QUESTION: I take 20 to 25 mg of compounded 4 ap for my sporadic episodic cerebellar ataxia. Most research indicates upper limits of 20 to 25 mg. Your ramping schedule goes up to 40 mg. I would appreciate the information I can share with my neurologist about the research you used to arrive at your schedule of 40 mg being a safe amount. I am also confused about the blood concentration needed.
LARRY’S ANSWER: Sorry, no research available – just anecdotal reports from users over the past years mixed with decades of pharmacy practice.
Aminopyridine is rapidly cleared from the body (3 to 5 hours) and multiple doses per day are clinically superior to twice daily slow-release dosing. It doesn’t seem to accumulate in the body so every day is mostly a repeat of the prior – starting over every morning.
The ramping protocol was devised to help customers determine the best dosing for their personal situation. Yes, excess use can result in seizures, and that’s the reason for ramping, a sort of “test the waters” approach. Once a mature user understands how 4AP works for their symptoms they pretty much adjust their doses within limits – and steer clear of excesses. The key words are mature and understanding.
Some people are satisfied with their results when they use 5mg 3 to 4 times daily. Others have found that they are pleased with 5, 10, 5, 10 – and even with an added dose here and there when they “feel the need”. No, this is not scientific, but it does offer clinical benefits that a standard 10mg twice daily can’t offer.
When spaced out, higher doses are safe. A problem would certainly come up if someone decided that 40mg was a reasonable amount and took it all in one dose. It’s not reasonable. I’d expect seizures to follow. The serious side effects might also happen with a single dose of just 20mg.
Like much of healthcare, dosing of medicine is sometimes more art and understanding than fixed doses and specific times of the day. The human body isn’t a machine and assuming it can be treated as one is a mistake. In our modern world, however, it is far more convenient to set specific amounts even if the end results are clinically sub-optimal. It takes a mature doctor who understands 4AP and a mature patient who understands his/her body and symptoms to use 4AP effectively. The twice-daily dosing of 10mg is commercially available but clinically not as efficient as using smaller amounts 4 to 5 times daily. The commercial slow release product is simpler and ostensibly safer because it removes as much responsibility as possible.
While I am not recommending 40mg per day, I remain confident that 40mg isn’t toxic when used properly.
I have no suggestions about blood concentrations because I have no confidence in a relationship between a blood level and clinical results. What clinical benefit would there be if blood levels are measured and found to be in some mythical “good/safe” range, yet the patient has no positive results? Furthermore, because 4AP is cleared quickly from the body, how would anyone know exactly when to draw a blood sample?
I hope I’ve been able to resolve your concerns. If you have other questions don’t hesitate to write again.