My Experience With Rituximab For ME



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.


To read the rest of this story, click on the link below:


Link to ME Research story

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