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Titrating Firdapse (Amifampridine)
One of the first things a newly diagnosed LEMS patient does, if prescribed amifampridine, Firdapse or Ruzurgi, is titrate up to an effective dose. I’ve never had Ruzurgi so my observations and comments refer to Firdapse, amifampridine with a phosphate added for stability. Initial titration is to get you to an effective dose, able to keep your LEMS in a good place MOST of the time. I emphasize “most”, because LEMS can be pretty crazy day to day. One day may be great, the next day pretty rough. No rhyme or reason. So again, the objective is to feel decent most of the time, taking into account the ups and downs. All this of course is done with the guidance and approval of your neurologist. So it’s important that you have good contact with him or her, especially during this titration period. Be proactive. If you don’t think that first dosing plan is working, let your neurologist know and ask for an increase. You’re looking for your happy place. And then there’s the adverse reactions. Carefully watch for any adverse reactions. The most common I hear of and experience occasionally myself is a tingling around the mouth and nose. This is one I tolerate because I need the good effects of the medication. Make sure you know all the possible adverse reactions and report it to your neurologist if you experience one.
I hope this helps you with your titration. -
1 Reply
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I started using Ruzurgi about 10 months ago. It has changed my life! I started out on a minimum dose of one 10 mg tablet 4 times a day. It wasn’t enough. I did a little research. Ruzurgi was initially developed for ages under 17. I am 73 and weigh a lot more than any teenager I have ever met! So, in conjunction with my doctor, I gradually increased the dosage to (2) 10 mg tablets 4 times a day. That is the optimal dosage for me. It’s really trial and error.
I also experience the tingling around my mouth and nose, and sometimes my teeth hurt. But I too tolerate this because of the wonderful benefits of the medication.
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