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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Hi Melinda,
Good question, but I think that the answer is as varied as who likes chocolate over vanilla! My son began Deflazacort just before his 4th birthday. He has done great on it. He has seen all of the benefit, increased strength and stamina, with no side effect except stunted growth. We did have to do about 1 week on prednisone due to a bad case of poision ivy and my sons behavior about did me in! I am thankful every day for deflazacort and that we began it before he lost too much strength. We just had Seph's first MRI of his rear and he has VERY MINIMAL damage....Dr. Wong said, "almost normal"! Is this because we began Deflaz at 4? Or is it just that my son is progressing slowly? We don't know, but I wouldn't change a 'working cocktail' for the world.
As for studies....check into the data that Doug Biggar has on the differences of Deflazacort v. Prednisone. It definitely gives a case for using one or the other AND his preference and the data shows Deflazacort. I am sure there is someone on the board who can tell you where to find the data.
Lori
Thank you Lori for your imput, I will definatley check out Doug Biggar and his data on the subject. It is nice to hear that your son is doing well and has the energy and strength of a healthy four year old. I am hoping to have a decision made by the end of the holiday season. I go to Children's Hospital in Seattle WA, and they are supportive of both types of steroids, however they really have left the decsion up to me, and so I want to make sure that I get opinions and facts from both sides of the steroid debate so that I can do what is best for my son. Again Thank you very much!

Lori Ware said:
Hi Melinda,
Good question, but I think that the answer is as varied as who likes chocolate over vanilla! My son began Deflazacort just before his 4th birthday. He has done great on it. He has seen all of the benefit, increased strength and stamina, with no side effect except stunted growth. We did have to do about 1 week on prednisone due to a bad case of poision ivy and my sons behavior about did me in! I am thankful every day for deflazacort and that we began it before he lost too much strength. We just had Seph's first MRI of his rear and he has VERY MINIMAL damage....Dr. Wong said, "almost normal"! Is this because we began Deflaz at 4? Or is it just that my son is progressing slowly? We don't know, but I wouldn't change a 'working cocktail' for the world.
As for studies....check into the data that Doug Biggar has on the differences of Deflazacort v. Prednisone. It definitely gives a case for using one or the other AND his preference and the data shows Deflazacort. I am sure there is someone on the board who can tell you where to find the data.
Lori
Hello,

My son was 5 when he started Deflazacort. I didn't think twice. We started him on Deflazacort vs Pred without much research..Just the news from other members on the board. My son does not have behavior issues and I've not seen a change in behavior..possibly a little wired up the first week...his appetite did increase and he gained 8lbs the first year. Dr. Wong told us he must maintain his weight for a year...he's been doing well..was sick with a fever this year for two days and appetite seems to have decreased since that time...Good Luck!

Darcy
Christians Mom
Dear Melinda

We have Justin (now 8) on Prednisone and he has been on it since the diagnosis in September 2006. We do not have medical council approval for the Deflazacort in South Africa, which I beleive is also true in other countries. We are seriously going through the motions of getting the Deflazacort approved here as from my research of the limited resources available, Dr Biggar is of the opinion that Deflazacort has the potential of less long term side effects along with the severity of the side effects. I have a presentaion he did in 2006 that indicate this feeling, BUT he does say both work as well as each other, it is just the reaction of certain boys to the treatment may vary due to their ability to tollerate it. I will find it if you send me a message with your mailing details so I can send it to you. I am not sure I can attach it to this message.

Justin is of another father and is small and short like his father, Dr Biggar comments that these boys excell on the treatment with very little of the weight gain etc, however Joshua (my blood son) is built like a brick, - yea like his dad. These boys have a tendancy to gain weight and suffer a lot more from the side effects resulting from Prednisone, and hence he recommends that we try and obtain Deflazacort. If my memory serves me correctly, he explained that the Deflazacort is a lot more refined version of Predinisone. He also stated that we should not use "fake" products and only the original. I say fake, i mean generic or non generic I am never sure which means what and most people I come accross do not understand it either.

All the best and I hope whatever you choose or have chosen, it works as well as we have experienced with Justin. The only thing other than the huge gain in strength he has benifited from, is that he is a lot more sensitive or emotional than he was prior to the treatment. This can be managed by limiting the things that antagonise him, like his baby sister scratching his stuff and playing with his toys and books.

