Multiple sclerosis (MS) is a complex, individual disease. No two people with this disease have the same symptoms, progression, or response to treatment. That makes a collaborative approach with your doctor even more important than usual. It's key to tailoring multiple sclerosis treatment just for you, and it's especially helpful if you need to make changes to your MS treatment along the way.
"Become empowered to participate in your treatment decisions," says Barbara S. Giesser, MD, clinical director of the UCLA MS Program at the David Geffen School of Medicine in Los Angeles. "It's the single most important underlying principle, especially for a chronic, unpredictable condition such as MS."
There are four types:
Relapsing-remitting. This is the most common form. You have flare-ups followed by periods without symptoms, called recovery.
Primary-progressive. With this type, you do not get the ups and downs. Your symptoms get worse over time.
Secondary-progressive. You get flares and recovery periods at the start, then symptoms steadily worsen.
Progressive-relapsing. This form is very rare. Symptoms worsen from the start. You experience...
How do you do that? By seeking information from reputable sources and communicating well with your health care providers.
When MS Treatment Isn't Working
Before you and your doctor take any steps to switch treatment, make sure you're taking your MS medication exactly as prescribed. "One of the most common causes of a poor response is simply not taking medications the right way," says Jack S. Burks, MD, chief medical officer of the Multiple Sclerosis Association of America.
Whatever you do, don't just stop taking medications because you think they're not working -- or because you think you don't need them. Talk with your doctor about your concerns. Burks' patients sometimes say, "Gee, doc, I haven't had an attack in a long time, maybe I don't need these medications," to which he responds, "Maybe the reason you haven't had an attack is because you've been taking the medicine!"
Each class of MS medication works in different ways. So be clear about what your MS medication is designed to do before deciding that it's not working. For example, disease modifying therapies (DMTs) slow MS progression. If you're also expecting them to control all your symptoms, says Giesser, you may be alarmed if that doesn't happen.
Burks recommends starting with a basic question like this: "Given my situation, doctor, how do you decide whether or not my medication is working up to expectations?" Although a tall order, the best way is by looking at a wide range of factors from symptoms and function to number of attacks and MRI findings.
If side effects are more than you can stand, then something needs to change. If you're noticing serious changes in how well you're functioning or if you're having many more relapses than in the past, that's also a red flag, says Burks. Document and share these changes with your doctor.
By the same token, don't equate symptom control with overall disease control. Even if you feel pretty well, your doctor may recommend a change in treatment if more lesions are showing up on MRIs or if neurologic exams are worsening, says Giesser.
However, don't switch medications unless necessary, says Burks. "When you switch to another drug, you may actually not get as good a response." That's because these drugs differ in how they work on inflammation and damage.
By putting your heads together and listening to each other, though, you and your doctor can decide if your medications are working well enough – and can develop the best course of action for you. "That's not just in terms of effectiveness," says Burks, "but also in terms of side effects."