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    • #23681
      Dagmar Munn
      Keymaster

        Many news articles are being published with updates on new ALS research, studies, treatment, and even lifestyle (diet, quality of life, etc.) 

        What are the “hot topics” that you are following? Have any stories sparked your interest lately?

      • #23687
        Angela
        Participant

          Crispr and C9orf72 research and development by Biogen.

        • #23690
          Mark
          Participant

            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

          • #23692
            Bill Corrigan
            Participant

              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.

            • #23696
              Alan Larrivee
              Participant

                Joined A Phase 2a Study of TPN-101 in Patients with C9ORF72 .

                Had to promise not to use any of the other drugs. Fair enough. They only promised a slight delay in symptoms.

                maybe TPN-101 will turn out to no better but I feel like maybe I’m helping the science move forward.

              • #23705
                John Addy
                Participant

                  Gene therapy is on my radar

                • #23709
                  Melton McClanahan
                  Participant

                    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

                  • #23710
                    L Hageman
                    Participant

                      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.

                      • #23712
                        Melton McClanahan
                        Participant

                          Awesome news. Please keep us updated! Thank you

                        • #23723
                          Tim Charles
                          Participant

                            Yes, awesome news. And, I believe stem cell/gene therapy treatments will be the best option that will lead us to an ALS cure.

                          • #23999
                            Amanda
                            Keymaster

                              @L Hagman,
                              That’s great news! Please let us know how your husband is doing and what you think of the trial.
                              Amanda

                            • #24000
                              Amanda
                              Keymaster

                                @L Hagman,
                                That’s great news! Please let us know how your husband is doing and what you think of the trial.
                                Amanda

                                • #24001
                                  Maryann
                                  Participant

                                    Thank you. It’s for me though not my husband.  I will let you know how things go.

                                    Maryann

                                  • #24003
                                    Amanda
                                    Keymaster

                                      Maryann, I’m sorry. I miss read the “who” part.

                                    • #24012
                                      Maryann
                                      Participant

                                        No worries. Thank you

                                  • #23719
                                    William
                                    Participant

                                      WVE-004 by Wave Life Sciences for C9 ALS & FTD  ASO tech.

                                       

                                    • #23724
                                      Joan
                                      Participant

                                        The new Healy regimen F

                                        with targeting tfp43

                                        joan

                                        • #23998
                                          Maryann
                                          Participant

                                            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?

                                            • #24006
                                              Dagmar Munn
                                              Keymaster

                                                Maryann, I’m curious… did you encounter any difficulty in having your health insurance pay for you to take all 3 Rs? ( riluzole, radicava and relyvrio)

                                              • #24010
                                                Maryann
                                                Participant

                                                  The Riluzole was approved right away. Radicava was approved with 2 or 3 weeks. Relyvrio my insurance denied and I received it for free through Amylyxx manufacturer while the appeal process took place. It took a few months for it to ultimately be approved.

                                            • #23726
                                              Amanda
                                              Keymaster

                                                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.

                                              • #23725
                                                svarog
                                                Participant

                                                  All of them. I maintain an exhaustive list of potential ALS meds on weekly basis.

                                                  • #23768
                                                    Mark
                                                    Participant

                                                      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

                                                    • #24007
                                                      Dagmar Munn
                                                      Keymaster

                                                        Svarog, that is an impressive collection of charts! Are you the sole creator, or is this a collaboration?

                                                        • #24014
                                                          svarog
                                                          Participant

                                                            Thanks, I am the sole creator

                                                      • #23757
                                                        Luke J Kelly
                                                        Participant

                                                          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

                                                          • #23762
                                                            Kim Belden
                                                            Participant

                                                              I’d also like to know what’s going on with Ji Wu Li.  I’m wondering if the drug companies are doing the same thing they did with medical cannabis.  They make a synthetic, less effective form, then make huge profits.

                                                               

                                                               

                                                          • #23788
                                                            Mike Leist
                                                            Participant

                                                              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.

                                                               

                                                              • #24027
                                                                Lyle Davis
                                                                Participant

                                                                  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!

                                                                  • #24028
                                                                    Richard L Wheeler
                                                                    Participant

                                                                      More interested in the current  state of that research.  Is it now available for use or is more study needed?

                                                                • #23961
                                                                  Maryann
                                                                  Participant

                                                                    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.

                                                                    • #24019
                                                                      Lynn Rogers
                                                                      Participant

                                                                        Maryann, I have noticed when I am taking the Radicava that I am a little more wobbly than normal.

                                                                        • #24023
                                                                          Maryann
                                                                          Participant

                                                                            Lynn,

                                                                            I feel wobbly when I take the radicava. I keep a journal each month and my movement is worse during the 10 days on cycle

                                                                      • #24018
                                                                        Lynn Rogers
                                                                        Participant

                                                                          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?

                                                                          • #24022
                                                                            Maryann
                                                                            Participant

                                                                              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.

                                                                              • #24025
                                                                                Bill Osullivan
                                                                                Participant

                                                                                  I mix with tap water stir well drink as fast as I can. Then eat 2 or 3 hershey kisses. The chocolate cleans most of the after taste. I wipe my lips to remove the taste then brush my teeth. No real issues and no after taste

                                                                            • #24029
                                                                              Richard L Wheeler
                                                                              Participant
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