Amavea - A SSOCIATION M ENINGIOMS DUE AT A CYPROTERONE CEETATE, Help with v ictures and taking into account molecules

GHU Paris partnership

The association signed in 2022, a partnership with GHU Paris so that volunteers can visit the patients hospitalized in neurosurgery .

The permanences are here: https://www.ghu-paris.fr/fr/permanences-pole-neuro-sainte-neurochurgie

If you wish to integrate volunteering on this site, send an email to idf@amavea.org 


In addition, the GHU Paris, on the initiative of Pr Johan Pallud, neurosurgeon, head of service, created a dedicated course for people who have consumed a progestogy at risk of meningioma:

These progesterone derivatives are hormonal drugs that oppose the effects of male (androgen) sex hormones. The Androcur © was long recommended in the treatment of severe hyperpilosity in women but largely prescribed in France as a contraceptive or acne treatment. A study by the National Medicines Safety Agency has demonstrated the link between taking this medication and the appearance of meningioma. Indeed, it appeared that a long exposure at high doses of the drug multiplied by 7 the risk of meningioma. It is estimated that around 400,000 women were exposed to this treatment between 2006 and 2016.

As early as 2018, the ANSM therefore published recommendations for health professionals relating to the use of cyproterone acetate (© Androcur and Generic). In 2020, two other treatments, based on nomigestrol (© Lotényl and Generic) acetate) and chlormadinone (© Ltéran and Generic) acetate, were also implicated in the appearance of meningioma.
In terms of radiological surveillance, the ANSM recommendations are:

  • IMRI IMMA IMMAGRAY should be performed before starting treatment for all patients.
  • In the event of a continuation of treatment by Androcur, IRM will be renewed at 5 years then every 2 years if I mirm at 5 years is normal.
  • In the event of treatment with Lotéran or Lotényl over 5 years old, an MRI must be offered to patients over 35 years old (preliminary recommendations in June 2020).
    In patients who have stopped treatment, there is no need to carry out brain imaging in the absence of a clinical sign;
    In the event of a meningioma discovery, the treatment must be stopped permanently. A neurosurgical opinion is recommended;
  • A circuit dedicated within the Neuro Sainte-Anne pole meeting the needs of patients

Within the Neuro Sainte-Anne du GHU Paris pole, imaging and neurosurgery services, in collaboration with the AMAVEA association, set up, from 2018, a circuit dedicated to patients under © Androcur, © Lotényl and © Lotéran or having taken this treatment, comprising:

  • A quick MRI meeting, on a dedicated circuit;
  • an emergency neurosurgery consultation in the event of a symptomatic meningioma discovery;
  • A consultation of systematic neurosurgery, when the neuroradiologist diagnoses meningioma by MRI

Following a meeting organized by the ANSM in 2018 during the publication of her recommendations, Emmanuelle Mignaton, president of Amavea*, alerted the neurosurgeon who had operated it in 2017 for a meningioma due to the taking of the drug Androcur, Professor Pallud, on the certain influx of patients wishing to practice an MRI.

"Very anxious patients needing rapid answers were necessarily going to be oriented in imaging services," explain professors Johan Pallud, Neurochiru and Catherine Oppenheim, radiologist at GHU Paris Psychiatry and Neuroscience. It was therefore important to anticipate these requests and set up an effective circuit in order to reassure these patients and offer them rapid management. ”

This direct circuit accessible via a unique addressing@ghu-paris.fr is the only device to date in France. "I have very positive feedback from patients who ask me for an orientation towards medical structures, on this dedicated circuit," Emmanuelle Mignaton tells us, "thank you to the radiology and neurosurgery team that have been doing a great job for more than a year. »»

In addition to a quick delay for appointments, the result is immediate, and a neurosurgery consultation is offered whenever necessary. A multidisciplinary consultation meeting is also integrated into the system in partnership with the Professor Plus teams of the Cochin Hospital in Paris.

A research pane is backed by this device. Today, within the framework of this circuit dedicated to systematic screening, less than 10% of patients are carrying meningiomas, most often small, and we observe that in half of them, these lesions decrease in size to stop treatment.