Parkinson's Disease Tulip


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Old 05-14-2007, 08:22 PM #1
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Confused Coenzyme Q10 Does Not Improve Parkinson's Disease Symptoms

Coenzyme Q10 Does Not Improve Parkinson's Disease Symptoms

Source: JAMA and Archives Journals
Date: May 14, 2007
http://www.sciencedaily.com/releases...0514174229.htm

Science Daily — Small doses of the antioxidant coenzyme Q10 appear to increase blood levels of this naturally occurring compound in patients with Parkinson's disease, but does not improve Parkinson's disease symptoms, according to an article that will appear in the July 2007 print issue of Archives of Neurology, one of the JAMA/Archives journals.

Parkinson's disease is a neurodegenerative disorder characterized by tremors and difficulty with walking or other movements. The biological mechanisms underlying the condition are not fully understood, but researchers suspect a malfunction of the mitochondria, parts of the cells that help convert food to energy, according to background information in the article.

Coenzyme (CoQ10), an antioxidant sold as a dietary supplement, is also involved in mitochondrial processes. "Because of these functions, CoQ10 has attracted attention concerning neuroprotective actions in neurodegenerative disorders linked to mitochondrial defects or oxidative [oxygen-related] stress, such as Huntington's disease and Parkinson's disease," the authors write. Previous studies indicate that high doses of CoQ10 (1,200 milligrams) may slow the deterioration associated with Parkinson's disease.

Alexander Storch, M.D., of the Technical University of Dresden, Germany, and colleagues conducted a randomized clinical trial of a 300-milligram dose of CoQ10 in 131 patients with Parkinson's disease who did not have changes in motor functions and were on stable treatment for their condition. Those assigned to the treatment group took 100 milligrams of CoQ10 three times daily for three months, followed by a two-month "washout" period. The researchers assessed Parkinson's disease symptoms before treatment began, each month during treatment and again after the washout period. Blood tests were performed at the beginning of the study, after three months of treatment and after the washout period.

A total of 106 patients completed the full three months of the study--55 in the CoQ10 group and 51 in the placebo group. The compound was well tolerated overall, and the percentage of patients who experienced adverse effects--including viral infection, diarrhea and hearing loss--did not differ between the two groups. Blood levels of CoQ10 increased in the treatment group from an average of 0.99 milligrams per liter to an average of 4.46 milligrams per liter after three months.

"Although we demonstrated a significant increase in plasma levels of CoQ10 toward levels observed with high doses of standard CoQ10 formulations in Parkinson's disease and other disorders, our study failed to show improvement of Parkinson's disease symptoms and did not meet its primary or secondary end points," which were changes on scales that measured Parkinson's disease symptoms and their effects on physical and mental functioning, the authors write. "Our study further demonstrated that 300 milligrams per day of nanoparticular CoQ10 is safe and well tolerated in patients with Parkinson's disease already taking various antiparkinsonian medications."

"Since we did not find symptomatic effects of CoQ10 in Parkinson's disease, our study does not support the hypothesis that restoring the impaired energy metabolism of the diseased dopaminergic neurons leads to symptomatic benefits in Parkinson's disease," the authors conclude. "Future studies will need to explore the protective effects of CoQ10 at the highest effective dose (equivalent to about 2,400 milligrams per day of a standard formulation) over a long treatment period and in a large cohort of patients both sufficient to clearly define the protective potential of this compound in Parkinson's disease."

Arch Neurol. 2007;64doi:10.1001/archneur.64.7.nct60005).

This study was supported by a grant from the Deutsche Parkinson-Vereinigung eV (German Parkinson Association), Neuss, Germany, and MSE Pharmazeutika GmbH, Bad Homburg, Germany. The co-enzyme Q10 and matching placebo were formulated and packaged without charge by MSE Pharmazeutika.

Note: This story has been adapted from a news release issued by JAMA and Archives Journals.
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Old 05-14-2007, 10:26 PM #2
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Default What an incredible waste of money (RANT ALERT)

First of all, I do not advocate CoQ10 because it is so expensive and I feel there are cheaper routes.

But this "study" has to be one of the greatest wastes of scarce funding I have seen yet. Consider:

1) CoQ10 is, to my understanding, touted as a neuroprotective NOT as a symptomatic reliever.
2) It is supposedly a high-dose and longterm benefit. So why did this group decide to do a tiny dose and 90 days study?
3) And they chose test subjects who were stable and had no motor problems and did not alter their medication? What did they look for, sudden leaping of tall buildings?

Of course there is a need for further study. "Throw money!"

JAMA published this drivel? The editor must be self medicating again.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-15-2007, 01:07 AM #3
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Default and............

Didn't the previous two studies conclude that the optimum dosage per day for PWP was 1200 milligrams?

Also isn't one of the main claims for CoQ10 that it can boost energy levels, help ease the terrible fatigue that some of us suffer with PD. Yet amazingly no measure of this very important aspect appears to have been made.

