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Thread: The 4-AP List

  1. #151
    Do you have a physiatrist / rehab doctor? That's who prescribes my Dad's 4-AP/Ampyra.

    Do you have a urologist or GI doctor that has helped with any SCI related issues? They could prescribe it.

    Could you ask your PCP to call a neurologist to discuss it? Unfortunately, not all neurologists will be familiar with it.


    i'm sorry you are having such a hard time getting it. Crazy. Very frustrating....

  2. #152
    Senior Member NW-Will's Avatar
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    First I've seen of that thecompounder site. Interesting. I was taking compounded 4AP before ampyra came on the market and now take Ampyra.

    No great shakes either way, but the Ampyra does seem to be more consistent! Insurance would never pay for 4AP but covers Ampyra 40mg a day go figure.

    http://www.thecompounder.com/alternative-treatments/multiple-sclerosis/4-aminopyridine/4-aminopyridine-a-ampyra

  3. #153
    Quote Originally Posted by FellowHawkeye View Post
    Thanks for the replies. I've faxed my dr a pubmed clinical trial with 4-AP given to people with sci and so he knows now that it's safe and effective. I also faxed him the 4-AP page at The Compounder, which explains why it's better than Ampyra in effectiveness and safety too. Plus a persuasive cover letter...Been kicking myself for not getting a medical degree. It's been 10years I've been waiting for a prescription. Wonder if there's an online course I could take that is free and let me prescribe?
    Did you use this pubmed clinical trial ( LINK ) - This trial is 17 years old -
    Has anyone something Newer to present to my Doctor to convince her.
    I have meeting with her Feb. 19th.

    After I told her my plan to go for Intensive Physio Therapy to Rehab in my native Bosnia & Herzegovina, and I want her to prescribe for me
    potassium channel blocker She agreed that she will prescribe Fampyra (Canadian version of Ampyra) for me.
    I said that I have no insurance to cover for almost $ 700 per month for Fampyra and ask for prescription for 4-AP Generic Compound version
    (btw impossible to get in Canada) she became reluctant...
    Even, I have provided all details about ramping procedure and some other supportive documents.
    I think she found something about women who died in Switzerland.
    I don't know if any compound pharmacy will consider only sustained 4-AP release [(F)Ampyra] prescription.
    Luckily, I have cousin in Ohio so I can provide USA address. [USA compound pharmacies will not ship to Canada 4-AP]

    I am LOOKING FOR - Any supportive documents, Links to them that will help me to get 4-AP prescription?
    Even part in your persuasive cover / letter that you think could soft her hart....
    Idea how I can get 4-AP for human price before April when I am flying to Europe will be highly appreciated!!!
    Thanks!!!
    www.MiracleofWalk.com

    Miracles are not contrary to nature, but only contrary
    to what we know about nature
    Saint Augustine

  4. #154
    Would this be any use to a complete injury? Or is it only potentially useful or incomplete injuries?

  5. #155
    Hi again, still no word from my dr. Think I'll mail them because maybe he didn't see fax. I very rarely see any dr and have never seen a physiatrist. There's one who's paraplegic and has 3 mth wait to see him. i know of him from paraplegics who have never used 4-AP. He doesn't sound too promising to me...Found a 2000 summary from Brain,OxfordJournal, but any clinical trials more recent use Ampyra it looks like.

    Effects of 4-aminopyridine on demyelinated axons, synapses and muscle tension
    Kenneth J. Smith, Paul A. Felts, Gareth R. John
    DOI: http://dx.doi.org/10.1093/brain/123.1.171 171-184 First published online: 1 January 2000
    ArticleFigures & dataInformationExplore
    PDF
    Summary
    Several clinical trials have demonstrated that 4-amino-pyridine (4-AP), a potassium channel-blocking agent, improves symptoms in some patients with multiple sclerosis. The beneficial effects have typically been attributed to the restoration of conduction to demyelinated axons, since this effect was previously demonstrated experimentally. However, the clinical dose is ~250–1000 times lower than that used experimentally, potentially making extrapolation of the experimental findings unreliable. To examine the action(s) of 4-AP in demyelinating disorders, the drug was administered at clinical doses, both in vivo and in vitro, to rat dorsal column axons which had been experimentally demyelinated by the intraspinal injection of ethidium bromide. 4-AP had no consistent effect in restoring conduction to demyelinated axons, even to axons which were held just on the verge of conducting by adjusting the lesion temperature. However, 4-AP had prominent effects that did not involve demyelinated axons, including the potentiation of synaptic transmission and an increase in skeletal muscle twitch tension. We propose that these latter effects may be largely responsible for the beneficial action of 4-AP in multiple sclerosis patients. If so, the dominant effects of 4-AP in multiple sclerosis patients are independent of demyelination, and it follows that 4-AP may be beneficial in other neurological disorders in which function is diminished.



