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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I think around 8 years on the early side, probably no later than 12, but don't quote me on that.

Has your sister heard of deflazacort? It has fewer side effects than prednisone for many boys. My son hasn't had any weight gain or cushingoid in his face. It has stunted his growth a bit, but that's not necessarily a bad thing. Although some are starting to use growth hormones for that.
Our son started Deflazacort at age 4. We saw improvement right away. He walks very well now at age 9. You know he has DMD when he runs though. He is smaller than his friends - but I am only 5'2" so he may not have been very tall anyway. He got a bit hairier when he started the drugs - nothing strangers would notice - but that went away. If I recall, I think he was also very thirsty for the first week too. He has not had any weight gain. This helps with walking - the less weight the easier it is to walk. I know everyone has to make their own decision on the steriod matter but I would make the same decision today as I did 5 years ago. I want to preserve as much muscle as I can for as long as I can until there is a cure. My son also has tightening heel cords but he still has a bit more than 90 degrees so we will just keep up his stretching.

Also, there is no sign of cateracts on my son's eyes - which is a possible side effect of Deflazacort.

I don't think it will ever be too late as Deflazacort will also help with spinal curvature and I think, breathing. But I would also think the earlier the better.

Best of luck,
Angela

PS We are in Canada and we get Deflazacort here. It is not approved by Health Canada but we get it through our children's hospital. Our doctor has not prescribed Prednisone for DMD for 15 years or so.
Angela Ryan said:
Our son started Deflazacort at age 4. We saw improvement right away. He walks very well now at age 9. You know he has DMD when he runs though. He is smaller than his friends - but I am only 5'2" so he may not have been very tall anyway. He got a bit hairier when he started the drugs - nothing strangers would notice - but that went away. If I recall, I think he was also very thirsty for the first week too. He has not had any weight gain. This helps with walking - the less weight the easier it is to walk. I know everyone has to make their own decision on the steriod matter but I would make the same decision today as I did 5 years ago. I want to preserve as much muscle as I can for as long as I can until there is a cure. My son also has tightening heel cords but he still has a bit more than 90 degrees so we will just keep up his stretching.

Also, there is no sign of cateracts on my son's eyes - which is a possible side effect of Deflazacort.

I don't think it will ever be too late as Deflazacort will also help with spinal curvature and I think, breathing. But I would also think the earlier the better.

Best of luck,
Angela

PS We are in Canada and we get Deflazacort here. It is not approved by Health Canada but we get it through our children's hospital. Our doctor has not prescribed Prednisone for DMD for 15 years or so.
Nadine Foley said:
Angela Ryan said:
Our son started Deflazacort at age 4. We saw improvement right away. He walks very well now at age 9. You know he has DMD when he runs though. He is smaller than his friends - but I am only 5'2" so he may not have been very tall anyway. He got a bit hairier when he started the drugs - nothing strangers would notice - but that went away. If I recall, I think he was also very thirsty for the first week too. He has not had any weight gain. This helps with walking - the less weight the easier it is to walk. I know everyone has to make their own decision on the steriod matter but I would make the same decision today as I did 5 years ago. I want to preserve as much muscle as I can for as long as I can until there is a cure. My son also has tightening heel cords but he still has a bit more than 90 degrees so we will just keep up his stretching.

Also, there is no sign of cateracts on my son's eyes - which is a possible side effect of Deflazacort.

I don't think it will ever be too late as Deflazacort will also help with spinal curvature and I think, breathing. But I would also think the earlier the better.

Best of luck,
Angela

PS We are in Canada and we get Deflazacort here. It is not approved by Health Canada but we get it through our children's hospital. Our doctor has not prescribed Prednisone for DMD for 15 years or so.
Thanks Angela this has been a big help. Kind regards Nadine
http://www.mda.org/research/070517dmd_steroid_treatment.html

Here is a link that I posted once on the old PPMD board that is related to your question.

