My son's physician wrote us a prescription for deflazacort and I am looking to touch base with other families that have started their child on this medication. Our son is 10 and he is at the stage where simple tasks such as getting up off the floor, and walking up.stairs is basically impossible. I would like to know if anyone had any trouble getting this medication since it is not provided in the U.S. I've been having trouble faxing the prescription as well as communicating with the overseas distributor. Has anyone notice any major side effects with this medication since starting their child on it? Any feedback is helpful, thanks.

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Darren,

My son is 6 and he has been on Deflazacort for almost 2 years now.  We order from https://www.canadadrugs.com and never had any issues BUT we have a letter from the doctor dealing with customs which is attached.  Having a scanner rather than faxing has been easier but faxing has been very doable with them too.

 

Side effects are very well outlined in the PPMD Standards of Care documents.  We saw a noticeable difference with him very quickly and was well observed in his physical tests at the next visit with the DMD team at Children's. Later in the year after starting it, he also started taking growth hormone injections (a steroid side-effect).  This made the improvements that much more outstanding.  My understanding, though, is that the medicine helps with the child's current capabilities, so I have no idea if he would gain back in abilities to work the stairs on his own.  My Connor was still walking stairs when he started but he had to pull himself up with his arms.  Now he goes up without holding and alternates his legs.  We saw him become less clumsy with less falls.  Otherwise, we obtained a glucose meter to help us watch him for Diabetes and a blood pressure cuff to watch for hypertension.  I HIGHLY recommend following him weekly with blood pressure and glucose but WITH his primary care physician.  We only monitored ourselves after about 6-9 months with his doc.

Start getting the following in order to have baselines to compare to:

1.  DEXA bone density scan since osteoporosis is an issue with steroids.I have no idea how often we should follow this.

2.  Visit an Endocrinologist to see how his growth hormone is doing. I would follow up either twice a year or annually until he shows he is deficient in producing growth hormone IF you all would plan to add that to his regimen.

3.  Visit an Ophthalmologist before meds and then every 6 months to watch for cataracts.

 

I apologize for how overwhelming this sounds.  It's overwhelming as it is just to deal with DMD, let alone all of the complications from the meds they recommend.  However, all the research I've looked into says that the child's quality of life overall is greatly improved with the help of steroids.

Best of luck to you! My heart and prayers are with you all!

Liisa

 

 

Attachments:

Max has been on Deflazacort for about four months and is doing really well. We noticed a definate increase in strength -- he used to put his hand or elbow on his knees to stand from a sitting position and he rarely does that anymore. He has been throwing more fits but we're not sure if that's from Deflazacort or normal 3 1/2 year old stuff. The other side effects I've noticed is increased hunger and hair growth -- his little back looks a little hairier than it used to.

We get the Deflazacort from Masters Marketing in England and have had zero problems with the two orders we've placed. Starting our boys on Deflazacort is definately a hard decision! Take care.

Hi my name is Ariel, What doctor did u see in the US or canada that prescribed this drug to you? Please respond. Thank you.

Liisa Underwood said:

Darren,

My son is 6 and he has been on Deflazacort for almost 2 years now.  We order from https://www.canadadrugs.com and never had any issues BUT we have a letter from the doctor dealing with customs which is attached.  Having a scanner rather than faxing has been easier but faxing has been very doable with them too.

 

Side effects are very well outlined in the PPMD Standards of Care documents.  We saw a noticeable difference with him very quickly and was well observed in his physical tests at the next visit with the DMD team at Children's. Later in the year after starting it, he also started taking growth hormone injections (a steroid side-effect).  This made the improvements that much more outstanding.  My understanding, though, is that the medicine helps with the child's current capabilities, so I have no idea if he would gain back in abilities to work the stairs on his own.  My Connor was still walking stairs when he started but he had to pull himself up with his arms.  Now he goes up without holding and alternates his legs.  We saw him become less clumsy with less falls.  Otherwise, we obtained a glucose meter to help us watch him for Diabetes and a blood pressure cuff to watch for hypertension.  I HIGHLY recommend following him weekly with blood pressure and glucose but WITH his primary care physician.  We only monitored ourselves after about 6-9 months with his doc.