    Last line esp. helpful. Don't know if complete sci injuries may be helped much but if you manage to get it prescribed, could I have the name of your doctor? I still wonder if I could become a neurologist fairly quickily thru online course...Jan

  6. #156
    Comad, in my cover letter I pointed out that there are no available alternatives to 4-AP that are as effective, safe, and accessible and new treatments like 4-AP-3-Me-Oh, chondroitinase, medicalmj, and generic Ampyra won't be available to me for years. I wish I could try med mj for a while, see if it helps my stiffness. That Compounder pharmacy made the point that immediate release 4-AP leaves your system fast while sustained-release doesn't and so maybe that's more imp for people w/ms but I dunno....Wish my dr would consult with Wise, but he's so busy...Jan

  7. #157
    Quote Originally Posted by FellowHawkeye View Post
    Comad, in my cover letter I pointed out that there are no available alternatives to 4-AP that are as effective, safe, and accessible and new treatments like 4-AP-3-Me-Oh, chondroitinase, medicalmj, and generic Ampyra won't be available to me for years. I wish I could try med mj for a while, see if it helps my stiffness. That Compounder pharmacy made the point that immediate release 4-AP leaves your system fast while sustained-release doesn't and so maybe that's more imp for people w/ms but I dunno....Wish my dr would consult with Wise, but he's so busy...Jan
    Thanks Jan! Good point!!!
    If I get from my Canadian Dr. prescription for [F]Ampyra only - would any pharmacy consider this to sell to me cheaper
    Compound 4-AP immediate release?
    Or - which doctor in USA I can approach "online" with Canadian Dr. prescription for [F]Ampyra and all above arguments to get Compound 4-AP immediate release prescription ?
    ANY IDEAS ?
    Last edited by comad; 02-05-2015 at 12:15 AM.
    www.MiracleofWalk.com

    Miracles are not contrary to nature, but only contrary
    to what we know about nature
    Saint Augustine

  8. #158
    Hi Comad, I have a prescription for Ampyra but that doesn't help me to get 4-AP immediate release. Fortunately I got an appt this coming Wednesday with a physiatrist in town and he's a paraplegic as well as the dr for two friends. I'll be prepared to talk about 4-AP or a possible alternative which may be med mj at some point. I'll let you know how it goes. Wish me luck! -Jan

  9. #159
    Quote Originally Posted by FellowHawkeye View Post
    Hi Comad, I have a prescription for Ampyra but that doesn't help me to get 4-AP immediate release. Fortunately I got an appt this coming Wednesday with a physiatrist in town and he's a paraplegic as well as the dr for two friends. I'll be prepared to talk about 4-AP or a possible alternative which may be med mj at some point. I'll let you know how it goes. Wish me luck! -Jan
    Crossing my fingers for you!!!
    www.MiracleofWalk.com

    Miracles are not contrary to nature, but only contrary
    to what we know about nature
    Saint Augustine

  10. #160
    GOT THE PRESCRIPTION!

    Very good dr. He's been in a wheelchair 40 yrs after falling out of tree when 12. He's had experience prescribing immediate release 4-AP and so I'm ramping up faster than I prefer but I'm skittish about using drugs. In a few weeks I'll notice my spasticity breaking up. So excited. This is life-saving and life-changing. I can really enjoy life now. I thank the guy who suggested I see a physiatrist. This dr recently opened up time for new patients so I lucked out. You really need to see a dr like him to get 4-AP prescribed. I'm hoping a better drug will be available soon because 4-AP is only a band-aid...

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