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4-Aminopyridine treatment for chronic spinal cord injury

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  • #31
    Dr. Young,

    I feel very isolated because no one really seems to understand what goes on after my type of injury. I had the best surgeon in the world, but now no one understands why I have so much pressure pain, why I have recovered so much or so little and what could help me. I understand my spinal cord was compressed for at least 5 years and repaired itself, successfully for years, until the veinous mass was too large. Now that it is gone, there must be damage but no one knows to what extent and why it is still repairing. Because it is a rare condition, there will never be any research done.

    My question is: can people with avms and other vascular conditions benefit from stem cell transplants (such as the ones performed by Dr. Huang? , from drugs such as 4 AP or HP 184? or will something happen only in a very distant future as a result of the search for a cure for traumatic injuries?

    gretchen 1
    gretchen 1

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    • #32
      Originally posted by gretchen
      Thank you Dr. Young. I will let you know what happens when my doctor lets me up the dose.

      gretchen 1
      Hi - I don't really know the date of your post - but what has been the results of the 4-ap ? 'cause I am keen on starting it myself .
      Thanks
      Adheer

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      • #33
        I'm wondering if anyone with an incomplete injury has taken this with positive results.
        No one ever became unsuccessful by helping others out

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        • #34
          Mr Coffee (Cory) takes it. I have tried in vain to find a doctor who will prescribe this. Everything I have read indicates positive results. Anyway, about 30 doctors later, no luck. I even got a list of doctors from the compound pharmacy and they were all gynecologists??

          Chris, let me know if you have any luck. Since we are in the same area we can go to the same doctor! Hey, maybe Dr. Chaudry will write you a script? Dr. K nixed the idea right away....

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          • #35
            I could talk to a friend of mine who's an HBS for Kaiser...Can any MD prescribe this stuff?
            No one ever became unsuccessful by helping others out

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            • #36
              What did Dr. K say? In fact, what is the primary argument against this stuff by prescribing Drs? Is it the overdose factor?
              No one ever became unsuccessful by helping others out

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              • #37
                Dr. K said " I am not in the habit of prescribing medicines not approved by the FDA"...... She recognized the potential, but it is probably a liability thing with Kasier. I mention Dr. Chaudry becuase the times we met with him, he was a lot more open and informed about advances in SCi. He knew about the procedures in other countries and talked at length about them with Mike. He didn't recommend anything but rather told Mike to wait a few years (Like Dr. Wise says) It just gives me the impression he would be more open to the idea of taking 4-AP.

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                • #38
                  Has anybody here at spinewire with complete thoracic injuries benefited from taking 4AP?

                  If so, plrease reply. Any complete para's who've taken it, please reply with any results. good or bad.

                  thanks much
                  Please donate a dollar a day at http://justadollarplease.org.
                  Copy and paste this message to the bottom of your signature.

                  Thanks!

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                  • #39
                    does anyone know if its possible to get 4-ap in the uk? i've spoken to my doc in the past but he brushed it off which i think was because off his lack of knowledge on the subject. i've been experiencing alot of internal pain recently aswel as warmth in my lower legs. thanks in advance.

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                    • #40
                      Hi, I live in the UK and looked into this a few years ago. Unfortunately, I could not find any source in the UK having asked my doctor, the pharmacist (who looked it up) and another specialist. However, I spoke to College Pharmacy http://collegepharmacy.com/ and they said they could send me 4-ap so long as they had a prescription from a UK doctor along with a copy of his/hers doctor's certificate. My GP said he would not mind writing a prescription so long as I signed a release stating I understood this was an unapproved, trial drug.

                      In the end, I decided to wait for the Accorda trials and an approved version of the drug. It has been a long wait but it might be available next year.

                      I would be interested to hear from you if you get hold of any and if it helps you.

                      All the best, Patrick

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                      • #41
                        Test post

                        Tried twice to post a long message, but it got wiped out.

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                        • #42
                          Ok, I think I've got this figured out!

                          Dr. Wise, I came down with transverse myelitis on 7/25/05, T6 ASIA A. I began recovery in November 2005 with toe wiggles and have progressed to a return of all feeling (some still slightly impaired), and voluntary movement in all muscles, although the hamstrings, gluts and the muscles that lift the ankles are noticably weaker than other muscles. I can now walk with a walker in therapy, record of 439 feet in three segments, in about 30 minutes elapsed time.

