Guest guest Posted August 12, 2006 Report Posted August 12, 2006 Hello all, Question: I heard about a new drug that they were working on sometime back called Avicena. I looked it up and sure enough there's a website www.avicenagroup.com and it's disease target is CMT. I've asked my doctor about it and he's never heard of it. I'm too cheap to go to a neuorologist (I also have issues dating way back) so I'd like to ask anybody that might know anything about this. Is it on the market? Has anybody used it? Quote
Guest guest Posted August 13, 2006 Report Posted August 13, 2006 This is my report of the Avicena and Creatine study that was done by CMT Dr. Chetlin. I was asked to write this study review by the President of HNF, I agreed and also interviewd Dr. Chetlin about it. Funding is currently (August 2006) stalled for future studies. My report is below for information and currently can be found under our FILES section under the " Research " category. ~ Gretchen Avenica, Creatine and CMT By Gretchen Glick 11/29/05 copyright TFHNFORG The Avicena Group, Inc., based in Palo Alto, California is a biotechnology company focused on developing products that improve patient's lives by regulating critical cellular energy processes. Two technologies have been developed; the first to address cellular energy modulation; and the second to address cellular energy transport. Efforts by the Avenica Group are focused on orphan drugs for neurodegenerative and neuromuscular diseases, such as CMT. Together with the Avicena Group, Drs. D. Chetlin and Laurie Gutmann West Virginia University School of Medicine have provided their results from a pilot study of a creatine compound, that demonstrated a significant increase in muscle size, as well as in the level of total muscle creatine concentration. Drs. Chetlin and Gutman were introduced to Avenica Group by Dr. Tarnapolosky of McMaster University in Hamilton, Ontario, Canada, who has completed substantial research in the use of creatine for CMT. Chetlin's team said these findings first indicated that treatment with the creatine compound may lead to increased muscle strength and increased aerobic capacity, as well as an overall reduction in the severity of disease symptoms. The compound used in this study was creatine monohydrate and was supplied by the Avenica Group. Creatine is a naturally occurring biochemical that is necessary for immediate energy metabolism. It is a derivative of three amino acids: arginine, glycine and methionine. ONLY CMT PATIENTS were used in this pilot study. According to Dr. Chetlin, lead researcher, " although the use of creatine demonstrated some promise as a nutritional supplement intervention for CMT, the strength-training exercise protocol we used appeared to be more effective than the supplement itself. " Dr. Chetlin added " most of the patients in this study had CMT 1A. " Chetlin contined by stating that " CMT is probably the most enigmatic of all the neuropathies and predicting creatine's effectiveness in CMT is inadvisable because the disease expresses itself in highly variable fashion, even within the same subtype. " This means it is still unknown how creatine supplementation would effect types other than CMT 1A. When asked if muscle strength and aerobic capacity could be increased in persons with CMT, and would those who do not exercise now be able to engage in exercise programs after supplementation with the creatine – Dr. Chetlin replied " The answer to this question is not known. However, it is unlikely that creatine alone would " prepare " a person for exercise. One of the big problems we discovered with our patients was that many led a sedentary lifestyle, exposing them to increased risk for coronary artery disease. Like other inactive populations, we believe that persons with CMT should engage in regular activity, when and where possible, to avoid complications associated with inactivity. " Dr. Chetlin warns that creatine is NOT a cure for CMT. It may, in certain circumstances, permit some patients to improve exercise performance and capacity. Creatine has also long been thought to have nerve-protection properties as well. For a history of Creatine and more information visit http://en.wikipedia.org/wiki/Creatine CMT persons should have their serum creatine levels checked through routine blood tests at an annual general physical exam done by a doctor of Internal Medicine. Lower than normal levels may indicate the need for creatine supplementation and discussion with one's doctor should follow before any supplementation takes place. Creatine monohydrate is available commercially, over-the-counter, in powder or capsule form. Funding agencies that have received proposals for further CMT Creatine studies have said they are not interested in examining the use of creatine in CMT patients. Dr. Chetlin concludes, " therefore, at this time there are no future study plans for creatine in large groups of CMT patients. " Securing additional funding for important studies like this is but one goal of HNF-cure.org We will continue to bring you the very best in research news updates in the coming year. Quote
Guest guest Posted August 13, 2006 Report Posted August 13, 2006 Thank you, Gretchen. I wonder if you can keep me posted if you hear anything else? Quote
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