Staying the Course on MS Therapy
Once a disease-modifying therapy (DMT) is initiated, evidence suggests that treatment needs to be ongoing for benefits to persist. The discontinuation of treatment has been shown to negatively impact the course of multiple sclerosis. Non-adherence and gaps in treatment have been associated with an increased rate of relapses and progression of disability. Thus, it is critically important for individuals with relapsing forms of MS to begin early treatment and stay on course with therapy, if deemed appropriate by one’s doctor.
While it is extremely beneficial to have nearly a dozen different FDA-approved DMTs to help reduce disease activity, the effectiveness of any of the given medications varies considerably from one individual to another and for any given individual at different points in time. Individuals may not respond well initially to a treatment or, after being on a medication and responding well for some time, may see an increase in relapses or disease activity for a variety of reasons. Rather than discontinuing the medication, it is essential for individuals to talk with their doctor about recent changes in their MS and explore options to make adjustments with their current medication or switch to another DMT.
MSAA recognizes that adhering to an MS medication can present certain challenges over time which may cause people to “veer off course” and limit or discontinue prescribed usage. Fortunately, many of these challenges can be resolved through a better understanding of the prescribed treatment and developing effective adherence strategies with one’s healthcare provider. Below you will find common challenges associated with DMT treatment and suggested strategies to help keep you on course with your therapy.
Managing Side Effects
Each of the approved treatments has side effects that are usually manageable. Initial side effects to some of the DMTs include headache and flu-like symptoms. These often dissipate after several weeks and can be easily managed with over-the-counter medications as recommended by one’s doctor. Some individuals may also benefit by titrating doses, which refers to starting at a lower dose and gradually increasing the dose until reaching the prescribed level of medication (under the direction of a doctor).
Individuals using injectable medications can also experience pain or skin reactions at the injection site. In addition to learning proper injection techniques by the healthcare provider, individuals can also help to manage injection-site reactions by using some of the following strategies:
- icing the area prior to administration
- rotating injection sites and using more fatty areas of the body
- taking Tylenol® or other over-the-counter pain relievers
- scheduling the injection at bedtime or over the weekend
- reducing the gauge size of the needle
- using an auto injector
For individuals taking an oral medication, common side effects include headache, nausea, and diarrhea. These are usually mild, dissipate over time, and can be managed by taking over-the-medications as directed by one’s doctor. These include stomach medications, such as Pepto-Bismol® and similar medications. People may also find that taking the medication with food may help to reduce the risk of an upset stomach.
A brief systemic reaction can occur following an injection in about 10 percent of individuals taking Copaxone®, and may include anxiety, flushing, chest tightness, dizziness, palpitations, and/or shortness of breath. Usually lasting for only a few minutes, these symptoms do not require specific treatment and have no long-term negative effects.
Less common but more severe adverse events can occur and should be monitored periodically by one’s doctor. Among others, these include changes to liver enzymes and reduced white-blood cell (lymphocyte) counts; the latter may increase one’s risk of infection. Heart function needs to be monitored with certain DMTs. Individuals with MS and their care partners should also watch for symptoms of depression which can be a side effect of DMTs, and should consult their medical professional should these symptoms arise.
It is very important for individuals to have good communication with their doctor and develop realistic expectations about the role of their prescribed treatment. None of the FDA-approved medications for multiple sclerosis cure the disease, nor are they completely effective in treating MS. However, these medications have all been shown in clinical trials to reduce the number and severity of relapses, reduce the development of new areas of inflammation in the brain and spinal cord (as seen on an MRI), while also showing some evidence in delaying disease progression.
Given the complex nature of MS, individuals must allow six months to one year for their prescribed medication to have an effect on their disease course. This also necessitates that patients are taking their medication as prescribed on a consistent basis and not skipping or altering doses. A one-year, follow-up visit with a neurologist is generally recommended to evaluate disease activity and treatment effectiveness.
