Hi all

My nephew was diagnosed with DMD late last year. My sister is adamant she does not want him on steroids because of the side effects, she thinks he has enough to deal with. Do any of you know how long a DMD boy not taking steroids keeps walking for? His physio says one of his ankles is tightening up and I am starting to wonder if he starting taking steroids would they keep him walking for an extra few years. Thank you. Nadine

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My son has been on Delfazacort for a few months and is doing great, no sides effects, except having a tantrum on occasion (he had these prior to steroids though, but a bit worse is all). Actually, he is way stronger, etc. The only thing I'll say is that his doctors, 2 sets at 2 different hospitals, told us to make sure to give them only in the morning, so that it wouldn't mess up his cortisol levels. I'm not even sure what this means exactly. I have seen a few folks on here say they give them at night, so I thought I'd mention what my doctor says. Thanks, Michelle

cindy curr said:
Hi, my son has been on Deflaxocort for 10 yrs. He has had no negative side effects
until now at the age of 14yr he does have moon face. It may be coincidence but
it started at the same time I switched him to taking the deflaxacort at night instead
of morning. He walked right up until this year, and only gained weight this year.
I asked about taking him off Deflaxacort now that he isn't walking, but the concern
is that it will help him with his lungs & heart so we will continue using it. My theory
on starting him at a young age was to preserve the muscle he has as long as
possible, you just never know what cure might be just right around the corner.

Cindy
My boys are 22 and 18 now, both started on Prednisone around 7 years of age, the 22 year old walked until 12, my 18 year walked until he was 9, neither takes Prenisone now, as weight became an issue, and older son had some stomach issues which have disappeared since going off.

Susan
My son was diagnosed with DMD about 4 years ago (He's now 15). He is no longer walking but it's not because he didn't take steroids ( steroids are not recommended for people with emotional difficulties). He fell and broke his ankle and never walked after that. I think it was partly muscle weakness but also fear as well as getting sick and tired of falling all the time.
There is no guarantee that taking the steroids will keep him walking for a few more years but they often do lengthen the time.

It's extremely tough to make the decision not to use the steroids as a parent. I'm sure it's just as tough watching your nephew struggle. The doctors can recommend an AFO to help with ankle tightening. Daily exercises help as well.
The answer is, absolutely yes. Most of the boys can deal with the side effects. In my opinion, there is no reason or excuse to avoid putting him on steroids. The age when the boys stops walking varies, but my son on steroids was able to walk a little till he was almost 15. Without steroids, this will almost certainly not happen. And your sister will have more to deal with, and so will her son, if he is not able to walk. Penny (My son is now 24, and in grad school.)
I think there are some excellent responses already provided here. Just thought of adding my two cents worth. Please know that this is just my personal opinion. If I knew 2 years back, what I know now about DMD, then I would have chosen to start my son on steroids immediately .
I would look at following factors to help make the decision
1) Age of my child - if your child is under 5 years, then I would probably lean towards waiting another year
2) Type of mutation - if my child can benefit from either PTC or exon skipping(the one they are working on now) and under 5 years, I would wait.
3) Severity of the condition - if I see my child in the mild to moderate spectrum of DMD then, again depending on age - could lean towards waiting and watch the decline rate
4) If the child is already showing moderate to sever symptoms, I would start immediately and also if the child is above 5, i would not wait beyond 6 years to start on steroids.

Steroids come with a set of concerns, but as long as there is no other better option, there is really no other choice. The only choice people have is when to start!

-bain
Hi everybody, it seems ages since I asked this question, and since I have my sister has decided to put my nephew on
steroids, we are just waiting on the doctor, he said about two months so we are assuming he wants to wait until after christmas, he also says he does not recommend deflazacort because of long term effects. He has not yet said what he does recommend, but if we are not happy with the steroid he chooses then we will push for the deflazacort. Finally a big thank you to you all for responding and please know that it was your answers and combined knowledge of steroids that changed my sisters mind.
Nadine :-)
Just want to say we have used prednisone for more than 10 years without any ill effects, except moon face, and that I think it's a good option. Penny

Nadine Foley said:
Hi everybody, it seems ages since I asked this question, and since I have my sister has decided to put my nephew on
steroids, we are just waiting on the doctor, he said about two months so we are assuming he wants to wait until after christmas, he also says he does
not recommend deflazacort because of long term effects. He has not yet said
what he does recommend, but if we are not happy with the steroid he chooses
then we will push for the deflazacort. Finally a big thank you to you all
for responding and please know that it was your answers and combined knowledge
of steroids that changed my sisters mind.
Nadine :-)

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