Prostap injection : Hi everyone, I just... - Endometriosis UK

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Prostap injection

Stefk16 profile image
18 Replies

Hi everyone, I just wanted to hear peoples thoughts on the prostap injection (chemical menopause) as the recommended time to have it is 6 months. I have been on it for 6 years! Nobody can answer my questions! So far I don’t think there’s many side effects, apart from my body deciding to stop absorbing B12! Is anyone else have a similar situation?

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Stefk16 profile image
Stefk16
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18 Replies

I’ve been on Prostap for a year now, after two previous courses of six months. I do really well on it, no side effects, all positive. I’ve never heard of anyone being on it for six years, but I was initially told six months was the maximum duration of taking it which isn’t the case as I’ve had it this time for a year while waiting for surgery xxx

Maxi72 profile image
Maxi72

Hi

I’m under a specialist centre and have been on it for over a year. After surgery, my consultant realised that I need to stay on it or similar and explained that it’s only licenced for 6 months which means if I have side effects, I can’t sue the drug company but I would sue him. He therefore needs to check for side effects on an ongoing basis and I have my first bone scan next week. I’m on HRT too. Are you?

Stefk16 profile image
Stefk16 in reply to Maxi72

Hello! I am on HRT yeah, I’ve had one bone density scan a few years back but no one has ever asked me about side effects or followed up on me being on it for so long!! Waiting for an appointment with a specialist soon so hopefully they’ll be able to tell me more. Feel like my gynaecologist just stuck me on it and just left me on it when he discharged me to my gp! Good news you haven’t had any side effects!!

Maxi72 profile image
Maxi72

Sorry when I say side effects, I mean bone density effects. The others would mean we couldn’t tolerate it for so long as we’d know. I don’t know what the recommendations are in terms of frequency of bone scan but will find out at the end of the month at my follow up. Shall I let you know then?

Stefk16 profile image
Stefk16 in reply to Maxi72

If you could that would be amazing! Just want to make sure I’m not doing any damage but don’t know the right people to ask!! Hope it continues to work for you 😊

Maxi72 profile image
Maxi72 in reply to Stefk16

Hi

I’ll message you again at the end of the month. My consultant is brilliant so should get clear answers to questions.

Maxi72 profile image
Maxi72 in reply to Stefk16

Hi there

I’m really sorry but I didn’t get chance to ask questions about the side effects etc. My consultant was called away from the clinic due to an emergency so there was only really time for a brief exchange. I’m due back in early July so will try again then.

Hope you’re doing OK?

Stefk16 profile image
Stefk16 in reply to Maxi72

Hello! Thank you so much for remembering! I managed to get an appointment with my specialist consultant a couple of weeks ago and I totally forgot to ask about the length of time to be on it (I was feeling very overwhelmed!) he didn’t say anything about how long I’d been on it though. He’s changed my HRT to try and stop my bleeding, been taking it just over a week now and still bleeding/spotting! Hope you are having a good day 😊 xx

livvi_livvi profile image
livvi_livvi

Hi,

I've been on Prostap for nearly 3 years.

My gynae explained that the 6 months is if it is prescribed with no HRT addback. He told me that really because of bone density effects you should'nt have just prostap for longer than 6 months.

However, I am currently at just over a year with no HRT due to side effects and mis-communication.

He also said that with the right combination of HRT addback that I could be on it for years until I either want children or am older to enable a safe hysterectomy.

I have never had a bone scan though can I ask long you had been on it when you had one? (Im just wondering whether maybe I should ask for one?)

😊 xx

Stefk16 profile image
Stefk16 in reply to livvi_livvi

Hello! I think I had my scan a couple of years after being on it and there was no concerns. I do take add back but since dec I’ve been spotting/bleeding on both the prostap and the contraceptive pill 😕 waiting for a referral to Middlesbrough so hopefully they’ll be able to give me more information! Xx

livvi_livvi profile image
livvi_livvi in reply to Stefk16

Ahh thanks for that I might talk to my gynae I'm seeing him on Friday.

I had spotting/bleeding to begin with when I first went on it. But havent had any since.

It's good that you have a referral back to the hospital and I hope they help you. Also, I hope you dont have to wait too long I know what it's like now. 🤞

☺ xx

Moonglo profile image
Moonglo

Hi I’ve been on Prostap since 2016, before that, Zoladex since 2014. Both are the same, but for some reason the Prostap is licensed for women needing it long-term, whereas Zoladex is meant to be more for men. I was allowed to go on it by my BSCG specialist until my menopause, meaning I expect to have it for another 8 years. My GP is responsible for follow-ups like the bone density scans, (and the 3-monthly Prostap injections) but only because she received instructions from the specialist. So in your case, it should depend on whether your specialist is still looking after you, or whether you’ve been discharged back to your GP. Make sure you get those instructions!

klc48a profile image
klc48a

I had Lupron injections in 2006 I am now disabled because of this drug please look into this. I have joined a group Lupron Warriors on Facebook for victims suffering.

Duckybun profile image
Duckybun in reply to klc48a

Klc, I’m so sorry to hear that you’ve been left with a disability after being on Lupron. I’ve read previously that there was a class action against the manufacturers in the states by a group of women who had horrible lasting effects from taking the drug. I’m on the verge of a consulatation where I know this will most likely be suggested, would you mind giving me some more information on your experiences? Is Lupron just a different name for prostap?

klc48a profile image
klc48a in reply to Duckybun

Lupron yes it is I was given no add back and I was prescribed this with no consultation at all I just went to surgery and was injected into stomach day after a Lap. I have crumbling spine constant joint pain stomach issues vision problems amongst lots of other things. Who are you consultation with. I get nowhere with docs / hospital consultants they say they have never heard of the drug. I was given it in 2006 but have had immediate problems and struggled to get any help.

I think it depends on your age. I am 23 and had 4th injection last week, 2 more to go. I would love to stay on it but my gyno said 6 months is the max for someone my age whereas if I was older they would let me. Xx

Stefk16 profile image
Stefk16 in reply to

Ahh that’s strange, my consultant never said anything about age (or mush else!) but I was 24/25 when I was started on it. Hoping to see a specialist who can answer my questions! Xx

in reply to Stefk16

Started at 24/25 and you've since been on for 6 years? That sounds quite a long time - you're still so young! The nurses that do my injections are quite adamant I cannot have more than the prescribed six, I ask them everytime I go if I can because I love it. Had my review with the gyno last week and he confirmed it too - no more than 6. So he said we might look at peritoneum surgery to prolong the effects, as the effects from 6 months can last a few months up to 2 years when you stop - that was what he told me. Are they doing regular bones scans? Xx

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