Janine
Roland has never been on steroids. He stopped walking around 8 1/2. I remember the dr. telling us when we were making our decision that steroids could help him walk a few months longer or years longer there was no guarantee. Weight was already a concern for Roland which is why Dr. I did not really recomend steroids for Roland.
I have never regretted the decision to put my son on steriods even though it was a tough thing to do. Alexander has been on delfflazacort for 5 years. He is now 12 years old and doing really well, he walks everywhere including every day at school in 7th grade. I am convinced the steriods have helped him alot and the side effects have been very minimal. My son is very small and skinny which is helpful. The only side effect that bothers him is that now that he is 12 he is noticing that he is much shorter than the other kids. I would not have put my son on prednisone. I also believe the steriods will help him later on with his respiratory function which was a big deciding factor for me 5 years ago. Please make sure your sister is educated on all the benefits of delflazacort. As far as his calf tightening - physical therapy should help. Is he wearing night casts? They are also very important to stretch the calf muscles and keep them from getting tight. You mentioned that you live in Ireland. I believe you should be able to get delflazacort there as it is available for use in England. The team at Hammersmith Hospital in London prescribes it as part of their treatment plan for DMD. I hope this helps you and your sister.
Mandy
My grandson (61/2) has been on deflazacort for about 9 months--we noticed improvement very quickly and he was much happier--?because he may have felt better. He has had no obvious side effects, has night splints is on supplements and is stretched every day. We were not too educated on everything when DMD came into our lives but learn daily. In hind sight we would put him on deflazacort again in a heartbeat so when a treatment/cure comes he will be in as good shape as he could be.
Lukey's Grandma
My son was diagnosed when he was 3yrs.old and I always said I wasn't going to do steroids either because of the side affects.
Around my sons 8th birthday he got to where I thought he was going to stop walking and I freaked out,I thought what do I have to lose starting him on Deflazacort ,it was the best thing I could have done for him. He started walking better,falling less, everyone could tell the difference with in just a week.
As long as I watch his diet and don't let him gain any weight I think he will keep going,it will be 2yrs in Feb. since he started them. He will be 10yrs old in Jan.and he is doing very well,he can still walk around the house and his classroom at school,he has a electric chair for long distance like recess and playing outside with his brother.
Joshua started deflazacort when he was 3. He's now 5. He is shorter than his friends/classmates, but his muscles don't have as much of a chance to tear and try to repair with him being shorter. He does have more hair on his body than his brother, but it's on his back and legs mostly. He developed some ADD side-effects, but we use chocolate covered espresso beans and another supplement to counteract that. I know of 2 boys who didn't go on steroids. 1 passed away this past Feb. at the age of 13 but was wheelchaired at the age of 7. The other boy was wheelchaired at the age of 7 1/2. Joshua couldn't walk without falling or climb stairs without crawling up them. It wasn't very long after he started his pills that he is running up the stairs and everywhere else. Joshua was diagnosed at 6 weeks old, but he had to be a certain weight before he could start them. We did a lot of research and asked a lot of questions on this site before we made our decision. Our doctor told us that we could try him on them and if we didn't see a difference within a couple of months or so, we could take him off. It's worth a try!
Hi,

My son is 17 and was diagnosed at age 9. We never did steroids for several reasons, the biggest was that we were trying to get control over my son's seizures and the neuro wanted to get control of his seizures before we starated any other meds. The biggest concern was of course having a seizure and falling and hurting himself. He is still walking some. He does use a wheelchair and is using it more often. But we feel pretty blessed that he can still walk. The most important thing you can do for the tightening is stretch, stretch and keep on stretching. If he doesn't have night splints he needs to get fitted for some. I say that and my son will do none of those things. But at 17 we don't have much control anymore. He even went through some serial casting and he won't stretch to keep the range in his ankles the casting acheived.

We have never been given a definite DMD or BMD diagnosis.

Susan
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

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