CoQ10 & time of day

[BUZZ1397]

I have been taking CoQ10 in the evenings, before bed actually. And I don't know how others take it how much and what time of day or anything. I never feel any effect from it. It was touted as good for metabolism for PWP. Who takes it in large doses and what is it's effect? I am taking 200 mg. What is your preferred schedule for it?

[grower]

I've also started taking it, same time and dose as you. No effect that I've noticed...

[Enidah]

When I first got diagnosed with PD over 3 years ago I started taking it, 1200 milligrams a day. I did that for several months never noticed any difference in how I felt with or without it and just eventually quit taking it. It's pretty pricey to take that much and I was not convinced of benefits nor have they been proven in any of the studies that have been done. Inconclusive.

[soup]

Research seems to show that the body counteracts excess antioxidants that you eat, acting to keep the levels in your body steady. So, if it is right, if your antioxidant levels are within normal ranges, you will not be able to increase it by eating more.

If it is low, perhaps it will help to take dietary supplements and perhaps those are where positive results have been achieved.

[Fenian5]

Six years ago, I was in a 2 year double blind study for COQ10. I had to take 2,400 mg/day. After 18 months I opted out because of increased tremors. ((participants had to not be on any Parkinson's meds ) The study showed that COQ10 had no effect on improving Parkinson's symptoms or slowing down the progression.

[Coblrman in reply to Fenian5]

There are two different kinds of coq10. what kind was in the study?

[Fenian5 in reply to Coblrman]

Sorry, I don't know which one I was on. I do remember each dose was a chewable wafer.

[AmmieM]

I took 1200 mg daily- 400 mg 3x a day with food. I didn't notice any difference while I was on it so I stopped. And saw my tremors increase. I was also on Mirapex. I am now off Mirapex and am working my way back up to 1200 mg

[BUZZ1397 in reply to AmmieM]

Following up on yoour tremor and CoQ10 effort, if you don;t mind. How are you and what has been the CoQ10 dose you seemed to benefit from if you do?

[NanCyclist]

Fenian5 is correct. Research shows no positive effect from CoQ10 except for those people who sell it. Nothing for PwPs.

[BUZZ1397]

Thanks for sharing your experiences

[Hidden]

Fifteen years ago my husband and I attended a Parkinson's Association Meeting. A man in attendance who was in late stage Parkinson's and having trouble walking said he started to take a very high dose of CoQ-10 (1200) and it was amazing how much better he could walk. I mentioned this to my husband's neurologist (my husband had recently been diagnosed with PD) and asked if I could give Q-10 to my husband. The Dr. said it couldn't hurt him but just to give him 400 mg. a day in the a.m. and that is what I have done all these years. Fifteen years later my husband is still walking, slowly, but still walking! Who knows why but as my husband's Dr. said, "it can't hurt him!" I know there have been trials done with Q-10 but I think the results have been not positive. Good luck.....

[silvestrov]

Buzz1397,

I too take 1,200 mg of coq10 (ubiquinone) and like the man with late stage Parkinson's (I don't have late stage Parkinson's) it helped me very, very much.

PD coq10 studies are all over the road with a 2002 study showing 1,200 mg slowed PD progression by 44% - a significant number. The 2011 followup study showed no such effect. Recently high dose ubiquinol (100 mg per meal = 300 mg) the reduced form of coq10, decreased off times for PD patients:

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

Results

"In Group A, total Unified Parkinson's Disease Rating Scale (UPDRS) scores decreased in the ubiquinol-10 group (n = 14; mean ± SD [−4.2 ± 8.2]), indicating improvement in symptoms. There was a statistically significant difference (p < 0.05) compared with the placebo group (n = 12; 2.9 ± 8.9). In Group B, UPDRS increased in the ubiquinol-10 group (n = 14; 3.9 ± 8.0), as well as in the placebo group (n = 8; 5.1 ± 10.3).

"

Conclusions

"This is the first report showing that ubiquinol-10 may significantly improve PD with wearing off, as judged by total UPDRS scores, and that ubiquinol-10 is safe and well tolerated."

prd-journal.com/article/S13...

So if ubiquinone does not work try ubiquinol - either way this supplement will do no harm and can only help you.

ISSUES ABOUT COQ10.

Most of the coq10 purchased is fat soluble meaning when you eat a meal you need to include a form of fat so the coq10 can bond to it and be absorbed by the body. If you have no fat in the meal it will limit the effectiveness of Coq10. I wonder what effect this issue has had with coq10 studies. With this sort of benign supplement their instructions are to only take it with a meal and not comment on the contents of the meal.

