We are in the process of deciding if and when to start steroids. I need information, studies, oppinions etc. that will inform us on the differences between the two drugs and if those differences are significant. Besides maintaining strength, does pregnisone or deflazacort offer any other benefits? At what point do you start steroids? Are there any guidlines when to start them? My son is 4, and was diagnosed in April 2008, I just want to make sure I have the right information before making this difficult decision. Any comments, thoughts, opinions or answers to my questions are truly appreciated. I could really use some guidance.

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He does take calcium and vitamins/minerals. We just recently started him on iron drops. (3 times per day) His blood work indicated that he was at a 7 which is really low. The normal range is like 50. It is too early to tell if they are working yet. We will get him re-tested in January. Too bad they didn't test him earlier. I think he has been having problems with this for over a year. His pt is the one who ordered the sleep center study. The study showed he has of 11 cramps or twitches per hour. The good part is his oxygen levels were normal.
I don't believe the research shows a preference between the steroid options. Cincinnati doesn't have a preference. There's an indication for less weight gain with Deflazacort, but there's also an indication for increased incidence of eye cataracts.
On Feburary 11th we have our appointment to get Jake started on Deflazacort, however I warned our doctor that I might chicken out and cancel the appointment. Just recently Jacob has started to fall quite a bit. His falling is out of the blue. I turn around and he is on the floor. He is always telling me, "I'm okay mom! I'm okay." His PT gave him some orthotics to wear in his shoes to keep his feet in their proper placement, it seems to be helping.

I should mention too, on a different subject, but you might appreciate the info......Jake had a sleep study too and we found that an average of 13 time during the night he had a partial blockage of airway and an average of 5 times per night he had total blockage of airway. So...We had his tonesils and adenoids removed at the end of October. His snoring has decreased a bunch, but I have noticed he still is doing it once in awhile. In March we are scheduled for sleep study number two. Jake did great during surgery, Childrens hospital did a great job. He had an easy recovery and has been doing great ever since.

Oh and one more thing on a totally different note......Last weekend my family and I participated in the first annual Run For Our Sons in the Seattle 1/2 Marathon. Our team (Team Ham) which was made up of 43 members, raised over $52,000 for PPMD! My feet are still hurting, but it was well worth it. If you ever get a chance to participate in such an event, it is pretty awesome! I wore a giant sandwitch board ( for 13.1 miles) that had a picture of my son and a few other local boys with DMD, and the PPMD web site on it...We got a ton of Cheers!
Hi Melinda
We live just north of you and see dr. Hayes at Seattle Children's. I find it interesting that they support both predinisone and deflazacort now. My son started steroids 7 years ago and we were discouraged from pursuing deflazacort because US docs can't prescribe it. It's interesting how the times have changed. Anyway, Erik takes prednisone and he walked until he was past his 15th birthday. He stopped walking when he broke his leg after a fall from kicking a ball to the PT without holding on to anything. How dumb were we to allow it. He was still able to stand on one leg at the time. Anyway, we started Erik on .75mg/kg. At that dose he was totally hyped up and had difficulty sleeping. Children's said don't decrease. I approached our family doc who was the presciber and he agreed that a reduction was approprepriate. We reduced Erik's dosage to a point where he was getting the benefit without so many side effects. He is still taking a lower dose, but we have increased it as his weight has changed. We also chose alternate day dosing. It is not the preferred dosing schedule in studies, but I figured I was dealing with an individual and not a group and we could always change to daily dosing. My theory on chosing alternate day was that he would have some recovery time from the side effects and suppression of the adreanal system. It may not work that way, but when we started, there was no strong direction. So far, no regrets. We continue the steroids because Dr. Bigger has found that it helps upper body strength, respiratory function and I am still hopeful that Erik will not have to have spinal surgery. Erik is 16 and his spine looks good.

Congrats on running the half marathon. Send me an e-mail next time and I will help sponsor you.