                          Today my doctor suggested I try 4-AP. He also recommended that I start to decrease the amount of baclofen I am taking.

                          Do you think 4-AP would be of help to me? If so, should I wait until I decrease the baclofen before starting the 4-AP? Would it be best to start after the holidays, when I'm in therapy on a regular schedule, or just start now?

                          Are there any remedies to the side effects...loose stools would be a problem for me to manage while I am home alone. Are these side effects persistent, or do they dissipate over time?

                          TIA,
                          Koshki

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                          • #43
                            Originally posted by koshki
                            Ok, I think I've got this figured out!

                            Dr. Wise, I came down with transverse myelitis on 7/25/05, T6 ASIA A. I began recovery in November 2005 with toe wiggles and have progressed to a return of all feeling (some still slightly impaired), and voluntary movement in all muscles, although the hamstrings, gluts and the muscles that lift the ankles are noticably weaker than other muscles. I can now walk with a walker in therapy, record of 439 feet in three segments, in about 30 minutes elapsed time.

                            Today my doctor suggested I try 4-AP. He also recommended that I start to decrease the amount of baclofen I am taking.

                            Do you think 4-AP would be of help to me? If so, should I wait until I decrease the baclofen before starting the 4-AP? Would it be best to start after the holidays, when I'm in therapy on a regular schedule, or just start now?

                            Are there any remedies to the side effects...loose stools would be a problem for me to manage while I am home alone. Are these side effects persistent, or do they dissipate over time?

                            TIA,
                            Koshki
                            Koshki,

                            Regarding weaning of baclofen before or after starting 4-AP, it probably is not important. The clinical trials of 4-AP used subjects who were still on their baclofen. I don't think that the two drugs have adverse interactions with each other. If you wean off baclofen before you start 4-AP, you may experience a period of increased spasticity. In fact, 4-AP has been reported to reduce spasticity in some people.

                            4-AP has two major effects on the central nervous system, both emanating from the same mechanism of action. The drug blocks the fast-voltage sensitive potassium channel. This channel reduces the duration of action potentials (the signals that neurons use to signal to each other). Therefore, blocking the potassium channel results in longer duration action potentials. Longer duration action potentials can get across demyelinated zones better. When they arrive at the synapse (the connection between the axon and another neuron), long duration action potentials also result in the release of more neurotransmitters. Therefore, what 4-AP does is increase the efficacy, efficiency, and reliability of action potential transmission in the brain and spinal cord.

                            The side effects of 4-AP also come from these mechanisms. First, 4-AP generally increases the excitability of the nervous system. So, many people when they initially take 4-AP may be more nervous, jittery, and may even have insomnia. Second, 4-AP increases both sympathetic and parasympathetic activity and transient imbalances of the two may result in changes in blood pressure, bowel and bladder contractions, sweating, skin blood flow (flushing sensation), etc. Third, while 4-AP has relatively less direct effects on muscles, vasculature, and gut, high doses of the drug may affect these tissues as well. However, the body accomodates fairly quickly to 4-AP. Thus, if the dose is ramped up over a period of 1-2 weeks (described in other posts), the side effects are considerably less.

                            I don't know whether 4-AP will have any effect on you. It is often hard to predict. About a third of people with spinal cord injury show some kind of measurably improvement from taking the drug. However, as many as 80% of the people have less measurable benefits, such as redution of fatigue, better motor control, less spasticity, etc. The best way to find out is to try the drug. To my knowledge, 4-AP has not been tested in clinical trial on people with transverse myelitis. Assuming that your transverse myeltis produced damage to your spinal cord from reduces blood flow, there may be demyelination and loss of axons. In that case, 4-AP may well have beneficial effects.

                            Please let us know whether it has any effects.
                            Wise.

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                            • #44
                              How long before I see results?

                              I have gone through the ramp-up period with 4-AP and have been on the therapeutic dosage for about a week now.

                              How long should I wait before I see results? I'm not sure what I should be looking for either. Because I have been experiencing slow recovery without the drug, I'm not sure what impact it may have on me now.

                              Koshki

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                              • #45
                                Hi I have TM and been on 4-AP for over 1 year. Everyone is different but the changes i noticed are less spasms, more sensations, less tired. Good luck just give it some time to work. anty
                                Be always determined in Life and Love

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