We received the results from the clinic and received confirmation our son has duchenne. He has a mutation deletion in exon 8 through 16. Exon 7 & 17 are present. I'm not sure exactly what that means but was told they don't currently have a trial out there yet for his mutation.
She wants him to start Prednisone but I'm not to comfortable with that from all the issues other kids have had with it. So I told her I want to try Deflazacort. She said a drug store across the border in Canada carries it but when I called them the person I talked to never heard of it and couldn't find it in her system.
I called The Canadian Drug Store in Canada my dad uses and they didn't have it in their system either. Can someone tell me where they order it through?
And if anyone else is familiar with the mutation my son has.
Just to be clear. I do not get my son's deflazacort from NorthWest Pharmacy. I just came across the review so I posted it. We have always used Masters and have had no problems. Julie Emms is always available to answer any questions. Got to meet her at the PPMD conference last month in Chicago. Dawn hopefully you will have no problems with NorthWest but if you do you can always contact Masters at the link Keith provided in his response or contact Julie directly at 800-969 1152. She will get back to you.
Andrea Cleary said:
Bernardo, "most commonly prescribed" doesn't mean "approved", which I admit is weird. I think the gov't orders it from the U.K. When I looked into helping a friend from Vietnam get Deflazacort from NorthWest Pharmacy (Janine posted the link above), the rep that I finally got to speak to told me they get it from India.
Thank you everyone for your comments. I actually went forward with ordering Deflazacort from Northwest Pharamacy. I did receive the medication today shipped from SwissPost but show it was manufactured by Lupin. Which is an India research company based in Mumbai and the parent company of the U.S.owned subsidary Lupin Pharmaceuticals. So, I can't say where these pills were manufactured but can say they were shipped from Mauritius with SwissPost.
I went through and read Northwest Pharamacy reviews and saw that some of the reviews that were not recommending them were from several years ago. I did read other reviews that showed they have improved in the past few years. I did call the 1-800 number and spoke to someone and they were very thorough and friendly to me. I had no issues placing the order and it was shipped fairly quickly after my order was placed. It did take over 10 days for the order to come in but was already prepared for that. I will be sure to place the refill order a month in advance. We received 300 - 6 mg pills and my son has been instructed to take 3.5 a day.
I am going to wait on having him starting them until after we have a consultation appointment with the Mott Children's hospital in Ann Arbor this Friday. I just want to see if they agree with our current treatment plan.
He went yesterday for an Echo and that came back showing his heart is not effected at this time and the cardiologist said we wouldn't need to come back for another year. He also had the pulmunary function test done which I won't find out how that went until next week. He really did struggle with that one and all the instructions so I'm interested to see what his baseline shows.
Be careful on the shipping charges on the deflazacort. The first vendor we went through charged us almost 50% of the cost of the deflazacort (might have been more) - it was insane. Masters Marketing (& Julie Emms) has a pretty darn good reputation through this website. I actually talked to Julie on the phone the other day - so customer service is key to them.