One of my patients once told me that he pours his pills out in the morning and sometimes thinks he should douse them with milk and eat them with a spoon. He didn’t have Multiple Sclerosis (MS), but he did have several other chronic diseases that required many medications. He faithfully took his pills. Not everyone does.
Many people with MS have opted out of taking recommended medications. When I was first diagnosed in 1993, an insurance study made the Internet rounds claiming that, over the course of a lifespan, people with MS had no greater use of medical services than the population at large. This study was done well before we started getting bi-annual MRIs and $50,000 a year prescriptions.
Many people with MS still don’t use much medication. They make do with Tylenol for aches and pains, and perhaps they take one or two other pills to manage specific symptoms. They may add a few vitamins and a couple of naturopathic remedies that make sense to them.
Some people are downright phobic about taking medications. They endure debilitating fatigue, pain, cognitive difficulties, and work disability, refusing to use the medications that is often helpful in managing MS symptoms.
What lies at the root of this behavior? Neurologists and patients report positive results with pills and other treatments for symptoms. Research shows the effectiveness of immunomodulating injections and, now, oral medications. Still, some resistant malcontents refuse to take advantage of the great promise of modern psychopharmacology.
It would be easy to blame this on superstitiousness or the absence of education. But this would be both unfair and also inaccurate. There are numerous reasons why people may be shy of prescription medications. The benefits aren’t always that great, the side effects can be considerable, the results are sometimes subtle and slow to develop, the expense is frequently very high, and health care professionals don’t always prepare patients in ways that are effective.
In this country there is a long history of distrust for modern medicine. Indeed, it wasn’t until the discovery of the sulfa drugs, aspirin, and penicillin in the middle of the 20th century – less than 100 years ago – that allopathic (what we know as conventional) medicine started to move ahead in its contest with homeopathic (now also known as alternative, naturopathic or complementary) medicine for the hearts and minds of the people. Before that time, the popularity contest between two types of medical treatment was neck and neck. Allopathic doctors advocated large, aggressive doses of medication to fight disease at a therapeutic level. Homeopathic doctors advocated tiny, unobtrusive dosages of various substances to support the body’s natural reactions to disease. Sometimes they also recommended supplements and herbs. It was the specific effectiveness of large doses of medication for particular illnesses and the gradual development of successful combinations of surgical and chemical treatments for a large variety of illnesses that makes allopathic medicine standard practice.
But the homeopathic philosophy never went away. The sordid history of what allopathic advocates did to their patients before discovering effective treatments is probably part of the root of why this gentler, less intrusive style of treating illness has maintained its grip. But it is more than that, because the early excesses continue today with the high tolerance conventional allopathic medicine has for the side effects patients are expected to endure when illnesses are being treated. That the cure is sometimes worse than the disease is more frequently true than the medical community would like to admit.
The allopathic branch of medicine is thriving because its cures do work. Heart disease, cancers, infections, failed organs, medical problems of all sorts have been cured or managed. Until very recently life expectancies have lengthened every decade. There is no question that aggressive medicating for serious illness is a winner.
Does that make those who are medication-phobic foolish? On the contrary, it may make them cautious, even wise. MS is a clear example of the difficulty that allopathic approaches have for unconquered diseases.
The benefits of medication for MS aren’t always great. There are effective medications to treat fatigue – Amantadine, for example. Yet the improvement an individual gets from the use of the medication may be minimal. Indeed, many people don’t benefit at all, while others get tremendous help. Provigil and Nuvigil are in the same category. Some get help, others don’t.
The now ten immune modulating drugs (drugs aimed at slowing the progression of the disease) are an even clearer example that help from medications isn’t always ideal. For most of these medications initial studies indicated that there is a roughly 30-40% decline in progression as measured by the increase of brain lesions, but with a wide variety of individual responses. One exception is more effective, but has a life threatening illness as a possible side effect. More recent studies have also lowered the estimates of effectiveness as compared to the earlier studies.
It is a particular concern when a prescription medication causes unwanted and unrelated problems. Amantadine can make people nervous or jittery, as can other medications for fatigue. A popular medication for muscle spasms — Baclofin — can cause muscle weakness and lethargy, which is the last thing someone with MS wants. Each of the autoimmune medications has its own unpleasant side effects as well. One bad experience with a serious side effect can put a person off medicine for a long time. Shared stories of bad side effects can multiply misgivings.
In many medications the positive effects may be subtle and slow to develop, while the side effects may appear sooner and may actually peak in the first week or weeks of treatment, only to disappear or at least become more tolerable later. In my experience this has been most clearly illustrated when patients use antidepressants. Using most antidepressants, the patient may experience at the outset whatever side effects he or she is going to get. For the first week or two, or even three, the only effect a patient might get from a new medication may be some form of discomfort. It is only after persisting for a period of time that the beneficial effect actually starts to show.
This is even more dramatic with the use of immune modulating medications for MS. These drugs slow the progression of the disease. There is no expectation of getting better. They are taken only in the hope that the pace of MS will slow.
What does it mean when a person with MS starts taking a new drug to slow MS progression and also starts getting more frequent exacerbations? It may be that the natural progression of this particular disease was due to start getting worse. The medication may actually be preventing even more frequent exacerbations. Or the medication might not be working.
On the other hand, what does it mean exacerbations stop? It could mean that the medication is working well. Or it could mean that the natural progression of the illness has slowed.