Good luck and keep us posted on your findings.

Colin (Dad to some of the most special kids on earth)
Well..... I have came to the conclusion to give the Deflazacort a try. My son is very sensitive and emotional as part of his personality, so my thinking is... why even bother with the prednisone. I would rather pay the extra money for deflazacort (Which is not approved by our FDA and my insurance won't cover it) then go through the hassel of trying the prednisone (Which my insurance will cover) which I have a feeling that it wouldn't work for him. So The next question is WHEN? Here are some of his symptoms. He does not jump, needs me to hold his hand or use a railing to walk up stairs and I have to cue him to change his feet. Without a railing or a hand to hold he crawls up them or down. He has an awkward running style, he dosen't fire, Take off. However, he dosen't fall much. But does he not fall because I am super sensitive to his actions and for the most part hold his hand when walking (ex. walking from the parking lot to the store etc.)? To get off the ground he places both hands and feet on the floor and then stands up, but has yet to walk both his hands up his legs, but sometimes places one hand on his knee to give him an extra boost up. He also gets tired. After swim lessons and running around doing errands he complains that his legs are tired. So at that point he rides in the grocery cart, or at home, he sits and watches T.V until he gets his second wind. Let me know what ya'll think, and again I appreciate all of your advice and oppinions! You have all definatley helped me make the decision of what type of stereroids to use. I felt that the information from Doug Biggars was supper helpful. OH! One last question.....What is the best type of dosage schedule for these champions?

Melinda
Melinda,
We started Sam on deflazacort shortly after his 3rd birthday. He was a very quick increase in his abilities and no immediate side effects. His growth has slowed immensely, and he has some extra hair growth, but so far that's it.

Oh, and we do daily dosing.

GL!!
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
The dosage is 0.9mg per body kilogram, I do not know the imperial doseage in pounds but I am sure it is freely available fron the USA members. (Perdnisone is 0.7 mg per kg). When to start is a trick one, with Justin, he was already very weak, crawling up his egs to stand etc, so he started as soon as we knew. Joshua (now 4 years and 5 months) is still not on the drug. We feel he should go for as long as possible before we start, Dr Biggar's response to this question is "You will know when" The problem with sstarting early is the huge risk of side effects early and the possibility of having to reduce the doseage or even take him off it as his tolerance is just not working, so in theory, when he would need it the most, he would be deprived of it due to the side effects. These are huge and should never be taken forgranted.

My advice would be to hold on for as long as possible, but research and try and find as many simular parents as you and get their opinions on the progress. Some that are a few years ahead that sterted young and others that waited till it felt like the right time.

Good luck, all I know is that steroids have far less side effects if compared to the effects of DMD, so my advice is at least give it a try and manage the side effects for as long as possible if they arise.

PS do not forget the Vitamin D and calcium for his bones. daily in large doses, I will get the ratio as I do not remember the formula for this.

Colin

Melinda Colby said:
Well..... I have came to the conclusion to give the Deflazacort a try. My son is very sensitive and emotional as part of his personality, so my thinking is... why even bother with the prednisone. I would rather pay the extra money for deflazacort (Which is not approved by our FDA and my insurance won't cover it) then go through the hassel of trying the prednisone (Which my insurance will cover) which I have a feeling that it wouldn't work for him. So The next question is WHEN? Here are some of his symptoms. He does not jump, needs me to hold his hand or use a railing to walk up stairs and I have to cue him to change his feet. Without a railing or a hand to hold he crawls up them or down. He has an awkward running style, he dosen't fire, Take off. However, he dosen't fall much. But does he not fall because I am super sensitive to his actions and for the most part hold his hand when walking (ex. walking from the parking lot to the store etc.)? To get off the ground he places both hands and feet on the floor and then stands up, but has yet to walk both his hands up his legs, but sometimes places one hand on his knee to give him an extra boost up. He also gets tired. After swim lessons and running around doing errands he complains that his legs are tired. So at that point he rides in the grocery cart, or at home, he sits and watches T.V until he gets his second wind. Let me know what ya'll think, and again I appreciate all of your advice and oppinions! You have all definatley helped me make the decision of what type of stereroids to use. I felt that the information from Doug Biggars was supper helpful. OH! One last question.....What is the best type of dosage schedule for these champions?

