A randomized clinical trial of high-dosag... - Cure Parkinson's

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A randomized clinical trial of high-dosage coenzyme Q10 in early Parkinson disease: no evidence of benefit 2017

Bolt_Upright profile image
32 Replies

COQ10 is not in my stack. Should it be? I think there is some benefit to not having things that don't help in the stack. On the other hand, maybe things don't work by themselves but work in combinations, which makes these studies kind of moot.

This study was stopped due to futility pubmed.ncbi.nlm.nih.gov/246...

Results: The baseline characteristics of the participants were well balanced, the mean age was 62.5 years, 66% of participants were male, and the mean baseline total UPDRS score was 22.7. A total of 267 participants required treatment (94 received placebo, 87 received 1200 mg/d of CoQ10, and 86 received 2400 mg/d of CoQ10), and 65 participants (29 who received placebo, 19 who received 1200 mg/d of CoQ10, and 17 who received 2400 mg/d of CoQ10) withdrew prematurely. Treatments were well tolerated with no safety concerns. The study was terminated after a prespecified futility criterion was reached. At study termination, both active treatment groups showed slight adverse trends relative to placebo. Adjusted mean changes (worsening) in total UPDRS scores from baseline to final visit were 6.9 points (placebo), 7.5 points (1200 mg/d of CoQ10; P = .49 relative to placebo), and 8.0 points (2400 mg/d of CoQ10; P = .21 relative to placebo).

Conclusions and relevance: Coenzyme Q10 was safe and well tolerated in this population, but showed no evidence of clinical benefit.

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Bolt_Upright
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32 Replies

Look in to ubiquinolBetter form

Bolt_Upright profile image
Bolt_Upright

Also found this study Randomized, double-blind, placebo-controlled pilot trial of reduced coenzyme Q10 for Parkinson's disease

pubmed.ncbi.nlm.nih.gov/260...

This seems to show that ubiquinol-10 does nothing for PwP that are not taking levadopa.

in reply toBolt_Upright

Good grief, I’m taking it for nothing.Dr. Brad Stanfield (YouTube) cited studies that anti-oxidants do pretty much nothing. That was in a video about sulphuraphane

kaypeeoh profile image
kaypeeoh

I take Q10 because I'm also on a statin.

park_bear profile image
park_bear

Useful for this:

Small Study Finds CoQ10 Effective For Relieving Orthostatic Hypotension, Including OH due to Multiple System Atrophy

healthunlocked.com/cure-par...

Bolt_Upright profile image
Bolt_Upright in reply topark_bear

That is certainly relevant! I frequently get lightheaded when I stand up (have since I was a kid).

chartist profile image
chartist

vs this:

secondopinionnewsletter.com...

Art

Bolt_Upright profile image
Bolt_Upright in reply tochartist

So... in the study those at 1,200mg had a 44% reduction in progression.

And Dr Frank says " I’ve been recommending a daily dose of 2,000 mg of CoQ10 to all of my patients with Parkinson's for several years now. How does it work?

Although I don’t have a double-blind, placebo-controlled study like these researchers, so far in many of my patients this dose has completely stopped the progression of the disease."

That's not very sciencey:

- All of his patients with PD for several years were told to take 1,200 mg COQ10.

- So far, in many of my patients, this does has completely stopped progression.

Number of patients recommended 1,200mg = X

Number of patients that have completely stopped progression = Y

For "completely stop the progression" to be true, X would have to equal Y.

But the phrase "in many of my patients" is stating that X is greater than Y.

:(

chartist profile image
chartist in reply toBolt_Upright

I take it to mean that like in most things PD, it works well for some and not so much for others.

Art

Parkinsonjisung profile image
Parkinsonjisung in reply tochartist

This... parkinsons is not 1 disease. Try it, it may work for your particular brand of parkinson

kevowpd profile image
kevowpd in reply toBolt_Upright

faculty.uml.edu/sgallagher/...

Despe profile image
Despe in reply tochartist

Art,

Thanks! Hubby takes Healthy Origins Natural UBIQUINOL 300mg ea X 2/D. Also, MDS at Mayo, Jacksonville, FL, suggested COQ10 1,200mg/D.

chartist profile image
chartist in reply toDespe

Despe,

A high dose Ubiquinol study in PwP would be really nice, but I'm not sure we will ever see that happen. In the meantime, people continue to test. Does your husband find benefit with his current dose?

Art

Despe profile image
Despe in reply tochartist

Hard to pinpoint, Art. Based on his MDS , Dr. Frank Shallenberger's and Silvestrov's link's recommendations/findings, I believe 600mg Ubiquinol is the right dose.

LAJ12345 profile image
LAJ12345

Ubiquinol is supposed to be better than coq10.You can have an organic acids urine test to see if you are deficient in coq10

static1.squarespace.com/sta...

