Should people facing Huntington’s disease take creatine and other
supplements to relieve or prevent symptoms?
I do.
I saw HD inexorably destroy my mother’s ability to walk, talk,
and care for herself. She died eight years ago this month. I tested positive
for HD in 1999 and since then have worried daily about when it will strike.
There is no treatment to slow HD’s devastation of the brain. So
I’ve been open to taking supplements that might help.
In early 1996, just shortly after learning of my mother’s
diagnosis, I started taking coenzyme Q-10 (Co-Q), a vitamin-like
substance found throughout our bodies and seen by researchers as a possible way
to help remedy the energy deficits suffered in HD.
In 2004, when Dr. LaVonne Goodman introduced a “treatment now”
regimen and clinical trial of safe supplements that had shown promising results
in animal testing, I jumped at the chance to participate. I was the only
presymptomatic individual in the small, three-year study, run under the
auspices of Dr. Goodman’s Huntington’s Disease Drug Works (HDDW).
Starting in 2005, I introduced the supplements into my diet in
steps. I worked up to a daily routine in which I took 75 grams of trehalose, a
sugar that seems to help the brain clear cellular debris;
600 mg of medical-grade Co-Q; two g of omega-3 oil; two g of blueberry extract;
and ten g of medical-grade creatine. The trial paid for and delivered the
supplements.
The trial did not show significant improvement for any of the
symptomatic participants. “The
only thing that appeared to be helpful was trehalose,” Dr. Goodman said in a
February 9 phone interview. Today, almost a decade later, the supplements
remain medically unproven to affect HD.
Nevertheless, scientists still think that trehalose, Co-Q, and
creatine might still provide help in treating HD. Since the end of the HDDW, I
have continued to take all of the supplements, spending about $2,000 per year.
In fact, several years ago, relying on medical advice, I roughly doubled my daily
intake of creatine to about 20 g.
I get semi-annual blood tests to monitor potential kidney damage,
which creatine can cause. I also drink plenty of water throughout the day to
prevent dehydration, which can occur at doses higher than 10 g. Creatine also
can cause weight gain.
Am I wasting money and endangering my health?
I don’t think
so. A few years ago, one of the doctors at the local Huntington’s disease
clinic told me to stay on the supplements, observing that the combination of
substances might be helping to delay my HD onset. I inherited the same degree
of mutation as my mother, but, at 54, have passed the age of her onset.
The yin-yang of supplements
Whether others in the HD community should take creatine and other
supplements is an individual choice ideally made in consultation with a doctor.
During our interview, the Seattle-based Dr. Goodman reviewed the
pros and cons of taking creatine.
She cautioned against taking high doses of the substance, because more serious side effects occur at higher dosage, and urged people to consult a physician before
starting any supplement.
She stressed that people need to understand the “yin-yang”
involved in the decision to take supplements.
“Yes, you want to take care of yourself,” Dr. Goodman said. If
they do nothing else, supplements can at least furnish a “very important”
placebo effect and the prospect of hope, she said.
The placebo effect is a “real” phenomenon, she observed. “If you
could bottle it, it would be great.”
However, taking supplements also reminds asymptomatic gene
carriers of their risk, she added.
More importantly, people’s use of supplements could also obstruct
the path to other, potentially far more promising treatments, she said.
The benefits of supplements “need to be counterbalanced with the need to test promising new drugs, or we will never have better treatments for Huntington’s,” she explained.
Interfering with clinical trials?
“There are so many competing interests here,” Dr. Goodman
continued. “We all want to believe that (creatine) is helpful, because it’s
available, and we can take it, so why not do it, we say. This is what I said
with HDDW trials. Well, yes, but it needs to be measured. Otherwise, we’re
going to know nothing more than we did.”
“It is important for people to know that if they take these
things, they can’t be in clinical trials at the same time. We deplete our
clinical trial participant base, which is going to impede progress for finding
better treatments. There’s the yin-yang. And people need to hear both.”
However, Dr. Goodman noted that individuals could do both:
to become eligible for a clinical trial, individuals could clear the
supplements out of their system so that they don’t interfere with the
measurement of the tested drug’s effects, then resume the supplements after
completing the trial.
I would stop taking my supplements in order to qualify for a
trial, although until the most recent creatine trial (see below), practically
every trial has targeted only symptomatic individuals.