Melinda
I am getting nervous now, if Kelvin should be on steroids at all. I didn't know when, at all. It hasn't been real negative though, just a bit more strong in his outbursts (no more than once a day, if that) and he did get quite a bit of hair growth, which, mind you, he had tons at birth and was always very hairy, but now, has a lot more on his back. I am getting concerned that maybe Kelvin shouldn't have started them, but they say, that if you wait until "too late" the effect won't last as long and as well and too much muscle can be damaged so that the help won't be as great. We really didn't think that there was anything going on (he was strong, didn't fall, was running up and down stairs, etc.) that would make us think that he needed the steroids, but after reading studies, we felt that the younger, appeared to be the better, they are now, even talking that at birth, might be ok. Kelvin has always been short (I am too), but did grow 2 inches this last year with taking steroids (Deflazacort), so I just hope, we made the right decision. They certainly have made him feel more energetic, with lots of energy (I'm not sure that is great either, as he runs everywhere). I have seen reports that say that between age 4 and 6 seems to be the best time to start them, so since Kelvin as already 5, we started him within a few months of finding out. Michelle

Colin McKenzie said:
The dosage is 0.9mg per body kilogram, I do not know the imperial doseage in pounds but I am sure it is freely available fron the USA members. (Perdnisone is 0.7 mg per kg). When to start is a trick one, with Justin, he was already very weak, crawling up his egs to stand etc, so he started as soon as we knew. Joshua (now 4 years and 5 months) is still not on the drug. We feel he should go for as long as possible before we start, Dr Biggar's response to this question is "You will know when" The problem with sstarting early is the huge risk of side effects early and the possibility of having to reduce the doseage or even take him off it as his tolerance is just not working, so in theory, when he would need it the most, he would be deprived of it due to the side effects. These are huge and should never be taken forgranted.

My advice would be to hold on for as long as possible, but research and try and find as many simular parents as you and get their opinions on the progress. Some that are a few years ahead that sterted young and others that waited till it felt like the right time.

Good luck, all I know is that steroids have far less side effects if compared to the effects of DMD, so my advice is at least give it a try and manage the side effects for as long as possible if they arise.

PS do not forget the Vitamin D and calcium for his bones. daily in large doses, I will get the ratio as I do not remember the formula for this.

Colin

Melinda Colby said:
Well..... I have came to the conclusion to give the Deflazacort a try. My son is very sensitive and emotional as part of his personality, so my thinking is... why even bother with the prednisone. I would rather pay the extra money for deflazacort (Which is not approved by our FDA and my insurance won't cover it) then go through the hassel of trying the prednisone (Which my insurance will cover) which I have a feeling that it wouldn't work for him. So The next question is WHEN? Here are some of his symptoms. He does not jump, needs me to hold his hand or use a railing to walk up stairs and I have to cue him to change his feet. Without a railing or a hand to hold he crawls up them or down. He has an awkward running style, he dosen't fire, Take off. However, he dosen't fall much. But does he not fall because I am super sensitive to his actions and for the most part hold his hand when walking (ex. walking from the parking lot to the store etc.)? To get off the ground he places both hands and feet on the floor and then stands up, but has yet to walk both his hands up his legs, but sometimes places one hand on his knee to give him an extra boost up. He also gets tired. After swim lessons and running around doing errands he complains that his legs are tired. So at that point he rides in the grocery cart, or at home, he sits and watches T.V until he gets his second wind. Let me know what ya'll think, and again I appreciate all of your advice and oppinions! You have all definatley helped me make the decision of what type of stereroids to use. I felt that the information from Doug Biggars was supper helpful. OH! One last question.....What is the best type of dosage schedule for these champions?

Melinda
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
Hi,
I read about your sons RLS. Does he take minerals? Most cases od RLS are due to mineral deficiencies, like calcium or magnesium. I give it my son. I also started on multiminerals myself and cured my RLS and muscle twitches, (due to too much coffee)

Christine

christine good said:
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
christine good said:
Hi,
I read about your sons RLS. Does he take minerals? Most cases od RLS are due to mineral deficiencies, like calcium or magnesium. I give it my son. I also started on multiminerals myself and cured my RLS and muscle twitches, (due to too much coffee)

Christine

christine good said:
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

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