Has anyone has been waiting a long time for their Deflazacort shipment to arrive?  Our order shipped on Dec. 3 but we have not received it!  I was getting nervous and ended up calling Julie at Masters Marketing this morning.  She assured me that nothing has been detained by FDA and that the delay is due to a mail issue (holidays, bad weather, etc..) Has this happened to anyone before where they were about to run out of Deflazacort????

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We have been discussing this on Facebook.  Our order shipped on Nov 23rd and it showed up yesterday.  There were issues at the airports as far as we know.  All of the FDA offices were checked by Dr. James Bona with the FDA orphan Drug office and they are not holding up any Deflazacort shipments, so it's just a waiting game on delivery.  We dropped our son's dose down 3mg, I know some families have gone to every other day dosing and some switched to prednisone.  If you have someone that can loan you some deflazacort until yours arrives you can do that also.  It was very hard waiting, I thought I was going to go crazy waiting this time around.  I wish you good luck.  There was/are about 30 of us that had this affect our shipments

Thank you so much for your quick reply!!!!  I wish I had known earlier and I would have cut back as well!  We are down to just a few tablets left.  I'm now thinking we may not get it until after the holidays :(  Ben has only been on steroids now for 6 mo. so this is all pretty new to us.  From now on I will be ordering much much earlier.  If you don't mind me asking-where can I find this discussion on fb? Thanks again!

Gee, I'm glad we can just get ours at the hospital pharmacy.

 

Yes. Very important you ask your physician for a backup RX of prednisone to maintain your son's status until the deflazacort arrives. My also wish to put eralier ordering on your calendar - spoken from one who has unfortunately had the same situation.

Jessica,

If you ever need some pills on loan - give me a call or email me.  Nicolas takes 18 mg, so I get the 6mg, and the 30mg pills.  I should have mentioned to you before that we always order early.  The first couple times when we were low, was very scary and I had to get Nicolas prednisone for a couple days which Dr. Wong prescribed.

Talk to you soon and I hope you, and your family have a very Merry Christmas!!

Michelle

Jessica, if you friend me on Facebook you should be able to see some of the discussion going on.  Once you add me I can recommend many other DMD mom's for you to add as friends as well.  There is quite a large group of us over there that share information. 

Did you get it yet?  I can overnight a pack from OR.  Let me know.

 

Christine Good

Thank you everyone for advice!!!  I emailed Dr. Wong yesterday after I posted and she called in a script for Prednisone to our local pharmacy.  Hopefully our shipment will arrive in the next few days so we won't have to use it however I am relieved to know we have a backup plan.   Whew!  Think I'll be ordering much earlier from now on!  Michelle and Christine-you both are so sweet, thank you a ton for your offers!!!!!  What a year it has been! 
Our shipment was shipped on the 15th of December and we havent recd it yet either.  I got an RX for prednisone from our Dr.  Does anyone know how long it is safe to be on prednisone before switching back?  Would anyone be interested in exchanging phone #'s so if we run low on Deflazacort we can help each other out.  Thanks
I ordered on 12/17 and received it on 1/3.  Apparently, I was lucky this time.  I normally order it when I have about a 30 day supply left, but you can bet that my next order will be sent much earlier, just in case!

   We placed our order for Deflazacort with Master U.K. on November 29 the prescription was verified as sent and recieved. Our son has been put on Prednisone because we never recieved our order . We contacted our doctors office (who by the way places the order for us) and they contacted U. S Customs  and told us to do the same , we were thinking the shipment had been seized by customs and that was the problem ... When we were finalllllllyyyyyy able to get in touch with Masters a few days ago they said they hadn't sent our order and we had to place the order again . It has been a very frustrating wait for us and our son.  The change to prednisone has been hard on him the side effects seem to be much worse. At this point we are still waiting .... We thought that we were the only ones having this problem until we read this discussion a few moments ago!

 We are interested in getting in contact with others and forming a network to help each other during times when shipments are delayed to prevent someone from running out and having to change their childs meds. Anyone intersted feel free to send us a freind request and we can exchange contact information!!

Is anyone filling their prescriptions from anyplace other than Master's?

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