Nurse Catherine Asks...
There are many relapsing multiple sclerosis treatments for you to choose from.1 Yet, deciding on a treatment can be overwhelming because you have many different choices.2,3 It may be challenging to determine which one is right for you.2,3 It helps to do some research and talk to your healthcare provider to get the facts about your options.2 Why is it important for you to learn the facts before choosing an MS treatment?
Know the facts about your relapsing MS treatments
December 10, 2018
Some of the treatment options for relapsing multiple sclerosis can seem intimidating, particularly when you go online and read the possible side effects.1 When I first looked at treatment options, one listed “flu-like symptoms.”1 I asked the doctor, “Really? You think I’d sign up to feel like I have the flu? I don’t think so.” The doctor explained that not everyone had the side effect, and it generally disappeared after a month or so.1,4 I decided to put the medication back on my list of options. The point of the story is to thoroughly research the treatment plan, make sure you understand the medications’ efficacy and possible side effects, and pick the one that is best for you.2
The various aspects of medications has changed as my life has changed. Efficacy is always up there on the priority list, but when I first started taking medications for MS, the ability to consistently take the medication was very important to me. This is because my daily commute was about two hours round-trip. Now, as a retiree and grad student, timeliness is less of an issue and it’s more about how it's taken and side effects. If the side effects become unmanageable, we just change medications.
I’ve been fortunate selecting medications because I’ve had options, but have never been pressured by my doctor to pick one “right now.”1 When the time came to start a new medication, as it has on four occasions now, I got all the information I could from the neurologist, including the benefits and risks of the therapy. I then researched, made a decision, and let the healthcare provider know my decision. They issued a prescription, and we moved forward.
I have used many different research resources. This includes the manufacturers’ materials and information packets about medications, and also independent sources. The Internet has been a great resource for independent reviews, but I am careful to rely only on sites that are credible sources. My most important resources, though, have been my healthcare provider and my pharmacist. I made certain that Emily, the PharmD who worked with the neurology department, knew exactly which medications I was taking, including supplements. I asked both the pharmacist and doctor what side effects to expect, and how long they could be expected to last. Finally, I asked if there were any individual medications, or groups of medications, with known conflicts with the selected treatment option.
Knowing the medications you’re taking is important, but there can be a lot of information to absorb. If you’re concerned, ask the provider or the pharmacist, because it’s critical for you to be confident in your treatment!
Know the facts about your relapsing MS treatments
December 10, 2018
Like I always say, knowledge is power! It is important that you know the facts before deciding on a medication for relapsing multiple sclerosis. With so many disease-modifying medications out there, it is crucial that you learn about each medication in order to make the best decision for yourself.1
There are many ways to gain this knowledge. Your neurologist plays a major role in this. They can talk with you about the available medications, and the benefits and risks of each one. You and your neurologist should also discuss your lifestyle, comfort level with the administration of certain medications, other medications you are taking, and other medical conditions you have. All of these factor into the decision.2,3,5
Other than your neurologist, you can learn more about your medication options from reputable websites, magazines, informational meetings, others with MS, and various support networks.
Be sure to gather all of your facts before making a decision. Look at the efficacy, side effects, mode of administration, cost, and company support programs. Utilize your circle of support (healthcare providers, family, loved ones, peers) while making this very important decision. It is not a decision to be taken lightly.
Over time things may change and you may need to reassess. Your disease may fluctuate, you may develop side effects that outweigh the benefits, you may have another medical condition arise that interferes with your treatment, or another medication could come on the market that might work well for you. All of these are good reasons to talk to your healthcare provider about your treatment. An informed choice is the best choice.2-5
When I was first diagnosed, I was on 1 of only 3 available medications. I quickly found that it was not the right choice for me, as I continued to have exacerbations. After just 1 year, I switched to another medication. I remained on this medication for 15 years. I searched for different treatment options as my life got busier, and I was finding it harder to remain compliant with my treatment. Finally, the day arrived and, after looking at all of the data I could get my hands on, I had a discussion with my neurologist and made a change. This change turned out to be a good thing, because I saw a reduction in the number of exacerbations I was having.3
A few years later, my neurologist contacted me to inform me that a new, potentially serious side effect was noted with the medication that I was on. After much discussion, we decided that I should change medications once again.5 I went back to the drawing board and looked up all of the information I could. I attended informational meetings, and even brought my sister along for support in this decision. These meetings were extremely useful. A healthcare provider presented the medication being showcased and then a patient ambassador talked about their own journey with MS and the medication. There was open dialogue for any questions I may have had. Once my circle of support and I felt comfortable, I made the switch again. I am happy to report that I have had no problems with this medication and my exacerbations have been minimized.3
Nurse Catherine Sums It Up
There are many things to consider when it comes to choosing a treatment. The most important thing is to keep open lines of communication with your healthcare team. Let them know about your concerns, and what you’re looking for in a treatment.6 They can help you narrow it down. Explore two treatment options for relapsing MS.
What if the medication you chose isn’t working for you? Tell your neurologist, and you can work together to pick a different option. You might not get it right on the first try, and things may change.3 When it comes down to it, it is your decision and you should be informed and satisfied.
References: 1. Pardo G, Jones DE. The sequence of disease-modifying therapies in relapsing multiple sclerosis: safety and immunologic considerations. J Neurol. 2017;264(12):2351-2374. 2. Colligan E, Metzler A, Tiryaki E. Shared decision-making in multiple sclerosis. Mult Scler. 2017;23(2):185-190. 3. Giovannoni G, Butzkueven H, Dhib-Jalbut S, et al. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord. 2016;9(Suppl 1):S5-S48. 4. National Institutes of Health. National Institute of Neurological Disorders and Stroke. Multiple sclerosis: hope through research. 2017. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Multiple-Sclerosis-Hope-Through-Research. Accessed April 18, 2018. 5. Clanet MC, Wolinksy JS, Ashton RJ, Hartung H-P, Reingold SC. Risk evaluation and monitoring in multiple sclerosis therapeutics. Mult Scler. 2014;20(10):1306-1311. 6. Tintore M, Alexander M, Costello K, et al. The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction. Patient Prefer Adherence. 2017;11:33-35.