ALS News Today Forums Forums Living With ALS Qalsody treatment

  • Qalsody treatment

    Posted by charli on June 29, 2024 at 11:27 am

    I am a young french woman and I have got ALS SOD1. I am soon going to have Qalsody.<I can’t find anywone in France to share experience.So if you are getting this treatment I would love to hear of you.I have nothing paralysed for the moment. But my breathing is down to 30 and it’s very hard.I’m impatiente to read you.Thanks Charli

    Gigi replied 1 week, 5 days ago 2 Members · 1 Reply
  • 1 Reply
  • Gigi

    July 4, 2024 at 7:17 pm

    Hello Charli. I live in the U.S. I have been in the Tofersen (now Qalsody) Clinical Trial for 3 1/2 years. I have had no progression in symptoms since receiving Tofersen. It literally saved my life. I received the drug early in my diagnosis so have only slight impairments for which I am very grateful. The treatment (lumbar puncture) every 28 days is a small price to pay. When the Trial ends in another month I am hopeful that my insurance will pick up most of the cost, which would be cost prohibitive without insurance. I hope you receive the same benefits from Qalsody as I have.

Log in to reply.