If fat does not agree with you you can purchase, at a higher price, water soluble coq10:

swansonvitamins.com/swanson...

If you used 100 mg per meal of the above supplement that means the 12.74 bottle with last 5 days....multiply that and you have a monthly expense of 76 dollars a month. Of course you could try 50 mg for each meal because this supplement is better absorbed you may not need to double up on it.

Beyond ubiquinone and ubiquinol there is PQQ and it has shown promise in multiple PD studies but it needs to be tested in a human trial:

Pyrroloquinoline quinone-conferred neuroprotection in rotenone models of Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/262...

Generate Fresh Mitochondria with PQQ

lifeextension.com/magazine/...

So those people decrying the 'end' of coq10 in PD studies are very premature, at best. Coq10, like methylcobalamin/B12 and, unfortunately, statins, are of Japanese origin and this is the place I expect to see a PQQ Parkinson's disease study. The following place is where the ubiquinol/PD study took place.

Department of Neurology, Juntendo University, School of Medicine, 2-1-1 Hongo, Bunkyo-ku, Tokyo 113-8421, Japan.

I hope this helps.

Rich

[12stargate in reply to silvestrov]

silvestrov

Good to have you back

Thanks for the information.

I am just learning about the mitochondria.

Very interesting to learn about.

Enjoy your day Rich

Eva

[BUZZ1397 in reply to silvestrov]

Howdy Rich

That 1200 mg level is that you and others have consmed w/o harm has encouraged me to take more and as you suggested w/fat. I think I'll spread some fat on a piece of toast and take 200 mg right now.

[silvestrov in reply to BUZZ1397]

Fat helps with absorption and I have been taking 1,200 mg for about 4 years. This supplement can only help and not hurt you. With no negative outcome it is a low risk gamble. Sure everyone reacts differently to coq10 but that is the nature of Parkinson's therapy.

[silvestrov in reply to BUZZ1397]

I am a big advocate for using Omega 3s because they have been shown to alleviate dyskinesia and are being tested with PD patients for this purpose.

I found an article which may interest you:

Oral omega-3 fatty acids treatment in computer vision syndrome related dry eye.

"This study demonstrates the beneficial effect of orally administered O3FAs in alleviating dry eye symptoms, decreasing tear evaporation rate and improving Nelson grade in patients suffering from computer vision syndrome related dry eye."

ncbi.nlm.nih.gov/pubmed/256...

I have taken 2-3 grams of omega 3s for years and this is much more than the modest amount used in the dry eye study.

[BUZZ1397 in reply to silvestrov]

The label of the salmon oil that I buy at SAMs, read 230 DHA, 180 EPA. I also am taking more than the study subjects. BTW on the subject of eye health, this morning I decided to risk increasing my daily green tea extract to 2 capsules because it improves my vision a bit, Thats 2 mg per pound of body weight. Thanks for the help Rich. BTW again I decided to change my schedule for CoQ10 from bedtime to during the day before meals. Thanks for the info about fat and CoQ10.

[silvestrov in reply to BUZZ1397]

My pleasure Buzz (great name),

I take 2 capsules of EGCG a day and have had no side effects. To counter balance any possible liver-associated problems by taking NAC, milk thistle and theanine - all good for the liver (and PD). I have no worries about EGCG because the people who had problems were (consistently) dieters who drank way too much dieters tea. I could not find any incidence of liver toxicity in athletes, clinical participants....who took EGCG/GTE in a encapsulated form.

[sterlingin]

CoQ10 is probably good for your heart and general health etc .. but its value for PD is not supported by the research. It's also expensive .... see following from MJFF

FoxFeed Blog

"Coenzyme Q10 Study Shows No Clinical Benefit"

Posted by Maggie McGuire Kuhl, April 04, 2014

Research into coenzyme Q10 (CoQ10), an antioxidant that supports cellular function, for treatment of Parkinson’s disease (PD) came to an end last week with the publication of a paper from the Parkinson Study Group. The authors reported in JAMA Neurology that their study of long-term, high-dosage CoQ10 treatment was halted prematurely because it showed no clinical benefit for PD.

Previous studies on CoQ10 were mixed: one Phase II trial showed slower functional decline with the compound, another found no beneficial effect. To set the record straight the National Institutes of Health sponsored a Phase III study. These latest results support that CoQ10 has no clinical benefit for Parkinson’s patients.

