This Is MS Multiple Sclerosis Community: Knowledge & Support

Howdy all,

Has anyone heard an expected market date for Fampridine? It certainly sounds like it will be a great help in symptom management if you are in the "responder" group. Is anyone on the board in the phase III trial for Fampridine? If so, how has the trial gone for you? Do you feel that it has helped with tingling sensations? With ease of walking?

Thanks,
Mike

Hi Mike,
I was bored and did a pretty thorough internet search for any mention of a market date, nothing.

If you search "multiple sclerosis restless legs" on pubmed you'll see there have been a ton of studies, and I noticed last night that there is a new one in the journal "Multiple Sclerosis" http://tinyurl.com/39hbfq I don't know if that's responsible for the "tingling sensations" you mentioned, but might be worth investigating.

The reason I mention this, regardless of market date for Fampridine, there are treatments for restless leg symptoms, which I've been told are effective.
Bob

Not sure if you know this, but you can get the active ingredient compounded into pills, now. I take it (4-AP) currently and find that it helps my walking / clonus, but has no noticeable effect on tingling.

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Ataxia, balance, clonus, urinary urgency, paresthesia, restless leg, to mention a few. 10+ years has left its mark.

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This weekend I went to a MS Society talk given by Dr. Aaron Miller, chief medical officer of the National MS Society. If I am not mistaken he said fampridine would be on the market one and a half years from now. I'm thinking about trying it, getting it compounded by the local pharmacy. I don't have tingling but any improvement in the gait department would be most helpful. My understanding is the key to avoiding the side effects is in the dosing.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

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The only side effects I have noticed are:
1. When I first started, taking it too close to bed time caused sleep issues. But a cup of coffee or can of cola after midday causes me sleep issues.
2. i ONCE accidental took a dose too close to the previous dose, and it caused my tingling to be worse. Being a "Bird poison" as a chemical, i think death would always be a very slight concern, though I don't know the dose for that in humans, and this is a concern with nearly ALL drugs anyway.

My understanding (limited I am sure) is that famradine is simply a SLOOOOOW release version of 4-AP, thereby allowing higher dosing. I have previously got it compounded in 5mg slow release capsules and spread them over the day manually, to mirror the slow release effect. But now I simply take 10mg capsules (in slow release filler from a compounder).

Cure,

You're right about Fampridine-SR being a "S"ustained "R"elease version of 4-AP. So can you fill me in on how you go about getting 4-AP compounded? Does anybody in the US know about how this would be done?

Thanks,
Mike

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Of course I am not in the US, but I think my compounder had to get it from the US. I found out it could be compounded from someone else on this site (in america)

I just called my regular compounder and they researched if they could get it (ie 4-AP). Then I just got a script, and away I went.

I've been taking 4-AP on and off for years. For me, the effects are subtle, a slight increase in leg strength. These days I take the drug on an as needed basis, on days when I expect to be fairly active. Side effects have included nausea, anxiety, and that annoying "speedy" feeling. You've got to be careful not to overdo it, because higher doses will lead to seizures...

In the US, the drug can be compounded at Bryce laboratories, 1-800-RX-USA-RX. They are located in Stamford, Connecticut, but will ship anywhere. Of course, you will need a prescription from your doctor.