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Update on QALSody July 26, 2024
This summer has been a challenge for me. I like to start with the positive so here it is, and it is a biggie!! I have not had any ALS progression since starting QALSody/Tofersen on July 12, 2023. In fact, I have had improvements in strength in all muscles tested, and this shows in the EMGs – no new damage to nerves. Here is the biggie – My FVC was normally between 80-90. This should be between 90-100. In about a month it dropped to a 31 and I was struggle to do anything without being breathless. (April 2023). It has slowly improved and on July 18, 2024 my FVC was a 44. This is exciting!! I’m still winded easily, cannot walk and talk at the same time and I notice lots of other things. I tell myself – I’m still walking and talking just not simultaneously :). I know that I am fortunate and I am grateful!
Ok, now here were the challenges, and they were a dozies!! QALSody is administered intrathecally (directly in the spinal cord). Since it is a foreign substances you body recognizes it as something that should not be there and it produces white blood cells to combat the invasion. A typical non ALS person’s WBC should be 5 or less. With ALS and similar diseases, the WBC is elevated in the spinal fluid. So my WBC was at a 127 and my spinal cord was highly inflamed. This caused me to lose the ability to walk without assistance, and from the waist down my body felt tingling, numb and like I had been in the ice for days. Of course at the time, I did not know how much of this was ALS and how much was a side effect of the QALSody treatments. I spent most of July in the hospital in Miami. I received steroids intrathecally and then 7 treatments via IV. Those are the strongest steroids’ from what I understand. Many shots, blood tests, MRIs, sonograms and lumbar punctures later, most of the tingling simmered down. The steroids wiped out my immune system and I came home with an ear infections. However, I can walk unassisted now. My left leg still feels weird and tingly. Time and pt will tell if this is permanent nerve damage or if it will return to normal. My QALSody treatments were postponed and they have been monitoring the WBC in my spinal cord. On the last test the WBC was at a 25. This is lowest the WBC have been since starting QALSody. I am resuming treatments on Thursday, August 1st. I will also be getting steroids via IV at the same appointment in attempt to prevent this from reoccurring.
All in all, QALSody is working. Although I didn’t want to be in the hospital it was the best place for me to be. The nurses were outstanding. This is brief account of June and July so if you have specific questions just ask.
Always,
Amanda
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4 Replies
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Amanda,
That is indeed good news. You have been on the ALS treatment roller coaster, from highs to lows and back again to highs! Keep the positive attitude you have to ride the next wave. I am sending you energy in support of your next round of treatment. You go, Girl! Keep the faith!
Len
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Len-jax,
It has indeed been a roller coaster, but one I don’t mind being on. I don’t like the lows, but I tell myself, “Self, at least you are here for the lows!” I really think attitude is a big part of being happy. Some days it is difficult to see the bright side of life, but it is worth the effort. I also recognize that my ALS experience is vastly different from most pALS. I have hope from the QALSody treatments. It is a different kind of hope than pALS with other genetic mutations and sporadic ALS. I can see progress for the type of ALS that I have, and that runs in my family. I’ve watched so many loved ones battle ALS. I see success in the treatments I am getting, and in the circle of friends I’ve made who are also getting the treatment.
I started volunteering for ALS research in 2010-11 ish. in 2012 I started the process for the pre-fALS study. I believe this was in the first few years of the study starting. I was tested a 2nd time for a mutation. My attitude has always been, since I was put in a unique position and I have this rare disease (or predisposition for a rare disease) and even rarer genetic mutation that causes ALS, I am compelled to help find a cure and help others with ALS. At one point I said I felt obligated, but that doesn’t really capture my feelings. I hate having ALS and the SOD1 mutation, but if some good can come from it then there is a gift I can give. So, I give. When I first started volunteering I told myself that it was for my younger cousins. I didn’t want them to deal with the stress of having the mutation and no effective treatments or cures. My biggest motivation was my baby cousin, Caitlin. She is actually an adult, but we have a close connection and she is the age of my nephews. We lost her father 2 years ago to ALS. In January I found out the mutation skipped her. I was so happy I cried. She had a hard time telling me because I had just been diagnosed. When I was diagnosed, I realized just how much of my volunteering was not altruistic and fear set in. At the same time they were expecting Tofersen/QALSody to be approved by the FDA the following month. That was delayed by 5 months, and that was a long 5 months because I was declining more rapidly than I anticipated. My little life tangent…..My point was, I have hope. My diagnosis came at a time that has been vital to my journey.
My commitment to ALS research and advocacy continues. It will always be there until we all have treatments and cures. I owe this to my family, and our ALS community.
Amanda
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Sending you Love and Positive Vibes!!
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Thank you for the update. It contained a lot of helpful and useful information and likely provides hope for those who can take the meds. Thank you for sharing. Hope you get the side issues sorted soon and you continue to stop or reverse ALS symptoms.
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