Medication Changes: Tips for the Transition
Inherent to existence is the inevitability of change. The steady march forward through time and space continues, neglectful and even oblivious to our human strivings, wishes, and hopes. In the grand scheme of things, a few weeks are a trifling insignificance. Yet, when one is living in pain, a few weeks can feel like perpetuity without end.
Change is a part of chronic illness
Subjectively time seems to vary with mood, emotion, and the currents of one's life. It moves too quickly when one is enveloped in the intimacy of love, and too slowly when one is bereaved, suffering loss, or left in waiting. Seconds of life can feel like hours, while years go by with as little ceremony as a single drop in a rainstorm.
The space of waiting, the vastness of not knowing, and the uncertainty of the future, is a form of time that has its own unique quality. When one is young and ambitious, such uncertainty is the seed of dreams, idealism, and the creation of future utopias that are savored, though with impatience.
In contrast, when one feels the years weighing heavy, or first tastes the bitterness of failing health, such uncertainty of time takes on a crushing and relentless foreboding. Waiting, when one's health or the health of a loved one is on the line, is a lesson in suffering and patience that many of us know more intimately than we prefer.
Previous medications did not work
Such events are when aggregated with the thousands of other events of life, statistical outliers. The tedium of everyday is often little more than repetition, with minor variation on common themes. For those of us who live with rheumatoid arthritis, however, such variations on common themes have serious implications. A disease flare that rears its unwelcome presence with capricious regularity may be something we have learned to expect, but enduring it never gets easier.
So too with the difficulty of switching medications. The first treatment I failed was methotrexate. Then I moved through a few combinations of methotrexate and biologics without success. Such failures were no walk in the park. Each time I began with hope: "This could be it, the magic bullet that will restore my old life," only to end in dejection, "I can't believe how much money, time and effort was spent only to find the disease is still active and the flares continuing." Treatment for rheumatoid arthritis can be a tempestuous sea of expectation, struggle, hope, and pain.
Trying TNF inhibitors for RA treatment
As I begin the last of three available TNF inhibitors, time is moving slowly. The space between ending one treatment and waiting for the next to kick in is littered with conflicting emotion. Two weeks ago, as the transparent liquid in the syringe slowly entered my leg just beneath the skin, I spoke audibly to the substance as if it could hear me, "I hope you work better than the last one friend." Since that time, I have had two flares.
The first in my foot, RA's seemingly habitual point of attack for me, and the second in my jaw. The jaw is, in my opinion, the worse of them all — a sledgehammer to the face. Yet, this rocky transition is expected though it is neither hoped for nor ideal. It can take weeks for the new medication to begin working. And so I wait in uncertainty as time slowly passes.
How to manage a medication change
The following are a few tips I have developed for medication transitions.
- Realistic hope. Though the hoped for outcome is for a medication to work quickly and efficiently, the reality is not always so ideal. Maintain realistic hope when headed into a medication change. When your thoughts become dejected and pessimistic, remind yourself of the time required for the drug to begin working, and try to keep that perspective. At the same time, avoid naiveté. Do not allow yourself to become infected with naive optimism, only to be crushed and depressed should the treatment fail. Keep an even-tempered hope that is based on evidence.
- Maintain contact with the doctor and track your disease flares. The rheumatology clinic I attend has an online system where I can send questions to my doctor. If I have had a string of flares, I let my doctor know the frequency, duration, and intensity of them. She has often changed doses or added an adjunct medication to the new treatment because of the updates I have given her between appointments.
- Read the fine print of your prescription. Though the side effects documented in the massive text provided alongside medication are unpleasant to read and think about, take the time to look through them. Know what are common and benign side effects, and what symptoms require immediate medical attention. Almost two years ago I had a very rare skin outbreak unrelated to the injection site. The rash-like symptom was listed as a condition that needed immediate medical attention in the prescription pamphlet. I did not hesitate to get an emergency same-day appointment for what first appeared insignificant. Thankfully I did, as the odd skin condition portended a very frightening potential liver failure that was avoided. Don't wait until something happens to inquire if it is serious. Know ahead of time what to look for and what to do.
- Ask for help. Let those around you know that the coming weeks are uncertain, and may entail difficult days and nights. I believe a forewarning that a medication change is happening is considerate and keeps those who support you in the loop. If you do need help, ask without shame or guilt, and show gratitude for what is offered. If you struggle asking for help, think what you would do if the tables were turned. I know that I would not hesitate to step in and provide support for those I love. I would be irked if they needed help, were suffering and did not ask me. They likely feel the same way towards me. Do not ask for more than others can give, and check in with those in your circle about their wellbeing. Try to keep communication as open as possible.
- Keep easy access to something you enjoy. Whether it be movies, music, books, or some other form of entertainment, keeping something nearby to look forward to at the end of a long day or to help get you through some tough hours, is essential. I love to read all kinds of books ranging from the tedious and academic to the lighthearted and fun. If I know I may be in for a few hard weeks, I keep at hand books that I can mindlessly escape into. I find a good story can carry me through some dark hours and days.
- Maintain your good habits. Disruptions to your regular schedule or life can also disrupt habits. Make a concentrated effort to maintain good habits like healthy eating, exercise, and stretching. Medication is only one part of treatment; don't neglect the other aspects of care during a transition.
How often you do experience an unexpected boost of energy?