Parkinson's patients have been taking creatine for years. It is a
protein produced by the liver combining the amino acids, arginine, glycine and methionine to store cellular energy. Some forms of creatine produce creatine phosphate which is an energy source for nerve cells. The theory is that the energy created will help prevent mitochondrial loss - cell death - which is characteristic of Parkinson's Disease, ALS, Huntington's and muscular dystrophies.Creatine is not a one dose fits all nor is it without side effects. Some of the side effects include dehydration, cramps, nausea, gas, diarrhea, renal stress and lowered blood pressure. Often lowered blood pressure will produce dizziness.
In 2000 an NIH sponsored trial of Creatine and the antibiotic, Minocycline, for ALS showed promise and suggested that further study was needed for Parkinson's. In that 12 month study patients received 200 mgs of minocycline and 10 mgs of creatine daily or a placebo. The minocycline was not well tolerated. The trial indicated the need for a study larger than 200 participants.
In March 2007 the National Institute of Health (NIH) - NINDS announced sponsorship of a phase III clinical trial to see if Creatine can slow the progression of PD. The trial is huge and will be enrolling 1720 people at 51 medical centers in North America. The trial is currently enrolling.
The first of a series of clinical trials from laboratory research to clinical trials under the heading of NIH Exploratory Trials in Parkinson's Disease (NET-PD), this trial will run between five to seven years. It is being led by Dr Karl Kieburtz of the University of Rochester and Barbara C Tiley, PhD of the Medical University of South Carolina in Charleston.
Body builders have been taking creatine for years to improve
exercise performance and build muscle. There have been studies which imply that creatine can improve mitochondria function and may function as an antioxidant to reduce oxidative stress. In PD lab mice creatine has already been demonstrated to prevent loss of specific cells.In the past I've taken different forms of creatine but have only noticed that I feel somewhat dizzy. I'm considering taking it again but in combination with at least CoQ10.
In this trial progression will be measured using the standard rating scales of quality of life, ability to walk, cognitive function and the ability to carry out other activities of daily living.
Who will be eligible: people diagnosed with PD within the last 2 to 5 years AND are being treated with levadopa or other medications which increase dopamine levels in the brain. Only half of the patients will receive creatine in this double blind study. The trial is using 5 mgs daily of creatine supplied by Avicena Group, Inc
People interested in participating in this study can obtain more information by calling 1-800-352-9424, emailing or visiting the clinical trial site at NIH. You can check for a nearby location at the NIH website.
Next we will look at creatine in combination with other additives including CoQ10.
references:
Press Release
The Minocycline-Creatine trial
Posts
I think This study is an important step. We are pleased to have so many sites participating in this study, which may help us move more quickly toward developing a therapy that could change the course of this devastating disease.
ReplyDeleteamino
I am quite dissapointed about the way this study is managed. This study is in year 5 of clinical phase 3, but no intermediate results are shown. Why is this ? By now, there must be some relevant information available. Based on that information patients all over the world should have the right whether they will consume creatine at own risk or not. PD is all about slowing down progression. Maybe you need 8 years of a clinical trial to get FDA approval, but that doesn't mean patients need to wait 8 years too to get preliminary results.
ReplyDeleteWhile it would be nice to know the trial early findings/results, there is a danger to that just as early polling results can skew the voting results of those who have not yet voted. While I feel the same way as anonymous, I am not sure that I am of the same opinion. This research is costly even with a basic product in trials...and it is probably considered intellectual property.
ReplyDeleteThat said, one post I was preparing before Google ceased to support Windows XP (my favorite fun OS) was/is about Steve's use of Pharmaceutical grade micronized Creatine Monohydrate which is available if you know where to look (google it or write to me). We saw an exciting partial return of balance in Steve's walk due to increased arm swing and shoulder engagement.
If taking this supplement, dissolve well in warm water or juice (NOT OJ) or even broth preferably in the morning.
One issue is dosage and that is where the Huntington's disease trial folks were very helpful in publishing their doses which could differ from the PD trials - I don't know since they aren't talking.
Steve began at 5mg and progressed to 10mg and then to 20mg. I know the HD trials used up to 40mg but they are in a controlled situation and closely monitored including kidney and liver function testing I would imagine.
One reason for the need to compare notes - as it were - is because that is the way we can be more proactive in our own treatment or the treatments of our loved ones.