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lambert eaton and 3,4 DAP

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archwaygal
archwaygal

my husband has LEMS, he was diagnosed about 8 years ago when we lived in florida. treatments in the past have been prednisone, imuran, plasma pheresis, ivig, solumedrol iv, and now 3,4 DAP. our urologist referred us to a trial in indianapolis, indiana. we arrived here a week ago today (2/24/09) . he was so weak he could not raise his arms off the bed, had no reflexes in his ankles, and could not feel you touch his feet. just now, the nurse and i assisted him to the bedside pot. now i'm not saying that he jumped out of bed and onto the jon....but he stood up with assistance and took about 3 or 4 baby steps to get there. that certainly beats not being able to bare one's own weight. we are 10 pills (2 @ day)

10 mg. each, into the trial. we have reduced the prednisone from 60 mg

to 50 mg a day. the imuran is a pulse dose (all at once) 150 mg a day (midafternoon). we are hopeful to go home this friday and continue

increasing the 3,4 DAP gradually (up to 100mg @ day) until he reaches a dose that he can tolerate, and is helpful in strengthing him.

0 likes, 2 replies

2 Replies

  • marikaGR
    marikaGR

    Posted

    Hello,

    My name is Marika and my dad was diagnosed with LEMS.

    I'm trying to find the 3,4 Diaminopyridine - commonly known as 3,4 DAP. I cant seem to find the substance as the new medicine - Firdapse - which has the same substance is now licenced and very expensive. Could you help? Do you know where cna i find in the UK the substance?

    Many Thanks

    Marika

    • jasmin_83782
      jasmin_83782 marikaGR

      Posted

      Hi there did u find the 3.4 dap ! I also have lems ! I'm 25 from Cornwall ! Hard to find other people with this condition as it's rare would love to hear back from you to see how u are managing many thanks Jasmin

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