Advice needed

[Millbanks]

Hi everyone - after a bit of advice from the collective brain

We are incredibly lucky enough to have a little boy from our 6th transfer in 2021, and had 5 frozen embryos at the clinic should we decide to try for a sibling.

We've now done 2 FETs with exactly the same protocol (steroids / intralipids / ERA timing / PGT-A normal embryo) as our successful one - and both have been BFN.

I had a follow up today with my consultant who said exactly what I thought she would - that we could try a repeat ERA or IVIG to help with immune suppression.

I really really don't want to have another ERA test (timing and money) and IVIG is £2000 a pop so not really viable either.

Has anyone been in this situation and had a 2nd ERA with different results? Am trying to figure out if it's really worth it.

I asked if we could try hydroxy or another immune suppressant (or up the steroid dose - currently 20mg) but she said they don't do that and 20mg is the highest they prescribe.

So, I am thinking of taking matters in to my own hands and upping my dose myself - has anyone been on a higher dose than 20mg? Is it safe?

Thanks in advance xxx

[Purpledoggy]

Hi lovely. Really sorry to hear about your 2 FETs, how utterly frustrating. I had a quick look in the lit and came across this paper. It’s a big expense but it could possibly be worth it:

academic.oup.com/humrep/art...

It’s a small study so it’s hard to call it concrete evidence, but it does suggest pregnancy might change the implantation window a bit.

Wishing you masses of luck xx

[Millbanks in reply to Purpledoggy]

Thank you for this - it's so hard to know whether the anecdotal info is right or the really small focus group! I need to mull it over but also need to start provera on Saturday if we want to go straight in to another FET...

I hope you and the babe are doing well - and your little one is not being quite so tricky. I find that they change week from week (even at aged 2) so you never quite know what you're going to get! xx

[leo1980]

hey! Lovely to see your name pop up again!

With the steroid - I am on 25mg so it is possible to go higher than the 20. I am very puffy though/hungry/ wide awake so maybe best to stick with the doctors recommended dosage? She will have your file/full medical history so is best placed to decide! As you know with steroids they phase it when you come off, the only thing I can think off is if you start at 25 it will take longer to come off it (4/5 days) extra than if you started at 20! Wonder if any of the pharmacists on here can tell us if the extra 5mg makes that much of a difference.

With the ERA - I got pregnant twice on the ERA results from 2021. My clinic didn’t even recommend repeating it before my last transfer 29 Feb 2024.

As you know IVF is a process and a numbers game. We already know your embryo’s are good (genetically normal) so I can see why they are looking at investigating you instead.

It’s very much a mixed bag isn’t it. I had about 8/9 transfers in all over 4 years with pgt tested and non pgt tested embryos none stuck but I had BFP on a non tested and a tested in the last year so I too can’t make up my mind if PGT actually increases the odds.

Keep us posted on how you get on!

[Millbanks in reply to leo1980]

Aww likewise!

That's interesting - do you know why they put you on that dose? It would be interesting to know if 5mg makes any difference.

Re the ERA - that is also interesting! I really can't decide what to do - in essence I don't want to waste more time doing mock cycles - but then if we do another transfer and it doesn't work then I would kick myself if that was the reason.

I'm sorry your last pregnancy didn't progress - are you planning to use your last embryo? I didn't think it would be this hard 2nd time round but here we are!

xxx

[leo1980 in reply to Millbanks]

I think 25 is the recommended dosage. I was at a different clinic before lock down and that doctor also put me on 25mg. I got a few girlies on the IVF rollecaster who I meet in the park for morning dog walk/run and they too are on the 25mg. (One of the girls is with a clinic in Spain)

A repeat ERA, the time, money and drugs. It’s all a bit much and then balancing whether you ‘use up’ your embryos on cycles. If it were me, I would probably just do the repeat tests as the value of the embryos would outweigh the repeat testing costs especially if there isn’t an endless supply of pgt normal embryos and we all know doing the same thing and expecting different result in this game, is a waste of time and money.

