My friend has given me permission to report her early success with cyclophosphamide. The below is my summary based on her regular updates. She has checked and approved it.
She is 36 and has had ME caused by covid since early in the pandemic. She was of moderate severity with typically 5000 steps per day. Brainfog and PEM were the symptoms that caused her the most frustration. She was (with difficulty) able to work part time remotely. She has tried many treatments since getting ill and had no response to most of them which makes it less likely she is now experiencing a placebo effect.
Before cyclophosphamide the drugs she best responded to were steroids and rapamycin in particular with regards to reduction in brainfog and prevention of PEM. This supports the idea that she is in the autoimmune subset. ME patients who respond to rapamycin are rare.
In December 2023 she did two doses of daratumumab. It gave her the expected side effects, but failed to reduce her Igg. She could not afford more daratumumab so switched to bortezomib between January and February. Bortezomib caused serious constipation and grade two neuropathy.
Although she did not notice any symptom improvement before starting cyclophosphamide then it is possible that daratumumab and bortezomib did contribute to her subsequent improvement through cumulative immunosuppression. It is well documented in autoimmune diseases that some patients will respond much better to drug A after they have taken drug B. However cyclophosphamide is likely responsible for most of the improvement that she is now experiencing.
She did five doses of IV cyclophosphamide dosed at 800mg/m2 spaced three weeks apart. The first dose was in March. This is higher and more frequent than the Norwegian protocol which starts at 600mg/m2 followed by five monthly doses of 700mg/m2. Since she did five doses not six, the cumulative dose is similar.
She felt VERY ill for several days after each dose (worse than me) and found the whole treatment period emotionally very difficult. This may have been partly caused by neuro chemical side effects of the drug, as well as the unpleasant physical side effects and the stress of self administering such a serious drug.
She experienced hair thinning and mild bladder irritation. She is still experiencing neurological foot pain, but is confident that this will pass.
She noticed a definite improvement in her symptoms after the second dose and has steadily continued to improve since then. She introduced rituximab after the third dose, but since she was already responding to cyclophosphamide it is impossible to know what if any role that is playing in her continued improvement.
Five months after her first dose she has improved from moderate to mild severity. She no longer takes rapamycin for brainfog as she says that is now 90% better and is able to do much more work with much less effort. She is able to spend much longer out of the house and do light workouts without triggering PEM. POTs is the symptom that is responding the least. It is well documented that POTs is a stubborn symptom that in some patients stays after other symptoms have gone.
Compared to most of the study participants I would say she is a very strong responder. This could partly be due to the increased dose and higher frequency of dosing. Based on the study data it is likely she will continue to improve over the coming months although no-one can predict what will happen in the long term.