Individuals who have been adherent for longer periods of time unfortunately may develop a false expectation that in order for the medication to be working they must “see” results. In fact, the opposite is true. It is important to realize that if patients are not seeing an increase in relapses and/or not experiencing additional symptoms, then, most likely, their DMT is effectively treating their MS. Studies have shown that people with MS who take their medication on a regular basis as prescribed are likely to feel better physically and emotionally, and have better ability to function in everyday life than individuals who are not adherent.
Learning to Adjust
Even with the best intentions of remaining adherent, people may encounter certain obstacles or challenges that can knock them “off course” in their attempt to follow their routine medication schedule. One such example is forgetfulness. A few simple suggestions to help individuals better remember to take their medication include setting a schedule and abiding to it as much as possible, utilizing memory aids such as print and electronic calendars and reminder notes, recording your dosage in a journal or mobile phone app such as My MS Manager™, and involving family members into the treatment plan. Additionally cognitive impairment and depression are more significant issues which could impede memory and adherence motivation and should be discussed with a person’s healthcare provider.
In addition to forgetfulness, fear or anxiety related to injections has often been a common concern shared by the MS community. Receiving proper training on administering the injection from a qualified healthcare professional might be an effective first step in building self- confidence and reducing fears that naturally occur when faced with an unfamiliar activity. With amble practice under the guidance of a trained professional, MS patients should be ample to improve injection skills and develop the confidence to inject their medication properly with limited reaction site side effects. Additional suggestions to help reduce fear or anxiety is to enlist the support of family or significant others, consider mindfulness training and guided imagery and use a thinner gauge needle or auto injector to help with administration.
As mentioned in the beginning of the article, the effectiveness of any disease modifying therapy for MS can vary greatly from person-to-person and even change within the same individual as the disease progresses over time. Individuals who are being compliant in taking DMT as prescribed without disruption yet still feel their medication is no longer effective should talk with their doctor to explore additional treatment options. Neurologists will often conduct a clinical examination, evaluate any increases in the number and severity of reported MS relapses experienced within the year, and schedule a magnetic resonance imaging (MRI) test of the brain and/or spinal cord to assess disease progression and possible treatment failure. More than two new lesions on an MRI per year may be a sign that the current DMT is no longer effective.
While failing a therapy is not the news one wants or expects to hear, the positive outlook is that physicians have an increasing arsenal of FDA-approved DMTs to help patients stay on course and treat their disease. All DMT’s have potential risks and some newer therapies require tests before and during treatment to help determine if the person would be considered appropriate for the medication and can manage the potential side effects. It is important for individuals with MS to work together with their neurologist to explore new treatment options and remain committed to finding a therapy that works for them.
Questions to Consider
As a way to help summarize the key points in this article, MSAA developed a list of questions you may want to ask yourself if you are considering a change in therapy. The answers may help you better understand your commitment and ability to stay the course on therapy or possible medical reasons to talk to your doctor about switching therapies.
- Am I taking my DMT as prescribed on a regular basis?
- Am I injecting my medication properly?
- Would I benefit from additional training or advice from a healthcare professional on ways to inject my medication?
- Have I managed my injection site reactions by using one or more of the following strategies?
- icing the area prior to administration;
- rotating injection sites and using more fatty areas of the body;
- taking Tylenol or other over-the-counter pain relievers;
- scheduling the injection at bedtime or over the weekend;
- reducing the gauge size of the needle;
- using an auto injector.
- Am I allowing at least six months to one year for the medication to take effect?
- Have I developed a medication schedule to follow to create a regular routine and lessen forgetfulness?
- Would it help lessen my forgetfulness if I used friendly reminders such as calendar alerts, sticky notes or the support of my family members?
- Have I tried relation techniques such as guided imagery to help reduce injection fear or anxiety?
- Even though I am taking my therapy as prescribed, do I notice an increase in the number and/or severity of MS relapses?
- Have there been any new lesions discovered on recent MRIs?