firdapse

I have recently been diagnosed with LEMS and my neurologist tells me that the medication in need is 3 4 DAP which is an unlicensed medication which has been used successfully for approx 20 years and he has treated patients with it.  However now that a licensed product has come to the market - Firdapse - he is no longer allowed to prescribe new patients  3 4 DAP and Firdapse is hugely expensive and the NHS In The UK  will not pay for it.  so I am In a no win situation . I am presently prescribed Pyridostigmine, steroids and Azathioprine.  This helps a little but I have to use crutches around the house and a wheel chair when I go out.  I wonder what medication you are prescribed and do you live in the UK.

Do you find this treatment helpful and how often do you have it?  Does it help greatly with your mobility?

Hello~ My husband was diagnosed with LEMS a year ago. He had a neuroendocrine tumor on his pancreas that was removed laparoscopically last October (2016). He remains to be symptomatic. He had undergone steroid treatment, which offered the best but was at a high daily dose and the doctors wanted him off of it. He stopped taking that a few months ago. He has also been taking the Pyridostigmine. Mid July he started taking the Firdapse, It is still in experimental stages here in the US. We are finding it works best in conjunction with the pyridostigmine. But it is not the magic pill we had hoped. Not for my husband anyway. It seems some have better results. Tomorrow he will begin IVIG infusion treatment. I am interested to know how others with LEMS respond to this treatment. I wonder if having SCLC contributed to the treatment success (or other wise). My husband has not tried the 3,4-DAP treatment.