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Mothers who have a child with Duchenne Muscular Dystrophy

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Use Prednisone or not?

Candace - posted on 09/22/2009 ( 5 moms have responded )

My 4 year old son was just diagnosed with DMD in July. We haven't found out if I am a carrier or not because I am already pregnant with #2. We found out that I was pregnant 3 weeks after the 1st blood test indicating a muscular problem and 3 weeks before the results of genetic test came back confirming DMD. I have decided against all testing on the baby because as sad as I am about this diagnosis I wouldn't trade my son for anything in the world. Its an honor to be his mother and I will cherish every day I have with him as well as this new little one regardless of what any of these test results or doctors say. They are probably going to do the genetic testing on my to see if I am a carrier but not until after I have the baby. Anyway....the reason for my conversation is to ask everyone for their opinions on the use of prednisone. The neurologist I saw with the local MD Clinic said and I quote "I have some parents that have chosen to use it, some that haven't, and some that have tried and decided against it. That's really only a decision you can make." Mind you the only info I have on prednisone is from the Internet. He didn't offer any professional opinion on it or any real information on it. He said that my son "might" walk a little longer but it's not a guarantee. Now knowing all the side effects of prednisone from what I have read online it seems like the chance that he "might" walk longer doesn't outweigh all the negative side effects. Let me know what you're opinions are. I have not been able to meet many parents in WI dealing with DMD that I can talk to. The MDA rep in my area is busy every time I call. They have time for quick 5 minute phone calls or time to pop something in the mail but as far as support it's not there. I can't find any other families near where I live to talk to. I'm feeling more hopeless and really need all the shoulders I can get to lean on right now. I am quickly losing faith in doctors and the medical field in general. I have more faith in the Social Security Administration and Medicaid right now than I do in most of the doctors or clinics I have been to in the last 2-3 months. That's a conversation for a different day though. This prednisone issue was pushed on me big time again today because they want me to make up my mind as to if we are going to do it or not but I don't have enough information to feel comfortable making that decision. Which I have told them and they keep telling me to talk to other parents for advice. I've tried and been unsuccessful thus far.

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Lisa - posted on 03/22/2013

hi my name is lisa and I have a son with dmd well I just came from the doctors yesterday with my son and everytime I go they always ask are you going to try predisone well I asked the doctor what is it really going to do for him and he told about I to 2 years of walking longer but al those side effects are terrible and besides my son is also adhd too and he is on medication for that so I think I will pass come on after all these years that is all they got.

Kerrilynn M - posted on 09/22/2012

Hi Candace ,

My name is Kerrilynn Mears I live in New York and my step-son also has DMD. I am also a registered Nurse by profession. I have been with Trevor since he was 3and a half and started the process of him being diagnosedin November of 08. We had him on prednisone in like Febuary of this year and took him off of it by June. I was very hestiant to try him on it for the same reasond you were. We went to a MDA clinic in Columbia and they wanted us to try it. So we tried it i found it made him hungry all the time and he gained weight very quickly and i did'nt find it make him any looser in the joints needless to say i am not a fan he also got a moon face which is very common on steroids he face got so chubby. every child is differnt but not sure wht they use prednisone with so many negative side effects. Your son is also younger than trevor. I found what you said about the MDA rep instering also i 2 find them of no help or suppor.and when i have asked they made me feel like i was wrong for asking. Not sure where you are with your son but you will need as service coordinator or a social worker for him. You can apply for SSI and disablity although they might be the same think. Also call yuor local make-a wish chapter when you feel ready Trevor went to disney while he was still amblautry and he loved it. There is also another orginazation call Parent Project that was started by a women who had 2 boys with DMD i find that organization a little more helpfull.

Hope this helped Kerrilynn Mears

Sharon - posted on 01/28/2011

My two sons have been diagnosedwith dmd. My one son is 2 and my oldest son is 4. I found out that I am a carrier and that my daughter might be a carrier as well. My son Shaun is on predisone , and I have noticed that he has more strength in his legs. and some weight gain but the doctor that I have put him on a baby dose which means that he does not get the full dose as some doctors do. I really do not want him on it. But I find that it is nessary, to prolong walking.
I also am in the same boat as you for finding any support, I know exactly what you are going through to a point. Hopefully this helped a little. But yes you can try prednisone, and if you don"t like the side affects then as previously posted you can quit. Wishing you all the best
Shay

Vicky - posted on 03/05/2010

my son marc was diagnosed with DMD last year he is 9 yrs. old i was told that prednisone would help prolong his walking he started using this medicine last year in june or july he is still walking today but my son has walked on his tip toes though since he was 2 yrs old the medicine makes him get upset stomach but the doctor also gave him tums along with the prednisone so he takes it in the moring after he eats breakfast i really dont know if he would not be walking had i not given him the prednisone so i cant help you there but he is still getting weaker of course that is part of this condition i hate that his stomach hurts but i am happy he is still able to walk not alot though so i feel i made the right choice hopefully this can help you but in the end it is up to you

Julie - posted on 10/22/2009

my son was on deflazecort but is now taking prednizone because it is less costly and the side effects are no different. Doctor said he might eat more, gain weight. might have temper issues however, so far so good. My son no longer walks but still needs the meds for strenght and energy. I say GO FOR IT! If after a few months you dont like the effects it might have on your son then quit. Adding you! Julie