My Androcur weaning: how I got out with a protocol!

This article on Androcur withdrawal has been planned for a long time but it has been difficult to write for me. The reason for this expectation is simple. It is never easy to recognize that we made a mistake especially when it had disastrous consequences. The error I made was to take Androcur for 5 years.

I have stopped this treatment and I have been weaned today for about a year. If I write this article today, it is in order that my error may be used for other women. I would like to serve as a “bad example” to follow for this experience.

I already told you during a previous article why I took Androcur against androgenetic alopecia . I also quickly updated this article when I realized the misdeeds of the drug on my health.

However, I had to talk about my withdrawal which was not done without difficulty. Indeed, this medication has not only important side effects but also generates an addiction which therefore requires a progressive withdrawal studied under the control of a doctor.

So I decided to expose you here all my withdrawal process and the consequences of this treatment which continued on my health.

As I had done during my previous article I allow myself in the preamble to issue a reserve relating to my opinion and my experience on this drug:

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Important : I am not a doctor I just let you know my personal experience. Please consider that each case is different, none is assimilated to another. Nothing replaces a medical opinion. Consequently I invite you in any case to consult a doctor who will be able to advise you best.

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Androcur: The descent into hell due to the multiplication and intensification of side effects!

I want to clarify that I first supported the Androcur treatment but the side effects gradually manifested themselves in an insidious way to end up becoming unbearable. The worst part being that as I first supported the treatment, doctors did not immediately assimilate my symptoms with side effects. This is therefore frustrating when your health deteriorates without being determined by the cause.

Arrived at the end of 2019 I found myself in a deplorable state of health. I who have always had iron health I found myself like a human log. It's very simple I didn't recognize myself anymore.

I wanted to have made the decision to make this medication but I also wanted doctors not to have warned me. Indeed none of the doctors prescribed me Androcur alerted me to the risks and even less with that of developing meningioma ! However, this is far from being benign!

Indeed after 5 years of treatment of intensive Androcur I ended up with:

• Intense migraines sometimes uninterrupted for 24 to 48 hours in a row
• Intense fatigue and very disturbed sleep
• Severe digestive disorders that caused significant weight loss
• Decrease in my vision that caused drug myopia imposing the permanent wearing of glasses

However, I would like to specify that the side effects of Androcur are multiple and vary depending on each. I tried to identify them by probing users who told me the following effects (in the order of recurrence). I marked in bold the effects I personally suffered:

1. Emotional instability with substantial variation in mood
2. Depression up to severe depression
3. Libido disorder (increase or loss)
4. Breast sensitivity (with or without) increased volume
5. Severe digestion disorders
6. Sometimes severe cyclical migraines leading to vomiting & dizziness
7. Weight gain or weight loss
8. Pregnancy mask (pigment tasks on the forehead)
9. Vision changes

I also allow myself to add the possible side effects present on the instructions for the drug:

• Rules (slight bleeding between rules, stopping rules, etc.).
• Shortness of breath
• Heavy legs
• Rash
• Fatigue, agitation and depressive state.
• hepatitis, thromboembolic accident, meningioma

The weaning of Androcur cannot unfortunately be done alone!

After 5 years on Androcur 100 mg + Diane 35 I was literally exhausted. So I made the decision to stop but I was very afraid. I had a meningioma? I was going to lose all my hair?

I tried to wean alone by taking 50 mg at first but I discovered that it was not as easy ... So I had a migraine of 5 days non -stop day and night! Exhausted I decided to resume the initial dose while waiting to see an endocrinologist who gives me a good suitable weaning protocol that is adapted to me and decreases the rebound effects of stopping treatment.

However, my health has been at a month has been at the lowest. I suffer from extreme fatigue preventing me from all intense physical activity (I did 1:30 am before that of sport per day).

An MRI is essential for all patients who took Androcur!

I also suffer from intense migraines every day for 4 hours minimum. This is untenable. My iron health (I only had a small cold per year) is only a distant memory and I no longer recognize myself.

