Why Adherence to your MS Drug Matters
By Ted Brown, MD
EvergreenHealth MS Center
The phrase “blood, sweat and tears” might bring back memories of the 1960’s jazz-rock band by the same name, or perhaps the famous speech of Sir Winston Churchill when he used those words in warning the British people of the hardships to come in fighting WWII. The term actually has Biblical origins and means to do “hard work and effort in difficult circumstances”. We’ve come a long way in MS therapy, now with ten FDA approved drugs. People who work in the MS healthcare field can say with confidence that the MS drugs can truly make a difference in how well a person with MS does over the long term. However, no drug works unless it is taken, and that requires commitment, motivation and sometimes blood, sweat and tears.
There are basically three reasons to take one of the MS drugs if it is prescribed by a doctor or nurse practitioner:
- First, MS drugs reduce the rate of MS exacerbations. Multiple studies have shown that after a first attack, MS drugs can delay the time to second attack and reduce the % of patients who have a second attack. In patients with established MS diagnoses, clinical trials and clinical experience have shown that patients have fewer attacks on treatment than off. Since each attack carries a risk of additional permanent disability, cutting the frequency of attacks is important.
- Second, MS drugs reduce the rate of progression of disability. This has been demonstrated in several studies of approved MS drugs. Preventing disability is the single most important objective in MS care.
- Third, all of the approved drugs have some benefits on MRI. This has been shown using various measures including: new lesion formation (T2/FLAIR lesions), active lesion formation (gadolinium enhancing lesions) and permanent destructive lesion formation (T1 hypointense lesions or “black holes”). There is compelling evidence that MRI activity predicts how likely a person is to have attacks and to have progression of disability.
Drugs don’t work if you don’t take them. This brings us to the term adherence, which is defined as the percentage of doses taken as prescribed, over a set time period. For MS injectable drugs, adherence rates ranging from 41% to 88% have been reported. One study reported that an 85% adherence threshold maximized a patient’s benefits from interferon-beta therapy. Below that, people did not get as much benefit. For research purposes, we typically say that 80% is the cut-off for adherence. At a lower level, a person is categorized as “non-adherent” and not getting the full treatment. Non-adherence has been associated with higher rates of relapse and hospitalization in MS.
Several studies have found that forgetting to administer the drug is the most common reason for non-adherence. The second most common reason for non-adherence is typically injection-related pain, fatigue or anxiety with the injectable drugs and side-effects with the oral drugs. Other barriers to adherence include denial of illness, disruption of lifestyle/inconvenience, cost of treatment or insurance hurdles, unrealistic expectations about what the drug will do, physical limitations to administration, cognitive impairment, depression, loss of confidence in the drug, and simply being tired of therapy, a.k.a. treatment fatigue.
What You Can Do
Here is what you can do to help yourself to stay on therapy.
- First, believe in what you are doing. By taking an MS drug, you are taking action, a real step in fighting MS.
- Being motivated really helps. Remember that the treatments are approved based on evidence. Sometimes, thinking of how expensive every dose of a MS drug is reminds a person of the value placed on the treatment.
- Communicate with your MS healthcare team if you are having doubts about your treatment. Communicate about side-effects, financial issues or drug administration issues. They want to help you to stay on treatment and will appreciate your questions and concerns. Helpful advice may come from the company-sponsored support services that are just a phone call away. Their job is all about making it easier for you to take your MS drug. Their nurse educators have a lot of tips to manage side effects and injection issues and can spend as much time with you as you need. If you have depression or anxiety, get treatment. It is hard to take care of your medications when there is a cloud over your head (my apologies to those living around the Puget Sound for the analogy).
- Establish a self-reward for taking your medication regularly. Treat yourself to a pat on the back or something more satisfying. You have earned a reward, now enjoy it.
Here are a few practical tips to help adherence to your medication:
- For injectable drugs, get loved-ones involved in administering or reminding you about your injections.
- If it is a refrigerated drug, warm it up before injection. Twenty minutes at room temperature usually does the trick.
- Rotate sites appropriately, consider using an auto-injector, adjust the depth of the injection depending on the site, and leave the bubble in the syringe when you inject the drug. It actually serves a purpose.
- Do your injections perpendicular to the skin unless instructed otherwise. Other ideas that could be discussed with your healthcare team are using a smaller needle, taking an oral antihistamine, applying a warm compress before injection and applying topical agents after injection. At EvergreenHealth, we are currently enrolling participants in a study of a topical anesthetic adhesive patch to reduce the pain of MS drug injection. You can learn more about clinical trials.
For oral drugs, tips for adherence include establishing a routine time of day for taking a medication, using a mediset or pillbox to keep the drugs sorted out, and jotting down the reasons why you may miss doses to identify a pattern and help find a solution. The three FDA-approved oral drugs are not supposed to be kept in the refrigerator - room temperature is good. They may be taken with food and food may reduce some of the side effects. Whatever drug you are on, ask your healthcare team for specific recommendations about how to take your treatment.
To summarize the key points of this article, there is good evidence supporting all approved drugs. Adherence is important and staying motivated really helps to keep you on track. Winston Churchill fought the war with tenacity. Apply that approach to treating MS. Remember that the biggest problem is FORGETTING to take the drug. Take steps to make it easier to remember. Get help if you are having problems with your drug or not taking it. Discuss it with your nurse or doctor.