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Thread: The 4-AP List

  1. #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

  2. #32
    Senior Member poonsuzanne's Avatar
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    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

  3. #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

  4. #34
    Senior Member TimN's Avatar
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    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

  5. #35
    Member beelady's Avatar
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    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?

  6. #36
    Senior Member TimN's Avatar
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    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.

  7. #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

  8. #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.

  9. #39
    Member THP's Avatar
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    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!"

  10. #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

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