Dr. Goodman underscored the need to treat creatine and all other
supplements as “medicines.” Supplements should meet USP (U.S. Pharmacopeial Convention) standards, she added. The HDDW
website contains information on supplement safety. Further information on
supplements is available at Huntington’s Disease Lighthouse Families.
(I buy my creatine from my local GNC outlet but plan to search for a better grade of the product.)
(I buy my creatine from my local GNC outlet but plan to search for a better grade of the product.)
All drugs, including FDA-approved ones, produce side effects and
can affect individuals differently, Dr. Goodman noted.
Regarding creatine, she concluded: “If it’s not watched closely,
it may cause more harm than good.”
A historic trial
People in the HD community became excited about creatine as a
potential treatment after Harvard University’s online news service on February
7 published an article titled “Nutritional supplement slows onset of Huntington’s.”
According to the article, a team of researchers based at the
Harvard-affiliated Massachusetts General Hospital had finished a historic Phase
II clinical trial that produced MRI scans showing evidence of the slowing of
brain atrophy (shrinkage) in HD gene carriers who have yet to manifest the
classic symptoms of the disorder. Sixty-four people took part.
Participants took up to 30 g of creatine per day.
According to Steven Hersch, M.D., Ph.D., the trial, called
PRECREST (Creatine Safety and Tolerability in Premanifest HD), was a “huge
step” for three reasons – including its impact on a separate creatine trial for
symptomatic patients called CREST-E
(Creatine Safety, Tolerability, and Efficacy in Huntington’s Disease)
“One, it’s the first therapeutic trial that has tried doing
prevention,” Dr. Hersch, the study’s senior author and a long-time HD
researcher, said in a February 11 phone interview. “Two, because we created a
design that let anybody participate who’s at 50% risk, as well as those who
have tested positive. And three, the imaging finding increases the probability
that CREST-E will show a clinical benefit.”
Dr. Steven Hersch (photo from HDSA website)
Currently in progress and still recruiting participants, CREST-E
is a phase III trial – the final step before drug approval (click here to learn
how to enroll).
The PRECREST administrators recruited untested at-risk individuals
who were then tested for the purposes of the trial as well as individuals who already knew that they have the HD mutation. However, those who entered the study untested did not
receive their results, which were only known to the statistician. Thus, they
avoided the potentially traumatic psychological aftermath and remained
protected from genetic discrimination.
“The ethical challenges for those
recruiting and conducting trials include how to accommodate nontested at-risk
individuals while preserving a noncoercive choice regarding genetic testing,”
states an editorial about PRECREST in the March 2014 issue of the prestigious
journal Neurology, adding that “unequivocal changes” occur in the
brain of presymptomatic individuals “15 to 20 years before conventional clinic-based
diagnosis.” An article on PRECREST by Dr. Hersch, lead author Herminia D.
Rosas, M.D., and nine other collaborators appears in the same issue.
For these and other reasons, 90
percent of at-risk individuals choose not to test, Dr. Hersch explained.
The MRI changes and other data from PRECREST will eventually be
assessed in CREST-E, Dr. Hersch explained. CREST-E is also doing MRI imaging. With nearly 600 participants so far, it will be large enough to show whether the benefits shown in PRECREST images correspond to a significant slowing of HD.
Avoiding false hopes
As with many news articles about clinical trials and other
scientific experiments, the Harvard report’s headline, which claimed the
supplement slowed the onset of HD, inaccurately reflected the researchers’
results as reported in the actual scientific article.
“While slowed atrophy suggests that
creatine could slow preclinical progression, the potential clinical impact of
these findings on delaying the onset of HD is unknown and must be defined by an
efficacy study designed to measure it,” the Neurology article states.
Nor can the public buy the
high-quality creatine used in the study, as it’s prepared specially for
clinical trials.
“I don’t want
people to take from this study that they ought to go running out and take a
bunch of creatine or take it at these doses,” said Dr. Hersch. “Even though the imaging benefit is very exciting,
we don’t know what it means clinically. It doesn’t provide the evidence that
would lead me to recommend that people take it. The high doses that we used
should also not be used without medical supervision.”
As noted in the Neurology article, some PRECREST
participants suffered stomach upset and diarrhea caused by the creatine. About a
dozen people had to drop out of the study.
