I would like to find out if anyone living in Australia has been able to change from Prednisone to Deflazacort. I do believe that we can get it here now but at a cost. Has anyone got any information for me on the above? When I do see my Neurologist again I will find out more.

My son has been on Prednisone for 19 months now and has gained weight, I can also see that his feet have swollen up from the steroids too.

I would also like to find out more about nutrition and good eating habits for our boys.

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Hi Jo-Anne,

James was (and still is for that matter) a patient at Sydney's Westmead Children's Hospital, under the guidance of Kristy Jones (his doctor) and Kristy Rose (the PT and trials coordinator). He switched to Deflazacort just after he was diagnosed, after two months on Prednisone. He switched as part of a trial, which has now ceased. We can still order our deflazacort from them, but of course now we have to pay for it. It the general scheme of things, it's not too expensive (can't think of the amount of the top of my head). Maybe you can try getting in touch with them through your son's doctor?

By the way, James gained weight on Prednisone, 5kg in two months!! Since he has been on Deflazacort, he has still gained weight but at a much much slower pace. He was also very underweight to begin with.

Hi Sharon

Happy New Year to you, hope your move was a good one and that you are settled now. Thank you for letting me know. I will speak to the Neurologist when I see her again, not sure if the GP can change it or not. Kevin has gained weight, but is in the right range so they say, but it is too much for my liking, he is swelling up at the moment. I also think it is the weather, we all swell up in the heat.

Wishing you the best for 2009 and many breakthroughs with our boys.


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