MS and Medication Side Effects   by J. Lamar Freed, Psy.D. Dr. Freed is a Gero-Psychologist in private practice. He has been diagnosed with MS since 1993.
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 doesn't have Multiple Sclerosis (MS), but he does have several other chronic diseases that require many medications. He takes his pills. Not everyone does.
It wasn't long ago that people with MS didn't take much medication at all. 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, of course, done before neurologists began ordering annual MRIs and $1000-a-month injections.
Many people with MS still don't use much medication. They make do with Tylenol for aches and pains, and perhaps they take a benzodiazapine (Klonopin, Ativan, etc.) at bedtime to manage spasms. 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 have proven helpful in managing MS symptoms.
What lies at the root of this behavior? Doctors tell people to take medicine and recommend specialists, and research reports positive results with pills and shots and treatments. Still, some resistant malcontents refuse to take advantage of the great promise modern medicine has for them.
Once you consider the situation, it isn't that difficult to understand. There are numerous reasons why people are shy of prescription medications. The benefit isn't always that great, the side effects can be considerable, the results are sometimes subtle and slow to develop, the expense may be high, and physicians don't always prepare patients in ways that are truly helpful.
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 that allopathic medicine started to move ahead in its contest with homeopathic 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. 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 placed the allopathic group in the ascendancy.
But the homeopathic (sometimes called naturopathic) philosophy never went away. The sordid history of what allopathic advocates did to their patients before discovering effective treatments is probably the root of why this gentler, less intrusive style of treating illness has maintained its grip.
The early bull-in-a-china-shop quality of allopathic medicine continues today in the plethora of side effects patients are expected to endure without complaint when illnesses are being treated. That the cure is worse than the disease is true more frequently than the medical community would like to admit.
Nevertheless, the allopathic branch of medicine is doing well because its cures do work. Heart disease, cancers, infections, failed organs, medical problems of all sorts have been cured or managed. Our life expectancies have lengthened every decade in the past century. 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 makes them wise and cautious. MS is a clear example of the difficulty that allopathic approaches have for unconquered diseases.
The benefits of medication for MS aren't always that great. Some medications are used 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 from it. Provigil is in the same category. Some get help, others don't. The ABC-R (Avonex, Betaseron, Copaxone, Rebif, all by injection) drugs are similar illustrations that help from medications isn't always ideal..  With the ABC-R drugs, early studies indicate that there is a roughly 40 percent decline in progression, but with a wide variety of individual responses. So, unlike the popular conception of what a medication does -- fix the problem -- much medication for MS is profoundly disappointing.
It is a particular concern when a prescription medication causes unwanted and unrelated problems. Amantadine can make people nervous or jittery, as can Provigil. A popular medication for muscle spasms -- Baclofen -- can cause muscle weakness and lethargy, which is the last thing someone with MS wants more of. The A and B  and R of the ABC-R drugs almost always cause some flu-like symptoms in the aftermath of an injection, and can cause other, more unpleasant side effects as well.  A recently promising medication that reduced exacerbations by 90% in one early study, Tysabri, was pulled off the market because of a particularly dramatic side effect: death.  One bad experience with a serious side effect individually or in the MS community can put a person off medicine for a long time.
The positive effects of medications may be subtle and slow to develop, while side effects may appear sooner. 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 one is going to get. For the first week or two, or even three, the only effect one might receive from a new medication may be some form of discomfort. Only after persisting with a medication for a period of time does the beneficial effect actually start to show.
This is even more dramatic with the use of the ABC drugs. These drugs slow the progression of the disease. They are drugs one takes with no expectation of getting better!  They are taken in the hope that one does not get worse quite as fast as one otherwise would.
What happens if someone starts taking the new drug and also starts getting more frequent exacerbations? It may be that the natural progression of this particular disease course was due to start getting worse. The medication may be preventing even more frequent exacerbations. Alternately this patient  may be a non-responder to the medication.
On the other hand, what does it mean if someone starts taking one of these injections and the exacerbations stop? It could mean that the medication is working well. Or it could mean that the natural progression of the illness has slowed. There is no way to know for sure.