Best wishes in making a tough decision. There are so many decisions with this disease where one has to chose between 2-3 bad choices. There are few clear guidelines. After all these years, medical care for this disease is still an art form.
Melinda

I just read your last post again. We started Erik on steroids during the summer so that we would have time to work out any kinks before school started. Your son is 4. Is he in preschool? Just a thought...I caught your anxiety about your Feb.11 appt.
Amy Wickert said:
Hi Melinda,
My Dr. told me Deflazacort would be better for Alec. After reading Dr Bigger's findings, we decided to give it a try. My insurance company actually agreed to cover it. My Dr and I both wrote a letter to the board of trustees explaining there are more adverse side effects from prednisone, and there would be more dr bills to cover. Plus the fact that there a lot of European countries who use Deflazacort because of the low side effects, but it is not worth the time or money to have it passed by the FDA because there is not enough need here in the US for it. They did some research and had a lawyer look over Alec's case. It took a couple of months and a lot of phone calls, but in the end it paid off. Alec started on the Deflazacort right after his 4th birthday. (August of this year). He takes 15 mg once a day. Make sure to get a Rx from your Dr for zantac or something for his stomach. Alec takes this twice a day. He is doing ok, the main thing I have noticed is his behavior-not so good. He was just recently diagnosd with RLS (restless leg syndrome). This keeps him up at night, and he wakes me up. I don't know if I should blame the bad behavior on lack of sleep, or the Deflazacort. Maybe a little of both!! Anyways, I wish you luck with your next step of the game. Hang in there!! AMY
Amy Wickert said:
Hi Melinda,
My Dr. told me Deflazacort would be better for Alec. After reading Dr Bigger's findings, we decided to give it a try. My insurance company actually agreed to cover it. My Dr and I both wrote a letter to the board of trustees explaining there are more adverse side effects from prednisone, and there would be more dr bills to cover. Plus the fact that there a lot of European countries who use Deflazacort because of the low side effects, but it is not worth the time or money to have it passed by the FDA because there is not enough need here in the US for it. They did some research and had a lawyer look over Alec's case. It took a couple of months and a lot of phone calls, but in the end it paid off. Alec started on the Deflazacort right after his 4th birthday. (August of this year). He takes 15 mg once a day. Make sure to get a Rx from your Dr for zantac or something for his stomach. Alec takes this twice a day. He is doing ok, the main thing I have noticed is his behavior-not so good. He was just recently diagnosd with RLS (restless leg syndrome). This keeps him up at night, and he wakes me up. I don't know if I should blame the bad behavior on lack of sleep, or the Deflazacort. Maybe a little of both!! Anyways, I wish you luck with your next step of the game. Hang in there!! AMY
Two days ago We been at CHOPhiladelphia, We seen Dr TENAKOON, in the end We agree to put our son under DEFLAZACORT[18mg/day].Tomorrow I'll contact master marketing for the first order,my son don't like pills,I'm thinking to get him the liquid form,but I don't know about the taste???
What do you think?
We tried the liquid form of Deflazacort last April from Masters Marketing, and it was pretty nasty. Jake could still taste it a lot even when we tried to disguise it in stuff. He is 4 and is actually now on the pills and has not had too much trouble at all. They are very small. For what it's worth, I think the Sandoz brand of the Deflazacort is a little bit larger than the Shire brand. We order the 6 mg tab 20 Deflazacort (Shire brand), and it has been just fine for Jake. Julie Emms at Masters Marketing is very helpful and could probably advise further to make sure you get the easiest product your son. Best of luck to you!! Oh, and in the beginning, we would just give him the pills in a spoonful or yogurt of peanut butter and he hardly noticed. Now, he just swallows them on his own.
FYI, we were told that the liquid form of Prednisone is also very nasty tasting.

Oops....I just doublechecked and actually it's the Shire brand that is a little bit larger than Sandoz brand. We get the Sandoz brand 6 mg tab 20 Deflazacort. It's a nice small size. Sorry for my confusion!! Good luck!

J's mom said:

We tried the liquid form of Deflazacort last April from Masters Marketing, and it was pretty nasty. Jake could still taste it a lot even when we tried to disguise it in stuff. He is 4 and is actually now on the pills and has not had too much trouble at all. They are very small. For what it's worth, I think the Sandoz brand of the Deflazacort is a little bit larger than the Shire brand. We order the 6 mg tab 20 Deflazacort (Shire brand), and it has been just fine for Jake. Julie Emms at Masters Marketing is very helpful and could probably advise further to make sure you get the easiest product your son. Best of luck to you!! Oh, and in the beginning, we would just give him the pills in a spoonful or yogurt of peanut butter and he hardly noticed. Now, he just swallows them on his own.
My son started on the liquid prednisone at 5 yrs old. It's extremely bad tasting. He drank it and we quickly followed it with a chaser but under heavy protest, it got tougher and tougher to give it to him. We quickly got him to start swallowing pills and it ended a lot of headaches. He was on the prednisone for 6 months until we switched to deflazacort (pill form). .They are very small - especially if your splitting them down from the 30mg to the 15 or 18mg dose.
Karen

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