Post B0mhrpplpapVDNINLE by BakerRL75@m.ai6yr.org
(DIR) More posts by BakerRL75@m.ai6yr.org
(DIR) Post #B0lpZgLuwvT54TE8Lg by Xeniax@mastodon.ml
2025-11-30T11:55:18Z
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Dear Fedi friends. As some of you may know, I have a wonderful daughter Lila who had a severe form of epilepsy at the age of 5 months. This epilepsy is called West Syndrome. We had to go through a hell of a treatment to stop her seizures. The thing that helped her was called "Synacthene Retard". It's basically ACTH, a synthetic hormone similar to adrenocorticotropic hormone produced by our anterior pituitary gland.My daughter was one of the last kids who had a chance to get the Synacthene Retard from the lab that produced it (Alpha Sigma). This was late March 2024. And in May 2024 Alpha Sigma said they discontinued this product without ANY public explanation.I am trying to inquire about the disappearance of Synacthene Retard from French pharmacies. I am looking for contacts of a medical journalist or an expert in pharmaceutics to help me lead this investigation. It may save lives of dozens of other kids with that suffer from West Syndrome. Thank you!
(DIR) Post #B0m6xiaRzZ3yAi4VRQ by APBBlue@thepit.social
2025-11-30T14:40:24Z
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@Xeniax Oh no, that's awful. hoping for the best for you and Lila. (I have a niece with tuberous sclerosis, so I understand how challenging epilepsy can be.) ❤️
(DIR) Post #B0m6xje23jWRS6ksfA by Xeniax@mastodon.ml
2025-11-30T15:17:08Z
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@APBBlue thanks! So far we are doing well. But there are other parents looking for Synacthene for their kids, and I am very very sad for them. I hope that we will be able to change the situation
(DIR) Post #B0m8h6HWqFzie4QPJI by APBBlue@thepit.social
2025-11-30T15:36:33Z
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@Xeniax Are you in France? Here in the United States, we have something called "compounding pharmacies" that are able to recreate drugs that have been discontinued or if someone is allergic to a drug ingredient. I wonder if something like that might be an option?
(DIR) Post #B0m9LWfc9KHY4Sy1lw by Chris@mastodon.green
2025-11-30T15:43:50Z
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@Xeniax ask your national medicines agency.Or even EMA, the European Medicines Agency.I don't know about the legislation on compassionate use in your country.
(DIR) Post #B0m9bDjUKIWJyFGMOe by lxskllr@mastodon.world
2025-11-30T15:46:40Z
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@Xeniax Beth Mole from arstechnica might have some info or interest.https://arstechnica.com/author/beth/
(DIR) Post #B0mBPgyTyokV60uIMa by Xeniax@mastodon.ml
2025-11-30T16:06:59Z
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@seabass thanks Sebastian. Lila is stable since April 2, 2024. She had no seizures since the treatment with Synacthene. Wikipedia explains that kids can outgrow West syndrome which is true, but unfortunately if seizures persist, the development outcomes are catastrophic (e.g. child not reaching any milestones, not seating, not walking, no speech etc). This statement about "outgrowing" is a bit misleading for people who are not familiar with West Syndrome. Also, if spasms are not stopped early on, they transform into other kinds of seizures. Most often in "Lennox-Gastaut" syndrome.
(DIR) Post #B0mBVsGotZzNrnQqcS by Xeniax@mastodon.ml
2025-11-30T16:08:10Z
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@Chris thanks, I will do that. It's a great idea actually to start with the medicines agency and not with the lab
(DIR) Post #B0mBa51bPrtkaBJsdU by Xeniax@mastodon.ml
2025-11-30T16:08:55Z
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@APBBlue yes I am in France. They did this for my daughter for another hormone called hydrocortisone. However they didn't offer the same thing for Synacthene. Apparently the procedure is too complex.
(DIR) Post #B0mBzINysTVRGCoK12 by Luu@mastodon.social
2025-11-30T16:13:26Z
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@Xeniax https://en.iranhormone.ir/product/synacran-tetracosactide-acetate/Sun Pharmaceutical Industries Ltd can do this medicine too.
(DIR) Post #B0mFYbGywngZps3yYi by Eddorodzz@mastodon.social
2025-11-30T16:53:27Z
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@Xeniax sharing
(DIR) Post #B0mIjtMaKOCwzQlAWG by pdufour@mastodon.online
2025-11-30T17:29:04Z
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@Xeniax I am not a medical journalist, just a psychologist! I am living in France and checked the situation of "Synacthene Retard". The article below describes the situation.Bottom-line: the product is hardly available in France and Europe. In order to maintain product availability for as long as possible, the prescription and dispensing of SYNACTHENE and SYNACTHENE RETARD must be strictly reserved for its indications in cases deemed a priority.<https://www.sfendocrino.org/rupture-de-stock-de-synacthene/#:~:text=En%20raison%20de%20difficult%C3%A9s%20d'approvisionnement%2C,de%20SYNACTHENE%20RETARD%201%20mg>
(DIR) Post #B0mKv7jrQ8S6fU88n2 by Chris@mastodon.green
2025-11-30T17:53:30Z
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@Xeniax best of luck
(DIR) Post #B0mL2mWqA9H3CegwwS by benjohn@todon.nl
2025-11-30T17:54:54Z
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@Xeniax I'm glad you found a helpful treatment.I'm not an expert, but I understand (might be wrong) that part of patent law is that patent holders are required to license a patent if they do not wish to exploit it directly. You can't "block" use of a patent because you hold it.So, perhaps the patent holder could be persuaded to license it?I hope you find a solution!
