Has anyone tried Ryeqo for fibroids?

[Ridingladybugs]

Just that really - been offered that or an injection of GnRHa whilst waiting for surgery ( I had severe bleeding which resulted in me being in resus and then hospital stay).

I didn’t get much info from the consultant - on reading I think it possibly has less side effects? I’m currently on Provera until moving to one or the other.

Hi, I have recently started a Ryeqo treatment, but too soon to evaluate the effect since this is my first cycle on it. I haven't noticed any side effects though (yet).

I'm 45 I've been using Ryeqo for 6 weeks now. Cant tell much about effect on fibroids, but somehow I feel it does not work well on period. First period was ok, but second one is late between 10-17 days (irregular periods). I also feel Ryeqo is somehow represing my period. Feeling dry, swallen on hip area, lack of libido and a bit depressed after taking them. Need to consult my gynecologist if I will continue with the theraphy.

Hi, I have just been prescribed Ryeqo for large fibroid. I live in north wales and had to go to Liverpool Womens hospital (via A&E and blood transfusion) for them to prescribe it.... I am about 5 weeks into treatment. Fibroid caused extreme blood loss (had 3 blood transfusions in May) and have to take additional norethisterone which has thankfully stopped the heavy bleeding. Am due gynae consultancy and hysterectomy being spoken of, but I am wondering if I can just keep on the norethisterone... we will see after consultancy.
I find Ryeqo has changed my sleep pattern, in that I don't sleep as well, dream a lot and wake in the night feeling HOT (and not in a sexy way!). Definitely think it's shifting the balance into menopause - more than ready for it and just very grateful blood loss has ceased. Interesting to hear others stories as Ryeqo such a new drug.

JaneMac1, interesting what you say about your sleep pattern. I had very similar symptoms when I started taking Provera for heavy and prolonged fibroid/polyp/adenomyosis related bleeding and was wondering if it had tipped me further along the road to menopause. The Provera stopped working for me and I was prescribed Ryeqo without any health checks or questions asked. I have decided not to take it for now as my bleeding stopped after stopping the Provera but now having regular hot flushes! I'm wary of starting the Ryeqo as it says it can cause hot flushes and bleeding so just waiting to see what happens next.

Hello All,
I’m 39 and had fibroid issue. Doctor prescribed me Ryeqo , I used it for a month but it could not stop bleeding and I have to undergo emergency hysterectomy procedure due to excessive blood loss.
I believe it depends on the size and location of the fibroid, in my case none of the medicines worked and I never had any side effect.
thanks

Just bumping this in case anyone else has experience of this drug. Like the OP, I’ve recently been in resus and then had a stay in hospital and started Ryeqo a few days ago when I got home. It seems to be causing constant bleeding - not at the extreme level that landed me in Resus, but still like a heavy, crampy period, and I really need to get my haemoglobin levels up before my hysterectomy.

I have been taking Ryeqo for almost a month now. I have fibroids with the biggest being 15cm which ive had for a few years but issues started after I gave birth when I nearly bled out. I’ve had terrible side effects with this drug (was on provera which didn’t help) such as nausea, sleeplessness and v heavy bleeding and in the last few days I’ve had thick orange mucus mixed in blood gushing out at speed with terrible pain and I wonder if it’s the F degenerating? Due to see a dr in the next few days so fingers crossed.

Just seen there have been more messages on this thread!

I never went onto Ryeqo in the end - had two injections of Zoladex instead whilst waiting for myomectomy. Surprisingly the side effects weren’t that bad at all but I still had to continue Provera as the bleeding continued, albeit massively reduced.

For anyone waiting for an op - as mentioned I had an open myomectomy in the end rather than a hysterectomy as it was a single huge fibroid and I’m near menopause age. Unfortunately I needed a further op as first one caused it’s own issues, but since then I’ve had ‘normal’ periods and can’t tell you the relief and difference to my life it’s made ( despite the two lots of Zoladex and also having an ovary removed my periods bounced straight back the first month bang on time!).

Hope everyone on this thread manages to get some relief soon

Hello, thanks for sharing. Did your bleeding stop totally with Ryeqo or reduce? I have been on Ryeqo for about 5 months and i have noticed that when i started with the medication initially for over a month the bleeding stopped entirely, but after the second month bleeding started again and then spotting may be because am on ferrous fumarate, i only have about 3 days of no spotting in a whole month, i can't even calculate my cycle anymore, although ryeqo helped in making the bleeding light rather than the usual heavy blood clot, i also feel light as if the fibroids are shrinking, i decided to stop Ryeqo for a few days and see what happens but had to commence it back today as i started feeling the heaving cramping pain on my right hips down. Does it mean we have to be on Ryeqo for a long time?

