As soon as you were diagnosed with multiple sclerosis, you had many decisions to make. One of those was whether to use a disease-modifying drug and, subsequently, which one to use. You did your research, talked to friends and family, read online forums, and worked with your neurologist to choose an appropriate treatment plan which was right for you.
That treatment plan may have included a disease-modifying drug. What was the purpose of that drug? To slow the progression of the disease, to reduce lesions, and to limit the number of relapses you might have. Together, successful achievement of these goals hopefully prevent you from accumulating physical disability while you are on this MS journey.
But how do you know if the medication is working? MS is such an unpredictable disease with many natural ups and downs that it can be difficult to know if the medication is making a difference. However for some patients, it is obvious. If you begin using medication and you notice a significant reduction in progression, relapses, and lesions, then absolutely you can believe that the medication is working. If your condition stays about the same without any great change, then you may believe that the medication is working (however it’s still hard to know for sure). If you begin to experience more progression (perhaps even more quickly than before) and you are obviously on the fast roller coaster of relapsing-remitting MS that is spinning out of control, then you and your neurologist may decide that it is time to switch medication. That is when you need to do your research again to consider what your options are.
A couple of summers ago, I started conducting some research. My MS was becoming active again after years of faithfully using one medication. Two rounds of IV steroids were harsh and I asked my neurologist if we should consider other options. The first thing he ordered was an MRI to see if my lesion load had changed since the last MRI had been conducted more than a year previously. It had not; not a single new lesion to be found, which was excellent news.
Why the new symptoms and continued relapse? We can’t say with absolute certainty but it is likely due to the inflammatory nature of the disease. Not everything is cut and dried with MS. But as a result of my questions and research, my doctors and I chose a different treatment approach which has been successful. It is important to know that the process of switching medications began with my question of "what can we do to change this situation?"
But what if it is not symptoms or relapses which have you questioning your disease-modifying drug? What if it is the side-effects of your current medication which have become unbearable? Maybe you have developed antibodies to the treatment and it is doing more harm than good. Maybe due to severe side-effects and reactions, you have stopped being compliant and no longer are adhering to your treatment plan. These are also good reasons to talk with your neurologist about changing medications.
Regardless of the reason for your interest in changing medications, it is important that you discuss your concerns with your neurologist. Your personal situation is like no one else’s. You are unique. Don’t be shy, if you want to know what your options are, do your research and talk to your doctor.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.