Log in
Endometriosis UK
38,095 members33,285 posts

Zoledex injections, I need your help. How long have you been on the drug?

I’ve come home to a letter from my gp stating they won’t prescribe my zoledex any longer and have asked the Hospital to continue this as they have suggested it. I’m devastated! I had a long chat with a consultant regarding the drug and the risks and we agreed I can’t stay on it forever but he gave me another 6 months as he was happy to at the moment. I can’t travel 20 miles for a 4 week injection. I want to go to my gp and try to understand the reasons behind this and to show how many people do have this over the usual period of 12 months, I must add that I am already on hrt as well. This has literally been the only thing that works for me and without This I’ll be having a hysterectomy which I was hoping to delay for now

17 Replies
oldestnewest

Hi!! I’ve been on it for 12 months but my gnyo has said because it’s turned my life around I can be on it as long as I wanted to. I asked for a max amount of time and he said 30-35 years. After taking it for 18 months I need to start having bone scans and I also take livel so I add a little estrogen into my body to lower the effects but it’s changed my life completely :) hope that helps

Reply

Thanks for your replies, I’ve spoken with the practise manager and because it’s not licensed after 6 months they won’t do it as if anything happened whilst giving me the injection they are not covered. They said it’s down to each practise to if they will do it. It seems to change to each consultant I talk to but I’ve not been told anything about scans. Sounds like you are being well looked after x

Reply

That’s such a shame, it’s so life changing that my dr thinks it will be too damaging if I stop as nothing else has worked

Reply

Same here. My consultant said as long as I needed it and another said it will need to stop at some point because it can cause damage to bones and heart in the long run. Hard to know what to believe but it’s the only thing that makes me feel human again

Reply

Hi!

I’ve been on Decapeptyl then Prostap every three weeks since March and I’ve never been able to have injections at my GP ( I think it’s something to do with funding) so I travel 45 minutes to get to the hospital and often then have to wait ages while they find a nurse who can do it. It annoys me as I have to take a day off work every 3 weeks and sometimes I’ve got there and they haven’t had the injection in stock! However, I’ve coped with the inconvenience given the benefit I’ve had from it. I had my first lap 3 weeks ago and I think at my follow up they’ll be discussing stopping the injections and naturally I’ll be nervous. I was told my one Gynaecologist that although it’s licenced for 6 months you can be on it indefinitely with HRT. The long term side effects are unknown. Maybe that’s not the same with Zoladex- could they maybe consider another analogue? Would that make any difference? Have you had endo excised yet?

X

Reply

Thanks for your reply, I’ve spoken with the practise manager and because it’s not licensed after 6 months they won’t do it as if anything happened whilst giving me the injection they are not covered. I’m pretty much going to be in the same boat with travelling every 4 weeks to hospital but the timing is not great as I’m due my injection on Tuesday and they won’t do it! I’ve been on every other treatment and had laps so after this I’m on for a hysterectomy which at 30 I’m not ready for yet. I’m just worried how work will take it as I’m part time and the hospital clinics are on the days I work. I can’t swap days either because of child care

Reply

I would explain your working hours to the hospital and get them to accommodate you on your days off. This condition rules our lives enough- you should be able to work as much as you can. I think that they should be responsive. In my experience, it’s worth talking to your Gynae’s secretary about it. Good Luck! X

Reply

Yeah I have spoken to her before and tried to change it but my consultant only does a couple of clinics a month these days. Hopefully I will be able to figure out something that works though as it’s not like I need to see her every time I have it

Reply

It might help to know that for injections you don’t need to be put on your consultant’s clinic- there just has to be a Gynae consultant present to sign off the drug so the nurse can administer it. I never see a doctor when I go- they just overbook me a slot on to any Gynae clinic so most days there’s either a morning or afternoon available. Don’t give up! It’s not acceptable that you have to lose work for this. X

Reply

Thank you, how long are you usually in the hospital for? I can’t see my toddler staying entertained whilst I go so will have to arrange childcare x

Reply

Can you ask your consultant to call and speak to the gp or vice versa?

Reply

The gp has left a message for the consultant and I’m waiting for them to respond. I don’t think I will be getting my injection on Tuesday now which is very annoying that I’ve been put in that position

Reply

Yes that is very annoying. Sorry to hear that.

Reply

Thank you x

Reply

It’s usually between 10 and 30 minutes as I’m not waiting in the main clinic to see a doctor. Hope you get it sorted.

Reply

Ah that’s better then I expected. Thank you, hopefully if they agree to do it my Hospital will be the same x

Reply

Only supposed to have 6months worth in a lifetime But dont do it hun

Its ruined mine. Come to see me at Lupron Warriors on Facebook see the evidence for yourself my name is Cheryl Newton I'm disabled because of it and I'm running an awareness campaign to help others stop ruining their lives too.

So sorry you are the same Xxx

Reply

You may also like...