When MS Treatment Isn't Working continued...
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.