I’m starting a year of Rituximab infusions.
This is an IV biologic medication that kills your B cells. Yes, I’m wiping out a chunk of my immune system in the middle of a global pandemic. Yes, I’ve just signed on to do this every three months for at least a year. Rituxan is not a medicine you get prescribed unless you’re seriously ill—and apparently I am.
That last part is not exactly news to me, though it’s something I don’t like to admit. My baseline hasn’t met diagnostic criteria for PANS in over two years, meaning my mind is basically fine, some brain fog notwithstanding. Thus, I’m often able to work part-time and enjoy it, and I’m able to be social with my friends virtually—neither of which were so easy when I had classic PANS.
I think having been through PANS, which is so horrible in how it affects your mind and sense of self, I can downplay the severity of my present physical symptoms even though they are objectively debilitating. For so many years, all I wanted was mentally to be myself again, and now I am. I got exactly what I wanted… Except for the part where I became physically disabled instead.
My autonomic nervous system is completely haywire.
If I stand still, my heart will shoot up to the 130s within a couple minutes, if not almost instantly. Every few weeks, I end up doing emergency IV fluids because my heart rate will get stuck between 120 and 160 for hours on end even while lying down. I have random sweating attacks during the day and often wake up in the middle of the night drenched. On a good day, I function at 25% of what you’d expect for someone my age. I can only walk a few hundred feet at my best. I can’t even do light housework like dishes or cleaning for more than a few minutes without making myself ill. Oh, and let’s not forget that a few months ago, my gastroparesis got so bad that I ended up in a day hospital for a couple of weeks after losing 10% of my bodyweight.
As some of you may remember, this is not the first time my doctor has wanted me to do Rituxan. I was supposed to get it last year. The reasons I decided against it are complicated, but they involve both a traumatizing experience and getting accepted as a patient by one of the few specialists in Myalgic Encephalomyelitis.
After the traumatizing experience, I was forced to step back and reconsider what I was about to do. Since ME was, and still is, my main issue, it wasn’t clear that Rituxan was the right choice at that point. My neurologist didn’t know a lot about ME. I wanted the opinion of the ME expert before taking such a big step. Before wiping out my B cells, it made some sense to me to try other treatments first. I don’t completely regret this decision.
Until a few weeks ago, my ME doctor’s opinion was that neither Rituxan nor IVIG would likely give me the results for which I hoped. But then she found yet another antibody which was apparently attacking my autonomic nervous system. And suddenly, I was right back at square one dealing with some kind of autoimmune disease. This immunologist wanted me to start monthly high-dose IVIG for two days in a row.
So I made an appointment with my neurologist to see if she would agree…
“More IVIG?” my neurologist said. “You’ve already been on IVIG for years… That’s not sustainable.”
“With several long breaks,” I countered. “The medium-dose I’m on helps but doesn’t last long. And this would be high-dose. Isn’t that different?”
“You can’t do IVIG for the rest of your life… Why do this? You’re just treading water.”
I paused, realizing where this conversation was about to go. “So high-dose isn’t different?”
“Those GAD antibody titers were high, and IVIG isn’t going to fix that… You need Rituxan.”
There was an even longer silence as I realized there was no getting out of it this time. I knew my doctor was right. I knew there was a slim chance of getting the higher dose of IVIG for multiple months approved by insurance without a long fight, and I knew that even if I did get it approved, it would be very hard on my body. With how rough medium-dose IVIG is on me, I knew high-dose could mean severe headaches and feeling bad for at least a week out of every month. And to what end, if it really wasn’t sustainable long-term?
We spent the rest of the appointment having conversations about how safe Rituxan is, because frankly, the potential side-effects I’d read online were terrifying. Last year, I eventually decided (on my own, I should add) that I wasn’t sick enough to warrant the risks. But after a ton of reassurances, more research, and now armed with even more evidence of an autoimmune process, it seems like Rituxan is worth a try after all. The worst side effects are extremely rare, and as far as I have read, seem most likely to happen in people taking other immune-suppressants or who have other major health issues on top of their autoimmune disease. So not in people like me.
Plus, most people I’ve talked to have said they had fewer and less severe side-effects from Rituxan as opposed to IVIG. I would like that a lot.
Unfortunately, no one knows whether or not this Rituxan will help the ME itself, specifically the post-exertional malaise (flu-like symptoms starting 24-72 hours after exertion) that runs my life. Despite the terrible name, “Chronic Fatigue Syndrome,” I don’t feel fatigued all the time—I ration energy expenditure to avoid triggering PEM. This is not the kind of tiredness that POTS and dysautonomia in general are famous for causing, but rather, an abnormal neuroimmune response to exertion. So will a treatment for autoimmune dysautonomia even help my main problem?
(I am definitely encouraged knowing a close relative went through months of Rituxan for something else and also saw all of their dysautonomia go away.)
The hope is that enough of my symptoms have to do with an autoimmune process that Rituxan will improve my quality of life. Even if all it did were stop my heart rate from being so wild and helped my gastroparesis, I think I would be able to do a lot more. At any rate, I say it’s no coincidence that IVIG put PANS and, at one point, everything else into remission. Actually, I’m pretty sure my neurologist thinks I have the same disease as I always did but manifesting differently. I hope a more powerful immune-modulator will work even better.
But part of me is still terrified of rituxan.
The news that I really do need Rituxan knocked the wind out of me and triggered at least a week of intense depression and anxiety. How did I get this sick? How will I respond to the treatment? Will it work, or will it all be for nothing? To be honest, I’ve hardly been mentally up for doing much professionally (including the program I mentioned in the last post) since finding out. It’s so much to process, and it’s really hard not to stew over what the Rituxan might or might not mean for my life.
To be completely honest, I went to bed the night I found out sobbing because I was so scared. And I’ve since had several other nights when I panicked again. One night, I decided I was going to call first thing in the morning to cancel the whole thing. I can’t quite get over those rare side effects. What if one of them happened to me? I don’t want to die… But I also don’t want to refuse a treatment that has the potential to completely change my life for the better.
“You’re just treading water… Unsustainable… High GAD antibodies…”
The words echo in my mind every time I try to talk myself out of Rituxan. To look at the situation objectively, I know I’ve plateaued at best but may in fact be getting worse. I’m having a harder and harder time with brain fog, and the Mestinon doesn’t always seem to work as well as it used to for my heart rate. Plus, I’m now having the intermittent itching and shooting pains in my legs and feet that are characteristic of small-fiber neuropathy. It’s becoming clearer and clearer that my immune system is in fact attacking my nervous system.
I’ve had eight months of antivirals and low-dose naltrexone to treat the ME and more rounds of low- and medium-dose IVIG than I can remember. Although I’m far better than I was just over a year ago when everything fell apart, my current protocol clearly isn’t going to get me the rest of the way better. But Rituxan might, or it might at least get me to being a mild case of ME again.
I’m ready to get my life back.
I’m done treading water. It’s time to climb into this treatment boat and get better. So friends, I’ll do my best to write about my progression through Rituxan treatment as able…