“3-Hydroxy-3-methylglutaric (Vitamin Q10-CoQ10)”

sharoncrayn profile image
sharoncrayn

I guess in your haste to post something you overlooked this study by Shults.

from Shults et al 2002 Effects of coenzyme Q10 in early Parkinson disease: evidence of slowing of the functional decline....

Results: The adjusted mean total UPDRS changes were +11.99 for the placebo group, +8.81 for the 300-mg/d group, +10.82 for the 600-mg/d group, and +6.69 for the 1200-mg/d group. The P value for the primary analysis, a test for a linear trend between the dosage and the mean change in the total UPDRS score, was.09, which met our prespecified criteria for a positive trend for the trial.

A prespecified, secondary analysis was the comparison of each treatment group with the placebo group, and the difference between the 1200-mg/d and placebo groups was significant (P =.04).

sharon

in reply tosharoncrayn

Faster progression for the 600mg group than the 300mg group is not encouraging.

Mimer profile image
Mimer in reply tosharoncrayn

There are also some studies that indicates that the combination of Q10 and creatine could be beneficial for different kinds of mithocondria disorder in general. But also more specifically neuroprotective for PwP.

Combination therapy with coenzyme Q10 and creatine produces additive neuroprotective effects in models of Parkinson's and Huntington's diseases:

pubmed.ncbi.nlm.nih.gov/194...

"The combination treatment resulted in significant reduction in lipid peroxidation and pathologic alpha-synuclein accumulation in the SNpc neurons of the MPTP-treated mice. We also observed additive neuroprotective effects in reducing striatal lesion volumes produced by chronic subcutaneous administration of 3-NP to rats. The combination treatment showed significant effects on blocking 3-NP-induced impairment of glutathione homeostasis and reducing lipid peroxidation and DNA oxidative damage in the striatum. Lastly, the combination of CoQ(10) and creatine produced additive neuroprotective effects on improving motor performance and extending survival in the transgenic R6/2 HD mice."

But not only helping some lucky mice. The next one is a phase III study.

The Effect of Creatine and Coenzyme Q10 Combination Therapy on Mild Cognitive Impairment in Parkinson's Disease:

karger.com/Article/Abstract...

Results: After 12 and 18 months of treatment, the differences in the MoCA scores of the combination therapy and control groups were statistically significant (p < 0.05 at 12 months and p < 0.01 at 18 months), and the plasma PL levels of the combination therapy group were significantly lower than those of the control group (p < 0.01 at 12 months and p < 0.001 at 18 months). Conclusions: Combination therapy with creatine and CoQ10 could delay the decline of cognitive function in PD-MCI patients and could lower their plasma PL levels; therefore, this combination therapy may have a neuroprotective function.

There are also studies indicating that the combination has effect for different kinds of general mithocondria disorders.

eschneid profile image
eschneid

Been taking CoQ10 1200/1600 mg for most of my 14 years with PD and I am still advancing; although I did hold up very well for the first 12 years. I am 62, still respond well to c/l and mucuna which allow me to play basketball competitively and walk 3-4 miles or bike in basement 80-90 rpm daily. However, my windows for activity and living have shrunk from 4-5 hours to 2-3 the last 2 1/2 years.

Has CoQ10 helped my progression?

Like a lot of supplements we take, it's hard to know for sure, but I will likely stay with it for the stretch run.

Eric

in reply toeschneid

Can you please elaborate on “windows for living”

eschneid profile image
eschneid in reply to

cclemonade,By windows of activity/living, I just meant med doses don't last nearly as long anymore, off periods are more severe now and meds take a bit longer to work-so for social events that last long, like a party with food, it has become much tougher to stay on for the entire event w/out tremors and discomfort. Dosing and turning on is no longer seamless for me. When I am home, I don't mind shaking as I try to hold out for next dose. When out in public it's not fun and feeds off itself usually making it worse.

Eric

in reply toeschneid

Thank you for explaining. I’m 46 and recently diagnosed. I just tried macuna for the first time today. I’ve read here on HU that Citicoline can decrease off times. Perhaps that can be of help.

eschneid profile image
eschneid in reply to

cc... Thanks, recently started Citicholine and Niacin to extend on periods....too soon to tell.

in reply toeschneid

It’s absurd that with a drug this old that consistent and seamless dosing has not been figured out. My Dad has PD too and he relates

eschneid profile image
eschneid in reply to

So sorry about you and your dad both having this crud, that is really unfair. Hang in, maybe you bring good karma to the cure department.

Eric

silvestrov profile image
silvestrov

Several thoughts about ubiquinone/ubiquinol. First of all, as many have noted, the study used ubiquinone and unless specified, the majority of ubiquinone (and ubiquinol) is fat soluble. Meaning, unless you consume fat with this form of CoQ10, it will be inadequately absorbed. Here is a article about cancer and CoQ10:

USE OF CoQ10 TO TREAT MALIGNANCIES

"Dr. Judy suggests a way to improve the absorption of CoQ10 capsules into the blood stream. Put the capsules of CoQ10 in hot tea which melts them. CoQ10 needs fat to get improved absorption. Add a teaspoon of coconut oil preferably but butter will also work. Drink the tea warm or hot. "

newswithviews.com/Howenstin...

