Steroids ...Advice ❤: I am due to have... - Fertility Network UK

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Steroids ...Advice ❤

Littlepeax profile image
36 Replies

I am due to have my FET soon and wanted to try steroids after reading SO MANY positive stories on here. I've seen people say it was the only thing that made a difference after so many failing. My clinic however are not keen to pursue this as they say there is not enough 'evidence' with regards to NK cells/steroids.

I have endometriosis and awful sinus issues which have both been linked with auto immune issues. I have never been pregnant after trying for 7 years in March (straight after we got married).

I really want to take a low dose steroid to improve my chances and make me feel better. No harm right? I have no faith in my body and any help will make me feel better. I am going to try and get a prescription to put me on them and speak to my GP too. I literally want to do all I can as this might be my last try with these little embies. I'm a little fixated on steroids and basically anything that will improve my chances 🙈 any advice would be so helpful xxx ❤

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Littlepeax
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36 Replies
Sunshine50134 profile image
Sunshine50134

Hello, like you I went down a rabbit hole of research into intralipids and steroids after reading so many amazing stories on here! I convinced myself it was the reason behind my infertility. However, I had my immunity bloods done and a biopsy for NK cells during a hysteroscopy but they came back within the normal range 🤷‍♀️ I still pushed for steroids and intralipids for my upcoming FET, my Dr was happy to do so (eventually) even though he's not 100% convinced due to lack of evidence. I just wanted to throw everything at this round as it can't harm right?!

I feel content knowing i've followed my gut even though I've not had my FET yet.

Best of luck to you xx

Littlepeax profile image
Littlepeax in reply toSunshine50134

Thank you so much ❤ I feel exactly the same. Do you need steroids and intralipids together? Or just steroids lol 🙈 and do you know what dose you are getting? When's your FET 🥰

Sunshine50134 profile image
Sunshine50134 in reply toLittlepeax

So much information isn't there!?! 😅No I don't think you necessarily need them together. I have just pressed for everything at this point!! After my results came back as normal my Dr added intralipids with no hesitation but I pushed for steroids a few weeks later and was prescribed 20mg as standard. I was expecting a lower dose to be honest but its my clinic's standard protocol. FET due end of next week all being well 🤞what about you? xxx

Littlepeax profile image
Littlepeax in reply toSunshine50134

Thank you so helpful ❤ crazy how clinics differ so much. I think my FET will be beginning of March. Not long for you 🥰 it's exciting isn't it xxx hope all goes well for you

Purple276 profile image
Purple276

Hey Littlepeax,

I'm actually in the opposite situation and thinking about maybe not using steroids!

After immune/level 1 tests my clinic prescribed me Prednisone for my FET last year but still got a BFN. I then fell pregnant naturally in Oct when wasn't taking them but had an early miscarriage.

I'm convinced it's my egg quality (low egg count and almost 40) so am starting a donor egg round shortly and cant decide if to take the steroids or not. I've read so many posts, articles and HFEA and feel potentially they could cause harm through reducing your immune system not great with Covid around but the clinic recommends them and with this our last go before accept a life being childless why would I not try everything I can? Honestly total minefield and hate this part of TTC...along with many many other parts!

It's got to be a personal choice and if you think you'd feel reassured in the future that you tried everything then push your clinic to write a private prescription and add to your protocol. Your body, your wallet, your choice ( think they were about £20 so not super expensive)

Have you tried low dose aspirin? That's something else recommended with limited evidence but in my ' worth a go ' box.

Good luck with this and your next round xx

Littlepeax profile image
Littlepeax in reply toPurple276

Thanks so much Purple .. Nice to read something different. Its so hard isn't it. Yes my Dr recommended baby aspirin so I'm on that again now. My last try resulted in a chemical. When's your transfer? Huge good luck with you DE 🥰❤ that's exciting and something I've also looked into if this doesn't work out xxx

Purple276 profile image
Purple276 in reply toLittlepeax

I think I need answers and this journey has no certainties which makes it so hard to know the right thing to do.

So sorry about your chemical. Big hugs. When are you hoping to start? We might start next week on CD1 if my husband doesn't catch covid off me 🤦🏻‍♀️ or in March. Moving to DE is the right step for us so we can so one final go with higher chance of success. Hopefully this is the one for you 😊 xx

Littlepeax profile image
Littlepeax in reply toPurple276

Ahh you have covid? 😒 luckily you are not on them now 😥 hope you're feeling ok. Did you have high NK cells? Sorry I dont know what CD1 is? Thanks ❤ same to you too xxx

Purple276 profile image
Purple276 in reply toLittlepeax

Its Cycle Day 1 😊

Seren0119 profile image
Seren0119

It’s very hard to know what works, but I tried steroids (25mg) after three failed PGS embryos and it worked for me - could have been the steroids, could have been the embryo. No way of knowing…

If it was me, I would try it.

