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    #76
    How are people getting their doctors to prescribe 4-AP to them?


    Everything I am reading seems to make it only justifiable for MS patients!

    From the Acorda website it just mentions it is in clinical trial as far as SCI is concerned.
    Acorda fampridine sci

    Is anyone getting fampridine SR ?

    Or are you getting 4-AP made up at a compounding pharmacy?

    Comment


      #77
      I was on 4AP for 3 years, noticed small gains but after the pill wore off I was walking worse than ever. It wasn't worth it to me, and it reduced my spasms which are bad because I need them for my left leg.

      Oddly though I think the increase in function was all in my head. Because as soon as I took the pill I felt like I could walk easier but in reality there is no way the pill could take effect that fast which makes me think it was all in my head. The side effects were real though (decreased spasms, face/lip vibrations)
      Last edited by mr_coffee; 6 Dec 2009, 2:38 AM.
      Injured:10-16-04
      C7/C8, T1 incomplete;


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        #78
        dr wise

        dr wise or any one else ??
        do you know has any one taking 4-AP that is complete or is it only for incomplete [IMG]/forum/images/icons/icon5.gif[/IMG]
        AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


        http://justadollarplease.org

        Comment


          #79
          Originally posted by mr_coffee View Post
          I was on 4AP for 3 years, noticed small gains but after the pill wore off I was walking worse than ever. It wasn't worth it to me, and it reduced my spasms which are bad because I need them for my left leg.

          Oddly though I think the increase in function was all in my head. Because as soon as I took the pill I felt like I could walk easier but in reality there is no way the pill could take effect that fast which makes me think it was all in my head. The side effects were real though (decreased spasms, face/lip vibrations)

          How did you mange to get 4-AP? were you on a clinical trial or?
          What Dosage were you taking?
          Any other cons you noticed?

          Thanks.

          Comment


            #80
            NW,

            I printed out information on 4-ap and gave it to my family doctor and she wrote a prescription for it. My docotor was very nice and knew very little about SCI so she said I know more than she does so why not and gave me it.

            I had to get the stuff made at a compound pharm though, it was like 90 a month. Another doc I talked to saw I was on the stuff and was shocked.

            I was on 10mg 3x a day.

            Side effects were: decreased spasms, face tingling/vibration (wasn't really doing it, just felt like it.), increased bowel movements (had to get use to those), that was about it, oh also pain increase but didn't notice any difference with temperature.
            Last edited by mr_coffee; 7 Dec 2009, 4:15 AM.
            Injured:10-16-04
            C7/C8, T1 incomplete;


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            Comment


              #81
              To my knowledge no one within SCI is getting Fampridine-SR.The clinical SCI trials for Fampridine-SR came to an unexpected end in 2004.I would think there is a difference between the 4-AP that you purchase at a compounding pharmacy and Fampridine-SR, which is owned by Acorda. Dr. Young can correct me if I’m wrong, but it is my understanding that Acorda holds the patent for Fampridine-SR and this formulation is not disseminated in the public domain. Therefore, the only ones who know how Fampridine-SR is formulated would be Acorda and the FDA. I don’t believe the 4-AP at the independent pharmacies is regulated or has to abide by any quality control standards. In other words, you may not be getting the real McCoy.

              Also, Fampridine-SR is a sustained release caplet and not a quick release formula.

              Coffee wrote “It wasn’t worth it to me, and it reduced my spasms which are bad because I need them for my left leg.” I believe he is referring to tone, and not spasms, which he needed to use to help him walk.

              When I was in the Elan 4-AP clinical trials in 1995, there was one individual with a complete spinal cord injury and he said that the medication reduced the spasms in his legs by eighty or ninety percent.
              The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
              --General George Patton

              Complex problems need to be solved collectively.
              ––Paul Nussbaum
              usc87.blogspot.com

              Comment


                #82
                PN,

                Yes I was referring to tone and it reduces tone is what I meant!


                I was on a sustained released caplet although I still felt the effects wear off in about an hour.
                Injured:10-16-04
                C7/C8, T1 incomplete;


                For stalkers convenience:
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                Facebook:
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                My drawings:
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                Comment


                  #83
                  Originally posted by mr_coffee View Post
                  NW,

                  I printed out information on 4-ap and gave it to my family doctor and she wrote a prescription for it. My docotor was very nice and knew very little about SCI so she said I know more than she does so why not and gave me it.

                  I had to get the stuff made at a compound pharm though, it was like 90 a month. Another doc I talked to saw I was on the stuff and was shocked.

                  I was on 10mg 3x a day.

