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Thread: Dr Young: Status on Acorda's Famipridine?

  1. #1
    Senior Member lynnifer's Avatar
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    Dr Young: Status on Acorda's Famipridine?

    I'm so sorry to bring up an old subject, but I am sooo looking forward to trying this drug to see if it does anything for me, a TM patient. I'm hopeful, trying to stay realistic, but it's difficult.

    I decided to wait 'for the real thing' instead of seeking out a compounding pharmacy, since it's much more difficult from Canada.

    I checked Acorda's website and they still have a press release from June stating that they're submitting all their data to the FDA in the first quarter of 2009 with a priority rush.

    I'm sorry to beat a dead horse and ask the same darn question you've heard so many times before, but could you anticipate a date of release?

    To me, this is the first available market treatment for paralysis ... in my eyes. I know you helped form this company - and don't answer if this is too personal - but do you still have anything to do with Acorda?

    P.S. Since we have a lot of new members, Famipridine = 4-aminopyridine (4ap). Just do a search and you'll garner a lot of info! Basically, the drug 'speeds up' the signals across nerves, enabling 'some' damaged nerves to get a signal across. You won't walk again from it, but some have indicated some sensory return. Most didn't have a functional return, but I believe some garnered bladder control again (but don't quote me on this!) Some have indicated they had better BP's and cardiovascular health. The drug will be released for those with MS, but can be used 'off-label' for those with spinal cord injuries. Studies were done with us but didn't reach statistical significance for a financially struggling company i.e. they had to get something sure off the ground. This company does seem committed to spinal cord injuries. I saw the CEO Rob Cohen speak in London (Ontario) a few years back.
    Last edited by lynnifer; 09-05-2008 at 12:20 AM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #2
    Lynnifer,

    I am on the Board of Directors of Acorda Therapeutic. To my knowledge, the company is on track to getting approval of the drug sometime in the first quarter of 2009. I am not sure how soon after that the drug will be actually available on the market. However, the company has been working very hard preparing for the product launch, as soon as approval is given. Believe me, the company is highly motivated to get the product launched.

    Wise.

    Quote Originally Posted by lynnifer
    I'm so sorry to bring up an old subject, but I am sooo looking forward to trying this drug to see if it does anything for me, a TM patient. I'm hopeful, trying to stay realistic, but it's difficult.

    I decided to wait 'for the real thing' instead of seeking out a compounding pharmacy, since it's much more difficult from Canada.

    I checked Acorda's website and they still have a press release from June stating that they're submitting all their data to the FDA in the first quarter of 2009 with a priority rush.

    I'm sorry to beat a dead horse and ask the same darn question you've heard so many times before, but could you anticipate a date of release?

    To me, this is the first available market treatment for paralysis ... in my eyes. I know you helped form this company - and don't answer if this is too personal - but do you still have anything to do with Acorda?

    P.S. Since we have a lot of new members, Famipridine = 4-aminopyridine (4ap). Just do a search and you'll garner a lot of info! Basically, the drug 'speeds up' the signals across nerves, enabling 'some' damaged nerves to get a signal across. You won't walk again from it, but some have indicated some sensory return. Most didn't have a functional return, but I believe some garnered bladder control again (but don't quote me on this!) Some have indicated they had better BP's and cardiovascular health. The drug will be released for those with MS, but can be used 'off-label' for those with spinal cord injuries. Studies were done with us but didn't reach statistical significance for a financially struggling company i.e. they had to get something sure off the ground. This company does seem committed to spinal cord injuries. I saw the CEO Rob Cohen speak in London (Ontario) a few years back.

  3. #3
    Wise, would this be worth a try with a lower motor neuron injury?

  4. #4
    Quote Originally Posted by Buck_Nastier
    Wise, would this be worth a try with a lower motor neuron injury?
    Buck,

    I don't know. The drug is supposed to work by increasing excitability of neurons in three ways. The first is that it improves conduction of demyelinated or dysmyelinated axons. The second is that it increases the amount of neurotransmitter released for each action potential that arrives at a presynaptic terminal. The third is that it increases the excitability of neurons (both interneuron and motoneuron).

    If one does not have neurons, it doesn't do much. But most people have some neurons.

    Wise.

  5. #5
    Senior Member lynnifer's Avatar
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    Would this work better with someone who had TM?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #6
    Quote Originally Posted by Wise Young
    Buck,

    I don't know. The drug is supposed to work by increasing excitability of neurons in three ways. The first is that it improves conduction of demyelinated or dysmyelinated axons. The second is that it increases the amount of neurotransmitter released for each action potential that arrives at a presynaptic terminal. The third is that it increases the excitability of neurons (both interneuron and motoneuron).

    If one does not have neurons, it doesn't do much. But most people have some neurons.

    Wise.
    My Dr. told me that I have more of a neuron injury. Whatever that
    meant.

    Thanks though.