I doubt your GP would give you them - I would go to specific clinic for immunes (like one in Epsom) so you have their full protocol. A GP doesn’t have this experience x

Littlepeax profile image
Littlepeax in reply toSeren0119

Thanks so much. Yeah I doubt my GP would lol she'll probably tell me where to go 🙈 desperate times .. ❤ thanks ill look at Epsom as I'm in Surrey ! X

XOXO13 profile image
XOXO13

Hello,

I was someone that had my immunes tested after three unsuccessful transfers and two miscarriages. I did so because I ticked a few boxes for someone who may have elevated NK cells; recurrent miscarriage, recurrent implantation failure, under 35, family history of auto-immune issues to name a few.

Because we always got very good quality blastocysts, and I was 30 when my eggs were collected, I knew it was unlikely that all of my eggs were of poor quality and all other tests came back normal or with something that was treatable (such as with blood thinners).

For me, both my TG antibodies and specific NK cells (CD56%, CD19+ CD5+ cells (can’t tell you what they mean)) came back heavily elevated and I was treated with dexamethasone and intrapilids (I had 1x intrapilids before transfer, and 3x after I got my BFP).

Whilst I feel this is what helped me get my BFP, I do agree with the comment above that I don’t believe it was just the steroids that helped. I think it was a number of things incl., closed monitoring of how I was responding to stims, starting blood thinners before transfer (vs on day off), increasing my dose of progesterone (despite me not having a progesterone issue previously). Whilst the science is thin and whilst I fully support and would recommend testing of NK cells, I don’t think it always guarantees a BFP for absolutely everyone.

That said and as I say above, I am so glad I explored it and if you’ve exhausted all other tests then I do think it’s a good idea to have your immunes tested because it may very well be the thing that helps you.

Sending you lots of luck 🍀 xxx

Littlepeax profile image
Littlepeax in reply toXOXO13

Thank you so much ❤ all very helpful. Yes my progesterone has been increased as first time round I bled very early after transfer. It is so difficult knowing what works isn't it. Like you said maybe a combination of things 🥴 my mind is overdrive lol xxx

XOXO13 profile image
XOXO13 in reply toLittlepeax

I pushed to do everything I could… it was important to me and my husband that we did try new tests. There were some that I didn’t necessarily think were worth it for me such as an ERA, but the ones I did think were worth a go, I explored them. You just have to go with your gut. Hoping this next transfer is your one 🤞🏻🍀💛 xx

Littlepeax profile image
Littlepeax in reply toXOXO13

Exactly always go with your gut or I'll end up regretting ❤ thank you xxx hope you're feeling good not long for you 🥰

XOXO13 profile image
XOXO13 in reply toLittlepeax

Thank you 🙂 3 weeks to go… 🌈 🍀 xx

Littlepeax profile image
Littlepeax in reply toXOXO13

🥰 eeeekkk how lovely. Hope you're feeling good. Hope all goes well xxx

Millbanks profile image
Millbanks

Hey lovely, as you know I am a big advocate of steroids!

After 5 failed FETs (with extra progesterone, new ERA timing, varying grades of embryo, blood thinners and aspirin) number 6 with steroids was our first and only BFP.

We did PGS test but out of 8, 6 came back normal so I don't think that was our previous issue (unless we were incredibly unlucky)

So for me, the steroids were the final key to our success. I was on 20mg prednisolone and had 3 x 500ml intralipid infusions (1 the day before transfer, 1 at 6 weeks and 1 at 8 weeks)

I wasn't worried about a compromised immune system as I am lucky enough to still have the option of working from home, but I know this can be an issue for some clinics - essentially they said it was my choice, as the HFEA had lifted the ban on immune protocols.

xxx

❤️

Littlepeax profile image
Littlepeax in reply toMillbanks

Thanks so much Millbanks 🤗 I'm going to speak to my consultant. I doubt she will give me a prescription and if that's the case I will only transfer 1 embryo I think as I don't want to waste any. That way if it fails again I will defo push for this and still have a good embryo to transfer afterwards. That's my plan lol 😵‍💫 hope you and bump are feeling good ❤🥰

Millbanks profile image
Millbanks in reply toLittlepeax

I would make it clear that you are happy to take the (low) risk and ultimately it's your decision :)Sounds like a good plan my lovely!

We're good thank you ❤️ 7 weeks to go and I cannot believe it.... xxx

Littlepeax profile image
Littlepeax in reply toMillbanks

Yes defo 🥰 7 weeks 😲 aww very excited for you millbanks. Hope you're feeling good and taking it easyxxx

Shireen1 profile image
Shireen1

Hi Littlepeax! Just wanted to share my experience. I had 4 unsuccessful transfer with what they called ‘perfect’ looking embryos. They were also PGS tested. On my last transfer my doctor consulted with colleagues and advised 10 mg prednisone to start 5 days before ET. It was a successful transfer. I cannot claim it was the steroids that made this difference as I used few other things. After my beta was positive, my doctor advised to stop steroids. I continued taking them until 10 weeks (weaning to 5 and 2,5 mg from 8 weeks). I do not suggest that we should not listen to a medical advice. Steroids are potent medicine and not harmless. This is especially true with covid around. They can also negatively influence your glucose and calcium levels. Some studies also show they should not be taken after 11 weeks as they can have effect on baby’s developing pituitary gland. I read all this and still decided to go ahead and to continue as I just didn’t feel safe stopping them when my doctor told me to do so. I am not a doctor so not advising pro or contra steroids, just sharing my story in case it helps with your decision. When it comes to reported side effects I personally didn’t have issues with sleeping, they (unfortunately) did not increase my appetite, I did not gain extra weight (I lost 1 kg due to nausea), or moon face. The only thing I did notice is that my facial hair got a bit more prominent but it’s getting better now :) Good luck with your next transfer!