Regarding the study’s clinical significance, Dr. Goodman offered
an assessment similar to that of Dr. Hersch.
The widely read HD research website HDBuzz.net also weighed in.
“How much hope and how my hype?” an HDBuzz article asked.
While recognizing the importance of the study, it pointed out that the causes
and effects of the slowed shrinkage in the brains of the PRECREST participants
need further study.
“It’s possible that creatine causes
HD brain cells to bulge or swell without making them healthier,” it states.
“Swelling like that could produce false optimism and might even be harmful.
That’s not something this trial can tell us either way, because the patients
weren’t followed long enough to see whether creatine treatment delayed the
onset of symptoms.”
“The participants in PRECREST
who took creatine but did not have the HD mutation did not experience any brain
swelling, so this is an unlikely explanation for our findings,” said Dr.
Hersch. “Including and treating these subjects was very unusual. However, we did
so to allow us to answer questions like this.”
Awaiting the Holy Grail
“HD researchers face a major
challenge in finding a treatment for the pre-manifest,” I wrote in 2011.
“It’s really the Holy Grail not only for HD, but also for other neurological
diseases such as Alzheimer’s in which brain damage occurs many years before
symptoms appear. Ideally, researchers want to design medications that will
completely prevent these diseases.”
The Neurology editorial used the
term “Holy Grail,” too, in noting how the PRESCREST study “investigates a potentially neuroprotective agent designed
to delay disease onset.”
The word “potentially” is key.
As Dr. Hersch explained, the PRECREST findings about slower
shrinkage “suggest” that creatine provides a benefit, but they don’t permit
researchers to say anything about delayed onset of symptoms in presymptomatic
individuals or a longer lifespan for patients.
It remains for the CREST-E Phase III trial to produce similar
brain scan results – and an actual effect on symptoms.
“If CREST-E shows efficacy in slowing down the disease in people
who are symptomatic, I would think that most people would think that you may be
slowing down the disease in people who aren’t symptomatic yet as well,” he
said.
Until treatments become available, presymptomatic gene carriers
like me will continue to face the extremely difficult decision about whether to
take supplements.
I’m grasping at creatine and other supplements in the hopes of delaying onset until researchers succeed.
I’m grasping at creatine and other supplements in the hopes of delaying onset until researchers succeed.
8 comments:
I am at risk and have taken creatine on and off for sports/performance reasons. I realize how expensive it is. If you don't mind me asking, approximately how much do you spend on supplements for HD? Thanks
Have you considered therapeutic marijuana? http://www.psychologytoday.com/blog/all-about-addiction/201102/thc-huntingtons-disease-cb1-receptors-important-more-drug-use
I am at risk and take a few inhalations every evening for the same reasons you take supplements. It took me a while to forget my preconceptions about marijuana and realize that all of the drugs and supplements are chemicals like marijuana. It also helps me relax and not overthink my situation.
Thanks for your foray into the bewildering maze of supplements. I find myself wishing for some authoritative voice that would say to either take them or not, but of course science is not there yet.
@ "I am at risk" I spend about $2,000 annually on supplements. I linked the supplement names to vendors. Thanks for reading and commenting on the article.
Thanks your your information Gene. I recently found your blog through a link from newsHD.net. I am at risk but decided not to get tested, primarily because there is not much I can do if I did have it. Now I am giving that a second thought. $2000 is a lot of money if I don't have it, but its peanuts if I do have it and these supplements can give me a few more quality years.
Where/how do you get medical grade creatine? I have only seen the GNC and Twin lab buody building stuff. The recent article about creatine showing promise for HD made me wonder about the quality of the body builder stuff.
I don't know how to get medical grade creatine. The creatine from the CREST-E and PRECREST trials is not available to the public. GNC brand is not USP. I was at Whole Foods tonight; the creatine they sell is made in a GMP (good manufacturing practices) facility in Germany. It's more expensive than GNC. It's important to use supplements that don't have impurities. Anybody can get e-mail updates of my blog. Send me an e-mail at curehdnow at earthlink do net.
curehdnow at earthlink dot net
Did you takie it as tablets? 2 grams of omega3 means real 2 gram of drug (4 * 500 mg for example of suplement) or more but you calculate bioavailability? the same concerning creatine? Currently it is heard that 1000 mg of Co-q is desired. Could You comment? thanks jakbysiedalo
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