Say no to Prednisone
She had gained so much weight it put her in the beginning stages of congestive heart failure. We took her off and her heart started stabilizing. She is on Inderal LA 80 mg per day and enalapril 10mg per day. There was a study done on these two meds that show some stabilizing effect to people with cardiomyopathy which also.
Yeah there are girls with dmd.
My two sons also have dmd 3 & 13yrs old. We took our 13 yr old off prednisone too once he started gaining huge amounts of weight.
Replies to This Discussion
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Permalink Reply by Janine on
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Did you notice any difference in strength and/or a decline in mobility in your two children when you discontinued to prednisone? Also did it take a long time for the doctors to diagnose your daughter with dmd?
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My Daughter was diagnosed at 4years old. It took about 6mo for dx.
Due to a broken arm on her x chromosone she received from her father my x took over and I am a carrier. In some ways her dmd seems to be milder then boys her age. She still can walk a little with a walker. But most of the time she is in her power chair. She can still transfer her self out of her powerchair.
My 13 year old son was diagnosed at 8months old. His CPK was elevated.
We decided not to put him through further tests.
When Alisha went off the prednesone her heart condition seemed better.
Timothy walked until he was 11. Since he came off the prednesone.
Both lost weight Alisha 60 pounds, Timothy about 30lbs.
They seem alot happier since being off the med.
Prednesone..helps for awhile but the risks that it puts on bone health, the weight gain puts a huge stress on the heart, the heart being a muscle too is already at risk.
Alisha at 16 they told me at the cardio's office to go home and prepare for hospice. We took her off the prednesone and with a combo of heart meds her heart was more stable in six months.
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Permalink Reply by Susana Arroyo on
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Hello!
My name is Susana && I am an 18 year old girl with dmd; I would like to hear more about other girls with dmd.
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Permalink Reply by Jerry Dallapè on
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It's a shame that your daughter had such a negative experience with Prednisone. Both Pred and Deflazacort offer very good protection to the heart according to the studies, but if she had 60 pounds to lose, I can see where that risk would outweight the benefits.
When assessing the risks and benefits of steroid treatments, parents always consider the emotional side effects because they are the most immediately visible and potentially the most disrupting to the family. The weight gain, however, can start to creep up on you. We have been very careful to keep Ewan on a low sodium diet (kind of had a setback the last few weeks, but we are getting back on track now) and I am weighing his every ten days to keep a check on the weight gain.
Did you ever give consideration to Deflazacort? Some kids who have behavioral problems or weight gain with Pred see those problems disappear with Deflaz.
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Permalink Reply by Jane Williams on
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Laurie Leonard said:My Daughter was diagnosed at 4years old. It took about 6mo for dx.
Due to a broken arm on her x chromosone she received from her father my x took over and I am a carrier. In some ways her dmd seems to be milder then boys her age. She still can walk a little with a walker. But most of the time she is in her power chair. She can still transfer her self out of her powerchair.
My 13 year old son was diagnosed at 8months old. His CPK was elevated.
We decided not to put him through further tests.
When Alisha went off the prednesone her heart condition seemed better.
Timothy walked until he was 11. Since he came off the prednesone.
Both lost weight Alisha 60 pounds, Timothy about 30lbs.
They seem alot happier since being off the med.
Prednesone..helps for awhile but the risks that it puts on bone health, the weight gain puts a huge stress on the heart, the heart being a muscle too is already at risk.
Alisha at 16 they told me at the cardio's office to go home and prepare for hospice. We took her off the prednesone and with a combo of heart meds her heart was more stable in six months.
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Permalink Reply by Aimee Ealy on
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I am very sorry your daughter did not do well on prednisone. However, not all DMD kids have the same response. Although it is very difficult to control weight, it is be possible for most. Did she gain it over several years, or was it immediate? My concern about the title "Say no to Predisone" is that many parents (including myself) have either just made the decision to start steroids or are contemplating it, and it is a very scary place to be. Right now, this is all we have, and parents are scared enough. It is important to know that most kids do not do so poorly on predisone, or switch to deflazacort, and benefits greatly outweigh the side effects. I think your daughter might be an exception, not the rule.
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Permalink Reply by MicahsDaddy on
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Weight gain for anyone, steroids or not, is bad for the heart. Of course, even worse for DMD patient.
Patients today are living longer than years past and a DMD cardiologist told me that he believes steroids is a reason for this. He mentioned he noticed 15 y/o boys today who have been on steroids have better hearts than 10 years ago for 15 y/o boys who weren't on steroids. Granted, this is his personal observations, not from a trial.
Some kids don't get weight gain, some don't get anger issues, some don't get puffy faces, some don't have any side effects, and some do. But to say no to prednisone should only be on a patient by patient basis. The patient should be monitored for side effects and if any arise, action should be taken to fight it. If diet, supplements, other meds, etc. don't alleviate the side effects, then the patient can always be weaned off of prednisone to try something else.
Unfortunately, not everyone can afford deflazacort, so prednisone or no steroids at all are the other options.
As for enalapril, this would be good for high blood pressure, allowing the heart to not work as hard. This would be a plus for the heart…the less work, the less wear and tear. Just like how we are trying to preserve the other muscles.
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Permalink Reply by Vickie Caile on
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Hi Laurie
My daughter has DMD, diagnosed at 15 months completely by accident. She was being treated for failure to thrive for her first year. At 10 months they diagnosed her with Turner's Syndrome and at 15 months they decided to treat with growth harmone, because she would be getting injections they did a base line CPK. That is when we found out she had DMD, after a quick muscle byopsy it was confirmed. In 2006, we did the heel cord surgery and in 2012 we started steroids. We were seeing a marked decrease in her strength and increased weaknesses. She is on Deflazacort...afer 120 days we saw her strength increase and her weakness level off. Although we saw weight gain initially, after about 12 months she has only gained 6 pounds and we are not health nuts, we go to McDonalds once a week and pizza every Friday! I am a believer in Deflazacort. I am thankful she is still walking. I've been reading about alot of heart problems lately in people with DMD, next week we go to the cardiologist for the first time since starting steroids, I don't see any signs in my daughter but I want to make sure I am asking all the right questions, unfortunately she doesn't get to see the same doctor every time. Any advice is appreciated.
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Permalink Reply by Mitch & Jodi Nichols on
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Hi Vicki, I'm just curious, my son Andrew is 7 and is on Deflazacort and has been for about a year now. He has not gained any weight at all and we too are not health nuts!! Unfortunately we have seen horrible behaviors lately and they are sky rocketing. I'm just curious if you see the behaviors too. It's to the point where we are debating on stopping steroids altogether, but are afraid he will lose the positive effects.We are so torn, any help or advice is so appreciated. Thank you! Jodi
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Permalink Reply by Fred Luchetti on
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Hello Mitch and Jodi,
I am sorry you are having issues with your son. I will recount to you my 13 year story with Deflazacort and my now 19 year old son Kyle. Kyle was an emotional kid even before the steroid. When he got started on Deflazacort we noticed that emotional volatility was increased. Never to the point of huge tantrums though. We did our best to diffuse those emotions when we saw them coming. It takes practice and comedy is a very useful tool. You need to appreciate that there is nothing you can do to change the child, he needs the meds and the side effects are what they are. That being the case, Andrew needs to be treated differently, not with kid gloves so much as with hand puppets. Remember that the behaviour you are seeing is an amplification of the frustrations he is feeling. Find the root of the behaviour and that is where you will find the method of diffusing it.
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