Hi Stephanieos, are you on Ryeqo alone or taking other meds alongside it? Interesting that you feel light - my understanding is that if the fibroids are shrinking you would be in a lot of pain, is that the case? Glad your clotting has stopped. I’m on Ryeqo, norithesterine and transemix acid. My bleeding completely stopped with this combination otherwise I was having accidents everyday and couldn’t leave the house- it really was that bad.

I’m having my fibroids removed in a few months but because they’re so big, I don’t know what the surgery will look like. I feel incredibly trapped so it’s nice to have this forum to let it all out.

Hello all, interesting to read new posts here. And reassuring that there is a community of us! A quick update - I had myomectomy to remove prolapsed uterine fibroid last Tues at Liverpool Womens Hospital. Surgery went well, I just feel v tired. I'm still on Norethisterone + Ryeqo combo – the idea to reduce norethisterone (have been on 30mg to stop bleeding, now on 20mg, with some spotting) Idea to get it down to 15mg and phase out entirely, if we can. I think reducing the norethisterone is making me aware of Ryeqo more - sweating a lot at night in particular, and feeling a bit fed up with it all today - I think because I saw some blood, and can't bear the thought of blood loss again, as was so dramatic in May. Hopefully the meds will work, have been reading up a bit more about them on NICE site. Thanks for being there and solidarity!

Hi Saara 23, i am using the ryeqo also take blackstrap molasses to replace my iron tablets, are you suggesting i take tranaxemic acid too, and what dosage?

Hi Stephanieos,
i continued to bleed with clots the size of my palms but with Ryeqo and found that if I took Norethisterone plus the T acid, I didn’t bleed AT ALL. MY dosage for T acid is 1 tablet 500mg a day. Just do what works for you.

Hi Janemac really pleased to hear the surgery went well. I hope your meds give you relief!

Hi Saara23,
Wow, information they say is key, do you know i took just 2 tablets of tranaxemic acid yesterday and the blood has stopped now. Thanks for sharing your experience and i am glad i shared mine as well, that means Ryeqo alone can not stop the bleeding. Thanks a lot Saaara

Awww I am so pleased you have had some relief. Tbh Ryeqo is such an unknown drug with limited data trials, I wanted to try and make sure my GP was doing everything. The extent of my bleeding and clots was not normal and visiting the GP every week with an update meany I could tailor what was working and what wasn’t and I was being taken seriously: it’s been a battle. Now I'm just waiting to get these fibroids out.

We would be fine, the bleeding fibroids causes is too severe. God would help us all.

I’m on ryeqo it’s my 3rd I’ve been continuously bleeding
does iron tablets effect it ??

I’m on ryeqo and have been for 3 months I don’t think it’s working as I’m constantly bleeding and losing huge clots
does anyone think iron tablets effect this working x

Just out of interest, did you all get Ryeqo prescribed on the NHS? My GP said they aren’t allowed to prescribe it, and the NHS gynaecologist I’m under hadn’t heard of it (and he is a senior consultant). I paid £270 to get it privately (for a three month supply).

I’ve also had continuous bleeding on it but nothing like the horrific flooding I’d had before starting it.

Hi yes got it on the nhs through garne
I feel like it’s doin nothing only making my bleed more
I’ve contacted my gp today to see if there’s any else they can do to stop it as it’s effecting my life x

I’m going for the nuclear option and having a hysterectomy. I’m just taking Ryeqo until the operation to try to shrink the fibroids. It doesn’t seem to me to be a satisfactory option to stop bleeding, though it has significantly reduced it.

I think that will be only option but I’m so scared 😢

@GCAcademic that's awful that you had to pay so much for Ryeqo. I had researched the drug and suggested it to Gynaecology dept at Liverpool Womens Hospital - they agreed and prescribed it. My local GP here in Wales can't prescribe it, although, weirdly, the local pharmacy will order it in if it is a prescription from a hospital / specialist clinic.
I would push for your gynae dept to put it on prescription for you - outrageous that you should have to pay so much for it.
Good on you for going for the full hysterectomy –
it still might be on the cards for me as I have a big fibroid and enlarged uterus, but they just took out a fibroid that had prolapsed into the vagina (hysteroscopic myomectomy), that they think caused all the terrible bleeding. Fingers crossed 2 weeks after surgery, so far I have minimal bleeding on 15mg of norethisterone and Ryeqo. I'm 4 months in on Ryeqo now and really feel the affect, in that I am sweating a lot, not sleeping much, and I think it is pushing me into menopause – less oestrogen, smaller fibroid, fingers crossed.

@Kellou1 sorry you're having such a hard time of it. The only thing I found that really stopped the bleeding was Norethisterone. I was on heaps of Tranexamic acid and lost a LOT of blood (3 blood transfusions of 2 units each) but a big dose of norethisterone stopped the terrible blood loss. I was on 30mg but have now got that down to 15mg a day. Not sure about Ryeqo, think it's a long-haul sort of thing, but if you are bleeding a lot still, do get norethisterone if you haven't already. best wishes and good luck.