Idebenone
I am looking for a place to buy idebenone. I do not believe it's available in the US yet, but my sons doctor said I could try the internet. I have done that, but want to be sure I buy the supplement from a good, reputable source. Any suggestions?
Replies to This Discussion
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Permalink Reply by Julie Gilmore on
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Try getting in touch with Takeda Global research: (main office in Japan, but this is for the North American research branch)
pr@tpna.com
They have done studies on the use of it in various neurodegenerative conditions, and as they also are associated with Abbott Laboratories, and a couple of other subsidiaries, they should be able to point you in the right direction.
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Permalink Reply by Jenny Garofalo on
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Ok not to sound naive??? what is the difference between Idebenone and COQ10?
Jenny
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Idebenone is a synthetic antioxidant with properties similar to that of CoQ10.
The biggest difference is that in patients that suffer episodes of hypoxia (which our boys can sometimes be prone to) Idebenone has been found not to release free radicals whereas CoQ10 can. (part of the autooxidation process.)
It has been tested in a few neuromuscular conditions, but not DMD - however if families are using CoQ10 is it worth having a look at Idebenone as an alternative...
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Permalink Reply by MicahsDaddy on
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I believe they are talking about phase III trials for DMD.
here's a link to Phase II: ClinicalTrials.gov
Here's a link to a Q&A with Santhera Pharmaceuticals: Santhera Q&A
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Permalink Reply by Janine on
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Jenny,
http://internaf.org/ataxia/Idebenone_desc.html
Here is a link that might answer your question.
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Permalink Reply by Tina on
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Hi Heidi,
I ordered our son's from this website -
http://www.smart-drugs.net/JamesSouth-idebenone.htm
I'll give him 150mg twice a day.
Tina
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Permalink Reply by Tonya on
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Tina,
How did you know what dosage to give your son? Do you know other parents that use Idebenone for their sons? Do you know if taking Idebenone with the other supplements will work together? I give my son, Vitamin D3, CoQ10 and Protandim. We have ordered some Juven, but haven't recieved it. Tonya :-)
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Tonya
Our son is 7 years old and weighs 60 lbs. He currently takes:
12.5mg of prednisone
200mg co q 10
one caltrate a day
two 1,000 iu's of vitamin d a day
one whole protandim a day ( half tab in the am and half tab in pm)
one green tea extract a day
Over the next month or two I plan to make the following changes with his regimen:
1). Stop the co q 10 - begin 150mg idebenone twice a day ( I have already ordered this) I'll give him 150mg a day to start with to make sure he has no reaction to this supplement.
2). keep regimen of green tea, protandim, vit d, and caltrate
3). Begin 500mg of glycine, and 2 packs of juven a day ( still have to order)
4). request Rx change from prednisone to deflazacort. Will see doc tomorrow to get Rx.
5). Want to discuss losartan.
We use to give creatine and glutamine to our son but stopped since Dr. Leshner felt as though there wasn't enough robust in strength noted from taking them. He left it up to us. From a recent study, it appears idebenone will help the heart so I wanted to get this on board first. I will stop the co q 10 when it arrives.
We have witnessed no loss in his strength, so this is not the reason for us changing his routine around... we are just hoping to witness a longer period of maintenance of strength or slight improvement in strength from the new changes.
I'll keep you posted as he gets on with all of this stuff. It's all a plan in my head. No concrete evidence any of it will work. Always review any med/supplement changes with your son's doc before changing anything.
Tina
Links:
http://www.idebenone.info/
http://www.ncbi.nlm.nih.gov/pubmed/12589194
http://www.ncbi.nlm.nih.gov/pubmed/10564180
http://www.ncbi.nlm.nih.gov/pubmed/17237794
http://myjuven.com/productinfo.html
Deflazacort Use in Duchenne Muscular Dystrophy: An 8-Year Follow-Up
§Department of Pediatrics, Division of Neurology, Sainte-Justine Hospital, University of Montreal, Montreal, Quebec, Canada.
Received 2 May 2007; accepted 12 November 2007. Available online 13 February 2008.
Data reported here were collected over an 8-year period for 79 Duchenne muscular dystrophy patients, 37 of wh om w ere treated with deflazacort. Mean length of treatment was 66 months. Treated boys stopped walking at 11.5 ± 1.9 years, compared with 9.6 ± 1.4 years for untreated boys. Cardiac function was better preserved with the use of deflazacort, as shown by a normal shortening fraction in treated (30.8 ± 4.5%) vs untreated boys (26.6 ± 5.7%, P < 0.05), a higher ejection fraction (52.9 ± 6.3% treated vs 46 ± 10% untreated), and lower frequency of dilated cardiomyopathy (32% treated vs 58% untreated). Scoliosis was much less severe in treated (14 ± 2.5°) than in untreated boys (46 ± 24°). No spinal surgery was necessary in treated boys. Limb fractures were similarly frequent in treated (24%) and untreated (26%) boys, but vertebral fractures occurred only in the treated group (7/37) (compared with zero for the untreated group). In both groups, body weight excess tripled between the ages of 8 and 12 years. All untreated patients grew normally (>4 cm/year), as opposed to only 15% of t reate d boys. Deflazacort improves cardiac function, prolongs walking, and seems to eliminate the need for spinal surgery, although vertebral fractures and stunted growth occur. The overall impact on quality
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sorry... I also meant to include this link which I found helpful to understand the difference between co q 10 an idebenone.
http://internaf.org/ataxia/Idebenone_desc.html
This part especially caught my eye since my son has inattention issues.
"Treatment with idebenone was found effective on memory, attention, and orientation and in slowing down the natural progressive worsening of the disease."
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Hi Tina,
I'm sorry it's taken so long to get back to you, I'm still figuring out this site. Anyway, thank you so much for all of the very useful information. I would love to hear from you after you have started with the idebenone to see what your thougths are. Did you talk with a doctor about the dosage and would I talk with a naturalpath? My son is only about 27 pounds and is not quite 2 1/2 years old. We too have ordered Juven, but hasn't arrived yet. Thanks again!!!!
Tonya
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Permalink Reply by Mindy Cameron on
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I just received some idebenone from a British company called International Antiaging Systems. The stuff arrived in a packet with a Germany postmark. The customs declaration is from Britain. The bottle itself says "made in China." Has anyone ordered idebenone from this company? This is one of my first forays into the supplement world and so far I am finding it frustrating. I am going to take this idebenone myself for a few weeks in an attempt to see if it's safe, and then I will start my 7-year-old, 60 pound son on a very small dosage. Comments are welcome!
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Hi Mindy
My son is 7.5 years old and he has been taking 150mg of idebenone for over a month now without any side effects. We purchase the supplement from this link - http://www.idebenone.info ( see my above post).
Someone asked me this question:
This may sound crazy, but how do you know that this product is genuine and not some junk ? Are there more "well known" sources that have some credibility........sounds very risky to be putting into our sons, unless we have someone who has perhaps vetted the company and products in a more reliable way ?
This was my response:
The company I purchased idebenone from were the first company in the US to sell idebenone in 1999, doctors are referring their patients to them for a number of serious medical conditions like Friedreich's Ataxia and Leber's hereditary optic neuropathy.
Most of the Friedreich's Ataxia patients are children.
Feel free to email me if you have any concerns.
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