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by lynnifer
    Would this work better with someone who had TM?
    It works best the more incomplete you are; cause of demyelination doesn't seem to matter. BUT more does not necessarily mean better so for those using or thinking of using the compounded version do follow a dotor's guidelines on ramping up, max dosage, etc.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #8
    Quote Originally Posted by lynnifer
    Would this work better with someone who had TM?
    Lynnifer, actually relatively little is known about the pathological lesion in TM. That is because so few cases have gone to autopsy. Most articles about pathology of the TM skirt around the issue and they don't really talk about whether TM is primarily a demyelinative disease. For example, the article published at the Transverse Myelitis Association Newsletter (Volume 5, issue 2) gives remarkably little information about the actual pathology of TM (Source. In my opinion, I think that this is because they don't know.

    In general, TM is believed to be due to an inflammatory condition that affects one or more segments of the spinal cord. The cause of the inflammation is unknown. What is inflamed is also not well understood. It is possible that many cases of TM may be ischemic (loss of blood flow) in nature. Inflammation of blood vessels will cause ischemia. Also, inflammation and particularly release of cytokines (such as TNF-alpha) causes demyelination.

    If demyelination is the main reason for TM, the solution should be relatively straightforward. It is possible to remyelinate the spinal with many differnet therapies. For example, Schwann cells (from one's own peripheral nerve) will do so. One only has to sacrifice a peripheral nerve (sural, for example), collect the Schwann cells from that nerve, and inject the cells into the spinal cord. A number of Chinese centers are now injecting fetal or adults Schwann cells into the spinalc ord of patients. There are a number of other remyelinative therapies, including an IgM antibody therapy being developed at Mayo Clinic, injection of oligodendroglial precursor cells or neural stem cells, administration of growth factors that stimulate neural stem cells in the spinal cord (potentially such as lithium).

    Unfortunately, much evidence suggest that transverse myelitis involve not only demyelination but axonal loss as well. Much depends on the cause. Fore example, about 38% of acute transverse myelitis (ATM) is associated with some kind of viral illness. The peripheral nervous system may be involved in 27% of the patients, based on neurophysiological studies.

    Wise.

    http://www.geocities.com/HotSprings/...inal2g4.html#4
    Discriminatory Features Of Acute Transverse Myelitis: A Retrospective Analysis Of 45 Patients
    Harzheim M, Schlegel U, Urbach H, Klockgether T, Schmidt S
    J Neurol Sci 2004 Feb 15;217(2):217-23
    University of Bonn, Department of Neurology, Sigmund-Freud-Str. 25, D-53105, Bonn, Germany PMID# 14706227
    Abstract

    Acute Transverse Myelitis (ATM) is a pathogenetically heterogeneous inflammatory disorder of the Spinal Cord. Therefore, the identification of clinical and paraclinical features providing clues of the underlying Etiologies is needed.

    The clinical presentation, blood and CerebroSpinal Fluid (CSF) findings as well as Magnetic Resonance Imaging (MRI) and NeuroPhysiological features were retrospectively analyzed in 45 unselected consecutive patients with ATM.

    ParaInfectious ATM was diagnosed in 38% of patients. The underlying infectious agent, however, was identified only in a minority of patients.

    In 36% of patients, the Etiology remained uncertain ("idiopathic" ATM) and in 22% ATM was the first manifestation of Possible Multiple Sclerosis (ATM-MS) according to recently published diagnostic criteria.

    Spinal Cord MRI showed signal alterations in 96% of the patients. In ATM-MS, MonoSegmental involvement of the Spinal Cord was most frequent while Spinal Cord involvement of two or more Segments was more common in ATM of other Etiologies.

    Of particular note, NeuroPhysiological Examinations showed evidence of Peripheral Nervous System (PNS) involvement in 27% of patients with ATM but not in patients with ATM-MS.

    Therefore, NeuroPhysiological evidence of PNS involvement may provide additional discriminatory features between ATM-MS and ATM of other Etiologies.

  9. #9
    Does this drug counteract other drugs that suppress neural activity, like baclofen and gabapentin? Can these three drugs be taken together?

  10. #10
    Quote Originally Posted by Wise Young
    It is possible to remyelinate the spinal with many differnet therapies. For example, Schwann cells (from one's own peripheral nerve) will do so. One only has to sacrifice a peripheral nerve (sural, for example), collect the Schwann cells from that nerve, and inject the cells into the spinal cord. A number of Chinese centers are now injecting fetal or adults Schwann cells into the spinalc ord of patients. There are a number of other remyelinative therapies, including an IgM antibody therapy being developed at Mayo Clinic, injection of oligodendroglial precursor cells or neural stem cells, administration of growth factors that stimulate neural stem cells in the spinal cord (potentially such as lithium).
    Hello Dr. Young and thanks for the update. Are those differents therapies available today for human and FDA approved?.. Can you please tell us how we can evaluate how demyelinated our spinal cord are?..
    Many thanks
    George

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