Hi There, I would like to know if anyone is using Idebenone in boys with DMD, and if so, is there positive results, or side effects etc,
Kind regards
Maxine Strydom

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Hi Naomi ,

Thanks for sharing your experiences . Khush  is eligible for exon skipping 55 , not 51 for which clinical trials are under way , so instantly there is no question of  enrolling him into exon skipping trials.So this wont be a hurdle to start idebenone

 

It sounds from yr experience that idebenone is quite safe , I mean it does not have any side effects , so it would not be unreasonable and unethical to try it on small DMD kids .

 

Before joining this forum some two/three weeks ago I had been discussing abt idebenone with my son's pediatric neurologist , since i was  aware abt santhera , however Drs do not think or are not ready to think  anything "out of box " .

 

Since idebenone is approved for use in FA disease they do not want to look beyond that if it could have any other application as well considering risk vs benefit ratio.

 

Since many parents with lack of computer and internet know how first go to the Doctors, they never come in touch with  large networks of DMD patients and parents on the blogs

 

So to convince the doctors and indirectly help others as well  can we show the docs some documentary tests that idebenone is beneficial for DMD kids if taken in  early stage of the desease . .

 

As what I have untill now to the best of my abilities  understood abt this disease is that it deteriorates with usage of muscle cells and satellite cells   . When these cells break CPK enzyme is discharged in the blood stream , so in initial phase of the disease CPK levels go up and this graph then moves down when the patient slowly moves towards the  terminal stage of the disease as there are very few muscle cells in the body to be wasted at that stage ,so CPK level naturally falls down .

 

In Joshua's case when he was 6 yr old ( when u started him on idebenone )  have u tested his CPK levels before and sometime  after treatment with idebenone ? If so pls share the result so i can punch my neurologist with that report .

 

Any other test like EMG or muscle charting will also help .

 

Even when i contacted Santhera for importing idebenone for my son they informed me that Dr's prescription would be required for smooth movement in the customs of both the countries .

 

Does Kirkman or smart nutrition ( from whom u seem to be buying )  require any such prescription or they can deal differently with this problem

 

Have a great week ahead

 

Rgds Ambrish

 

 

 


Joshua's mom said:

Hi Ambrish,

 

Idebenone would replace coQ10 since it is a "super" coQ10.  Although, as Ofelia has mentioned in the past, for your son to be eligible for exon skipping, idebenone is not allowed to be used because of conflicts. If you do want to start Idebenone, I, personally, would wean him onto it, starting with 150mg and working your way up. Joshua is taking 12mg of Deflazacort and 300mg of Idebenone daily.  We will soon bump up the Idebenone again.

 

When Joshua started Idebenone, within a month, or less, he was; more energy with daily activity; more cognitively aware; his legs wouldn't become so hard and were more easily massaged; physio was easier (We didn't tell the physiotherapist he had started a new supplement and received a phone call from them regarding seeing and feeling a drastic difference.).  Within 6 months he stopped using the Gower's Movement. 

 

Before he started Idebenone, he did the 6 minute walk test with dramatic differences before and after increases.  You probably read that earlier.  Like I said before, treat it like a medication and work your way up.  If you can, do the 6 minute walk test before starting, after, and after each increase.  Ask questions no matter how complicated or simple they may feel.  It's your son's life!

 

Naomi

 

Ambrish Kapadia said:

Hi Naomi ,

 

It's very informative to read yr posts. Idebenone seems to be really working good for  little Joshua. My little one is  4 yrs 4 mts old and currently weighs appx 37 pounds = 14.5 kgs , He was diagonised with DMD when he was 18 mts old in November 2008 , He has 52 to 54 as his missing exons and is eligible for skipping of exon 55 .

 

When he turned 2 yrs we started him on various natrural supplements( dosages are what he takes now, Were less when we stared  )  as under

 

COQ10 - 120 MG - 1 capsule at noon daily
Lecithin 1200 mg - 1 Capsule at noon daily
Wheat germ oil - 340 mg - 1 capsule at noon daily
Vitamin E 400 IU = 268 mg - D- alpha tocopherol - 1 capsule daily at noon
Calcium - 300 mg - I tablet at noon daily

 

Below taken in the evening or night before bed  daily

Magnesium - 32.5 mg - I tablet , with magnesium orotate - 500 mg in same tablet
Vitamin B12 - 1000 mcg
Selenium - ( as selenium yeast -  50 mcg ) - 1 capsule
Children mutivitamin chewable tablet - 1

All above purchased from  a UK based company - www.HealthAid.co.uk except selenium which is bought from Alltech USA - www.alltech.com  , www.Sel-Plex.com

 

We started above supplements for Khush when we came across this site and also exchanged some emails with Kathleen Hanson mentioned there .

