side effects on your quality of life. If you are struggling to tolerate your treatment or are having problems adhering to your prescribed drug, your neurologist may suggest switching you onto a treatment that better matches your lifestyle. Alternatively, you may benefit from a more effective drug if the burden of your MS symptoms outweighs that of the increased side effects often associated with more effective DMTs.

Explore our Discussing treatment with your neurologist article for more information and useful tips on how to talk to your neurologist about symptoms, side effects and anything else that’s important to you.

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