Not surprisingly, though, MS patients have some questions about choosing which drug to use, determining whether it’s working, and looking out for potentially dangerous side effects. Here, Michael Hutchinson, MD, PhD, an associate clinical professor of neurology at the Icahn School of Medicine at Mount Sinai in New York City, answers some common questions about disease-modifying MS drugs.
1. When should I start taking a disease-modifying therapy for MS?
The optimal time to begin treatment, says Dr. Hutchinson, is “almost immediately,” regardless of whether your symptoms are quickly getting more severe or are staying the same. “Whether you have a slowly or rapidly progressing form of MS,” Hutchinson says, “a disease-modifying therapy will reduce the relapse rate by up to 50 percent.”
2. How does my doctor decide which treatment to start me on?
While there is no established “best” medication to start with, says Hutchinson, as a neurologist, he might select a medication based on the severity of a person’s MS as well as on the speed of progression. For rapidly progressing MS, he might select a more potent medication such as Gilenya (fingolimod). When MS is progressing less rapidly, Hutchinson might choose a medication that is not as potent but also isn’t associated with as many side effects, such as Avonex (interferon beta-1a). “The most potent drugs come with the most side effects,” says Hutchinson. “If a person has frequent relapses, their medication may be switched from a less potent medication to a more potent drug with potentially more side effects.” RELATED: Multiple Sclerosis: Symptoms or Side Effects?
3. How will I know if my MS treatment is working?
MS medication prevents relapses and progression; it doesn’t make you feel better in the short term. So the best way to assess whether a treatment is working is to observe how frequently relapses occur. Annual MRIs can also give some information about whether the disease is progressing.
4. How quickly will I see results from my disease-modifying MS therapy?
In some people, months or even years go by before a relapse occurs, so it may not be immediately obvious that an MS therapy is working. Patience is necessary when assessing the effects of a new treatment.
5. How long should I stick with my disease-modifying MS therapy before switching if I see no results?
The decision to switch from one MS treatment to another should always involve a discussion with your physician. According to Hutchinson, switching is typically considered “if there is radiological evidence that shows substantial progression.” This means that your MRI shows continued damage to myelin, the fatty substances that surrounds nerve cells. This indicates that your MS is worsening and that possibly another medication could better help you.
6. Who can help me learn to inject my medication?
The pharmaceutical companies that make injectable MS medication often have nurses who will come to your home to teach you how to inject it. In other cases, the prescribing physician, a nurse, or a nurse practitioner will be able to show you how to inject the medication in the physician’s office.
7. What are the most common side effects of MS medication?
All drugs have the potential to cause side effects. Here are some of the most commonly reported side effects associated with drugs used to treat MS:
Aubagio (teriflunomide): nausea, diarrhea, and temporary hair thinningCopaxone (glatiramer) or Glatopa: injection site pain, swelling, and redness; lipoatrophy (loss of fat under the skin) at injection sitesCorticosteroids (used to treat relapses): insomnia, stomach upset, metallic taste in the mouth, and mood swingsGilenya (fingolimod): headache, flu, diarrhea, back pain, and coughInterferon beta medication, including Avonex, Betaseron, Extavia, Plegridy, and Rebif: flu-like symptoms following injections and irritation at injection sitesLemtrada (alemtuzumab): headache, rash, fever, nausea, and upper respiratory and herpes virus infectionsMavenclad (cladribine): decrease in white blood cells (lymphopenia), herpes virus outbreaks (shingles or cold sores), rash, hair loss, nausea, headache, and upper respiratory tract infectionsMayzent (siponimod): headache, high blood pressure, and abnormal liver testsNovantrone (mitoxantrone): hair loss, bladder infections, and nauseaOcrevus (ocrelizumab): infusion reactions (causing itching, rash, hives, and possibly other symptoms) and upper respiratory tract infectionsTecfidera (dimethyl fumarate): flushing of the skin and stomach pain or indigestion, nausea, vomiting, and diarrheaTysabri (natalizumab): headache, fatigue, and joint pain
Some of the side effects of MS drugs — even common ones — can be dangerous. In particular, if you develop a rash, abdominal pain, or visual changes, report it to your physician immediately, says Hutchinson. But, he adds, any side effect that concerns you should be reported to your doctor.
