10 Lessons Learned from Using Biologics
Lene Andersen | July 16, 2015 Nov 2, 2016
You have choices
There are several biologics available. Which one will be your first seems to depend on what your rheumatologist likes best. Often, you start on TNF blockers, and if they don’t work, move on from there. What’s most convenient to you — the more frequent self-injection or an infusion in a clinic — matters. You learn to do research, ask others about their experience, and weigh in on the choice.
How they work varies
How much time it will take before a biologic drug works varies depending on the drug and how you respond to it. With some, you can feel the difference almost instantly, others slowly build over several months. Sometimes, you need to change the dose or the frequency with which you take them from what’s recommended to what works for you. We are all different, each of us responding differently to the medication.
Short-term pain, long-term gain
Taking your medication can be uncomfortable. Some sting when you inject them. Taking the chill off the drug may help. Leave the syringe on the counter for 20 minutes or roll it between your hands before injecting. Numb the injection site with ice or pinch as you inject. If infusions cause a reaction, IV steroids and Benadryl can make a difference. Remember the initial pain is temporary and can be worth it in the long run if the medication works for you.
Side effects become the new normal
When you’re on biologics, it’s normal to make new life accomodations. You’re grateful that carrying hand sanitizer is no longer weird because it helps you manage the infection risk. For some, the side effects stop there. Others get acid reflux, gas, recurring sinus problems, headaches/migraines, and more. You adapt. You also learn that if the side effects impact your life as much as active RA, it’s time to change medication.
Don’t let the fear win
People who are not on biologics worry a lot about the black box warnings of the rare and serious, even fatal, side effects. You’ve learned to not focus on it. Instead, you remember that there is a risk of getting into an accident when we get into a car and everyone does that all the time. You weigh the risks and benefits and in the end, know that protecting yourself from RA damage and being able to live your life fully is worth a small risk.
When you are on biologics, your weight can change. You may lose or gain weight. Weight loss and weight gain can also be related to the control of your RA and elimination of the nausea that often comes with the disease. Eating a healthy diet becomes more important as you gain more control of your life. Exercise becomes possible and can also help you manage your weight. For a veteran of RA, the ability to move again never gets old.
Good health is possible
When you live with active RA, you get used to feeling unwell. Then the biologic works and you learn again the feeling of lightness that comes with not feeling sick all the time. Not only do you feel better, you are objectively healthier, as well. You may no longer be anemic, your inflammation markers read normal, and your blood sugar and cholesterol even out.
If you were debilitated before the biologic, it can take time to get back on your feet. Having your RA controlled becomes the foundation for building a life. When more activity is possible, the more you can do, and the stronger you get. Strength and ability increases all the time as you build on what you’ve created. There are no limits. It can take months to start functioning well again, and you can continue to get stronger as the years pass.
Sometimes, the medication you’re on will stop working as your body builds up immunity to it. So you switch, then switch again. There are several biologics available now and many more in development. You learn to hope, to have faith that one of them will be the key to your lock, the one to keep you in remission. You hope for yourself, and for everyone who is still looking for the right medication to help them go into remission.
Develop a new outlook on life
Being on a biologic that works makes you believe that anything is possible. You remember a dream you used to have, or start a new one, and then begin to think about making your dream a reality. Because, why not? And then, knowing that there are now medications that can bring about remission from RA, you start to dream that maybe you will see a cure in your lifetime. Because, why not?