Start getting the following in order to have baselines to compare to:

1.  DEXA bone density scan since osteoporosis is an issue with steroids.I have no idea how often we should follow this.

2.  Visit an Endocrinologist to see how his growth hormone is doing. I would follow up either twice a year or annually until he shows he is deficient in producing growth hormone IF you all would plan to add that to his regimen.

3.  Visit an Ophthalmologist before meds and then every 6 months to watch for cataracts.

 

I apologize for how overwhelming this sounds.  It's overwhelming as it is just to deal with DMD, let alone all of the complications from the meds they recommend.  However, all the research I've looked into says that the child's quality of life overall is greatly improved with the help of steroids.

Best of luck to you! My heart and prayers are with you all!

Liisa

 

 

Hi my name is Ariel, What doctor did u see in the US or canada that prescribed this drug to you? Please respond. Thank you.

Veronica E. said:

Max has been on Deflazacort for about four months and is doing really well. We noticed a definate increase in strength -- he used to put his hand or elbow on his knees to stand from a sitting position and he rarely does that anymore. He has been throwing more fits but we're not sure if that's from Deflazacort or normal 3 1/2 year old stuff. The other side effects I've noticed is increased hunger and hair growth -- his little back looks a little hairier than it used to.

We get the Deflazacort from Masters Marketing in England and have had zero problems with the two orders we've placed. Starting our boys on Deflazacort is definately a hard decision! Take care.

We saw Dr. Julie Parsons at the Children's hospital in Denver, Colorado. 

ok thank you so much that was super helpful

We have always ordered from Master's Marketing and have not had any problems.

Veronica, does he still use hands to push the floor or can stand up with hands in the air now? My son, age 4, was on steroids for 7-8 months now and still uses hands to push the floor, doesn't use the knees but never did much before. He also walks slowly on stairs but he can jump now with both feet off floor. I do see some strength increase but not something very significant.

Veronica E. said:

Max has been on Deflazacort for about four months and is doing really well. We noticed a definate increase in strength -- he used to put his hand or elbow on his knees to stand from a sitting position and he rarely does that anymore. He has been throwing more fits but we're not sure if that's from Deflazacort or normal 3 1/2 year old stuff. The other side effects I've noticed is increased hunger and hair growth -- his little back looks a little hairier than it used to.

We get the Deflazacort from Masters Marketing in England and have had zero problems with the two orders we've placed. Starting our boys on Deflazacort is definately a hard decision! Take care.

Thanks for the input Liisa.  Darren has be on the med
for 2 months now, and tolerating it well.  The side effect
Issue is a bit overwhelming.  Your reply has provided me
with alot of information I wasn't aware of.  We are
In the process of getting his follow up medical care.

Liisa Underwood said:

Darren,

My son is 6 and he has been on Deflazacort for almost 2 years now.  We order from https://www.canadadrugs.com and never had any issues BUT we have a letter from the doctor dealing with customs which is attached.  Having a scanner rather than faxing has been easier but faxing has been very doable with them too.

 

Side effects are very well outlined in the PPMD Standards of Care documents.  We saw a noticeable difference with him very quickly and was well observed in his physical tests at the next visit with the DMD team at Children's. Later in the year after starting it, he also started taking growth hormone injections (a steroid side-effect).  This made the improvements that much more outstanding.  My understanding, though, is that the medicine helps with the child's current capabilities, so I have no idea if he would gain back in abilities to work the stairs on his own.  My Connor was still walking stairs when he started but he had to pull himself up with his arms.  Now he goes up without holding and alternates his legs.  We saw him become less clumsy with less falls.  Otherwise, we obtained a glucose meter to help us watch him for Diabetes and a blood pressure cuff to watch for hypertension.  I HIGHLY recommend following him weekly with blood pressure and glucose but WITH his primary care physician.  We only monitored ourselves after about 6-9 months with his doc.

