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Qalsody treatment
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
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2 Replies
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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.
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Hello Charli,
I also live in the United States and started getting QALSody treatments a year ago after it was conditionally approved by the FDA. I have not seen any ALS progression since starting. My FVC score dropped to a 31, and has slowly improved. I am now at a 44 and I feel so much better. I am still out of breath quickly, and no where near the typical score of 90-100, but I’ll take the improvements as they come.
I’m one of the moderators on the forum and you can find my updates here too! Just look for my discussion string. If you have any questions please feel free to reach out.
Best Regards,
Amanda
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