Good morning, all. For anyone who was anxious to know about the results of the CoQ10 study that was concluded at the end of last year, I apologize for my delay in posting. We talked to the neurologist at the Lahey Clinic on Tuesday. It's disappointing.
The doctor, for whom I have great respect, indicated that there is still some data being sifted and that further details may be forthcoming, but the basic statement is that the study produced no statistical evidence that CoQ10 helps to slow the progress of PSP.
She would not say, however, that the benefits of CoQ10 aren't real - only that they are were not sufficient, in the 60 patients involved in the study (presumably half of whom had a placebo) to alter the statistical measures. In the end, she recommended that my guy carry on taking it, because the progress of the disease for him indicates that something may be helping. Like everything with PSP, it seems that what works for one might not work for another - the progress is so individual. The only downside to taking CoQ10 is the expense - and that is not insignificant, of course.
This is a difficult and disappointing result, of course. We had hoped for a definitive answer, but have decided, for ourselves, for now, to reject the definitive answer we were given and go with the ambiguity instead. We may change our minds, but he is going to carry on taking it, because false hope is better than none. (Irrational? Yep!)
I am sorry, everyone, not to have better news, but on we go. Best wishes to all. Easterncedar
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Hi, Jillann - A small supplement may be exactly right for you. It's pretty clear that no one can say what, if any, dose might be good. I'm thinking my guy will probably cut back from the aggressively high dose he's been on. Love and peace, Easterncedar
Dear easterncedar
Thank you for keeping us informed about the results of this CoQ10 study. It appears to show the same results as other trials with CoQ10 (and with the latest trials in Parkinson's that show no benefit in slowing the progression).
While mild and short lived improvements have been noted in a couple of studies, it's benefit in any neurological condition like PSP has to be little or none. The complex nature of PSP/CBD (etc) with respect to numerous brain cell mechanisms that have "gone wrong" (many years before symptoms show) would indicate that supplements and current medications are unlikely to stop or modify the disease progression.
I know of one person who has the "best science" (I have ever seen) with respect to administering a regime of supplements (along with exercise and other programmes) for CBD. There seems to be evidence of some "slowing" down of their condition, but many of their symptoms still worsen. Individuals will see different results with their supplements etc, some will be real but mild and temporary, others will be placebo responses, others will see nothing happen.
Should one continue taking CoQ10? It's an individual choice (perhaps to be discussed with a neurologist). It's quite tolerable and has some neuroprotective and general antioxidant health benefits anyway. So, if the price is not too inhibitive, keep using it. Even keeping PSP sufferers as "healthy" as possible, is a valuable tool. The disease may progress a bit more rapidly after events like "infections".
(Sadly, sellers of CoQ10 still quote old studies from 2002 that seem to indicate some benefit in Parkinson's. They ignore the more recent studies that have shown no benefit).
Thanks, Strelley, for adding those important details. I wouldn't want our decision to keep on taking CoQ10 to gloss over the important point that the study does NOT support that, although I also am glad to think that the general health benefits might offer some justification. Our GP takes it to offset what he believes is the damage statins may do. It's all very complicated, and the knowledge you so generously provide is an invaluable gift to this community. Thanks again. All the best to you and your wife. Easterncedar
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