When a physician prescribes one of these medications, he or she is making a bet that in 20 or 30 years you will be better with this medicine than you would have been without it. They make this bet on the basis of research and sound clinical experience. Nonetheless, it is a wager on the future, a wager that has profoundly subtle and inaccessible results.
In the circumstance of the ABC-R drugs, one pays (or one's insurance company pays) between $800 and $1500 a month. Other medications used for MS side effects are not as expensive as that. They may only cost a dollar or two a pill, which still can add up to a great deal. People with MS often take multiple medications. It is not unusual for someone to be taking ABC-R injections, medication for muscle spasms, medication for fatigue, and medication for depression and anxiety, all at the same time. It is easy to reach $1700 or more 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 real and psychological barriers to taking medication, why do people with MS take medication at all?
Because we are desperate. Every single one of us has an image in our heads of the people we've 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. We have the memory of the fact that Kervorkian found proportionally more people with MS to kill than with any other disease. We imagine the canes, the walkers, the wheelchairs, the long, boring hours of waiting for someone else to do something for us that we used to be able to hop up and do for ourselves and we are quite reasonably terrified. We get muscle spasms that keep us awake. We get annoying numbness. We have to run to the bathroom at the spur of the moment and every time we do this, it reinforces our hopes that there might be something we can do that will delay or prevent these frightening possibilities. So, we take medication.
Often it works. Continued studies of the ABC-R drugs suggest that as a group we are benefiting. Treatments for the symptoms of MS are often 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 stops many MS exacerbations in their tracks. The antidepressants can reduce symptoms of depression for the 50 percent of people with MS who get depressed. Anti-anxiety medication can be helpful for the 90 percent who have difficulty with anxiety. There are many more medications that have promise for improving our lives and increasing our chances to go outside and take a walk on our 65th birthdays.
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.
It is essential for physicians as well as those who take medications to be aware of the effect of individual past attitudes and learning histories. Simply handing someone a script and expecting the person to disinterestedly observe and report his or her response is not enough. This sort of practice actually amounts to a barrier to the successful use of a medication, one that should be avoided by the treating physician as well as the patient who is being treated.
In taking medication, it is important to remember the old battle between allopathic and homeopathic styles of treatment. Each patient needs a reason why he or she should take something so potent that it may cause collateral damage.  Each person also needs support, encouragement and respect for doing  the non-medical things they do for themselves.  This is in part a physican responsibility, but it is also a patient responsibility: patients, too, must evaluate what support and information they need and find ways to make sure they get it.
There are a great number of things that can be done beyond taking medication. These non-intrusive interventions (without side effects) can make a great difference for any person with MS. Massage, continuing a trusted supplement, taking advantage of available counseling, going to a support group  -- all of these things are resources in a battle against a disease that is not going to be won or lost on the basis of one medication, no matter how formidible it might be.
It is also helpful for a patient and 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 also may offer potential difficulties. There is nothing wrong with asking to think about a new potential medication.  In a month or even six months after processing the idea there may be more questions or a decision to start.
Physicians can prevent barriers from developing to his or her suggested treatments by adopting an attitude of collaboration and an intersest in the complete effort that his or her patient is making to manage disease symptoms.  This includes acknowleging the efforts the patient has already made to cope, recognizing that medications are only one aspect of the overall management effort and, importantly, acknowleging that other resources besides medication may be needed.  Taking this approach will build confidence and ultimately increase the chances that patients will at least try a medication that might otherwise be refused.
More important, persons with MS have to remember that they are the ones who ultimately bear responsibility for their own health care. It is the patient who decides whether or not he or she wants to take the risk in order to get the possible benefit. 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 or in consultation with other supportive individuals or networks.
Expense, potentially limited effectiveness and side effects present significant barriers to the use of sometimes crucial medications for MS.  It is important for each person with MS to understand the balance of the immediate effects and potentially positive long term effects of medications in order to make good decisions and to tolerate the consequences, once these decisions are made.   Even better is to do so with a team of informed and supportive professionals and friends and family.