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.
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.
This saves funds which can now be used to follow other paths.
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
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
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
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
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.
Hope this is of interest.
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
“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
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?
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?
...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............
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............
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
http://www.michaeljfox.org/living_viewpoints_newsInContext_article.cfm?ID=31
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.
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.
Smell the coffee 
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.
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.
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.
Kind regards, Butterfly.
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
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
Hi butterfly and Rico 
.....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
.....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
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
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