 

http://www.doctoryourself.com/dystrophy.html

 

I read many +ve comments and experiences abt idebenone . How can I start it for my son , I mean what dosage can be safe along with some  theurepatic benefits expected soon . We would like to keep him out of steroids ( considering side effetcs ) as long as possible

 

Have a nice week end

 

Would appreciate your comments at earliest

 

Rgds Ambrish ( from Mumbai - India )

Joshua's mom said:
150mg may not do too much for your son, but ween him up to amount you want him on.  Treat supplements like you would a medication.  Joshua was 6 when he started with 150 then moved up to 2 x 150 6 months later.
You do need a prescription for Catena from Santhera.  You don't need one for idebenone though.  If you are in need of more site info regarding idebenone, or even DMD, you can e-mail me & I can send you my saved links.  Joshua's neurogeneticist was the one who suggested idebenone a couple years ago.

Thanks Naomi

Yes pls inform yr email id

Rgds Ambrish


Joshua's mom said:

You do need a prescription for Catena from Santhera.  You don't need one for idebenone though.  If you are in need of more site info regarding idebenone, or even DMD, you can e-mail me & I can send you my saved links.  Joshua's neurogeneticist was the one who suggested idebenone a couple years ago.
Hi, I was wondering if you could send me any info you have.  my neurlogist said last week that yes to put my son who has severe BMD on it either idebenone or CoQ10 900-1000 mg day.  I was going to order it from Smart Powders.  my friend who's son has fredereicks ataxia, was in that study, gets it from smart powders, have you all heard of smart powders?  she says it helps her son alot.  my email is smartscribe@sbcglobal.net   Thanks so much.

Joshua's mom said:
You do need a prescription for Catena from Santhera.  You don't need one for idebenone though.  If you are in need of more site info regarding idebenone, or even DMD, you can e-mail me & I can send you my saved links.  Joshua's neurogeneticist was the one who suggested idebenone a couple years ago.

has anyone experienced stomach aches with Idebenone? what stomach protector do you guys give to your son´s, I think too many pills a day can cause some irritation of the stomach, please let me know.

Juan is taking 600mg Idebenone daily..Kirkman`s

thank you.

JP.

Hi Juan ,no stomach aches with idebenone,but possibly the steroid causing the tummy ache? My son has digestion issues any way which some duchennes boys have and i removed all processed foods.My consultant recommended Lewis takes 10mg omezaprale at bedtime to help with tummy aches as a result of excess acid from defalzacourt,but i would like to find something more natural for that.I have been looking at de-ionised water but not got that far.Also find that i give idebenone before breakfast and steroids after breakfast works ok,Clare

 

thanks a lot Clare!!!
Hi my name is Rob from NYC.  My son Michael has Duchenne and we are thinking of using Idebenone.  We would like to find out more info.  Please let us know.  Cell # 917-443-5384 and email is Robcap(mm@aol.com.  Thank you.

Joshua's mom said:

Joshua has been using Idebenone for 2 years now.  He is 8 years old and just graduated to a bigger bike.  We did the 6 minute walk tests before he started, 222, after 6 months of a single dose, 397, and after 1 year of a double dose, 577.  He hasn't used the Gower's in more than a year.  His respiratory is normal and his school academics are now normal.  Physiotherapy became easier for the physiotherapist, and we almost lost our school bus because Joshua doesn't need to use the lift at all anymore.  We still have it only because of the extra entrance steps.

 

Naomi

The email is robcap9MM@aol.com

Joshua's mom said:
When Joshua was only on steroids, he did use the Gower's Maneuver.  After approximately 6 months on Idebenone, it slowly started to disappear.  After 1 year of a double dose, it's gone.  The specialists wrote a letter to the Cochrane Review classifying him as 'normal', with no DMD trademarks.
Joshua had bad stomach cramps before we started Idebenone.  Since we now make most everything we eat from scratch, the tummy issues have dissipated.  We live by the rule; "If you can't read it, don't eat it" when it comes to ingredients of the foods we eat.

Hi all,

 

I just received an e-mail from Joshua's neurogeneticst regarding dosage of Idebenone.  This is what he responded:

 

"I would recommend 450mg per day. Either 150mg three times a day or 450 all at once. The studies used both 450 and 900

but since 900 costs twice as much I am still recommending 450. 900 is definitely safe. Hope this helps."

Hi,

Thank you all for answer for Idebenone. I order this product today and  I will give my soon 450mg per day.

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