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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 your doctor has recommended for you 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 the 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?

Of the disease-modifying medications that are now approved by the U.S. Food and Drug Administration (FDA) for the treatment of MS, five are delivered by injection: Avonex® (interferon beta-1a), Betaseron® (interferon beta-1b), Copaxone® (glatiramer acetate), Extavia® (interferon beta-1b), Plegridy™ (pegylated interferon beta-1a) and Rebif® (interferon beta-1a). Three medications are taken by mouth: Aubagio® (teriflunomide), Gilenya® (fingolimod) and Tecfidera® (dimethyl fumarate). One medication — Tysabri® (natalizumab) — is given by infusion and is generally reserved for people who have very active disease or have not responded to treatment with another medicdation.

MS experts recommend that anyone who has been diagnosed with a relapsing form of MS should consider beginning treatment with one of these medications as soon as possible. Some people who have been diagnosed with a clinically-isolated syndrome (CIS — a first episode of neurologic damage) may benefit from these medications as well.

The possible benefits of these medications include:

  • Reduction in numbers of new lesions as shown on magnetic resonance imagning (MRI)
  • Reduction in the number of exacerbations (also called relapses, attacks, flare-ups)
  • Reduction in progression of disability
  • Probable reduction in future disease activity and improvement in quality of life

Starting treatment early in the disease is particularly important because:

  • Research indicates that permanent damage may be occurring in the central nervous system (CNS) even before a person is experiencing any symptoms.
  • All of the available medications are more effective during the early (inflammatory) phase of MS than in the later (more progressive) phase of the disease.

Click here to read the Multiple Sclerosis Coalition's Consensus Paper 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 — Many people hate needles. However, the manufacturers of these medications offer support programs to help you learn how to self-inject comfortably, and effective tools are available to help with self-injection anxiety.

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 to help ensure that anyone whose physician has prescribed the medication can access it.

Fear of side effects — Each of these medications has side effects, and some people — particularly those whose MS symptoms are mild or in remission — may hesitate to take a medication that may make them feel worse rather than better. However, your physician or nurse 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.

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.

“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 doctor 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. Most people will continue to experience an occasional exacerbation even while taking their medication faithfully. If your doctor determines that you are having too many relapses or developing more than the expected number of new lesions — he or she will offer other treatment options.

“Maybe something else would work better for me.”

Since it takes a few months for a medication to begin working in your system, switching frequently from one drug to another leaves you unprotected for long periods of time. Your best strategy is to give the medication you are taking sufficient time for you and your doctor to be able to evaluate its effectiveness for you.

“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 company no longer covers the medication you are taking, call for assistance as soon as possible in order to avoid interruption in your treatment. If no solution can be found to the problem, your physician may recommend a different medication that is covered by your insurance.

“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. Do not stop your medication without checking to see if either of these resources can help you.

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

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