The Therapy At The End Of The Road – Part Three (End)

The Entyvio infusion went off without a hitch yesterday – no allergic reactions, no lethargy or achiness – but no reduction of symptoms, either. I am not surprised, as a nurse informed me that patients have not reported immediate, positive results. The first three infusions are done in rapid succession. After that, we shall see. The data is not in for a drug approved by the FDA less than one year ago.

Two years ago, when all other drugs had failed, I was given infusions of Remicade. Remicade is an across-the-board immunosuppressant, and I began to focus in earnest on hand washing and sanitizing and keeping my distance from others who were sick. Thankfully I quit smoking two years before, lessening the chance of respiratory infections.

Refraining from sick people would be more difficult if I infused at a healthcare facility. My health insurance covered in-home nurse visits, and I eagerly signed up. I soon regretted that decision.

Home health visits work best for infirm patients who find it difficult or impossible to seek medical treatment outside their homes. As a mobile and fairly healthy patient, however, it was a big old pain in the ass for me. The appointments were generally on weekdays, and I scheduled the infusions around work commitments; the nurses were never on time, sending my entire day into a tailspin. Without the infrastructure, equipment and supplies of a clinic, the appointments took longer at home – usually at least four hours. Once the infusion was underway, I had the uncomfortable feeling of the presence of an interloper in my inner sanctum, mingled with the innate Southern Belle compulsion to entertain and be hospitable. On one particular occasion, I served iced tea and the nurse and I watched episodes of “Top Gear” (British version, of course).

To save time and to be productive, I began scheduling infusions at the firm. I saw discomfort in the visages of coworkers as I passed them in the hallway, infuser in a fanny pack, nurse tagging along behind. The nurse took my vitals every 15 minutes, and my blood pressure was always high when I infused at the firm, even though I had textbook normal blood pressure readings my entire life. The funny thing was that I didn’t feel worried or anxious, and I wondered just how high my blood pressure had gone during the times I actually felt palpable, deadline-driven stress, frustration, or anger at work. Those blood pressure readings at work played a role in my decision to take a break from the law.

In the beginning, I experienced an almost immediate reduction in symptoms following a Remicade infusion. Forgive the indelicacy of the next few sentences, but I am doing my best to describe the reality of my life without being too terribly vivid. “Dr. Oz” says that feces in the shape of letters and commas is evidence of good health. During a flare, I produced Jackson Pollock canvases and the occasional lava lamp. During non-flare times, the best I could hope for was an exclamation point! In the early days of Remicade, on the day following the infusion, I pooped commas and candy canes and fuckin’ rainbows.

Slowly, Remicade became ineffective. First, we mucked with the dosage. The nurses marveled at the number of milligrams I was taking. Amping up the therapy eventually failed; I was also having the infusions closer together, but it was not working. I was devastated, but somewhat relieved. I paid $750 out of pocket for each infusion, after my health plan paid its portion. Paying for Remicade was like a monthly payment for an Escalade I never owned.

After Remicade there was Humira, which never, ever worked. It was shipped in a refrigerated container, so I had an endless supply of styrofoam coolers the size of lunch boxes, and I couldn’t give those damned things away. I hope Goodwill got some use out of them. I injected Humira into my abdomen myself, which I thought I would never be able to do, but it was actually quite simple and relatively painless. Then there was the hassle of getting rid of the “sharps” – the used needles. Humira shipped a big red plastic container, which I filled and returned to them in the mail. I’ll bet you didn’t know that medical waste is routinely mailed through the U.S. Mail. I didn’t.

That brings us to Entyvio. You are all caught with with my tale of medical woe, dear readers. Thanks for sticking with my story, gruesome though it may have been at times. Let’s see where this road takes us from here.