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."
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."
Preparing for Your Doctor Visits
When changes to your medications are needed, how can you achieve the best results? Prepare for your discussions, keep your thoughts organized, and direct the conversation in an efficient way, advises Burks.
He recommends using a memory aid, called SEARCH, developed by the Multiple Sclerosis Association of America. Framing questions about medications in a way both patients and doctors can understand, it provides a starter list of questions organized around issues of:
- Safety. (How does this DMT interact with my current treatments?)
- Efficacy. (How effective is this DMT in reducing MS relapses?)
- Affordability. (Are assistance programs available to help pay for this DMT?)
- Risk. (How can I manage side effects of this DMT?)
- Convenience. (How often do I need to take this DMT?)
Health outcomes. (Will this DMT affect my immune system?)
"Like GPS, SEARCH helps you navigate the landscape to reach your desired destination," says Burks, which has become more challenging -- yet hopeful -- given a growing array of new treatments.
After you've prioritized your list of questions, he suggests sending them to your doctor beforehand, saying, "These are the questions I'd like to discuss with you." Advance preparation will allow your doctor to give you a more thoughtful response.
Exchanging Information With Your Doctor
Communication should be a give and take, but remember that you know best how MS is affecting your body, mind, and emotions. "Doctors are only as good as the information we get," says Giesser. How well you communicate with your health care team will make a big difference in the quality of MS care you receive as well as in your overall well-being.
Likewise, expect respect from your health care team and don't accept glib answers, says Burks. For example, this is not a response to settle for: "None of these meds cure the disease so, sure, you're going to have problems. ... Just stick with it." Instead, insist on clear discussions about your attack rate, progression of disability, MRI results, or intolerable side effects. "Don't be afraid to press your doctor if there is something you don't understand," says Burks.
Bring your top questions to each of your doctor visits. Put your biggest worry on the front burner where your doctor won't miss it. Are you feeling more depressed or anxious? Trouble staying focused? Your doctor won't be able to guess what's concerning you most. Speak up, even about issues you find more difficult to discuss, such as sexual changes, mood problems, or bowel function.
Sometimes these can become "don't ask, don't tell" problems, says Giesser. "The doctor is uncomfortable about asking, and the patient is uncomfortable about telling," But bring them up, she says, because they are very, very treatable.
Speak as clearly and concisely as you can, Let your doctor know about any:
- Feelings of hopelessness
- Fears of needles or side effects
- Previous bad experiences with health care providers
- Mixed messages from members of your health care team
- Inability to cope with the unpredictability of the disease
When describing symptoms, be specific, says Giesser. For example, people might simply describe pain as severe. She prompts patients to go further, like this: "If you tell me where it is, what brings it on, whether it's burning or stabbing or achy or grabby - the more information I have, the better I can tailor a therapy."
Exploring Your Options for New Treatment
The good news is that if you need new medication, there are almost always new ones available to try. If your doctor recommends a new type of treatment, says Burks, ask, "Why this one? What can I expect? And what are the downsides?"
In addition, Giesser suggests questions like these:
- What are my other options?
- Why are you suggesting a change in therapy?
- What do you hope this change will accomplish for me?
- What are the potential benefits?
- What are the potential side effects?
- What monitoring is needed?
- Will I need to change anything in my daily routine?
As for treating symptoms, be persistent. "We now have so many new treatments for symptomatic management that we didn’t have just a few years ago," says Burks. These include drugs to help with walking or spasticity, for example.
Also, ask about physical therapy to help with walking techniques, cognitive rehabilitation to help with mental changes, psychotherapy, and complementary approaches such as massage, yoga, or acupuncture. Some of these improve function and increase independence while others prevent complications or provide emotional support. Together, you can find approaches that will work better for you.