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Thread: Use of 4-ap ( fampridine )

  1. #1
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    Use of 4-ap ( fampridine )

    Why are more people not purchasing 4-AP for their own use from select pharmacy's? Is it a matter of cost or do people not know that you can purchaes it?

    I am a T-12 incomplete from a plane crash in Feb. I intend on using 4-AP after giving my body 6 months to finish its own healing.

  2. #2

    sci-pilot

    I did not know a person could purchase it. Where can you get it?

  3. #3
    Senior Member bill j.'s Avatar
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    You can buy 4-AP from a number of pharmacies in the U.S. with a doctor's prescription. However, the quality of it is unknown and varies from pharmacy to pharmacy according to their compounding formula. I tried 4-AP but quit taking after I found the effects to be very minimal. I will probably try it again when the drug is approved and a standard approved version is on the market. This will probably be of a higher quality than what is now available. I think most people that have been on this forum for awhile are aware of 4-AP and how it can be purchased. Bill

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    Something that I've read on this forum scares me...people that were using 4ap in clinical trial can't get it anymore! That seems unethical to me.

    I heard something on NPR recently regarding a double blind study...at the point that efficacy is proven both the people receving the drug in test as well as the placebo both receive the drug.

    Eric Texley

  5. #5
    Eric, what you heard or read is not true. Participating in the trials will not affect whether or not people can get a prescription and 4-aminopyridine from compounding pharmacies. Acorda is also planning to initiate an open-label trial for people who have participated in previous Acorda trials. In the open-label trial, people will get free Fampridine in a long term assessment of risks and benefits. However, it is true that people who have taken 4-aminopyridine before (whether from a previous trial or the compounding pharmacy versions) are not eligible for the clinical trial. Wise.

  6. #6
    Why do we even talk about 4-ap? It doesn't work!

  7. #7
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    No...what I am saying is that it isn't ethical for people to no longer be able to get ahold of the Accorda version of the drug...the time release version...when they are no longer in the trial. Taking that drug probably changes people's lives. The fact that they can't get it anymore after the trial is over isn't a good thing.

    People should be able to buy the drug. NOW.

    Eric Texley

  8. #8
    Well I guess Acorda of the FDA has push the trial back some more. My Doctor keep telling me that it will be starting in the middle of the month or so. I've been hearing this since March. I'm so tired of waiting. What's going on? When is it going to start?
    Brad

  9. #9
    Eric, I don't understand why you are saying such naive things. You know that it is not possible. Acorda cannot sell the drug without FDA approval. If you want to complain to the FDA that their standards are too rigid, please do. Let us hope that this trial goes well, that the trial shows positive results, and the drug is approved by the FDA. When that happens, everybody will have access to it.

    Tigger, the trial has not been pushed back by the FDA, to my knowledge. Different centers are still getting permission from their institutions to run the trial. The trial should start soon but it takes a lot of organization for so many centers to get their act together. I think that it is starting soon. Be patient.

    Dimitriy, are you saying that it does not work because it does not work for you? The drug probably will be beneficial to only about a third of people with spinal cord injury.

    Wise.

  10. #10
    Super Moderator Sue Pendleton's Avatar
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    This is from what I got last week: The phase 3 double blind trial will begin at all but 1 model SCI Center in the US and a lot of centers in Canada. This phase 3 is for "naive" subjects. People with no previous experience with 4-AP, compounded or otherwise. If you wish to participate go to the Acorda website and sign up. Everyone will be contacted. They are also currently working on a phase 4 long term safety trial using subjects from other other trials where people were there own controls--in other words, people who got the drug at one point or another in a study. Again, this will be at all but 1 model center in the US. I didn't ask about Canada.

    There are some trials where people are told ahead of time that they may continue on a drug after the study is over. These are normally cancer drugs and studies will say this right up front. They are fairly rare from what I see in the clinical trial alerts NIH puts out.

    And I do continue taking 4-AP that I get from a good compounding pharmacy with a prescription from my doctor. Brian, you may need to order it from a US compounding pharmacy but I would contact the CSRO first to see if you qualify for the phase 3 study and where the nearest center is to you.

    Dmitriy, those steps I was able to take were because of the 4-AP. Before that I could stand and bend my knees a bit. It does work for some but it is not a wonder drug.

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