“Every trial for a potentially promising drug brings us one step closer to a possible cure for PD. Although the current results tell us that CoQ10 may not be the answer we were hoping for, we can look optimistically to a robust pipeline of therapeutic approaches now nearing or entering the clinic,” said Brian Fiske, PhD, vice president of research programs at The Michael J. Fox Foundation (MJFF).

MJFF did not fund the Phase III study of CoQ10, but did support blood sample collection from participants of the study for biomarker research.

ClubPD.com

[silvestrov in reply to sterlingin]

The above study you quoted used the oxidized form of CoQ10, ubiquinone, and not the reduced form ubiquinol or PQQ. Ubiquinone has a rather mixed history for PD testing and the research has just begun with PQQ and is under way for ubiquinol. Studies like the following couple ubiquinone with creatine and show that this combination has good therapeutic effect for PD:

Creatine Plus CoQ10 May Support Cognition in Parkinson’s Disease

The researchers stated, "Combination therapy with creatine and CoQ10 could delay the decline of cognitive function in PD-MCI patients and could lower their PL levels; therefore, this combination therapy may have a neuroprotective function."

ncbi.nlm.nih.gov/pubmed/257...

So the death nell for ubiquinone has not been written yet and the other forms are still being experimented with.

For anyone taking creatine, and this includes the supplement IMMUNOCAL (400 mg creatine), you should NEVER take it with any form of caffeine:

Caffeine and Progression of Parkinson Disease: A Deleterious Interaction With Creatine.

RESULTS:

Caffeine intake was not associated with the rate of progression of PD in the main analysis, but higher caffeine intake was associated with significantly faster progression among subjects taking creatine.

CONCLUSIONS:

This is the largest and longest study conducted to date that addresses the association of caffeine with the rate of progression of PD. These data indicate a potentially deleterious interaction between caffeine and creatine with respect to the rate of progression of PD.

ncbi.nlm.nih.gov/pubmed/263...

[12stargate]

silvestrov

So does this mean no coffee with creatine, or low doses ok?

Thans

[silvestrov in reply to 12stargate]

UNIVERSITY OF MARYLAND MEDICAL CENTER

Parkinson's disease

"People with Parkinson's disease have decreased muscular fitness, including decreased muscle mass, muscle strength, and increased fatigue. One study found that giving creatine to people with Parkinson's disease improved their exercise ability and endurance. In another study, creatine supplements boosted participants' moods and reduced their need for medication compared to those who didn't take creatine. More research is needed.

"Caffeine -- Caffeine may make it hard for your body to use creatine, and taking creatine and caffeine may increase the risk of dehydration. Using creatine, caffeine, and ephedra (now banned in the U.S.) may increase the risk of stroke."

umm.edu/health/medical/altm...

The use of creatine and caffeine has been controversial for years and the combination is used by weight lifters to build muscle mass but its safety has been questioned. Adding the PD/creatine + caffeine study to the controversy puts an end to the debate if you ask me.

Taking Creatine with Caffeine – bad or good?

Do not use caffeine while taking creatine;

Do not take vitamin C supplements when taking creatine (wow!);

Don’t drink creatine with a citrus juice;

Do drink your creatine supp. with a little bit of salt and sugar to maximize absorption.

pwnfitness.com/2013/04/12/t...

++++++++++++++++++++

The vitamin C creatine connection is new to me:

Vitamin C & Creatinine

"Creatine is a natural substance produced from amino acids in your body and used to supply energy to all of your cells, especially your muscles. Creatinine is the breakdown product of creatine, and it is excreted in your urine. Measuring creatinine levels in your blood serum and urine can validate suspicion of certain diseases, such as kidney failure and muscle wasting diseases. Vitamin C and certain drugs can alter creatinine levels, usually increasing them, which can lead to misdiagnosis."

I have to get back to work and this was a 'drive by' posting....I have much to do...

[kcc9993]

Please talk to your doctor about any supplements you take.

If you decide that CoQ10 is for you, you should know that CoQ0 has poor absorption. Therefore, it's best to choose one that is both water and fat-soluble which is better absorbed by the body than regular CoQ10.

(Source: ncbi.nlm.nih.gov/pubmed/?te....

[BUZZ1397 in reply to kcc9993]

Thanks. My cardiologist monitors my CoQ10 and I take the product he recommended, a ubiquinol. He also told me to not stop eating steak but to also eat fish. I believe he knows about the Parkinson's-creatine connection.

[kcc9993 in reply to BUZZ1397]

That's great!