My son Alex (11 in April) is on daily pred and no longer walking. He can still stand with assistance, but for only about 1-2 seconds. His weight is high (120 lbs) due to the pred, diet, and the obvious lack of consistent exercise (though he swims in summer). I realize the steroids provide some strength to Alex, but I am beginning to wonder about the downsides of his loss of walking (i.e., weight gain, potential diabetes, etc.). Dieting has been difficult, but we try. My question is when do we stop his steroid usage? Will his remaining strength disappear once off the steroids? Will he begin to lose weight once off the steroids? Do we continue as is to help provide what remaining strength he does have and deal with the weight in other ways (i.e., stricter dieting)? Do we continue steroids for other muscles (hands, arms, etc.)? Does the rollercoaster trend downward at a faster rate once off? I am very interested in others experience and perspectives.

Thanks,

Dave

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Hi
I have known that stopping steroids all of sudden could be very risky as steroids always needs to be tapered, also I will like to add that it also protects the vital muscles of heart and lungs .hope this will help you make a right decision .
It is always best to discuss this with your cardiologist and neurologist. As Archana mentioned the boys do need to be tapered off steroids and a lot of specialists do encourage their use post loss of ambulation to protect the heart and diaphragm, however, if your son is experiencing significant weight gain on the steroids, this negates the benefits of using them when considering heart function.

Our son also had weight issues so he was taken off the steroids when he stopped walking. It took a while but his weight is now nearly back to normal, and his heart function has improved as a result.

With any weight loss it comes down to basic laws of physiology - energy in must be less than energy out. Therefore I would consult with a dietician to have a metabolic test done on your son to ensure you are putting in approx 10% less calories than he needs each day. Some dieticians have no idea about the needs of non ambulant children so it is very important you speak with someone who has experience in this area.

If the dietry restrictions are such that you feel you can not maintain them then of course this must also be given consideration as without the weight loss the work load on the heart is still substantial, and without the benefits of steroids, premature cardio myopathy may result.

As far as increased deterioration of muscle fibres when not on steroids it is important to remember that steroids do not protect the muscles, they merely increase the function of the fibres that are left. Therefore whilst there will not be an increase in rate of deterioration there may be a gradual decrease in the strength of the remaining muscle fibres

Medically I don't think there is a definitive answer as to when the right time is, as like Duchenne it is different for each patient. Follow your heart, but make an informed decision by consulting with the professionals that are monitoring your sons vitals.

Good luck
Definitely speak to your neurologist and cardiologist. I see Dr. Wong, and the benefits for the heart and lungs through steroids, even though the child is no longer ambulatory is still there. We use Deflazacort which has less weight gain side effects and instead of stopping altogether, you may want to find out if switching over can be beneficial for your son's heart and lungs.
Michelle
Our son Justin stopped walking in 2005. he has continued on steroids. We took him off for awhile and while we did see some loss of strength in his arms and shoulders, it wasnt much. Our cardiologist, neurologist, and pulmnologist all wanted him back on them to maintain his heart and lung function. Justin is almost 14 and weighs about 120lbs. We have to work to keep him there. He is a VERY picky eater, so we have had to limit portions and change what we buy. So far it has been working!

--Samantha
Thanks everyone. Helpful advice. I realize an abrupt stoppage is ill-advised, and understand that Drs. Wong and Cripe (Cardio) will need to be consulted. We would never do anything in that regard without talking with his doctor's first. I'm just curious in other's experiences with steroids usage (i.e., ages for weening, stopping, etc.) and beyond. I feel like we're entering a new phase with Alex on the DMD path and I'm interested on what lies ahead.

Thanks again!

Dave
We started our son Ben on steroids this past March. He lost the ability to stand or walk this past December. I had the same questions that you have mentioned. The weight gain was so drastic I wondered if we made the right choice(30lbs or so). I thought about stopping the steroids, but changed that once we went for his last lung exam. The lung specialist said that the steroids will keep his lungs and heart stronger, and that we should continue with treatment. When we went back to clinic to have him seen about his loss of abulation, they decreased his dose, but I will continue to keep him on if there is a greater benefit for his heart and lungs! Good luck with your decision, but I thought I would share my story with you. Heather
Hi Dave,

Our son stopped walking at 15 and we were advised a year later to stop prednisone so that a surgical wound (treated four years) could heal. We went to an endocrinologist and she had us taper down to 20mg and then drop 2 mg every week. (he was on alternate day dosage) Then start dosing 5 mg a day. We got down to that dose and my son hit a wall. He couldn't get out of bed in the morning. His stamina decreased and his arm strength went down dramatically. He was driving a car at the time and had to stop due to arm weakness. He had to drop 2 classes at semester and make up the credits during the summer. If you don't have to, I would consider not stopping. Our son was so surprised by the change we kept him on low dose prednisone 10mg/day. He has stablized now. When (if) the wound heals he will probably increase his daily dose. He really relies on his arm strength and we want to preserve it as long as possible.

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