My son's name is Adam and we live in Canada. He is going to be 33 next month and has been taking Deflazacort for over 25 yrs now. Just recently, we were told that they are unable to get the drug anymore and we don't even know why. I was wondering if it at all possible to get it here as he is going to be forced to go on Prednisone. He tried Prednisone on 2 occasions and was not able to tolerate it. He does not feel at all good when he takes it. He feels like if he takes this drug, he will die taking it and the hospital says that if he does not switch to Prednisone, he will die because he can't stop completely with nothing to replace it. Here is a couple of the side effects that effected him the most when he was on it; fast, slow, pounding, or irregular heartbeat or pulse, and shortness of breath. He feet also swelled up which made him really uncomfortable. He said that his feet hurt him. Please if you can help us in any way, it would be greatly appreciated. Thanks.

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Marie -

i think the people at Masters in the UK should be able to help you.  Please e-mail Heather Gamble at Masters; her email is Heather.Gamble@masters-sp.com. Or Nicola Meekham at Masters; her email is nicola.meekham@masters-sp.com.  The phone number for masters is +44 208 327 0900.  Please let me know if this doesn't work ~

Kathi

Can you order it from Masters in the UK?  We're in the US and have been ordering it from them with minimal problems for the last 7 years...

Thanks for all the info. I will try that and let you know if I am able to get it.

Kathi Kinnett said:

Marie -

i think the people at Masters in the UK should be able to help you.  Please e-mail Heather Gamble at Masters; her email is Heather.Gamble@masters-sp.com. Or Nicola Meekham at Masters; her email is nicola.meekham@masters-sp.com.  The phone number for masters is +44 208 327 0900.  Please let me know if this doesn't work ~

Kathi



Keith & Jill VE said:

Can you order it from Masters in the UK?  We're in the US and have been ordering it from them with minimal problems for the last 7 years...

Thank you so much. I will look into this.

I got good service from Universal Drug store, Canada. You can try it also.

Marie, perhaps you have seen on FB page Duchenne Canadian Connection our on-going discussion over the last few days about the deflazacort problem. It appears that the manufacturer has recently changed how often they will ship to the authorized pharmacies, taking 8-12 weeks instead of monthly like before. So it appears that due to this delay, some of the pharmacies have/will run out, but only temporarily (that is my understanding).

Best of luck to all of us!

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