Rituxan and the Waiting Game…

I’ve finished my first two rounds of Rituximab infusions and am happy to report that they went very well! 

To be honest, I was terrified of this IV medicine after reading about the potential side-effects of killing your immune system’s B cells. So let’s just say that after getting through the first five-hour infusion, I felt downright triumphant for facing my fear.

The infusion itself was quite easy. I got steroids and IV Benadryl half an hour before starting the medicine to prevent reactions. The first infusion is run slower, for me over five hours, in case you have a reaction. But I didn’t have the slightest hint of an allergic reaction during either infusion, and if you don’t react during the first infusion, it’s unlikely you’ll react badly in subsequent doses. I did start feeling very achy towards the end of both infusions, but it wasn’t anything too uncomfortable.

Why did I get Rituxan?

It’s no secret that I started this blog to document my recovery from PANS/PANDAS, after going eight years without a diagnosis. I got better and haven’t met diagnostic criteria for it in nearly three years. I no longer suffer with severe OCD, depression, debilitating anxiety, constant involuntary movements, or any of the other horrible symptoms of the Basal Ganglia encephalitis. I’m currently everything I never was while in the thick of PANS: happy, productive, coherent, and sociable. Brain inflammation? What brain inflammation?

But three years ago, the encephalitis upended my life again in my last year of college in catastrophic ways unlike ever before. I was “gone” for a couple of months, and it took a whole year to get all of my cognitive skills back. Somewhere in the midst of my recovery, I began to notice I physically couldn’t run anymore, after years of long-distance running for fun. Then I was getting sick all the time but not flaring from it (a big sign to me that this was something new). Long story short, I believe my condition evolved to go after my autonomic nervous system instead of my brain. After mutating from the constellation of symptoms known as “PANS,” this illness then got dramatically worse in 2019.

No one understands why this would happen, as it’s certainly not at all the norm in someone who seemingly recovers from PANS. (Maybe I did develop a completely different autoimmune disease?) However, my doctors have identified antibodies that are indeed attacking my autonomic nervous system. If the Rituxan will stop my body from making more of them, we should see an improvement in my symptoms in 3–4 months.

Mentally, I may still be well, but my level of physical impairment is unprecedented compared to the “old days” when it was just PANS. I haven’t been able to take a walk around the block in over a year and a half. I often can’t cook meals for myself. I can only do work while somewhat reclined and only for an hour or two at once. And if I go beyond these limits? It’s like I have a horrible flu for several days after—if not several weeks.

Welcome to my life with new labels, Myalgic Encephalomyelitis and POTS, where it takes nine medications, ten supplements, three types of injections, and regular IV infusions just to function at this level. This all started with encephalitis, so we’ve decided that it must end by treating it as such, too. And I dare say there’s more inflammation in my body (including my brain) than I may realize, as I’ve found out in the last few weeks…

The nurse warned me I would feel flu-like after Rituxan for a few days. Well, that’s almost my normal, so I didn’t think it would be a big deal. When I felt mostly fine the day after the first infusion, and in fact was extraordinarily productive that day, I figured the worst was behind me. Oh, how wrong I was.

The Post-Rituxan Flare

A couple of days after the first infusion, the worst of the exhaustion hit. It was a feeling that I MUST go lie down, and I had a hard time putting sentences together because I was so tired. Frankly, I’m a bit used to this feeling as someone with Myalgic E., but it hasn’t been this bad in quite a while. One day, I was so tired that I went to the fridge to find something to heat up for dinner only to get so tired I had to put my head down on the table to rest, and then just gave up on heating the food entirely… This would have been a recurring event lately without my family around to help.

A couple of days post-infusion, I managed to hold myself together for an hour-long Zoom meeting that evening, but as soon as I hung up, I snapped. Suddenly, I just started crying even though it was a great meeting.

When I have a PANS flare, one of my main symptoms is that I cry way more than I normally would. This is what is referred to as “mood lability,” and for over a year, it’s often been the main sign I’m having any kind of PANS-type flare. But then that night, it took me three hours to get in bed because I was suddenly so depressed it was hard to even move.

Oh, but there was more. 

A few days after my second round of Rituxan, I woke up screaming one morning. Again, nightmares, hypnopompic hallucinations, and waking up screaming are some of my main symptoms in a PANS flare these days… Last night, I also woke up feeling like someone was grabbing me.

To top it all off, I had one day when I dissociated for a few minutes, which hasn’t happened for nearly three years. When I was in the worst of PANS, I could dissociate for hours on end, if not days at a time. I used to go through life feeling completely detached from the world around me in those times.

Even if it only lasted a couple of minutes this time, it was unsettling for the dissociation to have happened at all. In fact, it was downright shocking, because I remembered what my life used to be like and hoped I wasn’t headed for a downwards spiral.

On the other hand, if I’ve had all of these glimpses of old symptoms again post-Rituxan, could it be a sign that I’m onto something with the Rituxan? I’m telling myself that the treatment is stirring up old symptoms because it’s dredging out the whole disease.

I was warned that Rituxan can increase psychiatric and pain symptoms for 1-5 months in the beginning, but I didn’t think that would start within 48 hours like it did. In fact, I thought it wouldn’t happen at all because I don’t really have PANS anymore… Or so I tell myself. 

But Rituxan works by causing your own immune system to destroy your B cells. And do you know what can cause people with PANS to have flares? Anything that activates an immune response. Thus, my hypothesis is that I’ve been in a mild flare due to the medicine having done its job of triggering the destruction of B cells. (Mind you, it’s so mild for me that I’ve literally done nothing to manage it.)

Is Rituxan Helping Yet?

Unequivocally, no. In fact, even aside from the mini PANS flare, I’ve felt worse so far. I’ve been having ME crashes much more easily and more often in addition to the aforementioned PANS symptoms coming and going. I had about a week when my resting heart rate was better than usual, but ever since the second round, it’s been worse than usual.

Two weeks after my second round, I’m finally starting to get my physical energy back, and I haven’t gotten any worse mentally. There’s nothing else I can do to make the Rituxan work better, so I’m just going to not stress about it while I wait for it to work.

So I’ve been throwing myself into things I enjoy. For my real job, I’m working on a project that could launch my career if I do it well. Though stressful, it’s what I’ve been preparing to be able to do for all these years.

And then I broke the 90,000 word mark on my manuscript this week! That’s right, my self-help memoir on excelling in college with chronic illnesses is about to be done. I will probably make a post about my book in the next week or so, whenever I finish the first draft… I find it poetic that I’m finishing this book just as I’ve gotten Rituxan to hopefully finish off the remnants of brain inflammation.

So for now, I’m going to keep living my life as best I can while waiting and hoping for the best from Rituxan.

One thought on “Rituxan and the Waiting Game…

  1. So sorry you’re going through all of this & still having to deal with this!
    Your book is an unbelievable accomplishment, considering all you’ve been through. It must have been very therapeutic.
    I hope you heal completely & as soon as possible.
    Prayers for you 🙏

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