I've just read Santhera FAQ family friendly version.It is written in question no 4 that:
Currently, Santhera anticipates that the label sought will be restricted to patients who are not using
steroids and who have signs of impaired respiratory function. Regulatory agencies often base the label
upon the available data at hand and it should be kept in mind that all of the data collected in the
idebenone phase III trial is from participants who were age 10 and older at the time. Santhera does not
anticipate that a boy’s ability to walk will be a restriction.
My question is that what about our kids who are taking steroid ? How many kids are there who are not taking steroid.
I agree with Rupjani. I personally have been taking steroids since age 16 and I am now 39. I have been diagnosed with a more severe form of Beckers and have been trached for over a year now, vented at night. I would think I would benefit from Raxone.
Would that mean I can't take it?
It is already proven that idebenone can help at least strength increase, those who are buying it from online and using it as supplement have experienced it. Santhera's idebenone can be a safer version than the idebenone we are buying online.