Masters said that my order shipped on March 16 and I am still waiting on it.  Do I need to start contacting people?  Seems like this is longer than usual.  What have others waited for their medicine?

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Boy, I don't exactically remember how long it took but it seemed quite awhile. Most likely was aprox 3ish weeks. I believe the UK post doesn't always work well with strikes occasionally and all. Now I'm getting worried since our next order should go in soon. Hope yours gets here!!
When I ordered ours it only took like 2 weeks max to get it. Not long at all once the paperwork for the prescription and all was done.
I am hoping it gets here soon. If customs intercepts it and holds it do they contact the person it is being delivered to?
You will get a letter in the mail from the agent that has intercepted it. We have had that pleasure once, Dr. James Bona with the FDA orphan drug department had it released for us in about 15 minutes, once we knew he was the guy to contact. That was a couple years ago. Since then he has now gotten together with PPMD. If you do a search on the main PPMD site it will bring up a document on "Getting Deflazacort" and the last paragraph states:

Need more help?

If after reviewing Dr. Bona’s recommendations, you still have trouble obtaining Deflazacort, contact Ryan ( or Will ( at Parent Project Muscular Dystrophy. We will help connect you directly to Dr. Bona or someone else at the FDA to obtain this vital medication

We have Dr. Bona's information around here someplace I believe, but it looks like he would prefer you go through Ryan or Will these days. Once customs releases your meds it take about 2 days to get them to your mailbox.
Good Luck!

Kristi Koop said:
I am hoping it gets here soon. If customs intercepts it and holds it do they contact the person it is being delivered to?
Thanks for the input everyone!
We did our first order last month, and we had it in our hands one week after they had the prescription and payment.
Got the medicine yesterday! Thanks again to everyone.
I placed my order on March 28, and am still waiting. I did receive two emails from them one on March 30 and one on April 15 both stating that my order had been shipped. I think they are having a problem because it has never taken this long. I do have an email sent and a phone call placed. You can call them but remember they are on England time. The number is 1-800-969-1152. You can leave a message and they will get back to you. I have talked with them in the past and they are very nice. Oops, I just read further down. Glad you got it. Keep this number though in case you have any more trouble. Order at least three weeks before you run out, just in case.

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