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Thread: The 4-AP List

  1. #71
    Senior Member nevada's Avatar
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    Paul
    I have been totally off 4 AP now for three weeks and have lost all that I gained and then some. I had not had a UTI in almost 19 months; I have now had two in the last month. My legs were warm to the touch all the way to the tips of my toes just two weeks before I had to stop taking the drug I lost that in two days. I did not experience any accidental urination at all prior to starting the drug and at the 30 mg a day dose I leaked like a sieve. My tone and spasms are about the same but the clonus is worse. I am having difficulty inserting the catheter into my bladder to do my intermitting cathing, I had myself scoped and no problems were found. The only bright side to the whole thing is that the bowel routine is still daily and still takes only five minutes or so and I am only doing minor digital stimulation nothing else. I am going to wait another few weeks and see how things go but I think I may get a script and find a compounding pharmacy. I want that warmth in my legs back more than anything.

    Nevada

  2. #72
    Paul, you wrote... 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...so you could start buying that now until Fampridine-SR is approved.

    Jan

  3. #73
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    nevada what do you mean by warm feeling in your legs?
    you feel heat? or do you feel the sense of normal pressure touch?

  4. #74
    Senior Member nevada's Avatar
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    Varain
    By warm feeling I mean that my legs were warm to the touch not cold as they had and are now. My legs have always felt warm to the touch down to my knees but after two months on the drug the warmth went all the way to my toes. I have always been able to feel if someone is touching my legs and can tell which leg and where they are touching. I hope this answers your question feel free to email if you want more information

    Nevada

  5. #75
    Senior Member NW-Will's Avatar
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    4-AMINOPYRIDINE 4-AP Fampridine

    I was wondering how many people out there now, are taking 4-AP.

    What is your injury level?

    How long have you been taking it?

    Which drug are you taking....fampridine?

    Slow release or quick release?

    Dosage?

    Pros and cons that you have noticed?

    How is it being paid for ? insurance etc. ?

    What is a compounding pharmacy?

    I'm seeing my spinal doctor next week and am hoping
    to get a prescription any advice would be appreciated.

    T4, incomplete, Asia B, 22 months post injury.


    From other threads :

    4-AMINOPYRIDINE TREATMENT FOR CHRONIC SPINAL CORD INJURY by Wise Young, Ph.D, M.D.

    Acorda Therapeutics Announces Positive Vote by FDA Advisory Committee for Fampridine-SR (13 oct 2009)

    CC thread - Acorda Therapeutics Announces Positive Vote by FDA Advisory Committee for Fampridine

  6. #76
    Senior Member NW-Will's Avatar
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    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?

  7. #77
    Senior Member mr_coffee's Avatar
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    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; 12-06-2009 at 02:38 AM.
    Injured:10-16-04
    C7/C8, T1 incomplete;


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  8. #78

    Question 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

  9. #79
    Senior Member NW-Will's Avatar
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    Quote 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.

  10. #80
    Senior Member mr_coffee's Avatar
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    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; 12-07-2009 at 04:15 AM.
    Injured:10-16-04
    C7/C8, T1 incomplete;


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