The 4-AP List

[hlh]

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....

[NW-Will]

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

[comad]

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!!!

[JamesMcM]

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

[FellowHawkeye]

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

[FellowHawkeye]

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

[comad]

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 ?

[FellowHawkeye]

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

[comad]

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!!!

[FellowHawkeye]

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...

[comad]

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...

Great News !!!! I am so glad for your success !!!!
I will see my Dr. 19th Feb. I expect only to get Fampridine prescription ($ 800 per month)
as there are no compounded 4-ap immediate release available in Canada.
Even if I would be able to get prescription for 4-ap immediate release I can not find compound pharmacy
to send it to Canada....
I have some money saved and I think I will invest $ 1600 for 2 months of Fampridine
and if I get any positive changes I will make big noise about this.
I will move down south....

[FellowHawkeye]

Sorry about Canada's unhelpfulness. That's frustrating. Well, my dr isn't so great, but stupidly prescribed me 10 mg capsules instead of 5 mg. He well knew what I wanted and had used before. So last night took a pill after late dinner and a few hrs later went to bed but felt really woozy while walking. Afraid I'd fall. And can't talk to dr til Tuesday! I thought I might take pill as I get into bed, but maybe it'll keep me awake. I'm disgusted with the dr who had info on dosing from the compounder with only 5 mg caps...

[hlh]

Congrats on getting the 4-AP! Often the side effects will abate after a few days. Try to be careful. 10mg capsules is really the normal size, and it is possible that the pharmacy replaced the 5mg after talking with the doc..... I have seen that before. Keep us posted on your results.

Comad - why spend so much money? Ask your cousin to buy 4-AP in Ohio and send it to you! Do you still not have any health insurance? Is there any way to get some?

[comad]

Wait - FellowHawkeye would it be possible to take half of capsule somehow?!
Just for ramping purposes?
Hey hlh - I have family in USA but for someone to get 4-ap need to get prescription and pharmacy will not take Canadian prescription; In Canada no insurance coverage for SCI and Fampridine unfortunately

[hlh]

I see.

Have you seen Lynnifer's thread? She is in Canada and got insurance to cover it SCI (I think hers was a transverse myelitis - not a traumatic SCI). Have you thought about trying to appeal the insurance company to get coverage? That is what we are doing in the US with some modest success.