I've had a few weeks now to digest the news of my lupus diagnosis. At first I was incredibly sad, then mad and now frustration has consumed me. The very medication that once offered relief now creates new health concerns. For many, including myself, navigating this unexpected twist is both daunting and infuriating. The struggle to secure new treatment options adds to the stress. Instead of feeling sorry for myself though, I needed to switch gears, and share what I've learned.
In my case, Humira and I had a complex relationship. I never loved it from the beginning, and fought like hell NOT to take it. You've all seen the commercials with the side effects a list a mile long, right? Who would want to take it after seeing that?! Unfortunately, this is just par for the course with all biologics and biosimilars. In my specific case, I didn't have a choice in the matter. My Crohn's had worsened, and I needed a more aggressive treatment. I finally made peace with it, and surrendered myself. After my loading doses and first few months of subsequent injections, I started to feel better. I got my life back, and I owe that to Humira. It worked for a very long time to keep my Crohn’s disease at bay. However, on February 14th, I faced the difficult decision to stop that treatment abruptly. Although Humira had helped me achieve deep remission, the risks associated with it became unbearable. With my health at stake, my GI doctor and I chose a new path: Entyvio infusions.
The Transition to Entyvio
The conversation about switching to Entyvio was not taken lightly. My doctor shared potential benefits, and I experienced a whirlwind of emotions: hope mixed with anxiety. Would this new treatment really work? How would my body adapt?
After doing my own research along with talking to members of the IBD community, my fear seemed to lessen. By targeting the gut specifically, Entyvio treatment offers a more targeted and localized approach compared to other prescription drugs and therapies, with less reduction of the body’s overall disease fighting defense mechanisms while still achieving a therapeutic benefit for many patients with moderately to severely-active ulcerative colitis and Crohn’s disease.
Changing medications comes with challenges, especially for chronic illnesses like Crohn’s disease. The gravity of the situation was heightened by the bureaucratic hurdles that often accompany treatment approvals. As of March 10th, I know I have been approved for the infusions, but I am still waiting for confirmation that the infusion center near my home will be able to take my case.
The Painstaking Approval Process
The waiting game can be the hardest part. This marks the longest I have gone without treatment in my 17 years of living with Crohn's. Waiting feels like a unique form of torture. Every day is accompanied by a struggle of emotions—fear, frustration, and a yearning for relief.
As I wait, my annual colonoscopy was moved up to see exactly how much active Crohn's and inflammation was present. Some good news to report. I only have mildly active chronic colitis in my rectum and moderately active chronic colitis in my transverse colon. All biopsies came back benign. The thing about inflammation though is that it can start out as a small spark, and quickly turn into a wildfire. Time is of the essence to tame the flame.
The approval process involves a seemingly endless stream of administrative tasks. From filling out forms and tracking down signatures to following up with insurance companies, it feels like we are navigating a maze. Many of us managing chronic illnesses know this: we should be able to access the medications our doctors recommend without jumping through countless hoops.
What You Can Do If You Find Yourself in a Similar Situation
If you find yourself facing a similar situation, know that you are not alone. Here are steps I have taken that might help you ease this difficult journey:
Mark Urgency: Ask your GI doctor to classify your case as urgent. When marked as urgent, the prior authorization (PA) decision may take just 72 hours instead of up to 10 days. This minor action can lead to significant changes in the timeline.
Be Persistent: Don’t shy away from following up. Calling your insurance company daily can yield results. A focused effort often leads to faster responses, so remember, your health is on the line.
Have a Bridging Treatment Plan: My doctor and I discussed options to bridge the gap during the medication switch. A recent colonoscopy showed only minimal inflammation, which made me hopeful. As a temporary measure, I opted for Evinature, which I call “nature’s prednisone,” to maintain some treatment level while waiting for Entyvio.
Discuss Alternatives: While we explored options like prednisone, I made a conscious choice to avoid it based on past experiences that led to significant harm. Advocating for your body is vital, and you should prioritize long-term health over short-term relief.
Manage Your Stress Levels: It's crucial to focus on managing stress. This path is challenging enough without adding anxiety that could worsen your symptoms. Engage in relaxing activities, like practicing mindfulness or spending time outdoors, to help ground yourself.
Moving Forward: Each Day Brings New Hope
Switching from Humira to Entyvio has been riddled with complications, but I am learning that patience and persistence are essential. Each day, I become one step closer to securing the treatment I need, fostering resilience during this waiting period. The battle does not end with a diagnosis; that’s often just the start. The healthcare system, albeit well-intentioned, can sometimes seem like an obstacle course filled with challenges. However, by advocating for ourselves and pushing for urgent care, we can navigate through these hurdles together.
If you find yourself in a similar situation, remember to stay actively involved. Keep moving forward, and fiercely advocate for your treatment. I am an insurance company's WORST nightmare. I will call and hound them each and every day until I get answers and am satisfied. That is my right. It's YOUR right. We all deserve timely responses and a chance against chronic illness. Stay strong, and keep fighting.
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