Expert Support
How to alleviate the side effects
of immunomodulators
Josée Poirier, R.N., B.Sc., MSCN
Josée Poirier has been the Nursing Coordinator for the MS Clinic at the CHUM’s Notre-Dame Hospital since 1994.
Immunomodulators have led to major changes in the world of multiple sclerosis. For many years, there was no available treatment, but since immunomodulators were introduced to the market, thousands of Canadians who suffer from cyclical or secondary-progressive multiple sclerosis with relapses have reaped the benefits. There are five immunomodulators on the market, including four well-known interferons (Avonex®, Betaseron®, Rebif® and Extavia®, which is identical to Betaseron®). The glatiramer acetate sold as Copaxone®, which is not an interferon, is also available, along with a monoclonal antibody called Tysabri®. These treatments do not cure MS, but they alter the progression of the disease. Their effectiveness has been proven by a number of clinical trials. We know they reduce the number, duration, and severity of relapses, and decrease the number of lesions detected by magnetic resonance imaging. There are differences among the various treatments, but their common goal is to attempt to stabilize the disease. Like all medications, they cause side effects. In this article, I will offer you some advice with respect to alleviating the negative side effects of immunomodulators and travelling with your medication (aside from Tysabri®).
The most prevalent side effect that hampers long-term treatment is unrealistic expectations with respect to the medication. Many people firmly believe the immunomodulator that they select will improve their condition, prevent them from having further relapses, and eliminate their symptoms. Some people feel so good they believe that they no longer have multiple sclerosis, because they become asymptomatic, and as a result of this, they stop taking their treatment. This may be true for a minority of patients, but it is the exception that proves the rule. Each individual responds differently to the treatment, and everyone experiences different side effects.
The leading side effect of interferons are flu-like symptoms, including fever, chills, aches, and headaches. In addition, some people experience more fatigue when they start treatment. These side effects usually last three months, but they sometimes last longer. They can be easily controlled using a variety of methods. First, it is preferable to start treatment gradually, meaning ¼ dose for 2 weeks, ½ dose for 2 weeks, ¾ dose for 2 weeks, and finally a full dose. This may vary depending on the neurologist, the prescribed medication, and how well you tolerate the treatment.
In order to alleviate the flu-like symptoms, patients are advised to take ibuprofen or acetaminophen 30–60 minutes before the medication is administered, and 4–5 hours after the injection. It is preferable to administer the injection in the evening, because the side effects then occur during the night, which causes less discomfort during the day.
Because they involve an injectable treatment, the 4 immunomodulators (i.e.: Betaseron®, Extavia®, Copaxone® and Rebif®) cause redness (erythema), swelling, and some pain at the injection site. These symptoms may vary in intensity from one treatment to another and from one person to another. In order to alleviate erythema, it is preferable to inject the medication at room temperature. Only Betaseron® is stored at room temperature until the expiration date. Avonex® can be stored at room temperature for 7 days, while Copaxone®, Extavia® and Rebif® can be stored at room temperature for 30 days. However, it is preferable to store them in the refrigerator. Avonex® is administered directly into the muscles, and does not cause erythema. However, it is recommended that Avonex® be administered at room temperature.
In order to alleviate erythema, it is recommended that you use the auto-injector that is provided for the medication. This device is provided by the pharmaceutical companies. The depth of the injection can be adjusted. For Avonex®, the auto-injector only allows the user to insert the needle into the muscle. An electronic device called RebiSmart™ has been available since October 2009. It features adjustable comfort parameters, including the speed at which the needle penetrates the skin, the depth of penetration, and the injection speed. A sensor indicates when to press the button in order to administer the injection. For standard auto-injectors, the auto-injector must be placed against the skin carefully, and not pressed against it. When injecting manually, insert the needle quickly, but inject the medication slowly. Do not pinch the skin too firmly, because this increases redness. Do not use alcohol wipes to disinfect the skin, because alcohol dries and irritates the skin. It is important to alternate injection sites. Wait at least 7 days before using the same site. Do not re-inject in an area that is red, or where there is a bruise, pimple, vein, etc. For subcutaneous treatments, use an area where there is more fatty tissue. For intramuscular injections, be sure to inject the medication into the muscle and not into a vein. If injections are painful for you, apply a warm compress for 15 to 20 seconds prior to injection. This will make your skin more supple and will facilitate absorption. After the injection, administer a cold compress or an ice pack for 15 to 20 seconds in order to reduce inflammation. I would not personally recommend Emla® cream or any other topical anaesthetic cream, because in order to be effective, these creams must be applied several minutes before the injection, which in my opinion complicates and extends the duration of the injection. Lightly massaging the area in a circular motion after the injection facilitates absorption of the medication. For Copaxone®, wait until the next day to massage the injection site. Lipoatrophy can occur in 5% to 10% of people who use Copaxone® after several months of use. This condition involves a loss of fatty tissue, and is specifically characterized by hollows, particularly in the thighs, abdomen, and arms.
Copaxone® can sometimes cause joint pain and tense muscles. If this happens, take acetaminophen or ibuprofen. Although it is rare, occurring only once in 10% to 15% of patients who use Copaxone®, an immediate reaction may occur after treatment. This reaction, which may include palpitations, tightening of the chest, tightening of the throat, hot flashes, and reddening of the face, can occur after several weeks or several months of treatment. It is important to remain calm and breathe normally. All of these symptoms have disappeared after a few minutes. No specific treatment is necessary.
In order to optimize the efficacy of immunomodulators, they must be used continuously and in a sustained manner. Efficacy occurs after several months of use. Once again, at the risk of repeating myself – your expectations with respect to your treatment must be realistic. Be honest with yourself and your neurologist in terms of how you tolerate your treatment and the number of relapses you have. If your treatment is not giving you positive results, your neurologist can recommend a different one.
Treatment with immunomodulators is meant to be long-term. Therefore, it is essential that your injections do not become a chore, but that they become an integral part of your daily routine. Every pharmaceutical company has a bilingual help line that is staffed by qualified personnel who are on hand to answer your questions and/or respond to your concerns. Do not hesitate to contact them. Here is the contact information for each one:
Avonex Therapy Support: 1-888-456-2263
Betaplus™: 1-800-977-2770
Shared Solutions®: 1-800-283-0034
Extracare™: 1-888-557-5050
Multiple Support Program: 1-877-777-3243
Tysabri Care Program: 1-888-827-2827
Remember, immunomodulators act on relapses, and do not relieve existing symptoms. Persevere in your treatment. The results have been proven by research! New oral molecules are expected in 2011.
Stay positive and keep the hope alive!
This feature is intended solely for informational purposes and is not a substitute for routine or urgent medical evaluation, treatment or consultation. Josée Poirier’s guest editorial should not be construed as a medical opinion aimed at establishing a diagnosis or course of treatment. Individuals who are being treated should not construe information here as replacing or superseding recommendations of their own physician.
