Never Take Someone's Word for It Regarding Your Treatment Options: Always Do Your Own Research

Navigating treatment options for chronic illnesses can feel overwhelming, especially when it comes to medications for conditions like Crohn's disease. After facing severe complications from Humira, which left me with drug-induced lupus, I became more skeptical as well as scared of biologics. I realize that these strong drugs are life changing, and life saving in some circumstances, but I can't help but wonder what other rare disease or side effect might I get from Entyvio? Sometimes I just want to throw in the towel, and stop treatment. I know better though. Almost 20 years of different medications, periods of extreme illness, sacrificed quality of life.....the list goes on. I usually exude positivity, but I also want to show IBD warriors that I am human. It's ok to be vulnerable, and show a softer side. That being said, time to dig deep. I needed to buck up, and get ready for what's coming next.

When considering alternatives to Humira to manage my Crohn's disease, I learned about Entyvio. I immediately reached out to the IBD community, and received A LOT of positive feedback on the biologic. There's always a mix of people who do either the infusions or the injections. Most of the time, it's dependent on insurance, which method the medication will be administered. The prospect of being able to administer injections at home was appealing mostly because that's what I was used to with my former medication. This method could allow me to manage my treatment independently, making it feel less disruptive. Studies show that about 70% of patients prefer self-administered therapies, as they often provide more flexibility and comfort.

It's not that I was scared of needles. After all, I've been poked more times than I even know. I guess I didn't want to deal with the "what ifs" of it all. What if my nurse hits a nerve? What if my infusion site gets infected? What if I go septic (this is rare, but recently happened to a fellow IBD warrior)? Who wouldn't want to eliminate those x factors if they could, right?

Unfortunately, the decision was made for me. I don't consider myself a control freak, but when there are so many uncontrollables with having Crohn's disease, I wanted to have a say on how the biologic would be delivered to my body. I quickly realized that my expectations may not align with the reality I faced. While discussing treatment options with my gastroenterologist, I hit a major obstacle. A nurse informed me that my insurance would not cover Entyvio injections, ONLY infusions. Normally I would appeal right away, but I needed treatment pretty quickly because at this point I had gone 33 days without managing my Crohn's. I decided to be happy that insurance was able to cover the treatment, and started to gear up for my innaugural infusion.

My first infusion went off without a hitch, but I wasn't so lucky the next time. During my second infusion, I experienced a turning point. While the nurse was administering my medication, she accidentally hit a nerve, causing me excruciating pain. I didn't say anything at first because all IV's are uncomfortable, but this was different. I have a pretty high threshold for pain, but after 5 minutes of questioning whether this was right in my head, I hit the call light. The nurse told me that it should never hurt. She immediately removed the IV, and administered a separate one in my left arm. This incident reminded me of my initial doubts about the infusion process. In that painful moment, I realized I needed to actively research my options rather than merely going with what I was told from the beginning.

Reflecting on that incident made me understand the importance of being well-informed about the different treatment avenues available.

After my painful experience, I took the initiative to call my insurance company. To my surprise, they confirmed that they would indeed cover the Entyvio injections! I had the insurance agent send me the transcript of our conversation via email. Documentation is so critical when dealing with multiple groups, conversations and important decisions on the line. The nurse at my GI clinic had been misinformed. Not only that, but she was very quick to say it wasn't covered. Looking back, I should've prodded her more, but again, I was just eager to start treatment. Armed with this new information, I felt empowered and ready to take the next steps in my treatment journey. I learned I needed to contact Accredo specialty pharmacy for further instructions, allowing me to pursue the injectable option I had preferred from the start.

Following my conversation with the insurance company, I reached out to Accredo. They shared that I simply needed my gastroenterologist to fax an injection prescription to them. The realization that my persistent efforts had led to this straightforward solution was uplifting, but frustrating at the same time. Why wasn't it this simple from the beginning? This experience highlighted how essential it is to be organized. Keeping detailed records of my conversations, understanding my insurance policy, and staying informed about my treatment options enabled me to secure a more favorable outcome.

This journey emphasized a vital lesson in managing my healthcare: always do your own research. It is not enough to rely on the information given by medical professionals, insurance agents, or pharmacy staff. While many are knowledgeable and genuinely want to help, mistakes can occur. It is essential to verify information to ensure I receive accurate and beneficial guidance. Now that I have secured Entyvio injections and can administer them at home, I feel a renewed sense of hope. Being able to maintain my treatment routine in my own space, without the challenges of infusions, offers a sense of freedom. This control allows me to focus more on my health and well-being.

As I move forward, I encourage everyone to take an active role in their healthcare journey. Always ask questions. If something seems off, investigate further. Research your treatment options thoroughly, and don’t settle for less than what you deserve. My experiences serve as an important reminder that being proactive in healthcare is invaluable. The challenges I faced while transitioning from Humira to Entyvio, compounded by the insurance labyrinth and nursing errors, could have left me feeling defeated. Instead, I embraced self-advocacy and diligent research, leading to a treatment plan that aligns with my needs.

In the world of chronic illness, the road ahead might be tough, but with determination and knowledge, we can achieve better health. Trust your instincts, stay informed, and never take someone’s word for it, NEVER. Especially concerning your health. Your well-being is your responsibility, and empowerment through knowledge is key.