I was amazed this evening to find deflazacort in our mailbox. We just ordered it from Masters Marketing in the UK on the 15th. I expected it to take a lot longer and I was prepared for a hard time getting it through Customs. So I guess we start Bradley on it tomorrow morning.

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Hi Lisa
We plan on starting our son on deflazacort soon. He is taking daily prednisone. We're in the process of converting him over. I am assuming Dr. Leshner will go over with us how to go about doing this. We visit with him on Thursday.
How did you order the deflazacort? Phone? Email? Just curious about the process since we are not too far behind you. How many months supply do they give you? How soon do you need to order more? This is the only part that makes me nervous.....not having the drug in a timely manner for our son.

Thanks,
Tina
Tina,
I ordered it online. I emailed the prescription to them as instructed...you can also fax it. You can order it online or by phone. It was so easy. I ordered 3 months worth. It came in boxes of 10 (30mg tabs). The prescription is for 12 months so I think when we order again the prescription will still be on file. We just took prednisone while we waited for the deflazacort to come. I expected it to take a month to get here.
thanks Lisa

Can you provide me with the number to call? We visit with Dr. Leshner tomorrow so I am anxious to get this ordered, asap.

Appreciate your prompt response.

Tina
Contact Julie Emms at Master's Marketing
Call: 1-800-969-1152
International: 44-845-402-4406
Fax: 1-800-969-1153
julie.emms@masters-uk.com
Maybe they can fax a prescription from the office but be sure to get a copy of it in case you need it for customs. Dr. Wong also wrote a letter explaining the need for the medication in case there are problems with customs.
Lisa

I appreciate this information. I have faxed the prescription to them and expect shipment in about a week's time. This drug will cost me $288.00 every 3 months vs. $35.00 using prednisone. I hope I am doing the right thing by switching. My son has gained a lot of weight in the last year ( he loves to eat) so we are hoping that the very least, we can maintain his weight using deflazacort. Julie was very helpful with answering my questions over the telephone.
Tina
Tina,
What is the dosage for your son? My son is on 30mg daily. I am assuming your son is on a higher dose since ours was around $188 for 3 months.
The prescription is for 18mg daily. Huh, I wonder why we had to pay an extra $100?
I ordered 9 boxes with ten 30mg tabs in each box. Each box was 18.85, totaling 169.65. Shipping was 15.50. Actually the total with shipping came to 185.15. It may depend on the number of tabs it takes to make your 18mg dose.

It seems you could buy the 30mg tabs and split them in half to get a 17.5 dose; provided his doctor feels it is close enough to 18mg. Did you have to order a lot of 10mg tabs?
Tina,
Looking at the tabs available at the site, I can understand why your son's medication was so high. It comes in 6mg tabs with 60 tabs in a box. You would need 270 6mg tabs to get through three 30 day months. They would have to send 5 boxes which would total 300 tabs; this would give you an additional 10 days of deflazacort. Each of the 60 tab boxes costs 54.54. 5 boxes would be 272.70 plus shipping. So this explains why you are having to pay so much more.

Here's the link to that price list.
http://www.masters-uk.com/medicines/search.php?mode=search&page=1
Hello:
We started our son of Deflazacort a month ago. Initially, in June, we started with Prednisone which made our son super hyper and always starving. He gained nearly four pounds in a month while on Prednisone. We ordered the Deflazacort from Canadadrugs.com and they were wonderful and even have an auto ship program. Anyway, we started the Deflazacort and with in a week our son had come back down to earth from the land of hyperactivity. Even his appetite dropped back to normal levels. He tolerated this extremely well.
But the big question is - how long does this steroid last at holding off the progression of this disease? One year, five years, ten years???
My son is about to turn none this November and was just diagnosed last June. Hardly any symptoms at all were noticed.
My son has been on deflazacort for about 3 years now. He initially started with Prednisilone, then Prednisone but gained weight extremely fast. Now his weight has mellowed but he is still overweight for his height. He takes 42 mg. per day so if you can only buy deflazacort in the 6 mg dosage, it would cost me a fortune. I've been ordering from getcanadiandrugs.com for the past 9 months and 2 out of 3 times the pills were confiscated by Customs. I checked into canadadrugs.com and they won't allow me to order enough 6 mg. for a 3 month supply. My son needs 1-30mg and 2-6mg per day.
We were very fortunate not to have any problems with the first delivery. I just ordered the second 3 months worth a month early. I hope it goes as smoothly as before. With each shipment costing $185, I would be beside myself if his medication got confiscated! Dr. Wong has created a special letter asking them not to confiscated the medication, if customs ever questions it. I hope if ever have to use it, things will be all well.

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