Last month, the National Institutes of Health and the National Institute of Neurological Diseases and Stroke announced that they were halting the Q3 trial, a Phase III study of Coenzyme Q10 (CoQ10) for the treatment of early PD. To gauge the role of CoQ10 moving forward and to discuss what this might mean for those currently taking the metabolite, MJFF published a News in Context Q&A with Ira Shoulson, MD, one of the principals on the study, as well as MJFF staffer Mark Frasier, PhD.

Additionally, Dave Iverson led a podcast on CoQ10. He spoke to two patients currently taking CoQ10 and who plan to continue. Plus, a physician weighs in on how he will advise patients going forward.

Debi

NIH Coenzyme Q10 Study Halted Due to Lack of Evidence that It May Effectively Treat PD
http://www.michaeljfox.org/living_vi...icle.cfm?ID=31


CoQ10 Podcast with Dave Iverson, KQED
http://www.michaeljfox.org/newsEvent...ails.cfm?ID=27

No use wasting time over what went wrong. it doesn't work. i'm interested in spending time on what does. Thanks for a thorough review debi.

I also am more interested in meds that "work," but I believe this trial was halted because the researchers felt that neuroprotection could not be proven, therefore making the studies "futile." Specifically the announcement from NINDS said
" . .. the results of a preplanned interim analysis showed that it would be futile to complete the study because it would be very unlikely to demonstrate a statistically significant benefit of active treatment over placebo."

I think taking any type of antioxidants would be helpful. I take 5 mg a day of Selegeline (Eldepryl) for that very reason - it's doing something. It once said Selegeline was neuroprotective, but now the jury is still out.. While I am waiting, however, for the true answer to be proven, I'll take it. (Noting that studies NEVER prove anything beyond a shadow of a doubt)

We are all wondering when something really different will come out, especially those of us who feel we are "running out of time." If I were a doctor I would recommend my patients continue using CoQ10 but not at as high a dosage as was recommended. (It's pretty expensive)

This is just my opinion, but I DO believe it has some neuroprotection properties.

The Parkinson Study Group had a conference call for interested patient advocates (arranged by PDF). We were allowed to ask questions and make comments. It was interestiing.

My usual bias concerning statins and the onset of PD: I am more than convinced that Lipitor therapy (10 mgm/day for 4 yrs) is causative in my husband''s onset of PD. He possesses 2 of the SNPs in the SLCO1B1 gene, the gene that codes the transport protein responsible for Phase II detoxification of statins, resulting in greatly increased plasma levels of statins for those who possess these SNPs. Statins cause an interruption in the pathway to production to coEnzyme Q10; numerous studies have substantiated decreased coQ10 levels in plasma, platelet and muscle tissue in individuals who take statins. Decreased CoQ10 levels have also been identified in PD patients, irregardless of their statin status (even those who have never taken a statin have decreased coQ10 levels). CoQ10 was the first parkinson related substance my husband took and his PD symptoms were greatly impacted (reduced)from just this supplement. He is still aware when he misses a dose. It is my belief that due to the SNPs in the gene, he had toxic levels of statins, resulting in exaggerated depressed CoQ10, along with all the other "collateral" substrates depleted by statins (which the industry labels "pleiotropic"). Thus he is in that "subset" of patients who DO benefit from the use of CoQ10. Since the possession of one of these genetic mutations is not considered in any of the studies, this group will not be identified. and they are not.

Just because they halted the study does not make this topic a closed case.

The phase 2 study showed statistically significant (and fairly impressive) benefits from CoQ10 supplementation. We know nothing about how this study was conducted nor what the variables were, so who knows why they didn't see any statistically significant results.

Finally, i do believe that not everyone's PD is not instigated by the same root cause, so it's possible that CoQ10 may help some PD folks and not others.

Just my 2 cents.

madelyn, so you are saying that it provides symptom relief? That's different , it is too expensive to use for most of us. Thanks for the information.

Just another reason for the MJFF funded PPMI biomarkers study - until then, we are just shooting in the dark --------

Hi Paula, Initially, there were several symptoms impacted by the use of CoQ10; fatigue was the symptom he felt was most positively affected by the use of this supplement. Prior to taking coQ10, he was napping for 3 to 4 hours/day and going to bed at night by 7PM. He was a multi tasker who required less than 6 hrs/sleep a night before the statin. My husband's tremor also lessened in frequency, and the PD "mask" disappeared for a couple of years. He felt less internal tremors, also. It is the intensification of internal tremors now which he notices when he misses a dose. Again, I feel coq10 helped him because he had taken statins, all the while unable to metabolize the drug correctly, leaving greatly increased, toxic plasma statin levels. CoQ10 is just one of the substrates depleted by statin use. For those with the identified SNPs, I would guess all these substrates are grossly depleted. I have no real opinion about the utility of supplemental CoQ10 for those who have not/do not take a statin and suffer with PD. There exists debate about anti oxidants becoming pro oxidants with excessive use. I am unable to decipher/understand if any of the information is meaningful since few real studies are done on non patentable substances such as coQ10 or other anti oxidants. Not a very helpful answer, I know. I do know a couple of disease specific foundations have negotiated lower prices for coQ10; one of them is the United Mitochondrial Disease Foundation. One needs to belong to qualify for the discount, or at least that was the case a couple of years ago. Have not researched this aspect since, though will make myself do so now. madelyn

Thank you Madelyne for your post which sheds light on this muddled topic. Personally, I have been taking NAC, Alpha lipuic acid, curcumine, ubiquinol, vitamins A, D, E and resveratrol for over 4 years.
In the meantime, my main symptom which is tremor continued to progress slowly reaching an annoying level forcing me to start minimum dose of sinemet plus muccuna for a year now.
My justification for spending good money on vitamins and antioxidants is animal research which showed benefits of these antioxidants to slow PD.
Recently however, a number of articles have surfaced in the media, which claim that antioxidant pills are not only useless but also harmful.
They explain that our bodies use an extremely complex system to keep a delicate balance between oxidants and antioxidants and both of them are necessary. The worrying thing is their claim that taking over the counter antioxidants may disturb in a negative way this delicate balance.
See below:
http://en.wikipedia.org/wiki/Antioxi...ase_prevention

Hi
My dad, 76 yrd old has just been diagnosed with early stage PD. he is a remarkable active guy and we were surprised by this diagnosis.
reading your case reminds me of his medical condition. he had a bypass surgery 11 years ago and was put on statin 10mg ever since. we have gone back and forth on toxins generated by statin and the risk of stopping it. however his neuro has given him coenzyme q10 in tablet form, along with vitamins. the coq10 composition is 100 mg.
i see that many pd patients are taking 1200 mg of coq10. I am interested in knowing the dosage your husband is taking for it to be effective. i would want my dad to take a higher dosage if it has proven this effective
please do respond...any more info or ideas you can throw my way is most appreciated.

Thanks
Shy