Trial MS medicine for SPMS changed my life: patient

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Trial MS medicine for SPMS changed my life: patient

Postby MSUK » Tue Nov 05, 2013 12:58 am

Not long ago, Stephen Mudgway was in terrible pain and slept most of the day, his quality of life ruined by a dreadful form of multiple sclerosis (MS).

Now, thanks to an experimental new treatment developed in New Zealand, he has energy and is able to get out and about.

"I enjoy life," he said.

Just a few months ago, Mr Mudgway, who has secondary progressive MS, was so fatigued he slept more than 20 hours a day and took six different medicines, including 40mg of codeine on some days.

Now, apart from a weekly dose of the treatment, he pops only one pill a day....... Read More - http://www.ms-uk.org/MIS416
MS-UK - http://www.ms-uk.org/
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Re: Trial MS medicine for SPMS changed my life: patient

Postby CureOrBust » Tue Nov 05, 2013 4:35 am

He and most the other participants experienced rapid improvements to their quality of life.
But these ended when the trial stopped, says Mr Mudgway.
"I went back to how I was. Even worse," he said.
....
"It gives the body an opportunity to rebalance and repair," said Dr Gillian Webster, who heads the development team.
"There are two layers of benefit. One is fairly immediate, which improves the patient's quality of life. The acute pain goes, the vision improves, muscle strength improves.
"There is also a definite delay in progression."
The "rebound effect" is not something I would be looking forward to. And also, the quote that it gives the body "an opportunity to rebalance and repair" in my mind does not match up to the fact there is a rebound when you stop. So I personally am taking this treatment with big grain of salt.
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Re: Trial MS medicine for SPMS changed my life: patient

Postby HarryZ » Tue Nov 05, 2013 6:06 am

Hmmm...pretty sketchy information about the initial small trial...like how many patients, how long were they on the drug...was there a difference in reaction among the patient group...was it double blinded....etc etc.

Will be interesting to see what kind of results they get when the next trial involving 100 patients takes place.

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Re: Trial MS medicine for SPMS changed my life: patient

Postby CureOrBust » Wed Nov 06, 2013 2:43 am

I personally think their results will be affected more by their spin Doctors than their medical ones.
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Re: Trial MS medicine for SPMS changed my life: patient

Postby cheerleader » Wed Nov 06, 2013 12:17 pm

CureOrBust wrote:I personally think their results will be affected more by their spin Doctors than their medical ones.

agreed--benefits sound pretty close to placebo.
While the study was not designed to look at the efficacy of MIS416, results were encouraging. In the small study group of 11 people, 5 subjects showed at least 30% improvement in the physical component of a functional scale (the short form health survey) and 7 subjects showed at least 20% improvement in total score on the Multiple Sclerosis Functional Composite (MSFC) scale. Some participants also showed improvement in fatigue measures and expanded disability severity scores (EDSS). Common side effects of MIS416 included fever, headache, fatigue and muscle pain and stiffness.

http://www.msra.org.au/research-new-tre ... ed-ectrims
Husband dx RRMS 3/07
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