We finally got a prescription for deflazacort and are planning to switch our son from prednisone as soon as it arrives.  Curious though.  Unfortunately, we have had to educate our neurologist about why we want to switch, but he's willing.  He's just not familiar with the protocol.  His nurse gave us instructions to give our son one pill the first week, and increase the next week.  It seems like this would be appropriate if he was just beginning steroids...  Couldn't he begin on the full dose, since he's already been taking prednisone for so long?  I know you are not all doctors, but I'd like to know what your experience has been.
Thanks!

Views: 2693

Reply to This

Replies to This Discussion

Hi Patty - The experience I had was that it should be about the same dose. Nicholas is on Defalacort (takes 30 mg now) and weighs 100 lbs. One time our Deflaz order got stopped in Customs and we were going to run out - I got a prescription for Prednisone and it was equal to the dose of Deflaz. I think Dr. Biggar said it was ok to switch back and forth. You could send him an email and ask him. Dr. Biggar spoke at the PPMD Conference - I always check with him on steriod questions regarding Nicholas's dose and things like that. His email is: dbiggar@bloorview.ca. We order the Deflazart from MastersMarketing in the U.K. Hope you guys are doing well!!!
Hey Patty, Different circumstance, but we got stuck in Cincy once w/o enough deflaz. Dr. Wong gave us a script for Prednisone at the conversion that would be equivalent to our Deflazacort dose. We switched for 2 days and then went right back to Deflazacort. So, basically my experience is the same as Kim's. I wouldn't lower his dose at all....Good luck!
I ditto everyone else. We have switched back and forth before as well with no problems.
Hi,

I think the "corticosteroid equivalence" listed in most of the literature comparing the two steroids is 0.75mg Prednisilone = 0.9mg Deflazacort if that helps. In other words you have to take a little bit more Deflazacort to get an equivalent effect. My son started Deflazacort in November and for his weight (17 kgs) he takes 15mg Deflazacort per day. If he had been on prednisilone he would have taken 12mg per day.

I trawled through loads of literature because - here in the U.K. - most kids are offered Prednisilone as standard. I decided on balance that Deflazacort was the better option - and it is available on prescription here (but, just as in the U.S., it's a matter of flagging up to the professionals that there are other options when it comes to steroids).

Fortunately we have a good consultant who is open to alternative ideas, and was prepared to listen and try something different.
Hi Patty,

MastersMarketing likes to have a letter from the doctor saying why it is necessary and that it isn't available in the US. They include it with the deflaz shipment - that way if it is stopped in Customs they might let it through. Mine was confiscated twice, but it hasn't happened in a long time. I heard a couple years ago they were going a little overboard trying to enforce that law about buying drugs out of the country (which I don't think applies in our cases). I think I have a sample letter from Dr. Wong somewhere (I'll look for it if you want it). Nicholas's neuro just typed something up on Kaiser letterhead and faxed it to me. My contact at Masters is Julie Emms - I've been dealing with her over five years. Julie just keeps my info on file and I send her an email when I need to order more. Her email is julie.emms@masters-uk.com. I've never had any problems with them or her. I'm glad Brady's neuro turned out to be good - it's always a gamble with Kaiser!

Patty Sherman said:
I know what else I wanted to ask. Is there a letter somewhere that you're supposed to send to Masters Marketing that they attach to help it get through customs? Why does that sound familiar to me?
I can send you our scanned version, but it needs to be signed by the same doc. email me your email address: liisau@gmail.com

Patty Sherman said:
I know what else I wanted to ask. Is there a letter somewhere that you're supposed to send to Masters Marketing that they attach to help it get through customs? Why does that sound familiar to me?

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service