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How many people have tried or take 4-aminopyridine?

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  • How many people have tried or take 4-aminopyridine?

    4-aminopyridine (4-AP) is a drug that is taken orally and has been shown to improve function of axons that have been demyelinated. Since the early 1990's, the drug has been available by prescription from compounding pharmacies. Several clinical trials have suggested that the drug improves function in people with multiple sclerosis (MS) and spinal cord injury (SCI). As many as 10,000 people in the United States are reputed to be taking the drug. For people who have SCI (from any cause) or MS, which category do you belong in?

    [This message was edited by Wise Young on Mar 20, 2002 at 11:06 AM.]
    1
    You have never taken 4-AP
    100.00%
    1
    You have taken 4-AP but stopped because it is not sufficiently beneficial
    0.00%
    0
    You have taken 4-AP but stopped because of side-effects or other reasons
    0.00%
    0
    You have participated in a 4-AP trial but you are not taking the drug now
    0.00%
    0
    You are now taking 4-AP
    0.00%
    0

  • #2
    Wise Young Poll

    How about this question:

    If you have never taken 4AP, are you waiting for the Phase 3 trial and FDA approval?

    Comment


    • #3
      egroman, thanks. I wish that I had room for that question... I also wanted to put in the option: "You are not interested". But both that option and yours would be covered by "You have never taken 4-AP".

      The most important option, however, is "You are now taking 4-AP".

      Incidentally, the phase 3 trial has been approved by the FDA and should be starting imminently. They just had their investigator meeting and things are moving along briskly. Keep tabs of the situation at www.acorda.com and you can sign up for email notification through that site.

      Wise.

      [This message was edited by Wise Young on Mar 06, 2002 at 06:26 PM.]

      Comment


      • #4
        I wanted to ask you Dr. Young... have you heard anything about when Acorda will start the recruting? I'm (as you know by now) very unpatient and haver checked out the college pharmacy which, if i don't qualify for the trials, would be my next step.
        Any info would be appreciated since my doc can't prescribe meds that r not FDA approved [img]/forum/images/smilies/mad.gif[/img]

        Me.
        Thoughts become things, choose the good ones!

        Comment


        • #5
          Pecla,

          Acorda just held their investigator meeting in Florida and they should be returning home and getting set to start the trial as soon as they are ready. I have been anticipating a go signal shortly and will post it on the site as soon as I know.

          Wise.

          Comment


          • #6
            Thanks Dr. Young.

            I didn't know Acorda had plans of starting with chronic injuries this year. Everytime I see a post that has something to do with 4-AP I normally overlook it since I knew the criteria was originally for incompletes. Where in Florida may I find info on participating in the study?

            I just followed your link and requested the info from acorda, but if you have the info available that would be great too. [img]/forum/images/smilies/smile.gif[/img]

            Comment


            • #7
              I am bumping this poll up to see if we can get more people to respond. If you have SCI, even if you have not heard of 4-AP, can you respond? I think that it would be very interesting to know what proportion of our community have taken or are now taking 4-AP.

              Wise.

              Comment


              • #8
                Over a third of people who have responded have indicated that they have tried 4-AP. Is this true, base do your conversations with other people with spinal cord injury? Wise.

                Comment


                • #9
                  I tried it slowly ramping and once I was able to work out on the recumbent bike far better than ever before, even had heavy ankle weights on, but then it didn't help noticebly after that, except I seemed to have worse stress incontinence. I was on the list to participate in Madonna Rehab Hospital's clinical trial for FampridineSR, but they made the excuse they hadn't the time to get ready for it though they had enough participants. They've never helped me before and didn't surprise me.

                  Jan

                  Comment


                  • #10
                    In my area I think about half the incompletes I've talked to have tried 4-AP. I think this has to do with more doctors in the Baltimore-Washington corridor being familiar with several of the MS Centers and their use of it. That and the number of patient computer users with all libraries being hooked up to the internet and ready access of doctors to NIH and clinical trial information.

                    I'd also guess that maybe 10% of completes have tried 4-AP and the same ratio of those with Cauda Equina injuries trying 3,4 DAP.
                    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.

                    Comment


                    • #11
                      hey

                      i tried it, i am a c5-6 inc and i can tell the difference like when i eat im ready to have a bowel movement on my own, and i can feel my muscles move...........
                      mvp

                      Comment


                      • #12
                        Poll - 4-AP

                        My daughter (T-12 incomplete) asked her Doctor about it but he said she is still in the recovery stage so she should not take it. She is in London, Ontario and is still an out-patient at Parkwood Rehab Hospital.
                        Darlene

                        Comment


                        • #13
                          Bumping the poll up

                          This poll suggests that over a third of people who voted have tried 4-AP and that about a third of the people who tried it are continuing to take it.

                          Comment


                          • #14
                            Originally posted by Wise Young:

                            This poll suggests that over a third of people who voted have tried 4-AP and that about a third of the people who tried it are continuing to take it.
                            Dr. Young, I am 9 months post injury. I have been taking 4-AP since Dec. 2001. Should I stop it cuz I am still at my recovery stage? I am C5 incomplete and my spinal cord is badly damaged by compression (according to my doc).I did not get much recovery.

                            Comment


                            • #15
                              I really want to try it, I first heard of it nearly 4 years ago and asked my doctor for a perscription so I could get from a compounding pharmacy but she wouldn't give me 1 since it's not FDA approved, I never thought it would take so long! I'm a c7 quad incomplete with weak triceps I'm hoping it might help me gain some strength back in them.

                              Comment

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