Compounded meds - 4 AP vs. Ampyra

[beingmindful]

My DH's MS expert neurologist has recommended 4 AP, as insurance will not cover Ampyra (he walked 25 feet in less than 8 seconds, so does not qualify under insurance guidelines). The doctor thinks that DH may benefit from the compounded form (4 AP) from a compounding pharmacy. Are all compounding pharmacies alike? Are some better than others? Is there any difference between the active ingredients in Ampyra and 4 AP?

[tellnhelen]

If you have an Rx...Skips Pharmarcy in Florida is pretty good

[knuckle]

I get my 4-AP from Skip's. $95 for a 100 day supply of 3 x 10mg instant release daily, which works out to around a buck a day.

My neuro prescribes it. I take a capsule every 6 hours, none at night.

You can get a sustained compounded release form too from Stark's Pharmacy though I think it's more expensive. Evidently, Skip's doesn't believe you can make a quality-controlled version of sustained release 4-AP.

I also get my LDN from Skip's - $66 for a 100 day supply of 4.5mg as prescribed by my neuro.

The same ingredient, dalfampridine, is in both. Ampyra has the time-release action, but limits you to 20mg over 24hours.

Are all compounding pharmacies alike? Probably not. I've been happy with Skip's. Their pricing is good and deliver by 2-day mail. They have 25,000+ LDN customers so I think they've got that compounding process pretty well down.

[heliotrope]

No, they're not the same. They're not regulated so you have no guarantee of the dose you're getting or what it's mixed with.
Ask your neuro. Mine keeps a list of local compounding pharmacies that he considers safe.

[skreynolds57]

I've used Skip's for awhile and have had no problems. They do a lot of 4-AP (and LDN) business so I believe they are good at it.

[nightflyer]

4-AP

I just got back from my neuro. We talked about 4-AP and Ampyra. I didn't know this before when I took 4-AP but there is a "big" risk of seizures with it. My neuro said it was best to take Ampyra now that it has been approved.

[Redwings]

No, they're not the same. They're not regulated so you have no guarantee of the dose you're getting or what it's mixed with.
Ask your neuro. Mine keeps a list of local compounding pharmacies that he considers safe.

That depends on the definition of "regulated." All pharmacists must be state licensed, obey all state pharmaceutical laws and be technically competent to remain in practice. All pharmacies must be registered with the state Board of Pharmacy. An untrained, unlicensed amateur can't just set up shop in his basement and legally operate as a pharmacy. A licensed pharmacist is required to practice in a safe manner, which includes quality assurance of the drug being compounded. In that respect, compounding pharmacists/pharmacies are legally "regulated." And there are plenty of regulations.

Whether compounding pharmacists' performance is monitored or they continue to practice competently or their facilities are inspected is a different issue than being "regulated."

[heliotrope]

Redwings,
What I meant is that the same safeguards are not in place in terms of dosage as there are with mass produced drugs. You're right, of course.

[M.A.F]

hi, I had a Siezure when i was on 4-AP, i spent 26 hrs in the IR, that stuff came very close to killing me, 4-Aminopyridine was used as a bird poison back in the 50's.mark

[skreynolds57]

Mark, do you mind telling me what dosage you were on at the time you experienced a seizure and how long you had been on 4-AP?

Thanks

[M.A.F]

hello Sky, it was 1-10mg pill 3x a day(30mg total). i was on 4-AP for about 10 months(Seizure was Aug 2009). my MS Doc thinks that that pill was over the 10mg dose. but i think it was a slow build up that got to a toxic point.mark

[skreynolds57]

Yeah that's a normal dosage so it might have been a quality control issue. Thankfully I've had no problems in three years at that dosage.

[Riverwild]

To be specific-
Dalfampridine is the scientific name for Ampyra, a drug made from 4AP and other fillers.

4AP is the shortened name for 4-aminopyridine.

4-aminopyridine is an avian pesticide, a bird poison used to control birds who eat crops. BUT it also is a potassium channel blocker and has been found to stop the leakage of potassium that interferes with neurotransmission. It has been used by people with MS and people with spinal injuries, obviously off label, and very inexpensively for years.

The drug company that developed dalfampridine decided to investigate this usage and found that it did indeed work. They partnered with another drug company that owns a timed release dispensation method, and are now charging a huge amount of money for their manufactured timed release drug, Ampyra.

You can buy 4AP in huge amounts for very little money for avian pest control. Skip's and other compounding pharmacies take the base product and mix it with a filler and sell it for what it costs to do that along with a small profit. They are licensed pharmacies and are very good at what they do.

Most pharmacies in the USA were compounding pharmacies before the FDA and drug companies, and many pharmacies still are, but there is not a huge call for compounding now, since the drug companies try to market the drugs and make the money.