Who is Dr. Erik Pioro?
The Cleveland Clinic selected its Director of the Clinic’s Center for ALS and Related Disorders, Dr. Erik Pioro, as the chair holder. Dr. Pioro is an internationally renowned expert in ALS, and highly regarded as among the best and the brightest in ALS research.
In addition to many years of clinical care and research, Dr. Pioro collaborates with other respected professionals in cutting edge genetic research, at such places as the National Institute of Health, (NIH) and Johns Hopkins University. He has authored numerous articles, as well as a book on ALS research and clinical care, and frequently presents at international ALS symposiums. Dr. Pioro’s and the Clinic’s Neurosciences Institute’s strong reputations put the Cleveland Clinic on the short list for pharmaceutical trials.
Given the Clinic’s breadth of expertise, Dr. Pioro and other ALS researchers have unfettered access to research across many other disciplines, such as neuroimaging, neurology, and diseases, such as multiple sclerosis, Alzheimer’s, and epilepsy.
Since the middle of this decade, there have been major strides in genetic and therapeutic research that could lead to breakthroughs for ALS. The Cleveland Clinic, through Dr. Pioro’s leadership and unrelenting commitment, is at the gateway of these possibilities.
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Good evening Dr. Pioro:
My name is Larry Leisher and I live in Fleming Island, Fl. In 2005 I was DX with IBM. At one point it was thought that I may have ALS but after a muscle biopsy it was determined to be IBM. As you know there is no cure or treatment for IBM. Because of the closeness of the 2 diseases I follow up on research on ALS as well as IBM. I heard an editorial on the local radio about your study of DEX-QUIN and ALS. I was wandering if there is any possible connection that this may be a treatment for IBM. I guess I am just grasping for something to hang onto and possibly slow down the progression of IBM.
Thank you for your time and resonse.
Sincerely
Larry Leisher
1433 Water Pipit Lane
Fleming Island, Fl. 32003
(904-505-6497)
Hi Larry - Sorry for the delay in replying. I didn’t realize someone may post a question on the BSOR website and I just happened to see it tonight so thought I would respond.
Your question is whether dextromethorphan + quinidine (now approved by FDA as Nuedexta for the treatment of pseudobulbar affect, PBA) would be useful in treating inclusion body myositis (IBM). Based on what I know of the mechanism of action of Nuedexta and the pathogenesis of IBM, I would have to say no (unfortunately). Although IBM is considered to have some degree of inflammation, it behaves more like a progressive degenerative condition of the muscle, not unlike ALS is a progressive degenerative condition of motor neurons.
Therefore, it is not impossible that a future treatment for ALS would work in IBM - but as far as I can see now - Nuedexta would not be expected to have a benefit in IBM, sorry.
Has your neurologist tried some of the anti-inflammatory treatments like IVIG?
Best wishes-
EPP