By LaVonne Veatch Goodman, M.D.
This section focuses solely on research and observational data that support benefit of supplements and drugs that are available to Huntington’s people for use now. Though much information comes from animal model study, there is an increasing data stream coming from studies in human trials.
While experts can offer no definitive recommendation for any treatment in Huntington’s, many no longer discourage the use of several supplements that are in, or approaching human clinical trials.
HD experts have strong belief in the potential benefit of omega 3 fatty acids, coenzyme Q-10 and creatine. Otherwise, they would not be working towards turning each into an FDA-approved drug specifically for Huntington’s. Further, though there is no definitive evidence for specific dosing of supplements/drugs, research leading up to clinical trials gives clues for anticipated dosage of these supplements.
Because these and other supplements are already available, HD people can legally take advantage of expert clues and use these supplements now, before phase III trials that are needed for FDA drug approval.
There’s also another relevant loophole to consider: Drugs that are already FDA-approved can legally be used “off-label.” In other words, drugs that have been developed and approved by the FDA for one medical condition can legally be used for another. Minocycline is a good example. This antibiotic is mostly used for acne. But it is also showing promise in early trials of HD and other neurodegenerative disease.
Great care must be taken when choosing supplement products because quality is not regulated by FDA approval or any other government agency. However, there are privately run watchdog agencies, Consumer Lab (CL) and U.S. Pharmacopeia (USP), that perform accredited testing of supplements and drugs. Be absolutely sure that any formulation (brands and name products) chosen is Consumer Lab (CL) approved and/or U.S. Pharmacopeia (USP) approved. While both of these agencies perform accredited testing of supplements, Consumer Lab tests a greater range of products.
Make sure you see one or both of these labels on products you use.
More Expert Clues
It is rare to have expert agreement on any single issue, but all HD scientists believe that the best treatment will require combinations of different drugs. It is unknown which combinations will be best. But, based on standard medical practice in other (complex) diseases, and on published (and unpublished) HD mouse data, it may be best to use supplement/drug combinations that target different systems of the disease. Coenzyme Q-10 and minocycline, which target different physiological systems involved in HD, have worked better in combination (in mice) than either agent alone. Further, it may not be necessary to use two supplements that target the same disease system. Creatine and coenzyme Q-10, which both target bioenergetics, is an example.
Get a doctor. Even with relatively safe supplements and drugs: Educate yourself and your doctor before starting on one, or any combination of them. Supplements can have toxicity, and they can interact with other supplements and medicines. Blood tests may be required to assure safety, particularly when higher doses are chosen.
Don’t assume or expect that your doctor is familiar with the latest research on HD. Huntington’s is a rare disease, and many physicians, even neurologists, may have seen only a few cases. Be prepared to direct your doctor to the best information. Take a copy of HD Lighthouse fact sheets and/or any important supplement or drug information you have to your doctor’s visit for discussion. It’s more than okay for you to be an advocate for yourself.
Of course, given current levels of evidence, there is no certainty that the supplements and drugs covered here, even when used as suggested, will give benefit. But the evidence is now strong enough that it might be common sense to give them a try.
Promising Therapeutic Supplements and Drugs
The following printer friendly fact sheets provide information on only a few of the promising agents that may slow the progress of Huntington’s disease. Realize that this is a work in progress and is not complete. As more research and clinical trial information becomes available, it will be necessary to update old agents and add new ones.