Decision time: How to prepare for the treatment conversation

Thanks to medical researchers, treatment options for multiple sclerosis (MS) are on the increase. While it's reassuring to know that the men and women in white coats are on the case, if you don't have a degree in medicine, the treatment choices can seem overwhelming. The drugs have different pros and cons, and not all of them may be suited to you. But that's a decision for your doctor to make, right? Not entirely.

There are several forms of MS, and each affects different people very differently, which means there's no "one-size-fits-all" treatment for everybody. And if you have MS, you'll know you're in this for the long term. That's why your doctor will usually want to involve you in the decision-making process. For you, this may feel like a huge responsibility – but it's important to remember that you know yourself better than anyone. Your doctor will guide you through the options, but in most cases you'll be asked your preferences.

Unfortunately, this isn't a decision that can be put off for long. Damage to your brain and spinal cord can be happening even when there are no symptoms – so the sooner you start treatment, the sooner you can be sure you're doing everything to protect your health. Here are a few key questions to help you talk about the options with your doctor.

Does it work?
For a drug to be licensed and available for prescription, it has to be proven to be effective, which means your doctor will only suggest a treatment that can benefit you. Different drugs work in different ways. Drugs designed specifically for MS treat the disease and aim to slow disease progression. These are known as disease-modifying drugs or treatments (abbreviated to DMDs/DMTs). They can reduce the frequency and number of relapses and, in some cases, reduce the number and volume of active brain lesions. Disease-modifying drugs/treatments can also slow down the progression of disability. Unfortunately, a cure for MS has yet to be discovered, so the emphasis of treatment in MS is on preventing damage, thereby protecting the brain as much as possible. The hope is that by starting treatment as soon as possible, and sticking to it, the potentially disabling consequences of the disease may be postponed over the long run.

What are the side effects?
Different drugs affect people differently, and no drug comes without potential side effects – even that headache pill you reach for without thinking. For a drug to be marketed in Canada, the drug company must file a New Drug Submission to get approval from the Health Products and Food Branch (HPFB) of Health Canada. The HPFB will review all aspects of the drug, including its risks and side effects, before authorizing the drug for sale in Canada.

Some side effects can be minor – nausea, for example – while others can be extremely serious, such as liver damage. Your doctor will identify treatments that are most likely to benefit you based on your medical history. He or she will be able to talk you through the common side effects for each treatment, and whether they are likely to be lasting or just part of the adjustment period while your body gets used to the medication. When you start taking a new therapy, there is often a period of "titration" where the dose is slowly ramped up to help your body to ease into it.

It's important for you to take your medication as directed and to follow the instructions included with your medication. This includes reporting any side effects that you experience. Your health care team will also monitor you to make sure that the medication is appropriate for you. To help them, you need to keep them informed about how you are feeling so that they can make any necessary changes to the treatment or dosage you are taking, to find the best match for your body.

How safe is it in the long term?
After a drug has been tested in clinical trials and it is licensed for use, the manufacturers continue to have an obligation to collect data on its safety in the real world. This is just in case any side effects that weren't seen during the clinical trials appear over the long term. Ask your doctor about each drug's long-term safety profile to help you weigh the pros and cons. Because after all, when you find a drug that works for you, you're likely to be on it for a long time.

Will it fit with my lifestyle?
Another key consideration is how easy a drug is to take. If you're squeamish about needles, for example, then injections may not be the best solution – but if you're not comfortable swallowing capsules, other treatment options might be preferable. It's also worth thinking about how often you'll need to take your medication. The frequency with which drugs are taken can vary from daily to once every few months. And while some drugs can be easily self-administered at home, others need to be administered by a specialist in a hospital or clinic.

To ensure that safety is monitored appropriately, each drug will also come with different check-up requirements, when you'll need to be assessed by your health care team. The frequency of these check-ups, as well as what is monitored, varies from drug to drug.

Finally, do you travel a lot? Some therapies need to be kept refrigerated – again, it's a case of deciding which treatment would fit best with your lifestyle.

What other treatments have I taken or am I taking?
If this isn't your first treatment for MS, why are you looking at a new one? There could be a number of reasons why you might need to change therapy. It might be because of a relapse, new or recurring symptoms, or just that you don't tolerate the treatment well. There are many different treatment options available now. Do your research; ask your physician questions. Talk to your nurse, too – they are great people to talk to about whether your current treatment is still the best option for you.

Am I happy with this decision?
If there are still doubts on your mind, try drawing up a list of the options and writing the pros and cons in separate columns alongside each one. Seeing the choices on paper will help you to be more objective – hopefully the treatment with the most pros and the fewest cons will be obvious. If you're still not sure, explain your concerns to your health care providers and they will be happy to clarify the issues. You may also find it worthwhile talking to friends and family, or even a counsellor, as they will be able to help you decide what's most important to you. No one can make the decisions for you, but talking them through with your support networks can help.

What if I change my mind?
Ultimately, it's your prerogative. MS is a chronic disease that you'll be managing for the rest of your life. You may find that a drug that is effective and fits with your lifestyle now won't be the best option for you later down the road. The key is to take your medication as it's prescribed and to listen to your body (and your doctor!). If you feel like the drug isn't working, or you're struggling to take it at the right times, then explain your concerns. Together with your health care professional, you can make sure that the treatment you opt for is the right one.



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