I also decided to do my MRI soon and I am afraid of the result ... Besides to be sincere it's been a year since I tell myself that I have to do it and that I pushing the date out of fear ... Fortunately after having done it I discover with great relief that everything is fine! I have no meningioma!

However, I was also judged by the neurologist who practiced MRI. His reaction surprised me to say the least. He said “Yes, it’s fashion to make MRIs for Androcur patients”. I was not at all taken seriously while the European Medicines Agency (finally) finalized the evaluation on the risk of meningiomas initiated by France. Yet it seems to me that no one does MRI for pleasure ... (not to mention the cost of the exam)

The Androcur weaning: the follow -up of an endocrinologist is essential!

Advised by a friend I go to an endocrinologist in order to explain my case to her and that he can help me weaned from Androcur. I was lucky to meet an elderly endocrinologist with great experience, very attentive. He did not judge me for taking this medication (it had already happened to me when I had just trusted the doctor who had prescribed it).

Androcur withdrawal protocol:

My endocrinologist has set up a protocol in order to wean me from Androcur. He initially reduced my dose of Androcur of 100 mg to 50 mg + Diane 35. He added Spironolactone to compensate that he increased as he lowered Androcur. Besides, a study has been shown that the spironolactone relay of cyproterone acetate (Androcur) in the treatment of female hyperandrogenism was effective .

I would come back to another article on this drug against androgenetic alopecia. Indeed this is more complicated than it seems (spoiler: it is not the miracle remedy against androgenetic alopecia) either. This article will appear in the Advice / Treatment category .

• Weaning Androcur Phase 1:

The first 2 weeks of the protocol were horrible. I had a constant migraine. I was so bad that I came back to consult him in tears saying that I would not succeed. I was both anxious and exhausted. While being very compassionate, he told me to hold on that it was normal. It was the phenomenon of addiction which manifested itself in a violent but logical way.

• Weaning Androcur Phase 2:

Then I had to delete completely Androcur to take Spironolactone at 100 mg per day + the pill. Arrived at this phase I was stabilized and I no longer suffered the incessant migraines. Of course the taking of Spironolactone was made under two strict conditions: regular tension and monitoring of my potassium rate in the blood with blood tests.

• Sweet and final phase weaning:

The final weaning phase is to remove Spironolactone and the pill. This phase being optional depending on the desire of everyone to continue to take drug treatment or not. I remind you that each case is different depending on your pathology.

Today I still take the pill because it seems more appropriate to my personal case at the gynecological level. However, I plan to change it soon due to the risks of Diane 35 in the event of taking after 40 years ... I still have a few years to prepare.

I want to clarify that I am personally not anti -pill. However, I can understand people who do not wish to take it. Indeed the taking of hormones is not trivial. I would write a future article on the impact of the various pills on alopecia because it is a subject that often comes up in your questions.

Because of my progressive weaning and the relay of another medication at first glance, I did not have a significant shedding. Indeed when you stop Androcur too brutally we can expect a big loss. In the end personally I just got a little more relaxed on the top of the head where certain places reveal my skull but overall my hair loss was less.

Conclusion of my Androcur weaning

With hindsight I would never have taken this treatment if I had known the side effects that it would have caused and the consequences on my health . I thus invite each person who wishes to take Androcur to think carefully about their choice. Remember nothing is worth ruining your health. It is the most important!

I no longer hope to one day find magnificent hair of which I would be proud but it does not matter because there are today beautiful hair substitutes like volumators or wigs .

I still want to point out that certain side effects have still been irreparable for me. Indeed I still suffer from regular migraines, I must always wear glasses. I also always have my pregnancy mask, even it has grown strongly.

The AMAVEA association helps women who have contracted meningioma following the taking of Androcur!

For those who unfortunately contracted meningioma following the capture of Androcur (whether it was prescription for hirsutism or alopecia) I invite you to get closer to Amavea Association Méningiomes due to cyproterone acetate, assistance to victims and take into account other molecules . This association is able to provide you with legal support and assistance. She also exhibits unhappy testimonies of women victims.