Between relapses, people who have relapse-remitting multiple sclerosis (RRMS) might not have any apparent symptoms or they might even improve. They often “feel” better and opt to go off their medications. Unfortunately, this can worsen their long-term prognosis.
MS is an autoimmune disorder, where the body’s immune system attacks myelin. Myelin, which forms a protective shield and insulates the lining of nerve fibers, is crucial to proper functioning of the nervous system. MS drugs are immuno-suppressive, which means that they work by suppressing, or altering, the activity of the body's immune system, thereby protecting myelin and preventing further destruction of the myelin sheath. Once you stop taking them, you allow your immune system to return to full strength and to attack your myelin again. You may not have any sign that this is happening until it’s too late, and you have a relapse.
What happens when you skip your meds
Your medications do not cure MS, but they do reduce the frequency and severity of attacks and the development of new brain lesions. In addition, some medications may slow down the progression of MS, reducing future disability.
“Clinical studies show that patients who had gaps in therapy lasting 90 days or more were nearly twice as likely to experience a severe relapse,” says Dr. Gabriel Pardo, director of the Oklahoma Medical Research Foundation Multiple Sclerosis Center of Excellence.
“It’s important for patients to find a routine that works for them and that they can adhere to,” he says. “Patients might feel well between relapses, but in fact the disease is progressing and they might not recover from their next relapse. The disease is still progressing, although the patient doesn’t know it. The brain has a great ability to repair itself and find new pathways. But if you create a roadblock the brain can get around it some of the time, but not all of the time.”
How to improve your doctor-patient relationship
Good communication with your doctor is essential to properly managing your MS. “A primary issue for MS patients is to assure that there is open communication between patient and doctor,” asserts Dr. Karen Blitz of the Holy Name Medical Center. “The issue is that people want to be good patients and please the doctor, and may not bring up problems that need to be explored more directly.”
“For instance a patient may be non-compliant because she has injection fatigue or skin issues from repeated injections, and switching to oral medications may be a good option. Doctors have to ask the right questions and examine patient functioning, not just do routine tests or measure muscle strength.”
“Patients tend not to sabotage treatment unless they have a bad relationship with their doctor,” says Dr. Saud Sadiq, the director and chief research scientist of the Tisch MS Center in New York City. “You have to convince them why they should be on treatment, but not all patients do. No one wants to sabotage themselves.”
Your doctor should ask you what your goals are, says Dr. Sadiq. Then, you can make a treatment plan you can both agree to with well-defined goals. “When patients complain or fail to follow a treatment plan, it’s usually because those goals are murky and they don’t understand what’s happening. They go home not sure how the latest prescribed medication will work, there’s no follow up. If you come to me with pain, I’ll ask you where it is on the pain scale. If it’s an 8, then the goal will be to get it to a 2. I’ll try a few medical approaches and tell you to call me back in two weeks. If it’s not better I’ll increase the dose or switch meds.”
Seek treatment for depression
Depression is far more common in MS than in patients with other diseases, even cancer. “We don’t know why,” says Dr. Pardo. “Approximately 50 percent of MS patients will get depressed at one time or another.”
Don’t be ashamed or embarrassed to talk to your doctor about your mood issues. Antidepressants such as Prozac and other SSRIs can and do help MS patients. Traditional psychotherapy or cognitive behavioral therapy can also be very helpful.
Join an MS support group. Sharing tips, information, and feelings about coping with MS will keep you from feeling isolated. Your National MS Society chapter can help you find a local group or online forum.