Clinical trials empower patients to partner in managing their illness

My introduction to the clinical trial process came early on when my neurologist suggested I consider enrolling in the initial CoQ10 trial. The goal was to determine the safety and efficacy of high dosages of this dietary supplement for slowing functional decline in people with early, untreated Parkinson’s. I worried how CoQ10 would affect me initially and what adverse effects might occur years later. What if I received the placebo instead of CoQ10 and missed my window of opportunity to try a potentially neuroprotective agent?

I was surprised to learn that clinical trials are not intended to benefit participants (although they often do), but rather to help doctors find the best treatment for future patients. Still, after comparing the risks and benefits of CoQ10 versus existing treatments, I concluded that the potential upside of the study far outweighed the risks. Also, the trial design offered a better than average chance of receiving CoQ10, versus a placebo.

I completed the full 16 months of the trial with no adverse effects and no need to start on Levodopa. I attributed this to CoQ10 slowing my disease progression. With the approval of my neurologist, I started on the highest dosage tested (1,200 mg/day) and stayed with it ever since, despite the cost. Time will tell whether I’ve made a wise investment.

Trial results published in 2002 revealed that those who received the highest dose of CoQ10 “experienced 44% less decline in mental and motor function, and ability to carry out activities of daily living than those in the placebo group. Those who received lower dosages of CoQ10 (including me) did not do as well, but fared better than the placebo group.” (http://www.ninds.nih.gov)

In May 2007, results released for a trial with a shorter duration and a different target group and goal found CoQ10 had no “symptomatic” effect on patients with later-stage Parkinson’s already on levodopa therapy. This does not, however, rule out long-term protective or disease-modifying effects of CoQ10. This will hopefully be confirmed in the “QE3” trial begun this fall and continuing into fall 2011. (http://www.clinicaltrials.gov )

CoQ10 failed to live up to promise

More than a decade and several clinical trials after the initial CoQ10 study began, the long-awaited verdict is finally in: CoQ10 does not slow the progression of Parkinson's disease. The evidence is so overwhelming that researchers halted the QE3 trial early.

My husband calculated that we have spent $24,000 on massive doses of CoQ10. The horse we bet on not only didn't win, it didn't even place or show. I don't even want to think about all the things we might otherwise have done with that money.

My neurologist sees no reason for me to continue taking CoQ10, but seeing as how it is not harmful, she left the decision to me. I've cut my dose from 1,600 mg/day to 800 for now, as it is said to offer many other health benefits. My own personal experience is that it cures gum disease, though at a premium price.

Despite a disappointing outcome, my involvement in the clinical trial process has made me a more educated healthcare consumer and an active partner in managing my chronic illness. Would I participate in another clinical trial if it were appropriate for me? Yes I would, because we all know that the treatments we currently have don't work forever and even though my Parkinson's symptoms are well-controlled, I always hear the clock ticking down.

My neurologist assures me that many other promising therapies are currently being tested that may prove to slow progression or even cure Parkinson's. In the meantime, she tells me, exercise is my best weapon for delaying the disease.

Read Pdplan4life's brochure on clinical trials

clinical trials brochure part 1

clinical trials brochure part 2

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