My first pregnancy in Oct last year- was 7-8 weeks where the sac was empty. I was absolutely fine. Had it surgically removed 2 days before Christmas and then went off skiing. This was a non tested embryo from 2019. All the after tests (can’t remember what it’s called now) indicated the embryo was the problem (just that one as we had katatyping years ago) and the reccomendation was we stick to the same plan as before. I had my transfer with a pGT tested embryo from 2021 about a month ago and got a BFP. It’s about 5/6 weeks now and HCG rising nicely BUT there is always a but. I feel absolutely nothing. No symptoms etc. so I suspect it might be the same although not much I can do as booked in for a scan next Wednesday. I did contemplate trying for the early scans but on reflection it might be too early to see anything and a little bit of patience on my part wouldn’t be a bad thing. Trying my hand at being all zen!

I am in the interim searching for donors/clinics abroad because let’s face it, it’s not my style to just go 💯 zen! IVF is anything but easy…

[Millbanks in reply to leo1980]

That's interesting - I feel like 25mg would be ok for me - I don't know why my clinic won't up it - my clinic was taken over by another one last year (and I know my previous consultant would have given it a go). Will mull it over for sure...

I do know what you mean about using up our precious embryos - I won't be doing any more egg collections so they are definitely our last. But part of me also feels like if it doesn't happen I'm OK with that - obviously I do want it to happen otherwise I wouldn't be here - but I also don't feel the same frantic fear that I did last time - when I was utterly terrified of never having a baby. So maybe I toss a coin?!?!

Oh that's lovely news - I totally get why you are feeling hesitant about being excited though. I was literally just saying to a friend who is currently pregnant and having awful sickness, that I felt NOTHING through the first 20 weeks of my pregnancy. Until he started moving I was convinced that I wasn't pregnant at all and it was just a cruel trick. So you never know, it might all be hunky dory! I have everything crossed for you xxx

[leo1980 in reply to Millbanks]

If one of the girls in pharmacy read this I am sure they will advise if that extra 5 makes a significant impact. If you have been on 25 before and you are just fine maybe no harm in upping it.

I get that too. Re: the lack of fear. It’s a mental mind frame, and I do believe things fall into place when your mind is elsewhere.. and as yours is a bit…it might just be ok without having further tests.

I know I know they everyone is different etc etc. but surely I should know/feel something? for now it is what it is until next week - waiting game with fate I suppose ❤️

[Millbanks in reply to leo1980]

Hopefully someone will know! I'm pretty sure I've seen people on here on 30mgs too so maybe 25mg will be ok.

I can't stress to you enough how LITTLE I felt - I think the steroids suppress a lot of symptoms but I didn't have sore boobs, didn't need to pee a lot, wasn't particularly tired, my cervix felt normal, I didn't feel sick - I felt so normal it was scary. Every time I had a scan I was convinced that my uterus would be empty.

xx

[Miracle43]

Have you had NK uterine cell testing to see if you need the steroid's? Xx

[Millbanks in reply to Miracle43]

yes it was the steroids that helped our transfer work last time so I know I need them xx

[Miracle43 in reply to Millbanks]

I’m sorry to hear about your recent transfers. Hope you are doing ok?

When was the last biopsies?

I’ve had 2 biopsies a year apart at Coventry. First one I took steroids before transfer. Second time they days to start 5 days after. The guidance is constantly changing 🫣 xx

[Millbanks in reply to Miracle43]

Thank you. My ERA biopsy was 2021 but my NK cells test was in November xx

[Skittles11]

Hi I don't know how much help I can be but I have also wondered can 5 extra mg of prednisolone make that much difference. I saw an RI at one point during my treatment and it was suggested I take 25mg of prednisolone whereas my main clinic would have usually prescribed me 20mg. What I found interesting is that the clinics I spoke to in Spain have been pretty astonished at me being prescribed these doses of prednisolone as their standard amount appears to be 5 or 10 mg. And Spain is a leading country with IVF apparently so it does make me wonder sometimes x x I also liaised with 2 UK leading clinics for consultation and both said they will not prescribe hydroxy based on limited evidence. I have had this in the past but it seems not to be common practice to be able to obtain it

