Medicating my children is an uncomfortable feeling to begin with. Add to that that I'm forced to purchase Calcort/Deflazacort outside of my home country (US) because it's not approved here and I'm even more nervous. I've been buying Shire Pharma 6 mg pills...first from Masters Marketing and more recently from canadadrugs.com. My last two orders from canadadrugs were incorrectly filled...their site says Shire Pharma is the manufacturer, but they've sent sanofi aventis product instead. Last time they replaced the sanofi aventis product with Shire Pharma. This time they would like me to talk to a pharmacist and then if I choose they will still replace with Shire Pharma, but I do not know if the product replacement will arrive before my son's current supply runs out. I'm irritated that they've twice sent a different product than advertised (despite my notes on the order specifying Shire Pharma brand) and I'm afraid to leave my current comfort zone and switch manufacturers. I don't know for certain that Calcort is doing anything to begin with (he's only 7, and only takes 6mg per day!) and I don't want to switch if we're going to lose effectiveness or gain side effects...

What manufacturer do you use? Have you changed from one manufacturer to another? Have you seen a difference in effects and/or side effects?

I hate having to feel so scared about doing the right thing for my little boy. I wish I could see a clear answer...or that DMD would just LEAVE HIM ALONE!! :(

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Melanie,
We've always ordered ours from Masters Marketing. It's been a while now, but we did switch brands when the first was no longer being made. I haven't seen any difference at all since the switch.

I was curious though. Why is your son only on 6mg/day? My son is 7 and is on 15mg/day. Has been since we started steroids 4 years ago. His weight is now 45lbs. He could go up in dosage (.9mg/kg), but we're holding at 15 for now.
My son's doctor initially put him on 12mg/day, but was concerned about some blood test results that resolved when we backed him off to 6mg. We discussed the dosage again this spring (my son has grown noticably, and I was concerned that we might be falling way off the low end of the chart dosage-wise) and the doctor still felt that Aaron is seeing benefits from the dosage he's on with minimal side effects and didn't feel that we should start increasing again unless the benefits seem to be waning.

I don't feel like I'll ever know for SURE that we've made the right choice, so I'm praying that our doctor's guidance is the best choice for us. :( It feels like such a crap shoot.
Melanie,

We also started with Shire 6 mg tablets from Masters Marketing, but also started receiving the sanofi aventis product instead. We decided to go ahead and try the sanofi aventis product and so far have not seen any difference either with our 7 year old son.

I agree that it is really hard to make decisions for our precious children, when so much is unknown. I just know we are hoping for the best and doing the best we can with what we have to work with. Best wishes to you and your family.
I thought something like that might be the case, but I'm still nosey. LOL!!

Melanie said:
My son's doctor initially put him on 12mg/day, but was concerned about some blood test results that resolved when we backed him off to 6mg. We discussed the dosage again this spring (my son has grown noticably, and I was concerned that we might be falling way off the low end of the chart dosage-wise) and the doctor still felt that Aaron is seeing benefits from the dosage he's on with minimal side effects and didn't feel that we should start increasing again unless the benefits seem to be waning.

I don't feel like I'll ever know for SURE that we've made the right choice, so I'm praying that our doctor's guidance is the best choice for us. :( It feels like such a crap shoot.
I encourage nosy-ness -- it's the only way to get information!! :)
Melanie

I order from Masters and the same thing happened a few months ago and I noticed a big difference in my child. I talked to Julie and she stated that Sanofi is now the manufacture and shire is no longer available...however, when I was at conference the man from Masters was there the first day, I talked to him and he stated Shire is still available.. I called back and someone else said yes...then I called back again and talked to Julie and she said no....I'm talking about the 6mg pills as well. My son is on 18 mg. I noticed a difffrence in behavior with the change. He is more agressive with the sanofi brand.
I reported to the manufacturer as well because I was so confused abouot it at first...I just switched from Sanofi to sandoz to see if they turn him around but I really likedshire for my son.
Darcy...
Melanie, I use deflazacort and I get it from MastersUK.here is the web page http://www.masters-uk.com/uk/index.php they are in the UK but do have a USA phone number to call if you have questions. I have been using them for 2yrs with no problems at all. I am surprised that is only taking 6mg a day. My son is 6 and 55lbs and takes 21mg. I would not chance to prednisone, too many side effects.

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