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14th Toferson Treatment and coming up on a Year of Dosing!!
Here is an update on the QALSody/Tofersen treatments.
Last week I spent three days in Miami. I continue to volunteer for several studies, and I see the ALS Clinic team at the Desai ALS Center at the University of Miami. I have to give BIG shout outs to Dr. M. Benatar, Dr. Anne-Laure Gringon, and Dr. N. Carberry! They are all amazing. I was declining so quickly in early 2023 and I don’t think I would have made it to the end of the year if it was not for the Tofersen treatments. My doctors agree. I started July 12, 2023. I started applying for early access in December 2022. It was a nightmare to say the least. From March to May, my FVC dropped from the 80s to 30. It has slowly improved starting last September. At my visit last week it was a 43. The past three months it has been in the low 40s so I hope the climb continues. I am fatigues so quickly and easily. All my muscle strengths have improved as well! Don’t get me wrong, it is still obvious that I have ALS, but I’ll take any gains I can get. My NFLC count went from 17 (high) to 2.3 (normal non ALS range). Supposedly that is an indicator of damage so I’m hoping that means there is no new damage. They have told me that I can likely expect to continue to see improvements, but I will never be 100%. This treatment is a huge step in the right direction so that is a plus for our community!
I’m still working although it wipes me out. I tend to come home and sleep for 3 to 5 hours after work. It’s a great thing I love my career!!! I do have 2 months off during the summer except when I pick up extra work. Lately all these medical expenses have me picking up work. I do see myself going on disability in the next year or two. There is so much to consider with that decision and I’m lucky enough that I have that choice. Managing ALS when you are single is challenging. I have a great group of friends and my mom has been “visiting” since December 2022 when I was diagnosed. 🙂
So, all in all, I feel very fortunate to be a candidate for QALSody! It is making a difference and I am grateful. My next treatment is July 18th.
Amanda
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11 Replies
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Wow , Sounds great. How do you apply? I am homebound, in a power wheelchair, totally dependent, cannot speak, with ALS for 9 years.
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You just need to talk to your doctor. If you have one of the SOD1 mutations, you are a candidate. If that doesn’t work, contact Biogen, the pharma company. They have patients advocates that are helpful getting things through insurance.
Unfortunately it doesn’t work for all ALS patients. You would need genetic testing to determine if you were a candidate. From my understanding there are only about 300 people in the US that are candidates for QALSody.
Amanda
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Fantastic news Amanda. Thanks for sharing your updates bringing us all hope and joy. Hopefully within two years you retire just because age and not from getting worse. At that time looking for the cure
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I have recently had my 100th Toferson treatment ,al of them at Sheffield Hallamshire Hospital in England the staff are amazing I am completely bedridden now but still battling on as best I can
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I want to share something my husband started 2 weeks ago for energy. Ritilin has improved his energy so much. I have ADHD as adult and teacher and I need it for focusing but different effect on my husband. My husband’s family doctor prescribed for him. Thought I would share. Might help with your energy. Not sure what I shared is all allowed by first post.
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Lisatodd,
Thank you for sharing! You can share all the information you have. We always encourage to talk to their doctor, which for Ritilin you have to have a prescription, so that’s a given. There are many, many drugs that are used for off-label reasons so I’m not surprised to hear about that specific drug. Thanks again.
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How do you know if you have SOD1? My husband was diagnosed in November all his issues are he can not eat any food. Speech is horrible by afternoon. He has days he is exhausted. Doctor started him on ritilin which has improved his energy by a lot. Would this help help? He is on all the three R meds.
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Ask his doctor for genetic testing. Typically there is a family history of ALS.
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My family had no known cases of ALS but I have a SOD1 abnormality in my
genes. I would suggest pursuing the genetic testing because if he
does have a known defect, it can open up new avenues of treatment and,
just as helpfully, help to ignore treatments that do not apply.invitae.com did my testing at no charge. It took a couple of weeks to obtain results.
Eric
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I asked his doctor he does not have any family members and does not have SOD1
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Lisatodd,
Did they do genetic testing? If they did not I would push the issue and demand it. It would have to be sent out to a lab. I’ve also had to do that three times – research (twice) and then once when I was diagnosed for insurance to cover the Tofersen treatments. I used the same company that was previously mentioned.
Amanda
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