1 Whole Year On Rituximab: Reflecting
Last updated: May 2023
It has been a whole year since I’ve been on rituximab as my NMO preventative treatment. I’m so grateful for the opportunity to have this treatment available to me for free.
When I was first diagnosed, I researched the treatment options for NMO. I wanted to get rituximab as it seemed the most efficient but also the least stressful, as I would not have to take a pill each day or have something injected frequently (like every week or two.)
Starting rituximab treatment for my NMO
On my first appointment with my neurologist, we spoke about treatment options. I brought up the fact I wanted to be on rituximab. Luckily, he completely agreed with me and said he was planning on putting me on that treatment before I even mentioned my interest in it. All we had to do was wait for approval.
I was on prednisone for around six months. He didn’t want to put me off steroids before my first dose of rituximab, just in case I relapsed. So, my first infusion was whilst I was on steroids. It was split in two, both two weeks apart.
So far, so good?
The first rituximab infusion was okay, except for an allergic reaction which caused the infusion to run longer. I spent about 12 hours in the hospital. The after-effects were just a bit of drowsiness, a headache, and mood swings.
All my infusions - except the latest one, which I had a few months ago - ran smoothly. I didn’t have many NMO-related side effects. The last one though, during the actual infusion, I had the worst allergic reaction I’ve ever had.
Side effects before and after rituxumab
Before the rituximab infusion, my physical state was probably at its worst than it’s been for a while. I was constantly tired and fatigued. My tremors were at their worst, and I felt like I was constantly in a flare. I was looking forward to the infusion.
The aftermath was horrible: mood swings, migraines, drowsiness, and the worst was the stomach issues. The stomach issues from the infusion are still present, but I’m hoping the benefits of rituximab for my NMO will slowly kick in soon.
The fight against NMO
Overall, rituximab has been an amazing preventative treatment for me and my NMO. So far, it’s been successful in preventing any NMO relapses and new lesions. That’s all I’ve ever wanted, I don’t care about the negative side effects of this treatment as long as I never have to go through another NMO relapse again.
I do get upset about having to rely on a treatment to survive, to be immunosuppressed at 20 years old, being forced to take extra precautions to keep healthy, to be unable to have kids in the future unless I want to risk having an NMO relapse (since you have to come off rituximab a year prior to trying for a child).
But I still wouldn’t change it for anything. My attack broke me completely, and I have spent over a year building myself back to who I was pre-NMOSD. I’m still not there yet.
Rituximab, NMO and hope
This disease is hard to deal with. But with the right treatment, it can help get our lives back on track. My hopes in the future are that we get treatments made specifically for NMO which are effective in completely preventing relapses. And that one day, we will finally find a cure for this disease.
Typically, how much time passes between attacks for you?