Another study just published is reporting an additional 2 cases of meningiomas in transsexual women taking cyproterone acetate (CPA). This brings the total meningiomas reported in transsexual women in the scientific literature to 18, 17 of which were associated with the use of CPA (some at LOW doses, below those even usually prescribed). This is worrisome, especially considering the side-effects, sometimes quite serious and irreversible such as total vision loss (i.e. blindness). In this study, the estradiol dose was low in both cases. An earlier study had expressed serious concern by confirming "a strong influence of cyproterone acetate on meningiomas growth." Cyproterone acetate has also been associated with the onset of 13 of 17 prolactinomas reported in transwomen.

This is cause for concern, IMHO and worrisome, even if rare, considering there are alternatives. My left eye vision is missing in one spot and this is only something I had noticed since being post-op, after taking cyproterone acetate. I had never thought of making the link but now might bring this up to my doctor. Thankfully, I stopped it a long time ago but my vision never recovered.

Please share this with your doctors. They need to know this.

Androcur is the one used here, almost solely. Only in rare cases, it´s switched. I´m more worried about the liver toxicity of it.

Thankfully I can get rid of that stuff in a month.

I have been have on a reduced dose of Androcur for over six months much lower than the initial prescription. It is very effective even to my Doctor's surprise. If you are taking it I would suggest asking your doctor to try lowering the dose to reduce any negative side effects. I am at nearly 1/8 of the required dose. Less of any drug has to be a good thing. 

Quote from: ConfusedSarah on June 08, 2018, 02:56:19 PM
I have been have on a reduced dose of Androcur for over six months much lower than the initial prescription. It is very effective even to my Doctor's surprise. If you are taking it I would suggest asking your doctor to try lowering the dose to reduce any negative side effects. I am at nearly 1/8 of the required dose. Less of any drug has to be a good thing.

+1 for that pearl of wisdom. 

Hugs, Devlyn

The last study I read was that meningiomas occured with long-term use. Can you link this new study?

My doctor only prescribes Androcur or Spiro, and Spiro brings my blood pressure dangerously low. I did ask about Bicalutamide/Casudex and she gave me a puzzled look..never heard of it. SRS is coming up for me thankfully, then I can stop taking Androcur hopefully forever.

Kay kindly privately messaged me the articles.

What I can deduce is that the tumours occur mostly in those using Androcur for an extended long-term period (one patient studied had been on HRT appox. a decade), and another article concluded:
"Because these conditions are quite rare, performing regular screenings for such tumours (e.g. regular prolactin measurements for identifying prolactinomas) seems not necessary."

So I feel as if the use of Androcur in the short-term is relatively safe (no drug is ever perfectly safe) provided the lowest possible dose is taken. I think those who are non-op (non-SRS or orchi) should find an alternative anti-androgen. This is just my personal unqualified opinion.

Indeed, the tumor is almost always discovered/diagnosed several years after starting the drug but personally, given there are alternatives (E alone, other anti-androgens) and their side-effect profile, I would NOT take cyproterone acetate, ever. We may, in time, find out that some do indeed develop symptoms earlier and I would rather not be that person in whom this is the case. I have issues with my left eye that I only noticed post-op, 2-3 yrs after CPA usage and who knows if this would have been the case, had I not taken it. Some meningiomas probably also go unreported.

The final decision, of course, rests with the doctor and the patient.

Well said. I look forward to the day I can stop taking it (7 months to go).