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Are you getting QALSody treatments?
At last count, there were more than 25 genes known to be associated with ALS. ALS cases associated with a mutation account for about 70% of familial ALS (fALS) and 10% of cases of sporadic ALS (sALS). About 5–10% of all ALS cases are inherited.
Have you tested positive for a mutation? If so, which one? Are you getting specific treatments or therapies based on your specific mutation?
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9 Replies
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I have fALS, SOD1 mutation. I just had my 10th qalsody treatment. I’m hoping to be one of those who experience some improvement.
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Leander – I’m have my 33rd treatment the first week of February – at least I think it’s #33. I’ve had great success with it. I’ve had some complications too, but they were resolved. I seem to be holding steady and even improving in most areas. My muscles have gotten stronger, nowhere near the pre-ALS me, but it’s a win. My breathing score went from a 27 (7/2023) to a 63 in January. The progress is slow and steady. The only thing not improving is my throat muscles. I can still talk, but sound raspy. I can swallow but need to be careful. My doctors believe that if I went to a 21-day treatment schedule this area would likely improve. However, because of the lack of data my insurance won’t approve it. It’s a bump in the road at the moment, but I’m trying to focus on the positives, and there are many! If you have any questions I’m here as a resource. Also, there is a Facebook group for people on QALSody if you are on that platform. They share a lot of good information.
Amanda
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Can you share what the Qalsody Facebook group is called? I’m assuming it’s a private group, correct?
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Patients of QALSody is the name of the group. If you can’t find it, send me a friend request Amanda Ann Sifford – in Florida.
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I am receiving Qalsody treatments- in fact next week I will have my 42nd. I was diagnosed in October of 2022 after about 1.5-2 yrs of symptoms. I am a slow progressor; I haven’t had any improvements but have certainly stabilized. I apparently have fALS since my mother died over 45 years ago of ALS. The SOD1 variant I have is Exon 5 c.455T>G (p.lle152Ser). Also known as l151S. There does not seem to be much info on this variant. I am still walking in my home, unassisted (with occasional balance problems) but use a cane outside of my home and a rollator if I have to walk more than 1/2 block.
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I’ve been on Qalsody for 4 years now. I am probably part of the 10% sporadic population with a genetic mutation because I don’t know anyone on both sides of my family with ALS. Thankfully, I’m a slow progressor but I feel Qalsody has helped. I’m been stable, my neurofilament levels dropped and have stayed in the normal level, and I’ve increased some muscle strength. Small increases but as my neurologist said, muscle strength increases were previously unheard of! My doctor is monitoring my CSF protein levels and if it spikes, they may have to adjust dosing (make it less frequent than monthly) which they’ve done for a few patients.
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My gene analysis revealed my inherited gene code to be <b style=”font-family: inherit; font-size: inherit;”>C9ORF72
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I’m really excited to see other pALS in our Forum that are on QALSody. As I’ve posted, I started July 12, 2023. I was the first person in Florida, second in the US (from what I’ve been told) to get on the drug outside of clinical trials. Don’t think I wasn’t pushing to be the first, but my insurance was slow!! Since my mutation is slow progressing, I did not qualify for any trials.
I thought I would share an update. My family, SOD1ers, has lost over a dozen members to ALS, including my dad. At my lowest my breathing score was a 27. Man, that was hard! I couldn’t take 5 steps without being out of breath. I had to take a breath between every two to three words — and I was still grateful because I knew it would get worse. This past January my breathing score was a 63. I cried, the doctors cried. the New York Times photographer (they are doing an article) caught me ugly crying on camera. Yikes! Happy tears. Happy tears!
All my muscles have slowly and steadily improved except for my throat. That appears to be a trend for QALSody. Please understand that by improving, I don’t mean I am back to my pre-ALS self, I am not. However, in the past improvements were unheard of and considered a miracle. I refer to QALSody as my “scientific miracle.” My NFLC have dropped and are in the normal, or close to normal range. We test every couple of months. My doctor refers to QALSody as a Moonshot moment in the field of ALS.
This journey has not been without trials and complications. I did get Myelitis and Radiculitis, serious cases of both, a little over a year into the treatments. They now have a regimen to prevent that for me. Apparently, some of my experiences have led the way to help others. I have been passionate about volunteering for medical research and advocating for pALS for decades, and I am so grateful to see the advancements that are being made. There was a time that I didn’t believe that would happen in my lifetime. We need more, and we need them yesterday!
The medical team at the University of Miami believes that by increasing the treatments to every 21 days (instead of 28) it is likely or possible for my throat muscles will improve leading to my voice improving. Right now, my voice is being impacted and may cause me to go on disability. I’m a school psychologist and talking is definitely a requirement. My plan is to try to make it to the end of this school year before going on disability. My insurance will not pay for the three additional treatments that the 21-day regimen would require. QALSody’s standard of treatment is every 28-days. This means that I would have to pay for the 3 treatments out of pocket – between the medication ($18K a treatment) and the cost of the procedures, that’s a huge chunk of money! I started a fundraising campaign because as you know, living with ALS isn’t cheap! My insurance requires prior approval. Medicare does not – so, going on disability and getting billed for what isn’t covered (scary) may be the only way to get what I need.
The good news is if this works, and then there is evidence that the 21-day regimen is beneficial, then other pALS will not have to endure this burden. All for one, and one for ALL!
Cheers and Happy Rare Disease Month! We got this as a community.
If anyone has questions about my experience or the QALSody treatments, I’m an open book. I can send you my number or email. I’m all about supporting other pALS and finding a cure for all of us!
Amanda
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Can I ask what commercial insurance you are on and how you’re getting the $18k out of pocket figure?
I’m on Soc Sec disability (retired early) and recently applied for Medicare. The challenge with Medicare is that one won’t be eligible anymore for the Biogen copay program which effectively zeroes out the Qalsody drug cost for me after the commercial insurance (this is also the case for the Radicava copay program). I’m hoping that the Medicare out of pocket max will limit the ultimate cost to me.
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