FunTimes Posted November 15, 2021 Share Posted November 15, 2021 Another migraine med that they are trying out with a trial for chronic clusters in my area. Anyone try it or hear anything about it? Quote Link to comment Share on other sites More sharing options...
Juss Posted November 24, 2021 Share Posted November 24, 2021 It is a biologic, or CGRP showing promise in migraine reduction both episodic and chronic, but I am speculative. Many I talked to tried Emgality when that was all the hype and that failed to deliver. To be fair, it appears case-by-case, and while one monoclonal may work great for some, may fail to work for others. For example, according to trials fremanezumab-vfrm is a poor performer, I had decent results, and better than average with botulinum toxin. As expected, I have this bizarre problem of developing tolerances and it stopped working. Here, these may help you: The CGRP Receptor: What Neurologists Need to Know https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/cgrp-receptor-what-neurologists-need-to-know.pdf The CGRP Receptor in Migraine https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/cgrp-receptor-migraine.pdf Monoclonal Antibodies and Small-Molecule Drugs: What General Neurologists Need to Know https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/monoclonal-antibodies-small-molecule-drugs-neurologists.pdf Characteristics of mAbs and small molecules https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/characteristics-therapeutic-mabs-small-molecules.pdf Eptinezumab: A calcitonin-gene-related peptide monoclonal antibody infusion for migraine prevention https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8511911/pdf/10.1177_20503121211050186.pdf From Neurology Journals (prominent journal) it is showing a significant reduction. I'm still a skeptic, most major medical journals are ghostwritten, paid for by the pharmaceutical industry, and it is about impossible to separate fact from fiction. Efficacy and Safety of eptinezumab with Chronic Migraine https://n.neurology.org/content/neurology/94/13/e1365.full.pdf Different Dosages regimens of Eptinezumab for the treatment of Migraine: a meta-analysis from randomized control trials https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01220-y.pdf Safety and Tolerability of Eptinezumab in patients with migraine: a pooled analysis of 5 clinical trials (this is the shit that I pay attention to) https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01227-5.pdf 1 Quote Link to comment Share on other sites More sharing options...
Juss Posted November 24, 2021 Share Posted November 24, 2021 As I expected, the CGRP isn't as efficacious as touted. By comparison to the tried but true Toprimate, it does not fair any better. If not familiar with Meta-analysis you are applying quantitative epidemiological studies that assess results from prior case studies and clinical trials. In other words, you can't rely on a single study or trial, but when you combine multiple sources of data it generally tells all. Further, this isn't ghostwritten or funded by the pharmaceutical industry, and it was published through Springer. It is based by a reputable department of neurology in Germany (a good start), as the government is less in bed with the drug regulators. The FDA is not the watchdog that you think it is, far from it. While cronyism exists overseas, it occurs far less, and there is considerable more scrutiny. The point, this carries a lot of weight. From Indirect Comparison of Toprimate and Monoclonal Antibodies Against CGRP or It's Receptor for the Prophylaxis of Episodic Migraine: A Systematic Review With Meta-Analysis it does indicate that most can never reach the required 100mg of toprimate because of side effects that lead to discontinuation, but I'm telling you to stick with it, it is a miracle. If you set aside that issue, there isn't a difference. https://link.springer.com/content/pdf/10.1007/s40263-021-00834-9.pdf Next, I not only tinkered with “Dopamax/Stupamax/noassamax” I added clinically proven nutraceuticals to counter the infamous stupor and known 20% decline in cognition. Those are L-Theanine, L-Tyrosine, Phosphatidylserine (PS), Huperzia, and GABA. The only downside (for me) is that you turn into a manorexic, at this rate 70 inches and 140 pounds possibly 135 pounds seems quite realistic. I don't see why the ladies aren't flocking in droves paying millions for it. Some lose over 100 pounds. Hope this helped. 1 Quote Link to comment Share on other sites More sharing options...
Juss Posted November 26, 2021 Share Posted November 26, 2021 Here is a review article on the immunogenicity of biologic therapies for migraine. It does follow, if you get me. I think it has utility, a lot, but without an advanced degree in neurobiology or the like I can only draw logical inferences. It takes hours upon hours of reading and you can’t draw from one thing. CGRP isn’t going away and is fundamental in CH and migraine. I made other posts on the pathophysiology of Migraine and the Pathophysiology of Cluster Headache (both circa 2017 to current and from Goadsby) under the thread “How Do You Stay Happy.” Respectfully, I don’t feel like posting given only 4 or 5 people-if that-take the time to read it, and no one bothers to reply. It becomes pointless. https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-020-01211-5.pdf Again, it all follows. Therapeutic novelties in Migraine: new drugs, new hope? https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-019-0974-3.pdf Quote Link to comment Share on other sites More sharing options...
FunTimes Posted February 23, 2022 Author Share Posted February 23, 2022 Thanks for the links Juss. I did start this study last week but have not seen any huge change in my clusters just yet. Quote Link to comment Share on other sites More sharing options...
Juss Posted February 23, 2022 Share Posted February 23, 2022 You are welcome and good luck with the trial. I had zero luck with any of the CGRPs that were available on the CMS formulary. Coincidentally all were the worst, or useless, Ajovy and Amovig (to lazy to research generic name for listing ). From there, I found other options, much cheaper medications that worked. The side effects take a lot to adjust to, but you can adapt. Fortunately, if I did not have insurance, the most that these drugs would cost is $47, according to my advantage plan. I do hope that it works, but I can’t afford anything more than $3 per month. I look for the oldies but goodies. Or, supplements. Quote Link to comment Share on other sites More sharing options...
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