Soliris

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  marisaboule15 | published 3 months ago | Originally written in French Soliris

  Bonjour a tous,et avec du retard,une heureuse année .Depuis 1 mois,nous avons dus arreter les injections de Soliris pour Constance,car elle devenait allergique,elle ne le supporte plus!!!! J'ai très peur qu'elle rechute !
  6 replies to the topic — see all replies

  • 
    Mireya published 3 months ago | Originally written in Spanish

    I am so sorry. I have never listend to be alergic to Soliris . How is the symtoms??? . Please. if you want answer me in french, I will go then to traslate. I am very interesting in this noticie.
    Please contact with Nicolas Muller ( Airg France )
  • 
    Mireya published 3 months ago | Originally written in Spanish

    friends ????

    Cheryl, Nicolas, Linda, Have you ever listend to be alergic to the soliris infusion ??????
  • 
    nmullier published 3 months ago | Originally written in French

    Hello,
    I am truly sorry. What is this allergy? How is Constance? What did the doctors have to say? Is this hiatus provisional? I am persuaded that she is under surveillance.
    Call me if you want to (did you find my card?).
    The whole community is with you.
    Sincerely
    Nicolas and give Constance a big kiss for me.

    Notice: This text content has been translated automatically by a third-party service.
  • 
    LindaBurke published 3 months ago | Originally written in English

    I am sorry to hear of your daughter's difficulty, and no (to Mireya's question) - I have not heard of any other reports of allergic reaction in aHUS patients using Soliris (eculizumab). I support Nicolas' comment about notifying Constance's doctor, and hope that your physician is in contact with other medical personnel that may have experiences or information to illuminate this issue. As with any new innovation in rare disease products or drugs, it is important to connect communication among all parties to promote the discussion of solid medical information, with experienced physicians, and a shared knowledge base. With every best wish, Linda

    Je suis désolé d'entendre parler de la difficulté de votre fille, et non (à la question de Mireya) - Je n'ai pas entendu parler de tous les autres rapports de réaction allergique chez les patients utilisant CTA Soliris (eculizumab). Je soutiens commentaire de Nicolas sur la notification médecin de Constance, et nous espérons que votre médecin est en contact avec d'autres personnels médicaux qui peuvent avoir des expériences ou des informations pour éclairer cette question. Comme pour toute innovation dans les produits nouveaux de maladies rares ou de drogues, il est important de connecter la communication entre toutes les parties à promouvoir la discussion de l'information médicale solide, avec des médecins expérimentés, et une base de connaissances partagée. Avec tous les vœux, Linda
  • 
    marisaboule15 published 3 months ago | Originally written in English

    Bonsoir,a tous,je viens de vous répondre,je n'y arrivait pas cela ne marchait pas ,mais c'est rétablis: merci de votre soutient,merci pour Constance.
  • 
    cherylbiermann published 3 months ago | Originally written in English

    I am so sorry, I was without internet access a few days...this is the first I have heard about allergic reactions. My first thought is, let's not panic, there are other things that could be causing this and they have check the most obvious and ruled it out. My second thought is that if it is an allergic reaction could premedicating with an allery inhibitor, such as Benadryl be used? My son did have reactions occassionally to FFP so this helped. My third thought is that marisaboule should contact here case manager for Soliris at Alexion immediately and have her child's doctors research this question with them. I am waiting for the translation but I did use a bing translation which was not as clear as I would have liked. Please keep us up to date.