Bidding Adieu To Coq10: A Long-Studied Supplement Proves Ineffective Inwards The Struggle Against Huntington’S Disease

One of the commencement too most-studied potential treatments for alleviating the symptoms of  Huntington’s affliction has proved ineffective, leading researchers to halt a clinical trial of the substance.

Along alongside many others inwards the hard disk drive community, I take away maintain taken the readily available supplement coenzyme Q10 (CoQ10). As I wrote inwards a Feb article virtually the fence over unproven supplements, the lack of a handling to boring HD’s destruction of the encephalon led me to take away maintain several of these substances inwards the hopes of staving off attack (click here to read more).

As reported August xiii yesteryear the hard disk drive scientific discipline portal HDBuzz.net, the National Institute of Neurological Disorders too Stroke (NINDS) too the Huntington’s Study Group (HSG) stopped the CoQ10 clinical trial this calendar week because of lack of pregnant results.

“It seems clear forthwith that coenzyme Q10 does non move for HD,” the HDBuzz article stated. “Looking back, the trunk of evidence used to create upwardly one's heed to show CoQ10 inwards human patients was fairly limited. In fact, recent efforts to repeat the observation that CoQ10 makes hard disk drive mice amend take away maintain failed.”

According to HDBuzz, the trial known every bit 2Care, was the “largest ever therapeutic trial for Huntington’s disease.” It had enrolled 609 participants alongside early on hard disk drive symptoms from 48 sites throughout North America too Australia. Half received a placebo, land the other one-half took 2,400 mg of CoQ per twenty-four hr menses – 4 times the total that I take away maintain taken.

My supplements, including coenzyme Q10 at far left (photo yesteryear Gene Veritas)

A natural substance, CoQ10 is flora inwards all of our cells too helps to plough nutrient into chemic energy. Starting inwards the mid-1990s, scientists hypothesized that CoQ10 powerfulness assist alleviate the serious loose energy deficits flora inwards the brains of hard disk drive patients.

In roughly other recent clinical trial, CoQ10 was also shown to take away maintain no practice goodness inwards stopping early on Parkinson’s affliction symptoms.

After consulting alongside several hard disk drive specialists, I take away maintain decided to halt taking CoQ10. Given the demonstrated lack of efficacy against HD, I run into no argue to continue.

Also, although cheap over-the-counter varieties of CoQ10 exist, I take away maintain taken a medical-grade shape that has terms me $1,000 per year. (Health plans practice non encompass supplements.) I tin job that coin to salve strain on the line solid unit of measurement budget and/or pass it on services such every bit psychotherapy that assist me create practice alongside my province of affairs every bit an hard disk drive factor carrier.

For now, I volition proceed to take away maintain other supplements every bit detailed inwards my Feb article: trehalose, creatine, omega-3 oil, too huckleberry extract. However, I also excogitation to carefully rethink this strategy inwards consultation alongside my neurologist too hard disk drive specialists. (For a 2012 overview of primal supplements too hard disk drive yesteryear doctor LaVonne Goodman, delight click here.)

A procedure of elimination

“While the results of this study are disappointing to all of us – particularly the people alongside hard disk drive who faithfully took the drug …  every twenty-four hr menses for every bit long every bit v years, too subjected themselves to blood draws too neurologic exams too questionnaires too surveys every bit purpose of their participation inwards the study – they are nonetheless rattling important,” Martha Nance, M.D., the manager of the Huntington’s Disease Society of America (HDSA) Center of Excellence at Hennepin County Medical Center inwards Minneapolis wrote inwards an electronic mail answer to my asking for comment. “Knowing that coenzyme Q10 DOESN’T move volition spare the hard disk drive families of today too tomorrow the expense of the supplement, too the imitation promise that it created.”

Dr. Martha Nance: trial resultant ends "false hope" virtually CoQ10.

“Nobody said that finding a cure for hard disk drive would live easy, but I intend that hard disk drive patients too families should live enormously proud of their efforts inwards this study – a commitment that tin solely assist us alongside the futurity trials too challenges ahead,” Jody Corey-Bloom, M.D., Ph.D., the manager of the HDSA Center of Excellence at the University of California, San Diego, wrote inwards an e-mail.

The procedure of elimination inwards scientific too clinical enquiry is a slow, meticulous, but necessary purpose of the bespeak for treatments. Only i inwards 10 clinical trials results inwards an effective drug. Understanding what doesn’t move expands scientists’ knowledge of the disease.

“We tin forthwith divert the resources that were going to live used for the 2CARE study to other studies alongside a amend peril of working,” the HDBuzz article pointed out. “In fact, it’s probable that the adjacent yr or ii volition run into the launch of several trials targeting specific mechanisms underlying HD, rather than ‘generally beneficial’ compounds similar CoQ10.”

Added doctor Nance: “We are actively pursuing many other avenues inwards hard disk drive research, too promise that many people volition percentage the wonderful mental attitude of my patient (I volition telephone vociferation upwardly her Susan), who said: ‘So, doctor Nance, I'm deplorable that this i is over, but forthwith tin I enroll inwards roughly other hard disk drive enquiry study?!’”

Closing out a complex relationship

For me, the halt of the 2Care trial closes out nearly ii decades of a complex human relationship alongside CoQ10.

I commencement started taking an over-the-counter diverseness inwards early on 1996, only weeks subsequently learning of my mother’s diagnosis for HD. With a 50-50 peril of inheriting the factor for a devastating, incurable encephalon disorder that was inexorably destroying my mother’s personality too powerfulness to intend too walk, I grasped for whatever powerfulness furnish the slimmest of hope.

In the mid-2000s, I started taking a higher degree of CoQ10 along alongside other above-mentioned supplements inwards a study nether the Huntington’s Disease Drug Works program, which at the fourth dimension emphasized a “treatment now” approach for a community desperate for solutions. After the study ended, I continued to take away maintain the substances too paid for them out of pocket.

CoQ became purpose of my daily ritual. I broke upwardly the 600 mg chalky, yellow, sweetened CoQ10 tablet into 4 parts, which I took methodically at breakfast, lunch, too earlier too subsequently dinner.

Although I knew at that spot was no evidence virtually CoQ10’s efficacy, I believe it may take away maintain had a placebo effect. At 54, I take away maintain passed my mother’s historic menses of onset. Now whatever placebo lawsuit powerfulness take away maintain existed volition disappear. In my especial job of CoQ10 too the other supplements, however, an actual placebo lawsuit is scientifically unproven. In addition, scientists are getting closer to agreement the factors (such every bit a modifier gene) that trigger hard disk drive onset.

Throughout my journeying alongside CoQ10, I ever viewed it every bit peripheral at best. I believed that the best hopes lay alongside the potential remedies such every bit gene silencing aimed at the origin causes of the disease.

Knowing the complexity of HD, I knew that a dietary supplement such every bit CoQ10 provided no to a greater extent than than a sliver of hope.

As I bid bye to CoQ10 too the thought that it could delay onset, I’m i time once again forced to rethink how to hold upwardly inwards the grayness zone betwixt my genetic show resultant too the inevitable attack of an incurable disease. With scientific discipline every bit a guide, I'm adjusting what is essentially an endeavor at self-treatment.

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