Littlepeax profile image
Littlepeax in reply toShireen1

Thank you so much for this useful information ❤ and huge congratulations 🥰 did you have both steroids and intralipids? Xxx

Shireen1 profile image
Shireen1

Thank you. Only steroids and aspirin.

Marlie_Moo profile image
Marlie_Moo

So I had 4 failed rounds and then they put me on steroids and it worked, I'm currently 20weeks pregnant. So I would highly recommend them.

Littlepeax profile image
Littlepeax in reply toMarlie_Moo

Amazing congratulations ❤ thanks so much for your reply was it just steroids and what dose? Did they test you first for nk cells or just prescribed them anyway? Xx

Marlie_Moo profile image
Marlie_Moo in reply toLittlepeax

Thank you very much. No they didn't test me they just prescribed them. I started on 20mg a day started a day before transfer. Then at 8 weeks I had to start weaning myself off of them.

Goldenegg1 profile image
Goldenegg1

My consultant suggested it to be fair but reminded me he couldn’t prescribe it for obvious reasons.. just like all treatments he said no guarantees. I didn’t have the confidence to go for it. But kind of wished I had sourced it and tried it.

Littlepeax profile image
Littlepeax in reply toGoldenegg1

Ahh ok. Where are you now on your journey? Thanks for your message ❤

Eternalwarrior profile image
Eternalwarrior

Hello lovely,After a long journey trying to conceive, IVF, implantation failure and recurrent miscarriages we decided to try 'everything' last time. We had decided we wouldn't do IVF with our own eggs again, so this would be our last chance. I was prescribed steroids (30 mg prednisone), heparin, hydroxychloroquine, aspirin and extra progesterone and it worked. I am currently 29 weeks pregnant. I am not sure whether it was just the steroids or a combination of things. We also had many tests done, including the EMMA/ERA/ALICE tests, which I am so glad I did, as I had some issues that needed to be addressed and was on antibiotics and probiotics before the transfer.

I didn't have the NK cells testing, but they prescribed me steroids based on other autoimmune blood tests. I have very raised ANAs and have several autoimmune conditions (i.e.: endometriosis, Graves' disease, autoimmune polyarthralgia). My doctor told me that raised ANAs are linked with implantation failure and miscarriages. My GP ordered these blood tests for me when I requested them.

If this transfer hadn't worked, we would have tried intralipids next time.

I found that we know ourselves better than anybody else, so I would say follow your gut instinct. I wish you all the very best! xx

Littlepeax profile image
Littlepeax in reply toEternalwarrior

Thanks so much for your reply. ❤ so glad to hear it's worked for you huge congratulations 🥰 my issue is I'm paying privately through the NHS and they are not keen on anything like this. I have just spoken to a private clinic to see if I can get a private prescription and the cost to see the consultant and have a few blood tests was £3-4k 😥 I nearly fell off my chair. I've already been tested and my consultant said looks OK even though they dont understand the results 🙈. I just want a low dose steroid to reassure me. It seems impossible x

Eternalwarrior profile image
Eternalwarrior in reply toLittlepeax

Hello lovely,I am so sorry :( and that is a crazy amount of money!

I have also been paying for IVF privately, as I don't meet the NHS requirements for fertility treatment in my area, but I insisted so much that my GP (I actually changed GPs too!) eventually agreed to do some tests on the NHS (and repeat some blood tests I had had privately, as things can change over time). Because they came back altered, she then referred me to an NHS rheumatologist, who can prescribe the steroids.

Do you have a copy of the blood tests you had and your consultant said it was OK? Would it be possible for you to pay for a private consultation with another specialist (maybe ask for different quotes?) without having to take all the tests again? Would that be possible and cheaper?

I am sorry you are having such a hard time xx

Littlepeax profile image
Littlepeax in reply toEternalwarrior

Thanks so much Ethernalwarrior ❣️ so helpful. I think I've found someone who can help 🙏 going to try a low dose of 10mg I think 😃❤ yay

Eternalwarrior profile image
Eternalwarrior in reply toLittlepeax

I am so glad to hear that you found someone who can help! My fingers and toes are crossed for you. Wishing you all the best, lovely, and please keep us posted ❤️ xxx

Littlepeax profile image
Littlepeax in reply toEternalwarrior

❤ thanks so much. Will do x

Littlepeax profile image
Littlepeax in reply toEternalwarrior

P.s endometriosis is awful 😖 I know the feeling xxx

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