The good news is CoQ10 comes in water soluble forms:

Orally delivered water soluble Coenzyme Q10 (Ubisol-Q10) blocks on-going neurodegeneration in rats exposed to paraquat: potential for therapeutic application in Parkinson's disease

pubmed.ncbi.nlm.nih.gov/244...

sabinsa.com/newsletters-oct...

As Park Bear noted this animal model for parkinsonism uses the chemical paraquat and this model is not a model of idiopathic PD.

Also, water soluble CoQ10 is available online: swansonvitamins.com/swanson...

I am sure there are other brands online but here is one. I gave this form of CoQ10 to a friend with fibromyalgia, actually I made up a gift package of CoQ10, riboflavin, methylcobalamin/b12 - she is taking a proton pump inhibitor for GERD and PPI's deplete CoQ10, and methyl folate because methylfolate + methylcobalamin are good for anemia (which she has). Net result, she is feeling better. For those of you who know people with fibro, it is imperative to take CoQ10. I also gave her 400 mg of riboflavin which shows promise to act as a prophalaxis for migraines - which she has. pubmed.ncbi.nlm.nih.gov/152...

There is a second way to increase the absorption of CoQ10, by adding Bioperine/piperine to your 'stack'. Piperine is the nutrient in black pepper which gives it a pungent flavor. Piperine also aids in nutrient absorption. Here are the basics of piperine:

sabinsa.com/newsletters-oct...

Also, here is a Covid19 study with curcumin/piperine: bioperine.com/pressrelease/...

Finally, a video in which an Indian company combined piperine with the tuberculosis antibiotic rifampicin: youtube.com/watch?v=vK7PPh6...

Finally, here is a company which incorportates piperine with CoQ10 (ubiquinone): physiciannaturals.com/super...

And what do they say at the bottom:

"As the coQ10 is fat-soluble, it is best taken with a meal that contains oil or fat in order to facilitate its absorption."

As others have noted, this study stupidly uses ubiquinone and for those of you who have interest in the supplement, ubiquinol is the better than ubiquinone. Here is a 'old guy' study which checks blood status of coq10 after taking both ubiquinol and ubiquinone.

Ubiquinol is superior to ubiquinone to enhance Coenzyme Q10 status in older men

"The significant increase in plasma CoQ10 status observed after the 2-week supplementation suggested that ubiquinol appeared to be a better supplemental form to enhance the CoQ10 status than ubiquinone in older men."

pubmed.ncbi.nlm.nih.gov/303...

And the last time I checked, PD is a disease of people over 60.....usually. So CoQ10/ubiquinone PD studies are suspect for a number of reasons.

sharoncrayn profile image
sharoncrayn in reply tosilvestrov

slightly off topic...

" Park Bear noted this animal model for parkinsonism uses the chemical paraquat and this model is not a model of idiopathic PD. "

Retenone and paraquet are sometimes used, and don't be so sure that pesticides/herbicides are not part of the overall idiopathic model.

Developmental exposure to the pesticides paraquat and maneb and the Parkinson's disease phenotype

"Idiopathic Parkinson's disease (PD) is associated with advanced age, but it is still unclear whether dopaminergic neuronal death results from events (i.e. toxic chemicals) initiated during development, adulthood, or represents a cumulative effect across the span of life."

This study hypothesized that paraquat (PQ) and maneb (MB) exposure during critical periods of development could permanently change the nigrostriatal dopamine (DA) system and enhance its vulnerability to subsequent neurotoxicant challenges.

and from---

Rotenone, Paraquat, and Parkinson’s Disease

Results: "In 110 PD cases and 358 controls, PD was associated with use of a group of pesticides that inhibit mitochondrial complex I [odds ratio (OR) = 1.7; 95% confidence interval (CI), 1.0–2.8] including rotenone (OR = 2.5; 95% CI, 1.3–4.7) and with use of a group of pesticides that cause oxidative stress (OR = 2.0; 95% CI, 1.2–3.6), including paraquat (OR = 2.5; 95% CI, 1.4–4.7)."

sharon

in reply tosilvestrov

Informative. Thank you.

silvestrov profile image
silvestrov

Here is where ALL chemical parkinsonism studies started: openvault.wgbh.org/catalog/...

SELFMeder profile image
SELFMeder

I was told several years ago by a senior Mayo Neurologist to keep taking CoQ10 despite the disappointing results of this big study. He said the lack of control for people with different types of PD may have masked different effects for different PD types and possibly stages.

Farooqji profile image
Farooqji in reply toSELFMeder

How much are you taking

Bolt_Upright profile image
Bolt_Upright

And there are analogues (of which Idebenone is one) Coenzyme Q10 Analogues: Benefits and Challenges for Therapeutics ncbi.nlm.nih.gov/pmc/articl...

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