In a subsequent blog entry; when the phase III trial is fully released, I will detail the theory behind using Rituximab as an ME treatment as well as present the studies investigating its usage. This blog entry is focused on my experience with Rituximab.
I had to go through the laborious task of seeking government approval prior to starting Rituximab. This process was just as you would expect bureaucratic dealings to be. Another barrier I encountered was the extremely high cost of the drug and affording it. I was lucky enough to come 2nd in something called AFL SuperCoach for the 2017 season. It is essentially a fantasy sports game involving making inferences from Australian rules football statistics and is largely dependent on luck. This luck (or lack thereof) has been a key theme permeating my Rituximab experience. On the surface certain events would appear lucky only for the spool of bad luck to unwind. The money I luckily won from SuperCoach covered my first infusion and part of my second infusion.
During October 2017, I attended a cancer centre for my first infusion: 1000mg of Rituximab. I was told the infusion would take around 6 hours. I knew being away from home for this period of time would induce a terrible crash hence I took bicarb before I left which seems to slightly ward of my crashes. Upon arriving at the cancer centre I had to sign some forms at reception for a few minutes. It was here that I got a glimpse at how my ME stacked up against several cancer patients in terms of the ability to perform certain tasks. After a couple of minutes on my feet, I had to sit down. Meanwhile, several sprightly cancer patient who looked in their 80s or 90s were able to stand.
I was given Hydrocortisone, Phenergan and Panadol prior to the infusion. Rituximab is a heavy duty drug and these 3 drugs are aimed at lessening the side effects and improving the tolerability of Rituximab (never before had I taken drugs to prepare for another drug). The infusion starts at a deliberately measured rate to mitigate the chance of side effects. Watching the Rituximab drip into the infusion apparatus was almost hypnotic as it created miniature ripples.
I took regular bathroom trips and it was on one of these trips two hours into the infusion that I caught a glimpse of myself in the mirror. My neck and sides of face had begun to develop a rash. I nonchalantly informed a nurse of the rash, after considering not mentioning it. She examined the rest of my skin and across 75% of my body was a bright red rash that would best blend in amongst a Google image search of “bad rash.” The snails-paced world of the cancer infusion centre was sent into overdrive. I had around 15 nurses swarm around me, phone calls to doctors were made and I was the centre attraction of a grotesque show of sorts.
At this stage the infusion was only 10% complete and my thoughts flickered between “what a waste of money”, “I was really hoping Rituximab was going to cure my ME and that hope is fading” and “I hope this rash isn’t foreshadowing a nasty reaction or death.” After much commotion and discussion I was pumped full of more Hydrocortisone and Phenergan. I pleaded for the rash to go in order for me to continue the infusion. The rash faded and surprisingly I was allowed to continue the Rituximab infusion albeit at a slower rate than before. I overheard a nurse murmur “I think we’ll be here until midnight.”
I tolerated the rest of the infusion and after 8 hours had completed the 1000mg. Upon returning home I experienced shortness of breath which continued the next day before disappearing. Two weeks after the first infusion I returned to the cancer centre for my second and last dose of 1000mg of Rituximab. On this occasion I didn’t develop a rash although I did experience shortness of breath again. During the following few weeks I noticed a persistent tenderness on my arm, separate from the infusion sites and an increase in bowel movements.
The smaller Rituximab studies on ME patients presented remarkable results and the entire ME community had clung on buoyantly for the larger phase III trial. Two weeks after my second infusion, I logged on to the Phoenix Rising forums and read the clipped headline “Rituximab Phase III- Negative Result.” The timing of this was particularly cruel for me. If I had found this result out a couple of weeks earlier I wouldn’t have pursued this course of treatment. I felt like I was now waiting for Godot. It was expected the study would be revealed at some point deep into 2018. I still tried to cling to a modicum of hope.
Around 3 weeks after the infusion I started to develop a strange, new type of fatigue that was analogous to crashing despite not having done anything. This occurred seemingly at random around 2 days a week and resulted in me having to lie in bed unable to talk or move any great deal. I would toss my Adelaide Crows scarf outside my door as a sign to my family to not disturb me. Fatigue is a noted side effect of Rituximab, something I’m all too used to. The goalposts had now shifted. I had gone from yearning for an ME improvement from the Rituximab to now wishing that it didn’t make my ME worse. The new, extra type of fatigue lasted intermittently until 4 months after the infusion. At this time it stopped and it hasn’t re-emerged since.
Four months after the infusion I began to experience a spate of neurological symptoms. I developed a tremor in my hands and legs that is omnipresent. I also acquired another type of tremor; perhaps known as a postural tremor. If I raise my legs, bend my knees, raise my head and even smile then the muscle I am using begins to shake; in the case of my legs, quite violently. The symptom of mouth quivering every time I smile seems almost emblematic of my entire Rituximab experience.
I have also developed vision problems- a sensitivity to certain types of light. I’ve been plagued by hypnic jerks: sudden bodily shakes that occur when I’m falling asleep. I have begun to feel slightly wobbly on my feet- not severe enough for others around me to notice but a definitive symptom all the same. Whilst lying in bed, I’ve also experienced regular burning hands and red palms in tandem with a strong pulse. The former symptom is perhaps erythromelalgia whilst the later symptom occurs on different parts of my body. As a collective, most of my new symptoms seem to wax and wane in intensity. For a fortnight I might not notice them as much and for the next month they may return with a vengeance.
It would be foolish to definitively link this new glut of symptoms to the Rituximab. I had a brain MRI performed which was normal and fortunately for me ruled out MS and PML (a rare disease that is sometimes caused by Rituximab). I was fast-tracked to see a neurologist and bypassed the long waiting list to see one within 2 days which in itself was slightly alarming. The neurologist seemed uncertain as to what was causing my symptoms. My specialist physician is on the same page as me regarding the most likely root cause of the plethora of my new neurological symptoms. He thinks the Rituximab either directly caused my symptoms or set off some other process in my body that has resulted in the aforementioned neurological signs. The timing seems to fit. Rituximab isn’t renowned for causing neurological signs such as tremor, some 4 months after treatment (on occasions it causes them directly after infusion) yet there doesn’t seem to be a better explanation at the moment (although I am exploring an enterovirus reactivation hypothesis). I am reluctant to paint the new symptoms as ME- for starters I have only developed a couple of new ME symptoms in the past decade.
Overall, as I write this 9 months after my infusions, I can tolerate the new symptoms yet in a week’s time they may again increase in intensity. The Rituximab saga certainly caused some turbulence in my life and it had prevented me from trying other treatments. I have just started to dabble in some more treatments for my ME. There were certain moments across this Rituximab journey that are etched in my mind as pivotal points. For me the greatest lesson has been to not necessarily treat events as intrinsically good or bad. The ripples cast from each event spread in unlikely, unforeseen ways. In some ironic sense, learning this lesson has been the one good ripple from my Rituximab experience.
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thanks so much for this. sorry that you had to suffer all these side effects. i also have CFS and have considered trying to get on rituxim, but will stay away now.
@Walter
Thanks for the comment. I think it’s very wise for ME/CFS patients to stay away from Rituximab, especially as a result of the unexpectedly underwhelming phase III study. Hopefully some other treatments will emerge soon that will help us!