To Medicate or Not to Medicate: Helping Patients Choose
Last updated: December 2021
In March, the Food and Drug Administration (FDA) approved a new medication for the treatment of relapsing-remitting and secondary-progressive multiple sclerosis. It was the seventh FDA approval of an MS drug in two years.
Medication decisions as an MS caregiver
Where once there was no restaurant, there is presently a confusing buffet of disease-modifying therapies (DMTs) available to MS patients. As a support partner who helps my wife navigate through a multitude of complex MS issues and decisions, it has become apparent that one of the most important functions of a caregiver is to assist the patient in making an informed decision on taking an approved DMT.
We started in the “dark ages”
Once upon a time in the not-too-distant past, there were no DMTs available to those suffering from this dreaded disease. Intravenous steroids were the only therapy available. The steroids suppressed the immune system so that those vicious T-cells and B-cells stopped attacking the myelin sheath that coats the body’s complex system of nerves.
There were major problems with the use of steroids to treat MS symptoms. First, the steroids normally suppressed the immune system and reduced MS symptoms for a limited time. Second, steroids did not stop the progression of the disease and, according to some experiences, steroid therapy may have caused earlier or more frequent exacerbations.
And, as with any MS medication, the side effects could be very nasty.
Along came the big three
Although the medical community has yet to solve the riddle of what causes MS, they have discovered and developed several therapies that are superior to steroids. When interferon beta-1A and other substances were proven better than steroids in suppressing the immune system, it was as if a dam had broken and three blockbuster DMTs became widely available: Betaseron, Avonex, and Copaxone.
Deciding whether to accept these medications was never easy for some patients with relapsing-remitting MS. They had passed the FDA’s rigorous standards for approval, but the long-term efficacy and potential effects on the body were unknown. They all had the potential to produce unpleasant side effects. Plus, they were administered by frequent needle injections.
Deliberate before you medicate
Fast forward to 2021 and there are 23 FDA-approved DMTs, 10 of which are taken orally. Some have longer track records than others. All have the potential to produce undesirable side effects such as dizziness, nausea, hair loss, disorientation, or worse.
But they all have the potential to alleviate the symptoms of MS. If you have never used a DMT, should you take the plunge?
The questions you need to ask yourself, your support partner, and your neurologist are too numerous to discuss in one post. But here are a few basics:
- Do you want to make this decision alone or with advice from others?
- Are you considering starting a family soon? (None of the medications are recommended for women who are pregnant).
- Do you think you can tolerate the potential side effects?
- Have you had an MRI to measure how the disease is progressing?
- Do you have any other health conditions?
- To what extent will medical/prescription drug insurance cover the cost?
- How is the drug given and how often do you need to take it?
Two key factors in the medication decision
For many patients, the determining factor will be their personality. Taking a DMT has its risks, but so does inaction. MS is an unpredictable condition that may worsen over time or continue along a steady, relatively benign course. Patients and support partners must recognize the various risks and the patient’s attitude towards risk.
There is an additional risk – delay. A 2016 study supported the widely held view that treatment is most effective when initiated at the earliest sign of disease. After 11 years of treatment, the risk of significant disease progression was “reduced by 33.0% for patients in the early-treatment arm relative to those in the delayed-treatment arm.”1
When it comes to deciding whether to medicate, patients and their caregivers are faced with only one certainty. It’s the medical truism that “each case is different.”
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: