While I do not have this particular autoimmune disorder, I know from personal experience how maddening it is to be dismissed by a physician when you have something that's hard to pinpoint. So I thought I'd share:
"I WAS completely revitalised," says Karen. "Suddenly, I could be sociable again.
"Karen* experienced this relief from chronic fatigue syndrome while taking a drug usually used to treat the blood cancer lymphoma or rheumatoid arthritis. She was one of 18 people with CFS who reported improvements after taking rituximab as part of a small trial in Bergen, Norway. The results suggest new treatments for the condition, which can leave people exhausted and housebound.
Finding a cause for CFS has been difficult. Four years ago, claims that a mouse virus was to blame proved to be unfounded, and some have suggested the disease is psychosomatic.The latest study implicates the immune system, at least in some cases. Rituximab wipes out most of the body's B-cells, which are the white blood cells that make antibodies.
Øystein Fluge and Olav Mella of the Haukeland University Hospital in Bergen noticed its effect on CFS symptoms in 2004, when they used the drug to treat lymphoma in a person who happened to also have CFS. Several months later, their CFS symptoms had disappeared. A small, one-year trial in people with CFS in 2011 found that two-thirds of those who received rituximab experienced relief, compared with none of the control group.
The most recent study, involving 29 people with CFS, shows that repeated rituximab infusions can keep symptoms at bay for years (PLoS One, DOI: 10.1371/journal.pone.0129898). "Eleven of the 18 responders were still in remission three years after beginning the treatment, and some have now had no symptoms for five years," says Fluge. "Suddenly, their limbs started to work again and their hands were no longer cold or sweaty."
The researchers think antibodies are to blame in at least a proportion of people with CFS. Relief started four to six months after the first dose of rituximab, approximately the time it would take for existing antibodies to be cleared from the body. Participants relapsed after about a year – roughly how long B-cells take to regrow and start making new antibodies. "We think the pattern of responses and relapses involves some mechanism with these antibodies," says Fluge.