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Central precocious puberty ... any mums out there?

8 replies

joburg · 01/11/2009 11:53

My daughter (6 1/2) has been dx with central precocious puberty and is on monthly Diphereline injections since then. They are painful, she has horrible mood swings (i posted another thread on education, but since then found out that all might be just due to her condition). I would just like to find out if anybody knows more about an implant marketed in US called Supprelin? I can't find anything about it in Europe. If not, anybody knows how to calm down these mood swings that are tearing our life appart? Any mood stabilizers? Anybody have experience with CPP? Please, we are at our wits' ends, and we still need to go on like this for 5 more years ....

OP posts:
rebl · 01/11/2009 18:25

Hi joburg. My ds (3.5yrs) is currently being closely monitored for precocious puberty. He has pubic hair, spots and starting to become very aggressive. His bloods are all borderline but because he's not had a big growth spurt and shot up and is actually small for his age they're not happy yet to dx precocious puberty. So he's monitored monthly at the moment. I'm not sure about the treatments yet as we're not at that stage. Just didn't want to read and run.

Hopefully someone else will come along with something more useful to you.

joburg · 02/11/2009 09:51

bump ... anybody?
Rebl, thank you for your reply, it's good to at least hear a word or two ... how is it with your son's bone age? That should be a clear sign of possible problems ....
I tried to contact in the last few days as many as i could find of the endocrinology/pediatricasl/pharmaceutical associations in Europe asking them if there is any sign of them considering the implant i mentioned before. It still amazes me that in Europe they still use those horrible painful monthly injections, giving those moods swings i mentioned about, while in US they have started to use, for some years, a more confortable implant, no side effects reported (i read countelss reviews) and still the Europeans don't seem to start considering it .... DD and i had a horrible day yesterday, with anger starting out of nothing, crying over nothing .... we'll see what today's brings

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lou031205 · 03/11/2009 19:01

In this country, Supprelin (histrelin acetate) is called 'Vantas'. Both Supprelin and Vantas come as 50mg implants of histrelin acetate. But in the UK, the BNF lists Vantas as contraindicated for children due to lack of safety data. Here is an information leaflet.

Vantas implants cost £990 each (annual), and the diphereline costs between £69 and £200 per month depending on dose, so doubt it is a financial consideration, tbh.

joburg · 04/11/2009 05:51

Hi Lou, thank you for the link. As far as i read by now Vantas, even if based on Histrelin (just like Supprelin) is intended only for treating advanced prostate cancer. Don't ask me what the difference is, but according to the manufacturer, and others, the two are not one and the same. I also started to receive some answers form the different organizations i contacted. I was laughing and crying in the same time. No real information whatsoever!
The UK Child Growth foundation is informing me that 'even if the drugs are marketed in one country, they might not be available in another one' (wow! rocket science!). Other than that, they have no clue about the drug (not even heard of it?! in the mighty age of the internet???) Then the European Society of Endocrinology is telling me they have no medically trained ppl over there and send me back to the C Growth Foundation (endocrynology society without any endocrynologists!). I could just screem! I just asked a simple question: anybody knows ANYTHING at all about this damn Supprelin?
It's not so much of a financial matter, it's more about stress, monthly painful injections, ups and downs, mood swings .... it's hard for DD to take it at only 6 years old, it's hard for us ... sorry, this was a bit long, but i had to spit it out

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lou031205 · 04/11/2009 08:47

[Hmm] to some of the information you have been given.

Histrelin Acetate is Histrelin Acetate. It can't become something else. If Supprelin has 50mg of Histrelin Acetate in the form of a slow release implant, and Vantas has 50mg of Histrelin Acetate in the form of a slow release implant, they are essentially the same.

There may be differences in the speed of release, or location of implant, which may affect things, but they are not essentially different.

Having said that, Vantas is licensed for advanced prostrate cancer treatment only. So no doctor is likely to give you it.

joburg · 04/11/2009 09:32

Lou, good point! I see no difference in the description of the two and yet the producer is marketing them as targeting two different conditions. You gave me more headaches now but i do appreciate it! Thanks. Will have to just try to find out more about it since 'the specialists' don't seem to want to help too much.

OP posts:
joburg · 09/11/2009 09:29

nobody else?

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MedqueryBB · 27/06/2014 20:14

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