My lil guy is going back to dr soon and will be starting steroids. I believe its a good move but hes only two im worried if he starts them now how long will he be on it ,and the side affects im worried about weakining of bones and weight gain..... we should be  worried about sledding riding bikes playing and doing all the fun things kids are supposed to do its hard worrying about drs and medicenes and so forth but this is the hand we were dealt and we are trying to stay positive and keep faith but its hard sometimes.. Right now hes too little to understand whats going on  we are just trying to let him enjoy being a happy baby but deep down thinking about the future is so hard to do ..we will never give up hope and always keep the faith we will not let duchennes think its won we will fight .....

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Comment by farrah buenaobra on March 4, 2011 at 8:46pm
thank you keith ... i am going to talk with him again!
Comment by Keith Van Houten on March 4, 2011 at 10:22am

Deflazacort can be brought into the US under the FDA's Personal Use Importation Policy.  You need a prescription from a US doctor, which you can get from any doctor that's reasonably well informed about muscular dystrophy.  If your doc won't prescribe it - and you want it - try another doctor.  Any of the big MD centers will prescribe it.

 

Deflazacort is not the same as prednisone.  Side effect profile is different.  Some are better, some are worse.  Once you have the prescription, most people order through Masters Marketing, as Donna describes below.

Comment by farrah buenaobra on March 3, 2011 at 9:34pm
well my alej had his dr.appt he said we could not get the deflazacort and that its available in canada and that its the same as prednisone but i really wanted to try that i guess we will have to stick to the 50 ml twice a week of prednisone .just wondering though some people are gettin the deflazacort here in the states how do u go about getting them here in us ??? 
Comment by farrah buenaobra on February 13, 2011 at 9:20am
i am hoping to get the deflazacort i have heard better results then the prednisone i just hope the dr will also agree we return to md clinic in a couple weeks and am really going to push for the deflazacort !!
Comment by Donna on February 11, 2011 at 10:54am

We went the deflazacort route and are very happy with it (well, as "happy" that you are on steriods as you can be I guess).  Kyle went on at age 5 when he was probably in the 85 - 90th percentile for height.  He is almost 8 and is now in the 15th percentile for height.  He's grown - just not much.  He is still the happy go lucky, lovebug, that he was pre-DMD, and runs around like a mad man (with some occassional "tired legs").  I would highly recommend deflaz due to the side affects of prednisone.  We go through Masters Marketing.  Here's a link and here's our reps email address.  Kyle is on 21 mg(?) and it runs us about $158 for an 80 day fill.

http://www.masters-uk.com/medicines/home.php

Julie Emms:  julie.emms@masters-uk.com

 

Good luck with your decision.

Comment by Candice Wright on February 11, 2011 at 4:27am
Thanks for your message and really helpful  information.  At Stanford there's been no mention of Deflazacort, just Prednisone, and the very unhelpful "it's a family decision" about when he starts.  I finally feel like I can go to James' next MD Clinic appt. informed and as a result can ask the right questions and push back if I have to.  I feel like I can sleep better tonight knowing that your son had no mood swings.  MD robs the kids of so much, I want to do everything I can to not take away the best and happiest part of him, his personality.  I'm barely making it emotionally as it is, James and his adorable and charming and happy personality get me through the day.  Men in white coats will have to come for me if his personality turns into something other than the happy that it is.  Can you tell me why there were alot of tears?  Is it a pill or nasty tasting liquid or else?  James is the worst medicine taker ever and it's good for me to know before his appt. at the MD Clinic in March when he'll get them what to expect so I can between now and then figured out how to make it work.
Comment by Angela Bourgeois on February 8, 2011 at 12:16pm

Candice,

 

The other steroid available is Prednisone.  We are in Canada and Prednisone wasn't an option because Deflazacort does the same thing, without all of the side effects.  I do read about Prednisone in posts on this site in the USA.   Most of the side effects relating to mood swings are with Prednisone.  Our son had no weight gain and no mood swings.  He is more active because of the Deflazacort, which would help with weight gain. You are in a different position that we were with the steroids because our son was 4 when diagnosed and our doctor recommended the steroids (in so many words:)  We started him as soon as the diagnosis was confirmed and were glad to get started.  Our son's strength improved within days of starting them and we have never doubted our decision.  There were lots of tears trying to get him to take them, that's for sure.  But it all worked out.  There are more benefits to steroids than physical strength as well:  straighter spine as well as benefits to breathing.   

Comment by farrah buenaobra on January 25, 2011 at 11:17pm
yes he said we come back in feb we should start him on them..
Comment by Ofelia Marin on January 25, 2011 at 12:38pm
He is age 2 and the doctor thinks it's a good idea to start steroids?
Comment by Candice Wright on January 25, 2011 at 7:48am
I'm so glad to have found you all and this discussion.  I've been quietly terrified because our son James (just turned 4) has his next MD Clinic visit at Stanford in March and it's likely it will be time for steroids (he goes every 6 months right now and it was said at our last visit that it will likely be the time to discuss steroids).  I've read good and I've read bad about them and I'm tormented because James has the best personality...I don't care about the weight gain, I'm terrified that the best part of him, his personality will be overtaken by the mood swings I read about.  Let alone the other significant side effects.  I asked at the MD Clinic for guidance, what does James' medical team recommend...I got back that "it's a family decision" which didn't help for shit and left me and still has me having heart palpitations not knowing what's the right call.  I feel better having read your comments that it is the right way to go.  A couple of you mentioned Deflazacort.  Are there others to choose from.  I always feel like an uninformed idiot when we go to the MD Clinic.  I end up crying more than I process so any info to prepare me for our "steroid conversation" I would really appreciate.

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