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CNM-Au8 at the 30 mg dosage. It’s showing very promising results in a clinical trial. I like that it’s in the planning stage for Phase 3 and hopefully would succeed there and then be available to patients within a reasonable time period.
Coya 302. It sounds promising but it’s very, very early in its clinical testing.
Mark
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PTC-857, CARDINALS. I might participate in it, but I can’t start Relyvrio if I do. So if I started tomorrow, it would be 8 months before I could start Relyvrio. I am on Radacava ORS for a month or so now, and have a prescription for Relyvrio going through the Insurance rigamarole right now. I do think the science checks out on that one. So do I delay? That is the question of the day for me? If I delay and get on PTC-857 and not a placebo, that’s 2 meds and then after the first phase 8 months out, I’m in the open label phase and can start Relyvrio then. Which would put me on 3 drugs.
Life is full of decisions that one just doesn’t know the result in the end.
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Afternoon All,
I’m scheduled to start PTC-857 at the end of April. I’m currently on Relyvrio and Riluzole. I’m blessed that my wife’s company insurance covers both products. While I also decided to turn my truck back over to the bank, so that I could afford the co-payments. Kaiser, also, approved me to get a 3rd opinion outside their network, and that’s whom I’m participating in the clinical study through.As far as delaying, ALS is a beast with no known good outcomes and if you can participate in any new studies that could slow it down, then participate! Don’t get me wrong everyday, my body reminds me the beast is still here, so I’m trying to slow it down as much as possible!
Looking forward to engaging with you guys in the future!
God bless,
Melton
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My husband has been accepted to a clinical trial at Cedars Sinai for stem cell injections. He will receive injections in the portion of his brain that controls his left hand. We are excited at the prospect of what this treatment can provide for ALS in the future.
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@L Hagman,
That’s great news! Please let us know how your husband is doing and what you think of the trial.
Amanda -
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Joan
How do you feel on regimen f. I take riluzole, radicava and relyvrio and I started regimen f 4/25. Do you notice any changes with regimen f?
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Personally I’m following Tofersen because it targets SOD1 ALS. I’ve applied for early access to the treatments. In the clinical trials it has shown to significantly reduce the neurofilament light chains that are in spinal fluid prior to and when clinically significant symptoms of ALS develop. Toferson is administered intrathecally and is supposed to replace the mutated portion of the SOD1 gene so that it no longer produces the “bad” protein that cannot perform it’s job and damages the nerves. I’m not a doctor or a scientist so I may not have all the science and technical terms exactly right, but this is my general understanding after reading, researching, reading more, and participating in the pre-fALS study for 12 years. I think in cases of ALS that are genetically linked, each mutation will require a different treatment correcting that mutation. Unfortunately that only accounts for 10% of ALS cases.
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All of them. I maintain an exhaustive list of potential ALS meds on weekly basis.
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Great job, Svarog, in compiling this list! It’s very encouraging that there are quite a number of experimental medications that have shown some success in trials. I’m also encouraged in looking at your chart to see that studies to find effective treatments for ALS are ongoing throughout the world.
Mark
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Svarog, that is an impressive collection of charts! Are you the sole creator, or is this a collaboration?
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I’m hoping and praying that everyone’s hot topic is successful.
In the meantime, my question is “why aren’t we as a group pushing for a follow up to the January 9, 2023 ALS News article on the Chinese herb patch Ji Wu Li (JWL)?” As others have noted in their comments, “I’m no scientist” but, the article hints at being less costly, states that the effect in slowing progression is significant, and it states that “Overall, the ingredients of every single herb of JWL have effects on almost all known mechanisms of ALS”.
I might be only reading into this what I want to hear but, I’d like to have this as an option to hopefully save a point on progression while I wait for something else to come along.
If I am way off base with this comment I apologize but, it seems like just about every ALS News Today article since January 9th has referenced this article as a “learn more” reading. Are they trying to tell us to start pushing for commercial availability?
Thanks,
Luke
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Did anybody see the article in ALS News Today, titled
<h1 class=”bio-article-content-heading bio-type-display–large”>MSC transplants found to extend survival by 4 years in ALS: Analysis</h1>
<p class=”bio-article-content-lede bio-type-display–small”>The first paragraph reads as follows:</p>
“Transplants using mesenchymal stromal cells or MSCs — a type of stem cell found in bone marrow — delivered into the spinal canal can significantly extend survival in people with amyotrophic lateral sclerosis (ALS) compared with what would be expected based on their clinical characteristics, a new analysis of trials from the early 2000s found. ”Here’s a link to the article, which contains a link to the study.
MSC transplants found to extend survival by 4 years in ALS: Analysis
Now, I have to say, I have mixed emotions here. On one hand kudos to the research, and essentially reinforcing what NurOwn is about. On the other hand, I’m pissed. Studies from the 2000s? Following patients for 20 years? Somebody should have been shouting this from the rooftops 15+ years ago. How many people have died, and will die, based on a lack of urgency? Perhaps I’m being too critical. I don’t know. But as someone who has been at an FRS of zero, and paralyzed for approaching 3.5 years, I’m angry at the pace.
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Mike — I join you in the “mixed emotions” response regarding the analysis of 15-20 year old studies with MSC transplants. Sounds great and important and promising, and WTF with the pace of follow-up? What’s being done, or what can we do, towards turning this into available treatment? These are not rhetorical questions — I’d like to know how to find answers and take steps!
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I take Riluzole, Radicava, RELYVRIO and 2 weeks ago I started Healey Platform regimen f (Abbv 7262) – hoping I am on the drug and not the placebo but it’s 3 to 1 so I’m hopeful. I notice I am more wobbly when I take the Radicava 10 days out if the month.
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Hi! I am “new to the club” having been diagnosed in Dec 2022. I tried Riluzole but it affected my liver so they took me off. I am participating in a trial – MN-166 obviously don’t know whether I have the placebo or actual drug. I have been on Radicava since Jan and have just started taking Relyvrio. It’s all I can do to get the Relyvrio down and keep it down. I’m not a listerine fan so I’ve been putting a peppermint candy in my mouth as soon as I take it to try and help with taste. Does anyone have any suggestions – or something that works for them?
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Lynn
I mix relyvrio with warm water. Mix it really well and let it sit 15 min or so to dissolve, then drink it down with a straw. It’s tolerable if it’s mixed well.
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