My wife is a school teacher (runs a specialist unit for dyslexic children) she works long hours and very hard and despite being healthy gets very, very tired. She only takes 60mg of CoQ10 per day but is convinced that it makes a significant contribution to her energy levels and that it makes her feel less mentally tired. She keeps trying to get me to try it but I have had so many problems with horrible drug side effects that I need to build up my courage first (god that sounds pathetic). Have even imported shedfulls of the stuff from the US.


An interesting (very short, lol) paste from PD Pipeline web site:

The missing ingredient in the development of new therapies is the voice of the patient."
Quote by: Perry Cohen,
Project Director


Isn't this the point you keep making 123?


Strikes me therefore that it may have been more relevant to have measured energy level changes at the lower dose, but to look for functional improvements based on past info was ludicrous at the dosage level they used.

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Old 05-15-2007, 03:33 AM #4
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Default Yes, and more yes...........

I have NEVER heard a PWP say that they noticed a HUGE difference in symptom reduction with CoQ. I tried 600mg for about three months with Zippo, nada effects. This alone is one tiny opinion so it's meaning is moot, but give a PWP 30mg of Ritalin, or 600mg of l-Dopa and an immediate symptom reduction is seen; it's just not sustainable at "wash out", nor does repeated dosing seem to halt or reverse your "scores", we always see progression and maybe even quicker progression caused by toxicity from constant receptor "tweaking".
We don't know if we are any "better" than we would have been over time by attempting to quantify the effects of anti-PD drugs. To me , the only way of doing this is by taking daily PET F-dopa scans of at least 200 "dosees" against 200 "controls" and trying to find that many PWP who are able to participate in such testing would eat up billions of bucks that we don't have. An expensive, probably unworkable paradigm for what, the results of the study of ONE compound. I can't even imagine it.
What we need are fast, inexpensive, non-invasive, new paradigms for compound testing. Tests that show undoubted ability to give high sustainable activity in symptom reduction. Repairing the dopamine transporter is probably NOT going to be found in small molecule therapy, but instead in the realm of invasive surgical intervention.
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Old 05-15-2007, 06:24 AM #5
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Default for what it is worth

The only thing I have found thus far that produces symptomatic relief for me (and the reason that the expensive CoQ10 hasn't enticed me) is the combination of acetyl-l-carnitine and alpha-lipoic-acid. Forty-eight hours and I see the difference in either starting or stopping it. Most reassuring for me is that it is repeatable. Now, I know, I know. I am intentionally omitting ldopa etc.

The purported effects of the combo are via action on mitochondrial function as are those of CoQ10.

With the possible exception of the fatty acids (fish oil etc), everything else seems to be a longer term leap of faith.

Has anyone else found any alternative supplements that provide undeniable symptomatic improvement in, say, a week or less?
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-15-2007, 09:11 AM #6
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Default

I have never purchased COQ10 after 18 years with PD. That should explain my feelings on the subject.

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Old 05-15-2007, 11:02 AM #7
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Thumbs Up berries & supplements

I do take coq10 and hope it's neuroprotective. It was never going to provide symptomatic relief.

Quote:
Originally Posted by reverett123 View Post

Has anyone else found any alternative supplements that provide undeniable symptomatic improvement in, say, a week or less?
I don't think it happened in a week or less, but since I've begun eating dark berries (blueberries & blackberries) AND taking berry extract supplements, my neuropathic pain has virtually disappeared. I'd suffered from this pain for 4 years, and for me it's nothing short of miraculous to be virtually pain free these days (ok I still get a twinge on the odd occasion, but that's all )
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Old 05-15-2007, 05:34 PM #8
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Default ginko has

produced a noticable effect for me within a week. it improved my short term memory and mental energy. i aloso get a good effect from a raft of anti-oxidants, c, e, bioflavinoids, coq10, berry extract, etc. it is expensive however i think nutrition is vital. ive only been dx last october and am trying everything in the hopes of delaying the use of pharmacueticals and their attendant side effects.
in the past couple weeks two people have asked me about me being stiff and slow i told them i had parkinsons, ojne knew what it was the other didnt.
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Old 05-15-2007, 06:47 PM #9
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Default oyster

beware of pill fatigue. define a core group that you can stand to take for a very long time and be ready to toss the rest on the days when you just can't stand to look at another pill. been there.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 05-15-2007, 09:40 PM #10
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Default coq10

in aug 04 when husband first diagnosed, neurologist,MDS he consulted recommended coq10@1200 mgm/day. there was noticeable difference within one week of taking coq1`0 at this dose--less stooped posture, less "frozen" facial expression, recovery of his sense of humor. husband also reported "feeling better" and less fatigue. It may be comparing apples to oranges since we feel my husband's PD is related to his having taken a lipophilic statin, lipitor. statins deplete the body of endogenous coq10, so in his case, supplementing with it was an attempt to replenish the body's stores of coq10.
on the other hand, there are many studies showing lowered coq10 levels in platelets and serum in all patients with PD--these results and the theory that PD was the result of mitochondrial dysfunction were what prompted Drs. Beal and shults to undertake the coq10 study reported in 2002.
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