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Compounded 4-Aminopyridine anyone?

My neurologist recommended the compound form because Ampyra 10mg was too high a dosage for me. I am diagnosed with "secondary progressive" MS, am 70 yrs. old, and have trouble with distance-walking. I wear an AFO for foot-drop and a knee-brace for knee hyperextension. Thoughts and experiences anyone?

  1. Hi Echo! While waiting on community feedback, I thought you might appreciate this information on Ampyra (with some mention of compounded 4-Aminopyridine) -- It sounds like there are similar potential side effects, but the compounded version *might* mitigate some of the side effects you may have experienced on the 10 mg Ampyra. Might I ask if you were on the 10 mg, or did your neurologist decide it was too strong a dose and go right to suggesting the compound form? Thank you for reaching out to the community! We're glad to have you here! Best, Erin, Team Member.

    1. I am very interested in hearing more about this
      I am also 70 years old have medium hyperextension and slight but problematic foot drop.... Otherwise no symptoms.

      1. I took 5mg. of compounded 4-Aminopyrodine 2xd for several months, and could not get up to the prescribed 3xd without "tingling" side- effects. It didn't seem to help my symptoms of rt, knee-hyperextension, rt. drop-foot, and rt.fingers numbness. So my neurologist advised I stop taking it. I have never taken any other MS medication. I've increased my exercise, and go to PT 2xwk., and wear a knee-brace for the foot-drop and knee hyperextension. I was diagnosed with MS in 2011.

        1. I'm 72 and early on I had weakness in my right leg. My neurologist prescribed 4-AP and I could not tolerate it. He lowered the dose way down to about 2.5mg., and we gradually built it up. I now take two pills daily, 20mg. each. It's a godsend. It helps me walk so much better. It takes away pain and odd movements in my legs. When Ampyra came out, the Dr. said it was too weak for me, so I stuck with 4-AP. I have to wear a Swedish knee cage for an overextended knee. I also take Nortriptyline for numbness and pain which is a miracle worker. And I eliminated gluten, and an aching, constant pain in my good leg went away. I actually don't have much pain I'm dealing with anymore. I also get Botox bladder injections for incontinence when pills no longer worked. I'm doing well.

          1. It's wonderful to hear that you have developed such a good treatment plan, . I hope it continues to be effective for you. Wishing you the best! - Lori (Team Member)

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