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Thread: 4AP

  1. #11
    Senior Member mk99's Avatar
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    4AP side effects?

    Anyone have any 4AP side effects while taking it?
    I'm not too concerned but one of my big fears is upset stomach.

    Also would it interract at all with Ditropan, Alcohol or Marijuana?

  2. #12

    Side effects

    for the first week or so, it really screwed up my bowel program. But I think I started out using too much. I was using the 10 mg capsules to start with which was a lot for me. After I've backed off to the 5 mg capsules, things were much better.

  3. #13
    Super Moderator Sue Pendleton's Avatar
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    I've been taking 4-AP, the compounded formula, since early 1998 after showing benefits from it during a phase 2a clinical trial of it in late 1997. I have to take it with food otherwise I get mega heartburn. No upset stomach though. I don't know about its interaction with pot. I occassionally have aglass or two of wine without figuring out when my last dose was and have yet to have that bother me. It is supposed to be an antaganist for 4-AP though...Wise? No problems with taking 4-AP and ditropan. LOL Trust me!

    4-AP or 4-aminopyridine is a potassium channel blocker that helps messages from the brain jump demylinated or dysmyleinated axons. It has helped me in many ways and some has come after taking it or a long time. But mainly......I have better muscle endurance and strength, fewer spasms, I take a LOT less anti-spaze meds like valium. My bladder holds more before I get the urge to "go" (cath), bowels work better without all the softners and other junk I needed before. Now just use the magic bullet occassionally. Hot and cold sensation has improved, cold more than hot though.

    I'm currently taking 20mg three times a day with meals. I did that after a very slow ramp up to 45mg for 2 years or so then switched to 60mg a ay. Very few side effects when you ramp up slowly. Had some numby feeling around my lips, felt like a hummingbird on speed a few times and some troubles sleeping. Oh...and occassionally spasms would get worse for a bit and then a muscle would start working better. Kind of hard to fit the benefits I've had in to little circles of accomplishments like a) can now walk, b) no longer uses catheters, etc. It's sometimes subtle differences but, for me, they add up to a lot.

  4. #14

    Not All 4-AP Is Created Equal

    The first 4-AP study that I participated in was in 1995, and took place at the Long Beach V.A. in California. Elan Pharmaceuticals sold the patents to the 4-AP time release formulation to Acorda Therapeutics. Below is a letter that I wrote to an attorney, and I included my experience with this compound. In 1997 I started the long-term phase of the 4-AP clinical trials at the Long Beach V.A. I was in the study for a little over three years and during that time the trials were moved to UCLA. Larry Barnes died around 1998 due to SCI complications. He was a graduate of Rice University with a B.S. in engineering. When I knew him, he was working at TRW and pursuing his master's degree in psychology. May he R.I.P.
    July 24, 1996

    Dear David,

    I enjoyed our meeting with you and your legal advice has been helpful so far. I am still working on getting a new power chair and I will know in about five more weeks if it will be approved or not. I also contacted Larry Barnes and have come to the conclusion that this accident with his bathtub lift has been a significant setback to his physical health. He told me about the different medications he is now taking since this happened and although it may or may not be a lot for his condition at this time, I told him about the benefits of 4-AP when I was in the study.
    I strongly believe that this drug can help many people with spinal cord injuries and I don't want to see this "fall through the cracks." When I took 4-AP, it reduced my pain by 80% and did about the same for my tight muscles and spasticity. It also improved my sensation by moving it closer to normal. I also believe that it did restore or improve muscle function, somewhere between 3 and 5 per cent.
    For people with pain and discomfort, where the choice is narcotics, evasive surgery to cauterize damaged spinal nerves, or just live with it, 4-AP seems to take care of these problems.
    While on the medication I experienced no cognitive or physical side effects or withdrawals. I found that when I woke up in the morning (sometimes a little bit earlier), I felt refreshed as well as a slightly improved bowel program.

    Sincerely,

    Paul Nussbaum

  5. #15
    Super Moderator Sue Pendleton's Avatar
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    I agree Paul. I would much rather take the sustained release formula that Acorda Therapeutics is taking through trials. Just having a steady stream of the drug in your system and not having to judge the highs and lows would be fantastic. And I never had heartburn on the Elan formula either. I would think since it's the only real thing out there so far for chronic injuries that the FDA would speed things up a bit it seems the opposite is true. I doubt they have a clue how different each incomplete injury is from another.

  6. #16
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    $$

    Sue,
    How much does 4-AP cost?

  7. #17
    Senior Member mk99's Avatar
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    cost

    I paid $180US for 6 months supply. This included a $50 "prescription" charge. Seems quite reasonable and it got through Customs no problem. (I live in Canada)

  8. #18
    Super Moderator Sue Pendleton's Avatar
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    I pay about $60 for 63 capsules of 20mg each. Compounding pharmacies make capsules up as ordered so that much of the cost is per capsule and not strictly by amount of medicine in each capsule.

    This would also be a good time to talk about shelf life. 4-aminopyridine has a very short one. If you get 6 months worth of 5 mg capsules by the time you get to the last capsule there will be little effect at all from the medication. I buy mine for 3 weeks at a time 3 X day X 7 X 3......63. I have found that if I order more than this at one time that I can tell the pills are not the same strength as the first few. It is one of the things Elan fixed with their patented formula that compounders haven't been able to do. Try keeping your capsules in a cool, dark place like most meds but ordering 6 months at a time is not a good idea with this drug. This is for human consumption obviously. When used to poison birds on airport runways they use 50 pound bags so shelf life is not as important...

  9. #19
    Senior Member mk99's Avatar
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    So they use Ditropan as rat poison and 4AP as bird poison.

    I'm starting to see a trend here.

    Perhaps a "cure" is a combination of potassium chloride & cyanide injected into the cord? -)

  10. #20
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    MK99

    I'm interested to know what kinda returns & side effect did you get from the 4-AP?
    From 2001 till now did you recover any thing & still sustained?

    every time you fall,
    stand up tall....
    come back for more

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