8. What kind of monitoring is necessary while taking disease-modifying therapies for MS?
Different drugs require different types of monitoring. In many cases, periodic blood tests are recommended to check such things as:
Blood cell and platelet countsLiver functionThyroid functionNeutralizing antibodies, which may reduce the effectiveness of the drug
People who are considering taking either Gilenya or Mayzent and who have never had chickenpox or received the chickenpox vaccine should be tested for varicella-zoster virus antibodies to see whether they are immune to the disease. If not, vaccination one month prior to starting the drug is recommended. People taking or considering taking Tysabri may be tested for antibodies to the John Cunningham (JC) virus before starting the drug and while taking it. This is because people infected with the JC virus have a higher risk of developing a life-threatening brain infection called progressive multifocal leukoencephalopathy, or PML, while taking Tysabri or any other drug that weakens the immune system. For people taking Novantrone, Mayzent, or Gilenya, heart function tests are recommended, and ophthalmological (eye) testing is recommended for people taking Mayzent or Gilenya. Before starting treatment with Mavenclad, tests for tuberculosis, HIV, and hepatitis are recommended, along with a white blood cell count. Before starting Ocrevus, testing for hepatitis B is recommended. A pregnancy test is recommended for women of childbearing age before each treatment course of Mavenclad. Pregnancy tests are also recommended for women of childbearing age taking Novantrone or Aubagio, because the drugs pose risks to a developing fetus. Finally, MRI scans of the brain and spinal cord are typically performed in all persons with MS to monitor how the disease is responding to treatment.
9. Is it safe to get pregnant while taking disease-modifying therapies for MS?
For most MS medications, it’s not known whether they can be harmful to a developing fetus. So if you want to get pregnant, you may need to discontinue your medication. An exception is Copaxone, which is a pregnancy category B medication for MS. Pregnancy category B means there is no evidence that the drug is risky for pregnant women or that it can harm a developing fetus. Novantrone is a pregnancy category D drug, which means there is evidence of risk to the fetus. Mayzent should not be used by women who are pregnant or plan to become pregnant because the drug can harm the fetus. Augabio is a pregnancy category X medication, which means it should not be used at all by women who want to get pregnant or even by men who are planning to father a child. Mavenclad, similarly, should not be taken by men or women who cannot use reliable contraception during and after drug use. Mavenclad can affect the development and quality of sperm for up to six months after treatment in men, and it can seriously harm a developing fetus during pregnancy. Other medications for MS are classified as pregnancy category C, which means there are not enough studies to rule out a risk during pregnancy. Because the Food and Drug Administration (FDA) is phasing out the use of pregnancy categories, newer drugs are labeled with a summary of risk related to pregnancy but not the letter A, B, C, D, or X. Your physician can discuss with you whether the potential benefits of using a medication during pregnancy warrants taking the potential risk.
10. Is it safe to drink alcohol while taking disease-modifying therapies for MS?
It is generally safe to drink alcohol with prescribed medication for MS, but, Hutchinson advises, “everything in moderation.” Some people with MS report that their MS symptoms, particularly coordination, become worse with drinking. In addition, certain other medications that a person with MS may be taking, such as the muscle relaxants and antianxiety drugs baclofen, Valium (diazepam), and Klonopin (clonazepam), have an additive effect with alcohol. In other words, drinking alcohol with these drugs increases the likelihood of experiencing the side effects associated with the drugs. Discuss with your physician whether it’s safe for you to drink and, if so, how much is safe. Additional reporting by Ingrid Strauch.