Steroids – counteracting side effects.

Steroids are a problem. Of course, they are Standard of Care and deliver benefit. There is no question about that. But over time, the side effects will hit you (your son) and it may be time to consider seeing an Endocrinologist. One of the members of the Cincinnati Neuromuscular Team is a pediatric endocrinologist. They evaluate every boy carefully and thoroughly . If he meets certain criteria, Growth Hormone is recommended. I spoke with 9 families whose sons are currently taking GH for more than 1 year. All are happy they initiated GH. They reported that the boys grew from 1-3 inches and felt that this growth positively impacted their quality of life. They were able to reach things previously out of their reach. Two were able to ride certain rides at Disneyworld. (that’s a BIG DEAL) . GH was insurance covered in all cases.

This does not mean GH is for every boy, rather it suggests this topic needs to be on the table. The Cincinnati team will soon have date on 30+ boys. Physicians who care for boys with Duchenne and physicians outside the field who care for children are chronic steroids (pediatric rheumatologists, ped. Pulmonologists, etc) need to collaborate and discuss ideas, risks and benefit.
Bone health is also an important topic in this area. There is considerable interest in the effect of low level whole body vibration for short periods of time each day. In post menopausal women and the elderly, this type of vibration has been demonstrated to improve bone density. Why not Duchenne?

And puberty. One parent called to say their son’s friends had difficulty assisting with the urinal. Because this young man had not gone through puberty, it was difficult to use the urinal from his chair and typically resulted in wet underwear. An endocrinologist recommended testosterone and it helped! No more problems and other benefits as well. But again, this treatment will not necessarily work for all of our boys and as always we must remain cautiously optimistic.

As more results develop, we will share what we learn with you. Also, you may be interested to know that we are developing an international meeting to discuss these issues. More on that in the coming weeks.

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Comment by Jacobs Mommom on January 19, 2009 at 12:26pm
I have a question regarding the prolonged use of steroids. Since Jacob is 8 1/2 and been on deflaxacort for a year and 1/2 I was wondering if those boys who are non-ambulatory are staying on steroids and why? I know they are supposed to improve heart function and supposedly scoliosis will not be as bad but does there come a point and time where they are no longer beneficial? Are much older boys on steroids and were they ever on them since they were not considered a treatment when they were younger?
Comment by Janine on January 18, 2009 at 11:57am

My son has been on hgh for about five months now. Things seem to be going well and he is growing. At his first re-check after 14 weeks he had grown an inch. The doc said although at that point it was probably too soon to notice but he was very interested to see what increase of strength he may experience. I wondered what kind of data Cincy was collecting? My doctor wanted me to try to think of a way to measure if he is getting stronger. I'm really not sure what to measure and wondered what Cincy was using. My son is still ambulatory, but timing him going down the hall as fast as he can really isn't feasible. I would be too worried he would fall down and get hurt. Also I think my doc may be intersted in collaborating with other endocrinologists.

I am as you would imagine very interested in an international collaboration on this subject. I wonder is there a higher percentage of dmd boys who are also low on growth hormone? Is this a seperate problem or is it directly related to steroid use? My son's neuro (Jerry Mendell) was open for testing but he said he most likely would be hesitant about gh treatment if my son was not low. I am happy with the results so far but lately I have been worrying about what happens when we end the treatments? Will we see a significant drop in strength?

Thanks for keeping us all up to date.


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