Is anyone taking visanne and happy to share their experiences?

[TennisAM]

Hello

My consultant mentioned visanne but can't prescribe it. I wondered if anyone would be happy to share their thoughts and experiences of it please?

Thank you

[Moon_maiden]

Did they say why they can’t prescribe? I think It’s under a different name in the UK, can’t remember what, but easily looked up.

Even if it’s not licensed, a doctor can still prescribe off licence as long as they make you aware, you may have to ask a pharmacy to order it in and pay their price for it though, and it might be a private prescription.

Meds like Zoladex are only licensed for six months for endo, but some will still prescribe for longer than this.

[TennisAM in reply to Moon_maiden]

Hi, he said the hospital tried to get a supply from Greece but they failed because of some issue. Its called zalkya here but interestingly he referred to it as visanne. I've asked my GP if they can prescribe and have given them the generic name. I believe in some areas of the country it isn't approved and others it is.

I asked if he can do a private prescription and he said no. I guess he doesn't know its available in the UK under a different brand name. Strange but sounds like that.

Thanks

[Moon_maiden in reply to TennisAM]

It could be they can’t just import it, there are stages meds have to go through if coming in from abroad. 🤞your GP can prescribe and it helps. Good luck

[TennisAM in reply to Moon_maiden]

Yes I think so, have you taken it yourself?

[Moon_maiden in reply to TennisAM]

I haven’t, think I was too far gone for anything to work, lots of fibroids as well. I’ve worked in pharmacy so know a bit about meds.

[TennisAM in reply to Moon_maiden]

Ah, sorry to hear that. Do you mind if I pick your brain? If its "greyed out" on the system, what does that mean for getting it prescribed? I asked them to contact the APC, they said they will, but the doc seemed keen to get have consultant recommend it. I pointed out it isn't consultant only medication. Thank you.

[Moon_maiden in reply to TennisAM]

I’m not totally sure, it’s likely the local CCG may not have approved it, this doesn’t mean they can’t prescribe it though. Gather as much evidence as you can to give GP. I did this for a diabetic product for someone else, it was only approved in certain circumstances, GP took one look at the pile and said they’d prescribe. They just want someone else to have their name to it. There’s a drug being tested in Edinburgh for endo, initially produced for cancer, but the cells can react in a similar way, GP said ask consultant, unfortunately, but understandably he wouldn’t as the research isn’t complete yet. I’d have given anything a try. 😆

As the consultant would have done could they contact the GP?

[TennisAM in reply to Moon_maiden]

Thank you. Totally understand about giving anything a go!! Yeah I think I'll get the consultant to write them a letter. Cheers

[Lindle]

Have a look at a post I put on recently:

healthunlocked.com/endometr...

[TennisAM in reply to Lindle]

Thank you! Saw that a few days ago, it's the reason I knew it was available so thanks again x

[Lindle in reply to TennisAM]

Can you let me know if you get it so I can make a note of the areas as they start to prescribe it. x

[TennisAM in reply to Lindle]

Hi, I'm in Brent, dienogest is greyed out on their system but they will prescribe as the endo consultant i see has recommended I try it. x

[Lindle in reply to TennisAM]

That's useful to know.

[V-ssd]

Hey, Im taking dienogest 2mg (twice a day) which is generic name of visanne, but in Germany is with another name "aristo".So far I can't give a feedback, but it has stopped my period and that seems to be good for endo.

P.s it makes me breaking out terribly.

[TennisAM in reply to V-ssd]

Thank you for your reply. Have you had any side effects apart form the breakouts please? Sorry to hear about that! x

[Nathanjames]

HI,i have been on visanne for over 3years now -- and still have mood swings and pain but not as much as before -- too scared to go off it because then i don't know what to expect as it is ok for me now....

[TennisAM in reply to Nathanjames]

Thank you for your reply, I am worries about mood issues as I already face that and think a progestin may make it worse. If you don't mind can I ask how big a difference its made to your mood? Thanks again x

[Nathanjames in reply to TennisAM]

My mood issues has become worst to be honest because i also had moodiness before taking it but also keep in mind we all different - what works for me might be totally different for you ...😀

[TennisAM in reply to Nathanjames]

Thank you I know, its so hard to make a decision as I've had bad experiences with progesterone before! Thanks again x

[Nathanjames in reply to TennisAM]

i know hey and i am so scared to leave it again because of what might happen after so i sit with these mood swings rather...

[TennisAM in reply to Nathanjames]

Have you spoken with your doc to try treat the mood swings? Might be worth talking to a GP you trust x

[Nathanjames in reply to TennisAM]

yes i have ---was told maybe to exercise more and consider changing my diet, rest more and so forth -you know the norm-

[TennisAM in reply to Nathanjames]

Oh yes, the usual. I'm surprised they didn't offer medication. There's a great book called The Happiness Trap by Russ Harris, it is based on Acceptance and Commitment Therapy. Its a science based therapy that's very effective. For example I can now sleep through 7/10 pain thanks to practising the advice in that book. The other thing is high intensity CBT and trying meditation/yoga.

Hope it improves x

[Noodle1984]

I took vissane for about two years. We had to change because I wouldn’t stop spotting all the time. It just wasn’t a strong enough medication for me as I also have adenomyosis (which causes the heavy continuous bleeding). It was probably the best at controlling my cyclical nausea and pain (despite not having an actual period). I live in Canada though so it’s an easily accessible medication.

[TennisAM in reply to Noodle1984]

Thank you. I'm sorry to hear that. I don't have adenomyosis (well most likely not) but have always had very very heavy bleeding so am worried it won't be strong enough. Its good to hear it helped with nausea and pain. Thank you for taking the time to reply x

[RZ94]

I started taking visanne 4 months ago directly after my diagnosis and within 3 months the ovarian cysts on my right side shrank 2 cm (from 5 to 3 cm). I haven’t had any period related pain since I started it. Hope this helps!

[TennisAM in reply to RZ94]

Wow that's great. Cheers. x