My Monthly Infusion Always Brings Hope

[Joachim]

Today is my infusion day, and I’m excited and hopeful.

I’ve been taking Inflectra (infliximab-dyyb) for about four months. Before that, I was on Remicade (infliximab), until my insurance company suddenly stopped approving it, compelling me to switch. The U.S. Food and Drug Administration considers the two to be biosimilars, so it wasn’t a big deal for me. I haven’t been able to tell a difference between the medications.

This monthly infusion is an example of how tough managing a rare disease can be. It helps to be an active participant in your care and have a strong support team of medical professionals, friends, and family. Currently, most insurers don’t recognize Remicade or Inflectra as sarcoidosis treatments. They are more commonly prescribed to treat conditions like rheumatoid arthritis and inflammatory bowel disease.

This can lead to some challenging conversations with insurance providers. In my case, having a team at the Johns Hopkins Sarcoidosis Clinic is beneficial, as they have a process for pushing for the approval of my infusions, even if they are initially rejected. We will be putting this to the test shortly, as my insurance coverage is changing in 2022.

While the care I receive from Hopkins is world-class, part of the reason I keep these Maryland-based doctors (when I live 200 miles away in Brooklyn, New York) is because I trust that the recommendations from Hopkins specialists carry a great deal of weight and credibility. When a patient needs care, they are more likely to be able to provide that care.

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But why does infusion day bring me hope? There are a few reasons.

Firstly, a monthly three-hour infusion means fewer pokes, as the medication keeps my skin clear from the effects of sarcoidosis. I used to get injections to help reduce inflammation and redness on my nose and even in my tear ducts. Now, I have quite a few tattoos, so I’m not afraid of needles, but I can assure you that having needles in your nose and tear ducts is a different level of annoying unpleasantness. The infusions mean I no longer need these injections, or even most of the creams prescribed by my dermatologist.

Secondly, the infusions reduce the number of pills I have to take, and my pulmonary sarcoidosis fares much better. I still take about 150 pills a month, but without the infusion, it would be a few hundred. I especially like that I usually take less than 10 mg of prednisone each month. We are still evaluating whether I will need to increase the dosage again, but the infusions at least give me a chance to find out how much I can reduce other medication dosages. Considering the horrible side effects that can accompany many of those pills, taking less is a wonderful thing.

Lastly, even though infusions often leave me physically tired, I am always mentally energized afterward. (Well, after a nap, at least.) I get to do my infusion at home, exchanging only three hours a month for far better sarcoidosis outcomes. And this means I get to feel more “normal,” and have a better chance of being there for the people I care about.

While I’m sitting through each infusion (I’m admittedly writing this column during one now), I usually have time to think. Even though the holiday season is often mentally and emotionally difficult for me, as I’ve lost so many loved ones, these few hours help me feel better about what is to come.

And perhaps that is even more important than the physical benefits.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

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