The Power of Love, Part 2
In an earlier post, The Power of Love, Part 1, I recalled my experience starting a biologic medication for the first time (Enbrel) and how I felt it was possibly the “miracle” I had been hoping for since my diagnosis. When all previous RA medications (Plaquenil, methotrexate, Celebrex, sulfasalazine, etc.) had fallen short or failed, Enbrel allowed me to finally break free of the powerful prednisone that poisoned my body on a daily basis in order to keep my RA under control.
Based on how stubborn and ruthless my RA had been since my diagnosis, I thought for sure I’d continue to be stuck on steroids for a long time, resigned to a puffy “moon face,” weight gain, “buffalo hump” neck, brittle bones, insomnia, mood swings, and other nasty side effects. Getting off steroid medication was indeed a joyful relief and something to celebrate, yet I couldn’t rejoice for too long. RA often had a cruel and unpredictable mind of its own, and fought hard to continue its attack on my weakened immune system and vulnerable joints.
The “biologic merry-go-round”
And so began what I like to call “Musical Biologics,” or the “Biologic Merry-Go-Round,” with your life spinning around and not knowing which drug to choose or which one might help for a little while. Or a long while. Or maybe it won’t help at all? Pick this, try that, see what happens next, keep waiting. What a guessing game!
Eight biologics and 15 years later, I have understood from years of personal experience, successes, and failures regarding these drugs that they are not a miracle or a cure. Biologic medications have amazingly transformed the lives of many RA patients, enabling people to live much healthier and more active lives than they might have if not for the drugs. This is wonderful and I’m so thankful that these medications exist. What would my life look like now if not for the biologics? I shudder to think of it. But something I do think about a lot is this: What would Nana’s life have looked like if these medications had been available to her?
When my grandmother first began to have RA pain and swelling in the late 1970s, there weren’t that many options available, and I think she tried them all. Her body was constantly on fire and attacking itself: her hands, her feet, her wrists, her knees, and even her skin. Nana not only suffered greatly from RA for many years, but from severe psoriasis as well. If I could jump into a time machine and bring her some biologic drugs to help ease her misery, I would do it in a heartbeat. Unfortunately, this is reality and the reality is that these highly effective drugs were researched, developed, and made available to patients too late to help her.
The need for better medications
The love I have for my grandmother, the love I have for my RA friends and everyone who suffers from the debilitating pain of RA, and the love and compassion I try hard to find for myself—this is why I am a passionate supporter of scientific and medical research, drug development, and clinical trials. Our lives are at stake and a cure is needed for these life-ruining diseases yesterday. The only way that people will get their lives back, that a cure will be found, is if new medications are developed and made accessible to patients. Clinical trials are a crucial part of all of this; we need them and we badly need more people to participate in them.
Even though living with RA often makes me feel frustrated and helpless, I believe that fighting against this disease isn’t a helpless or hopeless battle. Patients have power! We have the power to bring about awareness and even change just by sharing our stories. When you consider supporting medical research and clinical trials, I hope you will remember Nana’s story–and mine.
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