Trial of antioxidant Coenzyme Q10 is cut short


#1
You can find out more about the American Coenzyme Q10 clinical trial and why it has been stopped in the link below:

http://www.parkinsons.org.uk/about_us/news/news_items/all_news/coenzyme_q10_trial_cut_short.aspx

What are your views on Coenzyme Q10?

- Do you take Coenzyme Q10?

- Will you continue to?

It would be great to hear your thoughts.

#2
I don't take it, but I think is was sensible to cut the trial short.

This saves funds which can now be used to follow other paths.

#3
perhaps another avenue closed. but then more concentration on those left open.
have just about given up hope on stem cell within a reasonable timeframe.
what avenues are left?
gene therapy ???
would be interesting to have listed the most likely treatments with timeframes and issues

#4
Here are a couple more links about the study from the researchers and funder:

National Institute of Neurological Disorders & Stroke
http://www.ninds.nih.gov/disorders/clinical_trials/CoQ10-Trial-Update.htm

Parkinson Study Group
http://parkinson-study-group.org/docs/Clinical_Trials_in_Progress/QE3_Final_PSG_Post_May_27_2011_2.pdf

#5
I have been taking 1200mg of Q10 daily for 5 years following an earlier study of Q10 which showed some beneficial results, although the study was limited. I found I was more energetic and my Pd has not worsened very much over this period. I am taking 62.5 sinimet (x6 daily) and 12mg Neupro patches. As I feel the Q10 has had a positive effect I will continue to take it.
Hope this is of interest.

#6
Neuroprotection trials for PD are notoriously difficult to do - as was discussed at the PD World Congress in Glasgow last year. The effects can be subtle and PD's progression can be so variable between individuals, that you need to run a very large trial (many people) for a very long time.
“To achieve adequate statistical power, these trials will need to include thousands of patients.” (http://onlinelibrary.wiley.com/doi/10.1002/mds.20057/full) but the QE3 Phase III study, reported in this thread enrolled only 600 patients – although, admittedly, this was much larger than the original study by Shultz et al. ("Effects of Coenzyme Q10 in Early Parkinson Disease") that concluded “The adjusted mean total UPDRS changes were +11.99 for the placebo group, ... and +6.69 for the 1200-mg/d group. …... and the difference between the 1200-mg/d and placebo groups was significant (P=.04).”

This is sad news, indeed, but I will continue to take my Coenzyme Q10 until I've read the a detailed analysis of the complete data set (which the Principal Investigators are working on).

Jamie

#7
Sad news. I have been taking 200g daily for about 18 months. I think I will continue this and other supplements though. I have a pretty non-existent appetite these days and probably don't get enough nutrients from my diet. I can't remember the last time I actually felt hungry!

Taking up Jamie's point about the size of trials, I don't understand how a trial can really be viable unless hundreds, or perhaps thousands, take part. As Parkinson's has so many variables - one of which is the rate of progression - how can researchers spot a definate trend? How do researchers determine the minimum number of volunteers they need?

#8
...well I currently take 1200 mg per day, and intend to continue.

If the 'placebo' effect sometimes produces 25% to 30% improvement (in varied trials), if I believe it's doing me good it may well do so............

#9
Here is the Michael J Fox Foundation's view on the cancelled Coenzyme Q10 study:

http://www.michaeljfox.org/living_viewpoints_newsInContext_article.cfm?ID=31

#10
I currently take coenzyme Q10 and I find that it helps my parkinsons symptoms. If I run out of it my are not so good. I also have sessions of blue light therapy which also helps with my movement. My parkinsons is progressing quite slowly - I don't know whether this is a result of the Q10 and blue light.

I believe that my parkinsons symptoms were triggered by my first hip replacement. I noticed that my walking was effected in that I felt as if my movement was jerky and then I started with a hand tremor. Other people who had hip replacements said that their walking was fairly normal and not jerky.

#11
Smell the coffee :stuck_out_tongue:
I took co q10 when first diagnosed 4 years ago and my symptoms progresses almost imperceptibly. But 1200g of Kaneka was costing around £4 per day or £120 per month so I stopped a year ago. I started again recently and within days I began to smell coffee perfume and was even pleased to smell the shoe cupboard again! It's wonderful and surely a sign of neurological improvement?

I will now continue regardless of the research but would like to know more about the different formulations.
Also the PDS would do us all a great service by negotiating a wholesale deal with a manufacturer.
I have been taking rasagiline for 2 years and mirapexine for one year but have mild symptoms and no tremor.

#12
Thank you for that Elsie and Magmolly. Your experiences are interesting. If you pm krugen68 he will give you the info on a very reasonably priced source of CoQ10.
Kind regards, Butterfly.

#13
Elsie, 4 quid a day is very expensive. The CoQ10 Gels (Kaneka Q10) I ordered previously were 400 mg, in bottles of 150 Softgels and these cost me something like $84 (forget if this was AUD or USD price) - at the time FX rate was 1AUD=1.05USD.

I second Butterfly's suggestion. krugen68 is the goto person, very knowledgeable, insightful and helpful. I now get my fill of COQ10 even cheaper.

Best wishes,
rico

#14
Hi butterfly and Rico :grin:

.....for those still interested in COQ10 I buy on ebay from a reliable source in the USA.
I pay $82 + $14 shipping( about £60) for 600 off 400 mg capsules (200 days at 3 per day)
PM me and I will happily send you the details

Peter

#15
Hiya

Thinking of taking this. Do I need to start off on a small dose and build up? What is the recommended dose you suggest?

Ta
MEL