                  Side effects were: decreased spasms, face tingling/vibration (wasn't really doing it, just felt like it.), increased bowel movements (had to get use to those), that was about it, oh also pain increase but didn't notice any difference with temperature.
                  Thank you for sharing your experience Mr. Coffee.

                  I managed to get a prescription and took my first 5mg 4-AP today,
                  fingers crossed.

                  The most useful documentation to have for my doctor was
                  the dosing regime.

                  Found here https://www.carecure.net/forum/showpost.php?p=100411

                  and here /index.php?page=viewarticle&afile=5_September_2005@ 4aminopyridine.htm

                  and third post down in this thread
                  https://www.carecure.net/forum/showt...ow%2C+Part+One

                  Of course they ignored it..
                  and I have

                  5mg 3 times a day for 4 days
                  5mg 4 times a day for 5 days
                  10mg 3 times a day for 7 days
                  10mg 4 times a day there after

                  186 5mg capsules = $ 115

                  This is not sustained release.
                  I was figuring sustained release would be better, I don't mind taking it
                  4 times a day, even 4 times a day sustained release. For some
                  reason the pharmacist talked the doctor into changing the prescription
                  to non sustained release, even though they have the capability to
                  compound sustained release. !!!!

                  Some people have gone up to 60 milligrams per day, while others have success with 20. Again, 4-AP must be taken under medical supervision. Please don't keep pushing the dose higher if you get any significant side effect of the drug.
                  Anyone reading this taking more than 40mg of 4-AP??

                  Comment


                    #84
                    I don't know if you guys remember; I posted a note that Purdue University has come out with a super 4-p. They say it is 10x stronger than Acorda's pill; they think it has use in that it will be easier to control the side effects of 4-p.

                    Just a note.

                    Comment


                      #85
                      Dr. Young; would it be possible to highlight events or progression of your upcoming trials. I know I would and others probably would be intersted in following the events and outcomes of the trials. If this is a problem; then forget it.
                      I would suggest if this is possible. then a seperate thread be established focusing on this subject.

                      Thanks in advance

                      T.J.

                      Comment


                        #86
                        you must all remember 4-ap is only effective 30-35% in sci, so of course their is a 65-70% failure rate, that's why I am trying to wait till it is fda approved so medicare will cover the cost.

                        Comment


                          #87
                          Originally posted by znop View Post
                          you must all remember 4-ap is only effective 30-35% in sci, so of course their is a 65-70% failure rate, that's why I am trying to wait till it is fda approved so medicare will cover the cost.
                          Where is it written that it has a 65% or 70% failure rate? It does work best with incomplete injuries.
                          The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                          --General George Patton

                          Complex problems need to be solved collectively.
                          ––Paul Nussbaum
                          usc87.blogspot.com

                          Comment


                            #88
                            Originally posted by NW-Will View Post

                            Of course they ignored it..
                            and I have

                            5mg 3 times a day for 4 days
                            5mg 4 times a day for 5 days
                            10mg 3 times a day for 7 days
                            10mg 4 times a day there after

                            186 5mg capsules = $ 115

                            This is not sustained release.
                            I was figuring sustained release would be better, I don't mind taking it
                            4 times a day, even 4 times a day sustained release. For some
                            reason the pharmacist talked the doctor into changing the prescription
                            to non sustained release, even though they have the capability to
                            compound sustained release. !!!!



                            Anyone reading this taking more than 40mg of 4-AP??
                            It will be cheaper when you get to 10mg capsules as they charge for each capsule more than the strength. There is very little difference in compounded "sustained release" and regular old 4-AP. Unlike Fampridine that is formulated to maintain the same blood levels of the drug over 12 hours the compounders normally just add cellulose to slow or cut the amount of the drug released from as soon as the gel capsule dissolves to maybe an added half hour to hour to your blood stream.
                            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


                              #89
                              pn

                              if you do your hopmework 4-ap has been proven by Acorda that onlyb30-35 % of incomplete sci benefit from 4-ap

                              Comment


                                #90
                                Originally posted by znop View Post
                                if you do your hopmework 4-ap has been proven by Acorda that onlyb30-35 % of incomplete sci benefit from 4-ap
                                I contacted Acorda and they have not stated, written, or published that Fampridine-SR is 30% or 35% effective for SCIs with an incomplete injury. It is possible that you are confused with the percentages as it relates to the Gait Study in the MS clinical trials. I am not paying attention to the results of the MS trial since the SCI trials were scrubbed back in 2004. I hope this helps.

                                Good luck.
                                The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                                --General George Patton

                                Complex problems need to be solved collectively.
                                ––Paul Nussbaum
                                usc87.blogspot.com

                                Comment

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