(DIR) Post #B0mLFRlWfeSEZWbGJk by Xeniax@mastodon.ml
2025-11-30T17:57:14Z
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@benjohn thank you! Thats precious
(DIR) Post #B0mM0WWum6BYxVDJIm by Xeniax@mastodon.ml
2025-11-30T18:05:45Z
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@pdufour Merci beaucoup pour l'article Patrick. Je sais que Synacthene est devenu difficile voire impossible à trouver en Europe, pas qu'en France. Le problème avec cette formulation de ne le prescrire qu'en cas jugés prioritaires est que cela devient une raison pour les neuropédiatres d'arrêter de le prescrire alors qu'il est très efficace là où les autres traitements échouent. Les neuropédiares commencent à prescrire que de l'hydrocortisone qui est plus accessible mais peu efficace. C'est un serpent qui se mord la queue. C'est pour cela qu'il faut rendre le synacthene plus facilement accessible...
(DIR) Post #B0mOXBMog8P0muBtZ2 by benjohn@todon.nl
2025-11-30T18:34:01Z
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@Xeniax Apparently this is the case in the UK (and perhaps other places) – https://www.legislation.gov.uk/ukpga/1977/37/section/48 … but it may not be in the US (and perhaps other places) https://en.wikipedia.org/wiki/Compulsory_licenseI con't know how this would be resolved internationally!
(DIR) Post #B0mYNwKeCxZn5pPLwO by PostcardsFromParadise@mastodon.social
2025-11-30T20:24:23Z
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@Xeniax It seems that the formal name of the drug is Tetracosactide.
(DIR) Post #B0mYZdyQI3Avd8ar5s by acratopege@autistics.life
2025-11-30T20:26:30Z
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@Xeniax @vivet_lili a peut-être une piste 🤔 🤷
(DIR) Post #B0mbBzTczPaDEZbObY by VulcanTourist@autistics.life
2025-11-30T20:55:48Z
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@Xeniax You know likely reason why it was discontinued: no profit in a drug needed by a small minority. It's the same reason my wife had no treatment opportunities for her very rare autoimmune disease that affects only hundreds of people globally.We don't need to privatize government agencies. We need to publicize Big Pharma and other coporations in control of the means of (life-saving) production.
(DIR) Post #B0mbIcMlJTIfaIYDSq by Xeniax@mastodon.ml
2025-11-30T20:57:06Z
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@VulcanTourist agree... I am so sorry you and your wife had this experience.
(DIR) Post #B0mhrpplpapVDNINLE by BakerRL75@m.ai6yr.org
2025-11-30T22:10:38Z
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@Xeniax Promoting to #Epilepsy #WestSyndrome
(DIR) Post #B0mljhJk0ltKIignAW by Galamadryade@piaille.fr
2025-11-30T22:53:57Z
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@XeniaxNo explanation on the ANSM website.But synacthene (without "retard") is still available.France is experiencing A LOT of availability problems from several years.
(DIR) Post #B0mnz0OJZsVJi2Ftui by Xeniax@mastodon.ml
2025-11-30T23:19:11Z
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@Galamadryade the other form of synacthene is not as efficient because it doesn't have the same release mechanism... synacthene retard is stimulating the production of ACTH throughout the day, progressively, while the normal synacthene has a momentary action.
(DIR) Post #B0noTMSmH0eW0fmHNQ by Kierkegaanks@beige.party
2025-12-01T10:59:22Z
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@Xeniax There is a statement saying it’s being rationed for hospital use only because production suffered some kind of disruption
(DIR) Post #B0nox98QOMpLMPSba4 by GoGhostly@mastodon.social
2025-12-01T11:04:46Z
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@Xeniax an experienced doctor with big pharmaceutical connections can probably guess why
(DIR) Post #B0nsUDVlRPgQLuq1c8 by Xeniax@mastodon.ml
2025-12-01T11:44:22Z
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@GoGhostly I will try to ask our neuropediatrician, but she is so hard to get! Hyper busy and also not willing to discuss research side of things...