Start getting the following in order to have baselines to compare to:

1.  DEXA bone density scan since osteoporosis is an issue with steroids.I have no idea how often we should follow this.

2.  Visit an Endocrinologist to see how his growth hormone is doing. I would follow up either twice a year or annually until he shows he is deficient in producing growth hormone IF you all would plan to add that to his regimen.

3.  Visit an Ophthalmologist before meds and then every 6 months to watch for cataracts.

 

I apologize for how overwhelming this sounds.  It's overwhelming as it is just to deal with DMD, let alone all of the complications from the meds they recommend.  However, all the research I've looked into says that the child's quality of life overall is greatly improved with the help of steroids.

Best of luck to you! My heart and prayers are with you all!

Liisa

 

 

Dear Liisa,

Thanks for sharing.

My son is 7 and a half. He started Prednisone for almost one year ago (0.69mg/kg/day) and have increased 3 kgs since then. The weight increases seem to be OK at his age, but his face is getting round. And he shows some decline : more difficult to do stairs ; more difficult to stand up from floor.

We live in Vietnam where only prednisone/prednisolone is applied. We are considering to switch to Deflazacort and want to buy from Canada. But we are checking if doctor can give us prescription and we also worry about import custom. So, I want to know some points :

- The letter you attached is for the import custom to USA, isn't it ?

- About the prescription, did your son's doctor mention just Deflazacort or brand name such as Calcort ?
Have a peaceful day.

Trinh
Liisa Underwood said:

Darren,

My son is 6 and he has been on Deflazacort for almost 2 years now.  We order from https://www.canadadrugs.com and never had any issues BUT we have a letter from the doctor dealing with customs which is attached.  Having a scanner rather than faxing has been easier but faxing has been very doable with them too.

 

Side effects are very well outlined in the PPMD Standards of Care documents.  We saw a noticeable difference with him very quickly and was well observed in his physical tests at the next visit with the DMD team at Children's. Later in the year after starting it, he also started taking growth hormone injections (a steroid side-effect).  This made the improvements that much more outstanding.  My understanding, though, is that the medicine helps with the child's current capabilities, so I have no idea if he would gain back in abilities to work the stairs on his own.  My Connor was still walking stairs when he started but he had to pull himself up with his arms.  Now he goes up without holding and alternates his legs.  We saw him become less clumsy with less falls.  Otherwise, we obtained a glucose meter to help us watch him for Diabetes and a blood pressure cuff to watch for hypertension.  I HIGHLY recommend following him weekly with blood pressure and glucose but WITH his primary care physician.  We only monitored ourselves after about 6-9 months with his doc.

Start getting the following in order to have baselines to compare to:

1.  DEXA bone density scan since osteoporosis is an issue with steroids.I have no idea how often we should follow this.

2.  Visit an Endocrinologist to see how his growth hormone is doing. I would follow up either twice a year or annually until he shows he is deficient in producing growth hormone IF you all would plan to add that to his regimen.

3.  Visit an Ophthalmologist before meds and then every 6 months to watch for cataracts.

 

I apologize for how overwhelming this sounds.  It's overwhelming as it is just to deal with DMD, let alone all of the complications from the meds they recommend.  However, all the research I've looked into says that the child's quality of life overall is greatly improved with the help of steroids.

Best of luck to you! My heart and prayers are with you all!

Liisa

 

 

Joshua has been on Deflazacort for 6 years now.  The side effects he's had are ADD/ADHD, hair growth on his back and some stomach aches when he first started the steroids but not after he started his supplements.  His strength improved when it came to stairs et al as well.

We saw on Friday for the first time the new neurologist at CHOPhiladelphia,Over all our son still meintaining about the same since last December,The previous neurologist put him on 9mg of Deflazacort once daily,b/c of non growth issues.Since last six months No gain on heights at all,so this new neurologist told us to put him on 30mg twice weekly{week end only}.then will recheck his heights in 3 months.My question now is there any one on this situation?

 

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