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When Jill was 27, she woke up with tingling and numbness in her left hand that eventually spread to half her body.
The Calgary woman, who did not want her last name used for fear it could hinder her future employment, went for tests and was told there was a possibility she would develop multiple sclerosis, a disease of the central nervous system.
Jill was enrolled two months later in a clinical trial led by University of Calgary researchers studying whether minocycline, a common acne drug, could be a more affordable treatment for those in the early stages of MS.
"I was happy in this case to help in any way I could," said Jill, now 34. "It was an easy decision for me personally."
The results of the Phase 3 trial, to be published in the New England Journal of Medicine on Thursday, showed that minocycline, an antibiotic, works just as well as the current available MS therapies.
But instead of costing more than $20,000 a year in Canada, minocycline would have an annual price tag of just $600.
Making treatment more readily accessible would be a major benefit for those early on in the disease, said Wee Yong, one of the study's authors.
"We do know that time matters in MS. Time is brain loss in MS," said Yong, a University of Calgary neuroscientist who has been studying minocycline as a potential MS treatment for nearly two decades.
The current treatment for MS involves injections that require frequent blood monitoring.
Minocycline can be taken orally and the most common side effects are initial dizziness and digestive upset. It's been on the market for decades and does not need further Health Canada approval to be used as an off-label drug for MS, the researchers say.
For the Phase 3 trial, the researchers studied 142 people across Canada between 18 and 60 who had recently experienced symptoms for the first time, but had not been formally diagnosed with multiple sclerosis.
About two-thirds of people who experience MS-like symptoms once — called a clinically isolated syndrome — go on to be diagnosed with the chronic disease within six months, said lead researcher and University of Calgary neurologist Luanne Metz.
In the clinical trial, 61 per cent of participants developed full-blown MS in that time frame, as predicted. But that figure dropped to 33 per cent in those given minocycline.
"Our target was to decrease the proportion that get multiple sclerosis," said Metz.
"And that degree of benefit is very similar to ... the other therapies that are already approved for treating clinically isolated syndrome."
The Phase 3 trial was funded with more than $4 million from the Multiple Sclerosis Society of Canada and its affiliated scientific research foundation.
Angelica Asis, the society's acting director of research, said they would welcome larger minocycline trials in the future.
"More research is needed to really establish how long does the effect last or does it apply to more people with MS?" she said.
"What about people who are later in their disease versus a very early stage?"
Aside from a little stiffness in her hand, Jill said she is symptom-free and has not been diagnosed with full-fledged MS.
"I don't even actually notice it until someone asks me if I'm feeling it," she said.
She took minocycline for six and a half years, but recently decided to stop for a while to give her body a break from the antibiotic. She expects she'll go back on at some point.
"I feel perfectly healthy now."
Comments
We should all be concerned that this CNS disease of unknown cause is so prevalent in Canada.
Support patient care and research into MS with your contribution to your local MS Society chapter.
https://mssociety.donorportal.ca/Donation/DonationDetails.aspx?L=en-CA&…
Learn more about it:
http://www.cbc.ca/news/technology/the-mystery-of-ms-and-its-prevalence-…
"MS strikes 133 out of every 100,000 people in Canada, the fifth highest rate among countries surveyed between 2004 and 2005, ... and, ...Canadian women are more than twice as likely to get multiple sclerosis than men."
http://www.macleans.ca/society/health/could-canada-cause-multiple-scler…
Understand Regional Variations
https://www.ncbi.nlm.nih.gov/pubmed/16193887 (Mult Scler. 2005 Oct;11(5):516-9.)
"Results suggest that Canadian MS prevalence differs by region. If validated, these regional differences may facilitate investigation of environmental influences."
http://www.lfpress.com/2013/12/30/while-a-worldwide-survey-finds-multip…