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How do I Decide?

By Cherie Binns

If you are newly diagnosed and trying to choose a disease-modifying therapy to manage your MS it may seem like there are too many choices and you are not sure what to choose. Thirty years ago, the first DMT came on the market and today there are many more to choose from. We are now seeing an actual trend of people not moving from relapsing forms of MS to progressive forms when they start and stay on a DMT early in the course of their disease. These medications are not alike and work in different ways to keep relapses at bay and minimize central nervous system damage. For some with more aggressive forms of MS, certain meds may not be effective.

For the first 11 years of DMT availability, medications were only delivered through self-injection. By 2004 we had a medication that could be taken monthly though intravenous infusion. Starting in 2010 there were a series of oral medications available. Today people who need to go on a therapy are faced with the choice of a dozen injectable therapies, half a dozen oral medications, and four medications that can be given infrequently by IV infusion. Side effects differ with each medication. Some people are seemingly sensitive to any of the medications they try and quickly go off them because of side effects they may think are allergies or intolerance. Most people, however, see a reduction in those side effects over time and what may have felt awful initially is okay a few months down the road.

There is a misconception that the DMTs make the MS better, relieve symptoms, and help us to get back to normal. The nature of MS (at least relapsing forms) is that we have periods of disease activity and symptoms that may go weeks, months or years, will resolve and then we go long periods without problems. This can confuse and make us think that the medication is working or that we may not even need our medicines. This is a dangerous way of thinking. With MS, damage is happening in the CNS even in the absence of symptoms if we are not on medications. These medications help to protect the CNS from further damage and in all cases extend the time between relapses or flares in symptoms and further damage.

Ellen Whipple, Pharm.D., consultant to MS Focus: the Multiple Sclerosis Foundation, has written an article that explains how each of the types of DMTs for MS were tested and what they do, in a nutshell. She talks about brain atrophy (shrinking of brain tissue common in untreated MS), relapse rates, the benefit of treating early, and therapies that are being looked at to repair damaged myelin.

The injectable medications all have a safety profile that extends back almost 30 years. These are the only drugs that are considered safe to be on while trying to get pregnant (for women only). There have been enough people on them who have gotten pregnant and delivered healthy babies that they, for the most part, are what are recommended to those who are trying to start a family. The oral and infusible medications are thought not to be safe. Aubagio is one oral medication that neither men nor women can be on when conception takes place as it comes with a warning of serious birth defect potential (in animal models in the lab).

So, how does one decide what medication to take when a therapy is recommended? Your doctor may be comfortable with only a handful of DMTs and may tend to stick with a certain group to prescribe. This is generally not the drug company pushing their med by offering perks but merely a familiarity and comfort with how certain meds are working for their patients over time. Some of us are afraid of needles and right out of the gate say “no injectables.” These are the safest of all of the drugs on the market. Some people say, “I will only take a pill and not a shot or an IV”. They have not looked at the gastrointestinal side effects or the effect on the liver of those drugs. Some folks tell me that they want the least intrusive schedule of meds so only two times a year IVs are what they wish (not taking into account the potential of certain blood disorders or cancers that might be more prevalent with that class of drugs).

You need to stop for a moment and think about your own tolerance for risks. What is your family history of cancers or auto-immune disorders? Is it fear that is keeping you from living your healthiest life? What do you need to overcome that fear? Remember that the side effects posted in the literature affect a tiny fraction of the total number of persons taking any drug. You owe it to yourself to learn as much as possible (from reputable sources) about how each group of drugs work and also draw on the expertise of your neurologist with these meds. Ask questions. Read. Listen and reach out to www.msfocus.org with any questions we might help you to answer.