Therapy options for those living with multiple sclerosis have come a long way since the time I was first diagnosed 13 years ago. Back then, there were only four disease-modifying therapies and all of them were injectable. In the spring of 2005, when I was talking to my neurologist, the DMT decision I had to make came down to the frequency of injections. I could choose either the everyday option, the every other day option or the once a week option. I was told that they were all good, safe options, so it would come down to my preference.
Today, the landscape has completely changed. In 2010 when I was working at the neuroscience clinic, the buzz around the office was about the excitement over a new oral MS medication that was about to be approved. Even though there were side-effects and it required additional monitoring, some people preferred the option of an oral DMT over the injectable. Today, 13 years after my diagnosis, there are now fifteen approved DMTs for MS.
While having so many options to choose from is great, it can be overwhelming to decide which treatment option is best for you. Here are some tips to help you navigate the decision-making process so you can choose the right therapy for you.
Set the proper expectation for therapy. There is no cure for MS. The term DMT, disease-modifying therapy, means that there are treatments that can modify the course of the disease. This means that these treatments can hopefully manage, or possibly reduce, relapse rates, delay the progression of the disease and limit new disease activity on MRIs which hopefully leads to a better quality of life. Once you understand that there is no cure and that it is important to monitor, manage, and modify the course of your disease to get the best possible outcome, you will be more likely to find and stick a DMT that works for you.
Establish clear communication of therapy preferences and objectives with your neurologist. Now that we have established that the DMTs do not cure MS, it important to know that the DMT you choose is a long-term decision. When talking to your neurologist about DMTs, it is important to say that you do not prefer needles, or that you have problems remembering to take pills. If you cannot adhere to the DMT plan of care, the therapy may become ineffective. If you think you will be able to comply better to a once a week shot than a once a day pill, then it is important to state that. Remember that your neurologist is your partner in care for your MS, so it is critical that you both are on the same page in your DMT decision.
Choose your DMT preference. There are three categories of DMTs: self-injection, oral medication or infused medications. A comprehensive list of FDA approved DMTs is available. Whichever modality you choose, they all have their pros and cons. For example, oral medications are convenient; self-injections are cost effective; and infused treatments are thought to be more efficacious. The front-line options are typically the self-injection or the oral medication. This means that when you are first diagnosed, these are the DMTs that you will most likely be recommended. Some of the self-injections have been around long enough to have a generic equivalent, so the self-injections and now generics can have some cost savings benefits if you can tolerate needles. The infused medications are typically for those who break through on front-line treatments. These are typically infused in either an infusion clinic either at a hospital or stand-alone medical facility. While the infused medicines can be more efficacious in some cases, there is also the possibility for side effects. It is important to understand all aspects of any treatment before you decide to start.
Talk to others who have been on the DMT. This is a double-edge sword, but it is important to understand the patient experience from others who are on therapy. Considering the source of the information is equally as important. Now, if you decide to go the social media route, understand that there may be biases that are not expressed in the posts. Each DMT provider has patient engagement programs where a patient advocate speaks about their experience, but they are paid to endorse a product. However, at those events you can meet with others and learn their stories.
Knowing when to switch. When you start a DMT, it is important to keep a journal of symptoms. Are you having a rash or fever after you take your therapy? Was it a one-time thing or does it happen every time? You need to report these instances to your neurologist right away. Or if you start a treatment and you continue to have excessive exacerbations (relapses) and symptoms, talk to your doctor about switching to a different DMT option. Don’t continue a DMT just because you and your neurologist thought this was the best thing for you at the time. Stopping or switching a treatment is just as important of a decision as starting a DMT. You will want to repeat all the previous steps to ensure you get on the DMT that works best for you and your quality of life.