(DIR) Post #B0nsVvR9c0yksJUq92 by Xeniax@mastodon.ml
2025-12-01T11:44:43Z
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@Kierkegaanks exactly. But this disruption is not explained
(DIR) Post #B0nvut55o9EsfdluiW by GoGhostly@mastodon.social
2025-12-01T12:22:44Z
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@Xeniax I think that the unwillingness to discuss the research is very tellingOften, doctors will not tell other doctors about pharmaceutical companies trying to keep ppl sick because it is very demoralizing
(DIR) Post #B0nx5exIlbxU04pOzo by LightFIAR@med-mastodon.com
2025-12-01T12:35:54Z
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@Xeniax I agree with the post--it is also known as Cosyntropin and may be made by other companies, like Mylan? Side query--has your daughter tried cannabidiol? It seems to help with some forms of epilepsy.https://pubmed.ncbi.nlm.nih.gov/34624613/
(DIR) Post #B0nz4a8pNcRWgjpiWO by Xeniax@mastodon.ml
2025-12-01T12:58:11Z
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@LightFIAR thanks! My daughter is stable now. I am doing this for other kids with same diagnosis. Cannabidiol is great. Indeed! But it takes more time until it shows efficiency. With this syndrome every day of seizures counts...
(DIR) Post #B0ogzYQ8kKYdt2LN9U by LightFIAR@med-mastodon.com
2025-12-01T21:10:15Z
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@Xeniax Here's hoping your girl--and other kids--get the meds they need--and the relief! My heart goes out to you.
(DIR) Post #B0ohhrE4Bq7Sx4p1DE by Xeniax@mastodon.ml
2025-12-01T21:18:19Z
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@LightFIAR thank you! We will fight for that!
(DIR) Post #B0okdKHd1l7FUE1EIK by vivet_lili@piaille.fr
2025-12-01T19:19:04Z
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@acratopege @Xeniax Je viens de regarder sur Vigirupture, il n'y a pas moyen de faire une recherche dessus contrairement au Synacthène simple. L'arrêt de commercialisation a plus d'1 an et demi... La probabilité qu'il en reste dans une pharmacie française est proche de zéro à mon avis. Je suis désolée.
(DIR) Post #B0okdLk1bfQO0aJQC8 by Xeniax@mastodon.ml
2025-12-01T21:51:04Z
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@vivet_lili @acratopege Bonjour. Je veux comprendre la cause de l'arrêt de la commercialisation, il ne s'agit pas de trouver Synacthene retard dans une pharmacie. Je voudrais relancer la discussion au sujet de ce médicament et essayer de trouver des façons de faire pression sur les fabricants pour le remettre sur le marché.
(DIR) Post #B0okqQHi1felrcIl9c by Xeniax@mastodon.ml
2025-12-01T21:53:29Z
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@vivet_lili @acratopege et par ailleurs, merci beaucoup pour votre message ! Connaissez vous quelque chose sur Alpha Sigma ? Leur réputation, des choses à savoir ? Je me prépare à les contacter. Sinon, pourriez-vous, vu votre expertise en tant que pharmacienne, me conseiller quel serait le service au sein des structures de l'état à contacter à propos de l'accessibilité des médicaments ? Merci infiniment
(DIR) Post #B0pkzyyAdFhlCXgGkS by vivet_lili@piaille.fr
2025-12-02T09:29:51Z
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@Xeniax @acratopege Malheureusement, je ne vais pas avoir plus d'information que le tout venant sur ce genre de question. Les industriels n'ont pour seule obligation que de prévenir d'un arrêt de commercialisation et n'ont pas besoin de le justifier. Vous pouvez appeler le laboratoire et leur demander mais très certainement qu'ils ne communiqueront pas plus que ce qu'ils ont dit à l'ANSM.Est-ce qu'il y a des associations de patients des pathologies concernées par l'arrêt du Synacthene ? Je pense qu'il faut se tourner vers elles, elles ont souvent plus d'infos et plus de capacités de pression qu'un individu seul...
(DIR) Post #B0plFQQynkNkj1WI1A by Xeniax@mastodon.ml
2025-12-02T09:32:41Z
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@vivet_lili @acratopege Merci, j'ai contacté l'association Phare West (Hôpital Robert Debré), ils n'ont pas d'information.
(DIR) Post #B0plp4hj4Ov9kwLrwe by vivet_lili@piaille.fr
2025-12-02T09:39:07Z
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@Xeniax @acratopege Et ils ne cherchent pas à en avoir ? Ont-ils des réflexions/mobilisations en cours sur la question ? Les assos de patients mobilisées restent ce qu'il y a de plus efficace face aux pouvoirs publics et l'industrie...
(DIR) Post #B0pnrp9PYO9WILjw3s by Xeniax@mastodon.ml
2025-12-02T10:02:03Z
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@vivet_lili @acratopege ils ont l'impression de juste accepter la situation telle qu'elle, mais je vais essayer de les rencontrer hors ligne à Paris pour en parler. Je suis d'accord avec vous quant à l'efficacité des associations de patients et parents de patients... merci pour votre encouragement !
(DIR) Post #B0pntsYdrEnPRNWNWK by vivet_lili@piaille.fr
2025-12-02T09:32:46Z
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@Xeniax @acratopege Peut-être s'adresser à France Asso Santé voir ce qu'il y a dans leur réseau. Peut-être aussi contacter la société française d'endocrinologie pour voir si y a des pros de santé que ça préoccupe de leur côté.https://www.france-assos-sante.org/reseau/associations-membres/
(DIR) Post #B0pnttxqd0YJnqK1Ro by Xeniax@mastodon.ml
2025-12-02T10:02:25Z
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@vivet_lili @acratopege super idée !