For any individual there is no way to know for sure. In practice, physicians often switch immune modulating medications if there is continued activity and are loath to change medications if there is reduced or little activity. The danger here is that the medical professionals may themselves be a tad superstitious, operating as if these medications are more effective and predictable than is supported by the double blind studies.
But generally when a physician prescribes one of these medications, he or she is making a bet that in 20 or 30 years their patient will be better with this medicine than without it. They make this bet on the basis of research and sound clinical experience. Nonetheless, it is still a wager on the future, a wager that has frighteningly unpredictable consequences.
In the circumstance of these drugs to reduce exacerbations, the patient (or insurance company) spends 40, 50 or even 60 thousand dollars a year on this gamble, sometimes more. Other medications used for MS symptoms are not as expensive. Some may only cost a dollar or two a pill, which still can add up to a great deal over time. More than that, people with MS often take multiple medications. It is not unusual for someone to be taking a pill or injection to reduce the progression of the disease, medication for muscle spasms, medication for fatigue, a pill to improve gait, medication for depression and/or anxiety, with an added pill to reduce urinary urgency and an occasional sleeping pill all at the same time. It is easy to reach thousands a month in medication costs. Those without insurance and unable to work will certainly not be able to take all of these medications. Even for those with insurance, the co-pays on multiple prescriptions can put a significant dent in the family budget.
So with all of these financial and psychological barriers to taking medication, why do people with MS take medication at all?
Typically because they desperately want to do something for their illness. Often people with MS have an image of people they have seen stretched out in geri-chairs in nursing homes, glassy eyed from pain medication, incontinent, unable to move, unable to see and barely able to speak. They have the memory of the fact that Kervorkian found proportionally more people with MS to kill than with any other disease. They fearfully imagine the canes, the walkers, the wheelchairs, the long, boring hours of waiting for someone else to do something that they used to be able to hop up and do for themselves and they are quite reasonably terrified. They get muscle spasms that keep them awake. They get annoying numbness. They have to run to the bathroom at the spur of the moment and every time they do this, it reinforces their hopes that there might be something, anything, that can be done that will delay or prevent things from getting worse. So, they take their medicine.
Often it works. Continued studies of the older injectable drugs suggest that as a group people with MS are benefiting. There is no reason to suspect that the newer oral medications will be any less effective. Treatments for the symptoms of MS are even more successful. Baclofen does reduce muscle spasms. Amantadine and Provigil do work for many people to reduce the cognitive and physical aspects of MS fatigue. I.V. Solumedrol can stops many MS exacerbations. The antidepressants can reduce symptoms of depression for the 50 percent of people with MS who get depressed and may also help with fatigue. Anti-anxiety medication can be helpful for the 90 percent who have difficulty with anxiety. There is reason to hope that any particular individual with MS will be able to go outside and take a walk on his or her 65th birthday.
Yet every single one of these medications can have significant side effects. If a patient is not properly prepared for these side effects and has not examined the cost/benefit of the drug, a side effect can ruin the potential therapeutic effect. In other words, the person with MS can be scared off by something that may not, in the big picture, be a long lasting or significant aspect of the drug.
Treating professionals must be aware of the attitudes and learning history of their patients when prescribing medication. Simply handing out a script and expecting that a patient will call if there are problems is not enough. This sort of practice actually amounts to a barrier to the successful treatment of a chronic disease.
In prescribing, it is important to remember that among the population at large, the old battle between allopathic and homeopathic styles of treatment is not resolved. Patients want a good reason why they should take something so potent that it may cause collateral damage in their bodies. They want to understand what a medication is going to do for them. They also want to know that their doctor is looking out for more than just what prescription to write.
There are a great number of things a health care professionals can suggest for people with MS that goes beyond taking medication. These non-intrusive interventions (without side effects) can make a great difference for any person with MS. Suggesting massage, encouraging the continuation of a trusted supplement, providing the name of a psychologist or counselor, having support group information available — all of these things tell the patient that the battle against this disease is not going to be won or lost on the basis of one medication even though the medications can be a formidable ally in the lifelong battle that is MS.
It is particularly important for a physician to take time when introducing a medication that may have difficult side effects. Some patients need to digest the idea that a medication might help, but at a cost. There is nothing wrong with a patient asking to think about a new potential medication. He or she may come back in a month or even six months after processing the idea and perhaps still will have more questions.
People with MS are usually quite aware that they are the ones who ultimately bear responsibility for their own health care. It is they who decide whether or not the costs outweigh the possible benefit.
But not every area of the world has physicians who can properly walk patients through with aplomb and warm support. Many times physicians expect to be used as consultants who provide the information and technical services to patients who are then expected to think about a medication’s various costs and benefits on their own. It is at this point where a person with MS may want to bring other people in on his or her team, a trusted family member, friend, or perhaps consulting a psychologist, a nurse, or a social worker with knowledge about MS. The National MS Society has a multitude of resources in this area and an MS navigator may be able to provide information or referrals that are critical when it is time to make decisions.
Regardless of where a person with MS falls in the philosophical continuum between allopathic and homeopathic remedies, each persons history for how and why they have arrived there merits respect. The barriers of cost, potentially limited effectiveness, side effects, and poor preparation may be overcome, but they will never be overcome without the effort of the person who is getting the treatment. There are treatments that are often effective. It is up to each individual with MS to decide if and how these treatments can be best used in their own effort to manage this very difficult disease.