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Adherence

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Overview

Adhering to your treatment plan is the best possible strategy for managing your multiple sclerosis (MS) — and continuing the disease-modifying medication that you and your healthcare provider have chosen is an important part of that plan. Because taking a disease-modifying medication over a long period of time can be challenging, it’s important to understand the role of disease-modifying therapy in your overall MS treatment plan and to be aware of the obstacles that can most often interfere with adherence to that plan.

Why is early treatment so important?

MS experts recommend that anyone who has been diagnosed with a relapsing form of MS should consider beginning treatment with an FDA approved disease modifying medication soon after the diagnosis is established, and many also recommend treatment for those who have been diagnosed with a clinically-isolated syndrome (CIS — a first episode of neurologic disease).

The possible benefits of these medications include:

  • Reduction in new areas of inflammation and damage in the central nervous system (CNS) – that can be seen on magnetic resonance imaging (MRI)
  • Reduction in the number of exacerbations (also called relapses, attacks, flare-ups)
  • Reduction in progression of disability

Individuals diagnosed with primary progressive MS should talk with their healthcare provider about starting treatment with Ocrevus -- the only medication approved by the U.S. Food & Drug Administration (FDA) for the treatment of primary progressive MS. Individuals with secondary-progressive MS should talk with their healthcare provider to see if they are a candidate for a disease modifying treatment.

Recommendations for the use of disease modifying medications in multiple sclerosis are outlined in the MS Coalition Consensus on Disease-Modifying Treatment in MS. 

Why are some people reluctant to start treatment?

Absence of symptoms — A person whose symptoms have disappeared may not see any reason to start treatment. However, the research shows that the disease can be causing significant, irreversible damage in the CNS even if you aren’t experiencing any symptoms at this time.

Fear of needles — Some of the available medications are given by injection (under the skin or into a muscle) or by infusion (into a vein). Many people hate needles. However, the manufacturers of these medications offer support programs to help you become more comfortable, and effective tools are available to help with self-injection anxiety. Some oral medications (given by mouth) have also been approved for use in MS and CIS.

Expense — All of these medications are expensive and insurance coverage varies considerably from one insurance plan to another. However, each of the manufacturers offers a financial assistance program that helps many people have affordable access.

Fear of side effects — Each of these medications has side effects, and some people may hesitate to take a medication that has side effects or risks. However, your healthcare provider and the support program offered by the manufacturer of your medication can give your tips and strategies to reduce the side effects and make them more manageable. Most side effects diminish over time. Concerns about risks should be discussed with your healthcare provider so that there is a better understanding of the risks associated with a particular treatment.

Why do some people stop taking their medication?

The disease-modifying medications are designed for long-term use — and it is recommended that people continue their medication unless the side effects are too severe, the medication is clearly not working or a better treatment becomes available. However, many people stop their medication after a period of weeks or months — and here are some reasons why:

“I’m not feeling any better.”

It’s important to remember that the disease-modifying medications are designed to reduce the underlying disease activity. They don’t treat symptoms, cure the disease, or make people feel better — in fact, you may not be able to feel them working at all. But your disease-modifying medication is an important investment in your future because it’s working “behind the scenes” to help slow disease process.

“The side effects make me feel worse than the disease.”

Some people have more problems with side effects than others. Whatever side effects you are experiencing are best managed in collaboration with your healthcare team and the drug manufacturer’s support program. People who experience intolerable side effects that don’t improve over time should talk with their healthcare provider about other medication options.

“I have taken my medication but I had an exacerbation anyway.”

None of these medications are able to cure MS or completely stop its progression. Some people will continue to experience activity even while taking their medication faithfully. You and your healthcare provider may determine that a change of treatment is needed if your MS disease activity persists despite adherence to your medication.

“My insurance stopped covering the medication I was taking.”

The pharmaceutical manufacturers and the National MS Society are available to help you sort out insurance issues. If your insurance plan no longer covers the medication you are taking, contact for assistance as soon as possible in order to avoid interruption in your treatment. If no solution can be found to the problem, your healthcare provider may recommend a different medication that is covered by your insurance plan.

“I can no longer afford the co-payments for my medication.”

Insurance companies can raise or lower co-payments without notice. This is another situation in which the manufacturer or the Society may be able to assist you.

If you have questions or concerns about any of these issues, be sure to contact an MS Navigator® at 1-800-344-4867, or the manufacturer of the medication you are taking.

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