From Living With Chronic Fatigue Syndrome.
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: 1000 mg 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.
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