View Poll Results:

Voters
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  • You have never taken 4-AP

    172 66.93%
  • You have taken 4-AP but stopped because it is not sufficiently beneficial

    34 13.23%
  • You have taken 4-AP but stopped because of side-effects or other reasons

    14 5.45%
  • You have participated in a 4-AP trial but you are not taking the drug now

    4 1.56%
  • You are now taking 4-AP

    33 12.84%
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Thread: How many people have tried or take 4-aminopyridine?

  1. #41
    Senior Member TimN's Avatar
    Join Date
    Jul 2003
    Location
    TN / USA
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    321
    I'm in a phase III fampridine-sr study now, which from the info on this site seems to be the same thing although they asked if I had taken 4-AP before the trial. If so it would have disqualified me so there must be a difference... sustained release fampridine-sr vs original 4-AP (sound about right?) Either way I checked I'm taking it now. I guess it's similar enough that my answer is true. I have three more weeks in this study then begin an extension or phase IV study which to my knowledge can last from one to two yrs.

  2. #42
    In 1995 I participated in the Elan 4-AP double blind study clinical trials at the Long Beach VA in California, which lasted three weeks. I had no trouble differentiating the placebo from the real medicine, and at 42 milligrams of 4-AP given in a sustained release caplet, I noticed an 80% reduction in tone and spasms. I noticed that there were no side effects and I actually woke up about a half an hour earlier in the morning feeling well-rested and my bowel program took less time.

    PN

  3. #43
    If everything goes good I should start the phase IV trial in a couple of weeks. I hope!
    Brad

  4. #44
    Senior Member
    Join Date
    Jul 2001
    Location
    Manassas,Va. USA
    Posts
    353
    As I have said on this forum before. They invited my son into the trials but said the placibo would be involved and since Justin was already on it and reaping some helps we decided not to chance losing some of its benefits so he continues taking it to this day.He takes 1 a day of the time release. It seems to help his bladder, lessens spasms, and gives him a slite energy boost.

  5. #45
    I was in a study a few years ago and have a journal of it at my site http://remote-ability.com/4-ap/4-ap.htm that you can read. In my case never got higher then 10 mg as the spasms got to severe. I believe it off-set my meds and the bladder spasms just got to bad. I do know it works for some people. Usually in the 30-40 mg levels. Just not for me though. Best stuff that had results with various things are herbal. Like colostrum [spell?] which healed my stage 3 to the bone sore on my foot by actually rebuilding the flesh. Filled out nicely and no more problems. A huge scare from a surgery is almost non-existent now too. Did not take long either. Other uses for it too but all uses [internally] are depended on other herbs or whatever as it is NOT a stand alone. So don't go and use it without serious reesearch. Btw, best is from Australia but as I said.. depending on it's use it needs another herb, or 2-3, for direction or partnership.

    Anyway, I look at it this way. Whatever works for YOU. If 4-AP works go for it.. if not try something else but as with everything there ARE NO ONE ITEM cures.

    My 2 cents..

  6. #46
    I was told that i would not be able to participate in the trial if I had ever taken 4-AP in the past. This counts me out because I tried it a couple years ago from the College Pharmacy.

    Anyone else get the same message? I thought I remembered reading somewhere that this wouldn't be an issue.

  7. #47
    Carl C

    Got the same response when I tried to get into Phase III trials. Met all the criteria EXCEPT that I had tried the compunded 4ap.

    I did that after I was considering the Phase II trials but decided not to because Acorda said that they would not have an open label trial for us after the Phase II. NOW, I've heard that those who participated in Phase II ARE eligible for an open label trial!

    I had some positive results from the componded version, but I stopped it because of the side effects which came in peaks and valleys. I had hoped that the Acorda version might remedy that.

    I've followed 4ap for years. I just heard that Acorda was ,only now, expecting to have their trials fully enrolled.
    This is disheartening. Their Phase II trials took longer than anticipated.

    You know, as I write this, I am remembering something about an FDA panel that insisted that Acorda include anyone on the compounded version in any open label trials in return for the FDA making the compounded 4ap not be available. Lots of clammering from compunding pharmacists and from Acorda. Never heard anything else about it?

    I hate sounding negative, but it seems to me that this drug has been used successfully by lots of people for lots of years. I hate to think that the primary thing holding it up is money. But I do. Maybe my personal situation is clouding my judgement?

    O-bla-de-O-bla-da

  8. #48
    Junior Member
    Join Date
    Jun 2003
    Location
    Guadalajara, Jalisco MEXICO
    Posts
    2
    Does anyone have an e-mail address to contact Dr. James W. Fawcett, from the University of Cambridge??
    I would really appreciate your help.

  9. #49
    Originally posted by Jim Day:

    Does anyone have an e-mail address to contact Dr. James W. Fawcett, from the University of Cambridge??
    I would really appreciate your help.
    Try http://www.brc.cam.ac.uk/pages/fawcett.html

  10. #50
    Member
    Join Date
    Jul 2001
    Location
    port coquitlam, bc, canada
    Posts
    52
    My son tried to get in trial, he met all the criteria, but was refused because he uses marijuanna. Anyone else had that problem?

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