Concerns about off-label treatment and lack of informed consent

I was diagnosed with fibromyalgia 12 years ago and consulted Dr Dessein during the early stages of my treatment journey. At the time, I was prescribed Plasmoquine/chloroquine, both orally and as injections, as well as a sleeping medication that I later learned was given at an unusually high dose.

After seeking further medical advice and reviewing current fibromyalgia guidelines, I discovered that antimalarial medications such as Plasmoquine are off-label, not evidence-based, and not part of any recognised fibromyalgia treatment protocols. They also carry important risks, including potential eye and heart complications.

I was not informed that this was an off-label treatment, not advised of the risks, and not asked for consent acknowledging this — which is concerning given HPCSA guidance on informed consent. The injections themselves were extremely painful and, based on available evidence, appear unnecessary for fibromyalgia.

I have since been seen by other rheumatology specialists, slowly weaned off all the medications prescribed at that time, and have been stable, active, and essentially pain-free for the past 10 years.

I am sharing this experience because another person I know is currently receiving the same treatment without being made aware that it is off-label. My intention is to encourage transparency and informed decision-making for patients receiving non-standard therapies.