Managing Neuromyelitis Optica Spectrum Disorders (NMOSD) - Episode 8

Treating NMOSD: What to Expect

Neuromyelitis optica patient Doug highlights the types of treatments he has received since his diagnosis and provides suggestions to patients on navigating therapy, especially during the COVID-19 pandemic.

June Halper, MSN, APN-C, MSCN, FAAN: Doug, your journey has been a different one than Kim’s. How are you doing? Are you on any treatments or are you planning to initiate some of these treatments that we’ve discussed?

Doug: Yes. I started rituximab while I was still in inpatient physical therapy. I was diagnosed with NMO [neuromyelitis optica] while I was there, the aquaporin-4 test came back positive. Like Kim, I did plasmapheresis, or plex. Honestly, one of the scariest things of this whole process was when they had to put a jugular device in my neck. That’s a little uncomfortable to have that happen, and I actually had to have it done twice. The actual plex, or the plasmapheresis, for me was not too bad. I had done platelet donations for years, and so I was comfortable with the machinery. I actually didn’t start Rituxan until near the end of my inpatient physical therapy. I went on steroids at the same time because it takes a little bit of time for the Rituxan to deplete the B cells. My doctor wanted to ensure that I still had some protection, so that I wouldn’t relapse during that period. My initial experience with Rituxan is that it works very well, both to prevent relapse, but it also did a good job of killing my B cells. I found myself in the hospital every four to six weeks with an opportunistic infection. Now also every four weeks, I get a dose of immunoglobulins or IVIG [intravenous immunoglobulin]. Since I started doing that, I’m healthy and not having those opportunistic infections.

The combination of the two drugs seems to work best for me. I had to learn to walk all over again. I still don’t walk very well. The left side of my body is still pretty numb. I used to play the guitar and the piano, and I just don’t have the dexterity to do that. I’m a one-handed typist now, although I’m getting pretty fast. The plasmapheresis made a difference for me. The steroids didn’t seem to affect me at all, so I’m grateful that Dr. Weinshenker developed that process because it made a difference in my life. I likely would be in much worse shape now without that. I’ve been vaccinated with the Moderna vaccine, and I had that just before I had the next dose of Rituxan in the series, about four months ago. I also got a booster last week at the advice of my immunologist. Other than some minor fever and other things, that went fine.

June Halper, MSN, APN-C, MSCN, FAAN: Thank you for watching in this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to our e-newsletter to receive upcoming programs and other great content in your inbox.

Transcript edited for clarity.