Deciding for One
The issue of supplements is an important one in the HD community. While we are waiting for effective, clinically proven treatments, many people with the HD gene and at risk for HD have decided to take some of the supplements that are currently being clinically tested. These include creatine, EPA, and CoQ10. All three have been shown to delay onset and slow progression in the HD mice.
Do we know if these nutritional supplements will help people with HD? Not until clinical trials are over. First, people are different from mice. Second, the mice used in the studies so far are more of a model of triplet repeat disorders in general than HD specifically. Mouse models developed later are a closer approximation to HD. Third, there's no way to translate an effective dose for mice to an effective dose for people. In the creatine study for example, one level was only slightly effective, one dose was significantly effective, one was too high and harmful, and all of them would be unsafe for people at the percentages of body weight that mice can tolerate!
On the other hand, many people are reasoning that these supplements appear to be relatively safe, they are available over the counter, and they hope to 'buy time' by using them.
How can you get input from your doctor in making a decision about supplements? It is important to remember that a doctor is not very likely to advise you to take anything that hasn't been clinically proven. What we do in my family is turn the question around. "Is there any reason why I shouldn't take 2 grams of EPA [etc.] a day?" is a better question and will allow the doctor to discuss any potential risks or side effects.
Here's what my husband and I decided to do. Since he is a systems analyst and I'm a sociologist, this was not an 'expert' decision but a personal one. We looked at the HD mouse research and decided that creatine, CoQ10, and EPA were safe enough to roll the dice. He takes 5 grams of creatine, 120 mg of CoQ10, and two grams of EPA every day. We'll be disappointed if none of three are shown to be effective, but not sorry we made the effort. If one of these proves to slow progression, then we will be happy to have bought some time until a more effective treatment is available.
Everyone needs to make an informed decision for themselves. Here are some of the places I went to read about supplements.
The Hereditary Disease Foundation offers a great series of notes from researcher's workshops.
http://www.hdfoundation.org/workshop/200001Report.pdf
Fast Paths to a Cure Workshop has a discussion of the effect of the CoQ10 and creatine on the HD mice. See Page 6.
http://www.hdfoundation.org/workshop/200001Report.pdf
The HD Lighthouse is the best place to read about EPA and HD: www.hdlighthouse.org
A National Institutes of Health workshop on Omega 3 Fatty Acids was very helpful (EPA is an Omega 3 fatty acid):
http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html
I also did searches on Pub Med for medical abstracts. http://www.ncbi.nlm.nih.gov/PubMed/
Search under Huntington Disease (not Huntington's Disease) as well as CoQ10, creatine, and eicosapentaeoic acid (EPA).
Provided by Marsha Miller
Answers to this question can be found through these links:
- Eicosapentaenoic acid (EPA)
- OmegaBrite is a Fish Oil based supplement containing 1,225mg of EPA which has been show in early tests to reverse the damage caused by HD. More complete tests are planned. For more info check out The Lighthouse
- EarthSource
- CoenzymeQ10 (CoQ10) is a fat-soluble vitamin-like substance crucial to energy production in every cell in the body. It also functions as a strong antioxidant. CoQ10 is naturally present is small amounts in a wide variety of foods, and is synthesized in all tissue. CoQ10 helps convert food into energy. Test trials are currently underway to determine the effectiveness of CoQ10 in delaying the onset of HD.
