Choosing Between a Medication That’s Proven Effective and a Better Quality of Life

Since 2012, I have been using Rituxan (rituximab) to treat my neuromyelitis optica. I had no major complaints about it until 2018.

My neurologist back then referred me to an immunologist, who recommended I start immunoglobulin replacement therapy (IVIG) to increase the levels of immunoglobulins that had been lowered by the Rituxan treatment.

I received my first two monthly IVIG infusions at a local hospital in Florida, for an insane monthly copayment of $500. Additional charges took that to about $700. I spoke with the doctor to look for alternatives, and thankfully, we found a better option.

The financial aspect was not the only difficult part. At the time, I had to get used to receiving another monthly infusion in addition to the stress of having Rituxan infusions four times a year. Plus, my veins were becoming scarred. The nurse that the home infusion service provided at the time had difficulty finding a vein.

My experience here in Massachusetts with this type of medical home service is better than the one in Florida. My nurse here is outstanding. She is skilled, friendly, nice to talk to, and only has to poke my veins once. However, as much as I enjoy her company and professionalism, I wish it didn’t come with monthly infusions.

I’ve also had some issues with the billing department. They billed me a few times for services I wasn’t clear about, without itemizing them. Thankfully, I got to the bottom of it, and the bills were canceled.

At the end of last month, my specialty pharmacy called about a voluntary recall of the 20% Gamunex-C that I receive as an IVIG infusion. They told me they would send an empty FedEx envelop along with new medication. They asked me to send the recalled medication in the empty envelope they provided.

The office manager of the immunologist who prescribed it for me called on a Monday morning to say that the pharmacy said I already had the medication when I didn’t. A week later, I’m still waiting to clarify the situation.

I’m sharing the mundane details of this anecdote to illustrate all of the extra time and energy that patients often experience when having this kind of treatment, whether they go to a hospital or have the infusions at home.

Despite receiving the Rituxan infusions only twice a year now, they still present challenges. For example, I can’t see properly because of an eye condition. So, I prefer not to drive through chaotic Boston traffic, which is an hour from where I live.

Before the pandemic, I used to drive to the nearest train station that services Boston. From there, I would take two subways that delivered me right to the hospital’s front door. It wasn’t ideal, but it worked. Now, with the pandemic, I don’t think it’s a good option.

Instead, my husband must take a day off work to drive me to Boston, then head back to Plymouth, and then return to Boston to pick me up when I finish the infusion. This is because he is not allowed inside the infusion center as a hospital safety measure to prevent COVID-19.

The point I am trying to make is that when I hear from my doctor that I can get a break from all of this hustle and bustle, I jump at the idea. I don’t want my entire life to revolve around planning infusions.

Last month, I was excited when my doctor told me about the possibility of receiving an Enspryng injection once a month instead of Rituxan. That also would mean no monthly IVIG infusions.

The issue here is that Rituxan has been working for me since 2012. Rituxan’s effectiveness is a little better than the Enspryng injection, but not by much. My question is should I risk a little bit of efficacy of one medication to improve my quality of life? Receiving Enspryng would absolve me of several logistical headaches.

Despite the inconvenience of getting Rituxan, I am grateful to have been relapse-free all these years. However, I believe it is time to improve my quality of life with a new treatment.

I guess getting a new medication is sometimes a bit like gambling. We patients don’t always know if we’ll win or lose. In any case, the offer is attractive.

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Note: Neuromyelitis 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 Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.