Three months since starting the new treatment, Rituxan, I can finally say that I’ve made obvious progress. It’s been anything but linear, and yet I’m more hopeful than I have been in a long time.
You may have noticed I’m not posting on here much, and my Facebook and Twitter profiles also haven’t been updated. But this is actually great news. It means I’m busy living my life and don’t really want to think or write about my illnesses.
However, I know there are people out there wondering how I’m doing, and I don’t want to break my six-year streak of posting once every calendar month. So I’m finally logging back on to give an update.
Why did I get Rituxan?
If you’re new on here, then what you need to know is that I got this IV medicine to stop my body from making antibodies that are attacking me (ie to stop an autoimmune process). Rituxan causes your immune system to destroy certain types of B cells. I have an autoimmune form of dysautonomia along with Myalgic Encephalomyelitis. And all of this after fighting PANS for many years and seemingly winning. I developed these other issues once the PANS mostly went away.
Before I go farther, let me put the disclaimer that everyone’s experience with this medicine is different. Also, as a person with ME, I suspect I had a harder time bouncing back than people with other autoimmune diseases for reasons I’ll discuss below. The infusion itself was easier for me to tolerate than IVIG, so again, if I didn’t have ME, I think I wouldn’t have had multiple weeks of worsened energy levels…
My progress and setbacks from Rituxan, week by week:
The day after, I had a ton of energy from the IV steroids, but then the flu-like side effects of Rituxan got me down. Three days post-infusion, I’m very tired both physically and mentally. I’m mildly depressed for sure, and I feel like I’m on the verge of having trouble functioning due to my mental health. I don’t like the trend I’m seeing, and I’m afraid this medicine will stir up old PANS symptoms.
I’m definitely “off.” I feel like I’m barely getting by and barely handling all of my stressors. I get upset more easily and cried for a solid twenty minutes after I tripped and fell onto a family member (who was completely unharmed)…. This is the PANS symptom we call emotional lability.
Two weeks after my first infusion and a few days after the second one, I’m completely wiped out. The brief burst of energy I got from the IV steroids is gone. I’m more tired after the second round of Rituxan than the one two weeks ago.
I dissociated for a few minutes one day, which hasn’t happened in close to three years. I’m still so physically worn out that I’ve decided to take matters into my own hands and start doing IV fluids twice a week instead of once a week (with my doctor’s blessing). I get two or three days of improved energy and decreased heart rate each time. Without the fluids, I feel worse than I did before Rituxan.
They told me I would feel crummy for two or three days after each dose of Rituxan, but I think it’s different for people who have ME. Having ME means you’re already in an energy crisis on a cellular level, so of course your body’s extra effort of killing off all those B cells is going to sap up already extremely limited reserves. (Does this have something to do with why I mentally feel like I can barely handle things, too?) Plus, people with ME tend to be more sensitive to medication in general. I’m not surprised Rituxan is taking up this much energy this far out from the treatment, but I’m still disappointed.
I was due for my usual medium-dose IVIG infusion, and it was the hardest infusion I’ve had in a very long time. The usual body aches were actual body pains this time and not much relieved by Tylenol and Toradol (an IV NSAID)… Perhaps this has something to do with the dying B cells and the bone marrow. I got a horrendous migraine, too, but at least my triptan rescue medication helped.
Week 6 and the setback
Five days post IVIG, I’ve spiked an 101º fever. This and the horrible headache usually only happen when I’ve been off IVIG for more than a couple of months. I’m shaking with chills under five blankets. When I got up to go to the bathroom, I heard a voice, and I haven’t had auditory hallucinations for a year.
Fortunately, the fever and chills stopped overnight, so my doctor said I don’t need to get checked for COVID or sepsis.
Week 6 and the first sign of progress…
I’ve started seeing glimpses of hope. I notice that my muscles feel… Different. I somehow feel stronger, as if my body wants to move more. I’m sure this sounds like BS or placebo effect at best, but I believe it’s rooted in a physiological change.
Back when I was a mild case of ME, without even testing it, I could know if I had the ability to go for a jog on any given day. My legs would either feel strong enough or not. Of course, I stubbornly tried to run on many occasions when they didn’t feel strong enough, and guess what always happened? I physically couldn’t even pick them up enough to do anything remotely resembling jogging. My heart rate wouldn’t increase enough, either, on days like that, so it makes sense that I couldn’t exercise at those times.
All of this is to say that I think the difference I’m feeling in my muscles has something to do with improved heart function and making less lactic acid. (People with ME make more lactic acid than a healthy person and have prolonged recovery periods from exertion.) The improvements are very small in my stamina right now, but I’m taking any improvement as a good sign.
I’m able to go longer between IV fluid infusions without feeling worse or having my heart rate be more out of control. Now I’m only doing it every 5–7 days and not feeling any worse.
I’m less depressed than when I started this medicine, but more depressed than I realized. I’m still able to be productive with my job, though—in fact, I’m doing more than I usually do. But someone asked me to say something positive that’s happened in my life lately, and I told them it’s been all negatives (not true at all).
The clouds have lifted. I’m not depressed at all, and things don’t overwhelm me as much anymore. I’m excited about the projects I’m working on, and I’m finally in the headspace to fully participate in this professional development program I’m doing online… The coach even remarked at how different I seemed.
My physical energy is noticeably improving. At Thanksgiving, I couldn’t handle the conversation and activity and had to sleep a lot of the evening. At Christmas, I’ve lasted the whole day.
I’m doing a lot for my job and working more hours than I have in a while. (Keep in mind that this is a desk job I do with my feet propped up!)
I had to get up early two days in a row this week, and I haven’t had an ME crash at all. Pre-Rituxan, I could crash for several days if I slept for less than eight hours on any given night. I used to need 9.5–11 hours of sleep every night, and now I seem to need less than 9 hours.
Week 16 (now)
I now rate my mental stamina at 80% of healthy on most days.
Three months ago, before Rituxan, it was probably around 30% because my mind would shut down after half an hour of watching a video course. I would stop being able to understand anything, and it would be so tiring that I couldn’t even speak coherently afterwards.
Now, I’m doing upwards of six hours of mental activity per day, and it’s not causing me to crash. This is enormous progress!
Physically, I’d rate myself at 25%.
At my worst, it was 10%, when a forty-minute car ride or stirring almond butter would make me ill the next day and for days after. Back then, I would be exhausted just from making coffee in the morning.
Before Rituxan three months ago, I was much improved from that low point, but I couldn’t really cook, do any kind of household work, or stand up for any length of time. Now, I can make simple things that don’t require cutting or stirring. I can put away some dishes. I can even stand up and have a conversation for a few minutes. None of these activities trigger a crash. I am still very much disabled from a physical standpoint, but it’s nice to be able to do a little more for myself.
Where to now?
The plan right now is to continue on Rituxan for at least a year. I’m also very gradually incorporating more movement in my day to rebuild strength I’ve lost over the last two years due to ME. You can’t exercise your way better from ME, but as you get better, you’ll be able to do more while staying within your limits—an important distinction. So the trick is to strike that balance of seeing if my limits have truly expanded while not doing too much to trigger relapses.
Now that I can do so much mentally, my physical impairments are easier to handle. I could sit around feeling sad that it’s been three years since I’ve been able to run as far as I wanted, or I can sit down and work at my job and all of the projects I can do now. My illnesses still affect me in some way all the time, but they’re more in the background now. I see myself as a person pursuing my career that has an illness rather than as a sick person who can still work a little—and that’s a big difference.
Let’s hope the positive trend continues…