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  • #31
    I am currently in the end of the third week of the Open Label 4-AP clinical trials at the VA in Long Beach, California. I started at 20 mgs.for the first week and did not notice much of a change and had no side-effects. Second week, I was at 30 mgs a day and I noticed a decrease in spasms and muscle tone. In the third week the dose was increased to 40 mgs and I noticed that my muscle tone and spasms have decreased by 30%. I can, also, put my left hand on top of my head which is something that I could not do before. This coming Tuesday the dose will be increased to 50 mgs and I will report any changes, good or bad.

    Just so that there is no confusion: Acorda has called 4-AP Fampridine-SR for the past few years as I have been told.

    PN
    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


    • #32
      Originally posted by PN:

      I am currently in the end of the third week of the Open Label 4-AP clinical trials at the VA in Long Beach, California. I noticed that my muscle tone and spasms have decreased by 30%. I can, also, put my left hand on top of my head which is something that I could not do before. This coming Tuesday the dose will be increased to 50 mgs and I will report any changes, good or bad.
      PN
      PN,

      Thank you for posting your progress! It's really great to hear about it cuz I have planned to let my son try 4-AP once the third phase clinical trial is over.

      Suzanne
      Suzanne

      Comment


      • #33
        Paul, do you have any side effects with the increased dosage? I got constipated at 30 mgs and went back to 20 mgs a day with 4-AP, so am hoping that FampridineSR works better without side effects.

        Jan

        Comment


        • #34
          I began Acorda's Fampridine-SR phase III trial in March 2003 at Sheperd's in Atlanta, Ga. I'm a C5-C6 incomplete w/ full sensation n have regained some motor function since my accident on 12 April 1998, but very little functional. The study was a double-blind placebo in which I, as well as my Dr n nurses, felt I was on the placebo as I never saw a benefit nor any side effects. The trial ended in August 2003. I was soon contacted concerning Acorda's phase III extension (or phase IV) study to begin in October. In this study I was to recieve the real medication. I went weekly for a month while ramping-up as I did in the previous study, but I was told what dosage I would be taking after each visit. I didn't notice anything until I reached 30 mg per day (15mg in the morning, n 15 mg at night). When I increased to 40 mg per day I really noticed a decrease in spasticity n an increase in bowel frequency. I was kept at that dosage for an additional week, then ramped-up to 50 mg per day which I am still taking. I now go monthly to get more medication n a check-up, and will continue to until they begin ramping us down before the study ends. It's definitely eased my spasticity n tone, my bowel function is near daily now w/o the need of a suppository or etc. I have longer lasting erections now n more frequently, sometimes even w/o stimulation. As for side effects I never truly had any, but I do recommend staying close to home for a couple days after an increase in dosage, especially after 30 mg due to bowel function. I also want to say I know of many others in this study who had little or no sensation, and have seen increased sensation from the medication. A few have even regained some motor function. Something I was hoping for myself, but if I have it's not noticeable to me. I have no idea how long this study will continue n will post again if there are any changes. I hope this helps.
          Tim
          "Don't Die Wondering" _ Alicia Molik

          Comment


          • #35
            When you talk about a decrease in muscle tone, I am confused. Isnt that a bad thing. I know that decrease in spasms might be considered alright, but why would you want your muscle tone to decrease?
            "Oh Lord, bless me indeed, enlarge my territory, that your hand would be with me, keep me from evil, so that I will not cause pain."

            Comment


            • #36
              Originally posted by beelady:

              When you talk about a decrease in muscle tone, I am confused. Isnt that a bad thing. I know that decrease in spasms might be considered alright, but why would you want your muscle tone to decrease?
              In my case so I can sit in my wheelchair, transfer w/ more ease... that kind'f thing. I don't want the spasms/tone to completely go as it keeps muscles from atrophy n etc, and can even be used as a benefit at times. I just want it to be manageable.
              Tim

              PS: My definition of tone is tensed or flexed muscle contractions which are maintained for at least a short period of time, n spasms are the eratic and jerky muscle contractions. I may be incorrect, but that's what I based my below statement on.
              "Don't Die Wondering" _ Alicia Molik

              Comment


              • #37
                Jan,

                I have not experienced any side effects with Fampridine-SR.

                Suzanne,

                I will be posting again shortly and I hope your son does benefit from this medication.

                PN
                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


                • #38
                  Originally posted by beelady:

                  When you talk about a decrease in muscle tone, I am confused. Isnt that a bad thing. I know that decrease in spasms might be considered alright, but why would you want your muscle tone to decrease?
                  Hi Beelady,

                  A decrease in muscle tone will lead to decreased muscle tightness and spasticity which can be good, especially if the tone interferes with joint flexion or extension. A decrease in tone can also facilitate bowel peristalsis and evacuation as some have reported.

                  Comment


                  • #39
                    I am a T3 / T4 incomplete. On Friday, 1/30/04 I began taking the maximum allowed 50MG daily. Up to that point I had experienced the following as a result of smaller doses:

                    1. Bowels - Much improved. I'm now regular, consistent and relatively "normal"
                    2. Strength - Decrease in overall leg strength (muscle toning??).
                    3. Sensations - Increased on bottom of my feet (tingling) and I am experiencing new sensations in my buttocks(better able to feel and understand my orientation)
                    4. Pain - Temendous increase in neuropathic pain. Specifically in the quadriceps of both legs.
                    5. Bladder - no discernable change.

                    Tom Pierce
                    Thought for the day - "Wishing Won't Work!"

                    Comment


                    • #40
                      Seneca: Good job with the definition of tone. Last night I e-mailed a PT because I wanted another opinion on this definition. This is what she wrote: "Tone is the resting state of a muscle. Initially, people with SCI have low tone, and then when spinal shock subsides, increased tone tends to be the issue."

                      I know that for some people, they can use tone to help with standing, transferring, and walking. I don't see any real advantages to having tone from the waist up. The less tone I have results in more movement.

                      PN
                      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


                      • #41
                        Hi Tom,

                        Great to hear about your improvements! Thank you!

                        But I will certainly try to find out the results of T12 candidates in the 4-AP trials before Richard taking this drug.

                        Suzanne
                        Suzanne

                        Comment


                        • #42
                          Thanks Seneca
                          "Oh Lord, bless me indeed, enlarge my territory, that your hand would be with me, keep me from evil, so that I will not cause pain."

                          Comment


                          • #43
                            For about the past two weeks I have been at 50 mg of Fampridine-SR day. My muscle tone and spasms have decreased (by at least 50%) significantly. With this decrease in muscle tone, my overall motor control in my hands and arms has improved. My sensation is better, no muscle weakness, no side effects, walking is easier, decrease in pain, and sexual function/ejaculation, has returned. I also wake up about an hour earlier in the morning and I do not feel tired. I will post again next weekend. By the way, my caregivers have noticed these changes.

                            PN

                            [This message was edited by PN on 02-11-04 at 09:09 PM.]
                            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


                            • #44
                              Paul, that is so great! I wish my compound 4ap worked as well......

                              Jan

                              Comment


                              • #45
                                As I recently stated, sexual function is closer to normal. For about the last two weeks I have noticed that I have gone from being able to put my left hand on top of my head to over my head by about two or three inches. I will post again if I notice any more changes for the better or for the worse. I am not experiencing any negative side effects.

                                PN
                                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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