[Skittles11 in reply to Skittles11]

You could seek input of an RI who would treat you separately for these issues and include meds such as higher dose prednisolone and hydroxy. However I will tell you that my experience with the one I used was poor but if you wanted to you could consider a consult with one of them x

[Millbanks in reply to Skittles11]

To be honest I'm running out of mental energy to have any more testing done - but thank you! x

[Skittles11 in reply to Millbanks]

Totally get that, it's the same for me. Am so fed up of speaking to so many different doctors, all of whom have a different take on the same matter, and the testing itself all takes time, energy and money x x

[Millbanks in reply to Skittles11]

It really does - you've had a hell of a journey.

Are you still thinking of donor eggs? xxx

[Millbanks in reply to Skittles11]

Thanks Skittles - that is really interesting. I think what is hard is that we never really know exactly what works and what doesn't because there are so many variables. Yes in the USA they prescribe hydroxy as standard so its annoying that at my clinic it's a blanket "no". xx

[HedgehogMad]

Hi lovely, recent studies have essentially shown the ERA does not help, in fact pregnancy rates were lower in the ERA group compared to normal transfer timing so I don't think it is worth the money. We had a consult with Professor Tim Childs who essentially said the ERA is useless, I'm surprised there are still doctors who promote it tbh.It sounds as though you have been terribly unlucky, but if you had a successful pregnancy before then I doubt anything you change now will make a difference. It's so hard though not knowing why euploid embryos are not implanting! Wishing you every luck moving forwards xx

[Millbanks in reply to HedgehogMad]

That's really interesting. When I had the original ERA done and we changed the timing for the next transfer - it still didn't work - it took steroids too to complete the chain, so I do wonder how much of an impact it had. But then if we hadn't changed the timing and only used steroids - would it have worked then? Who knows!

I do wonder if we've just been unlucky with these last 2 transfers. I'm definitely leaning towards no more testing and just trying again.

Thank you! Hope you are doing well xx

[LadyM2019]

Hi Millbanks, in short yes repeat ERA can certainly show your window has changed. Sad story warning.. We lost a baby at 24 weeks in 2021. Consultant said IVF with PGTA then ERA as the window of implantation can change following pregnancy. We did all of this, became pregnant but had to terminate due to a neural tube defect, which is not a genetic issue. (Honestly you couldn’t make this sh@t up sometimes). We will be doing another ERA before transferring further embryos as I’ve had another pregnancy. So in my opinion yes, definitely to ERA.. PS initial ERA said transfer after 144 hours progesterone instead of standard 120 hours xx

[Millbanks in reply to LadyM2019]

I'm so sorry to hear your story - how utterly heartbreaking for you.

My original ERA showed I needed 138 hours of progesterone - I do wonder if that has changed (or how it has changed) xx

[Gempuddleduck]

Hi lovely, I have no advice or experience of the tests but I just wanted to check if you’ve been doing acupuncture to help implantation? I really recommend it as an add on, on top of whatever you decide to do next.

I know how difficult it is to get having a sibling out of your head once the thoughts and process has begun. Xx

[Millbanks in reply to Gempuddleduck]

hello! I hope you're doing well and all progressing ok!

Funnily enough I did acupuncture when I first started IVF in 2019 - and I absolutely hated it - I had to force myself to go each time and I'd get sweaty palms. Every time they put a needle in I felt a twang - it was horrid. I kept going because I felt like it must be helping but after 3 failed transfers I decided enough was enough. Do you find it relaxing? I wonder if I should give it another go xx

[Gempuddleduck in reply to Millbanks]

To be honest, I didn’t find it relaxing either! I do believe it helped my blood flow and made my body a warm and cosy place for the embryos though. Might be a load of rubbish but all the times I’ve done it on the lead up to and day of transfer, our emby has stuck. But if you found it stressful, it might not be right for you. Xx