TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Team I look about 12 months pregnant, not four! Don't worry, we will lose it all afterwards.

Thank you so much everyone! I feel slightly better! Lol!

I had my booking in appointment today! And I've been spazzing out about my next scan again!

I just feel that now I've had that, that's it it's all going to go wrong! I still can't believe I'm here and today we talked about birth and breastfeeding! So surreal!!

How is everyone?

Xx

Team we are symptom twins. I feel exactly like you and am counting sleeps until my 16 week check so I can hear the heartbeat again as I keep panicking every day. It's so hard to relax and enjoy this isn't it? But we are going to be fine.

buy the baby heartrate monitor maybe? From 16 weeks on you should be able to listen to the heartbeat whenever fear rises its ugly head? Good luck for both of you!

Sorry for the change of topic, but I had a real shock today. My sister is 41 (I'm nearly 43) and just had a blood test which showed FSH of 56! She has two lovely daughters aged 10 and 8 so having babies isn't the issue, but who wants to be menopausal at 41? She's devastated and has been crying all day. It's just so undermining of one's feelings of femininity and attractiveness. And from a selfish point of view, I'd better get mine checked again. Mine was 9.7 a year ago, but as she said, she was having normal periods until a few months ago and has started having hot sweats in only the last 3 weeks, hence the test. Yet our mum didn't have her last period until 55. I almost feel they are someone else's results. I've always thought of her as the young and fertile one of us.

Brown what a shock for you both. That sounds really difficult. Good luck with your own testing which seems such a sensible thing to do.

Hey team what date is your next scan? Does anyone recommend bothering with a doppler or will it just make me more insane and anxious that usual? I'm thinking the latter.

I haven't got my booking in scan until the 4th March. Iroinically the same date AND TIME as my appointment at St Mary's RMC. I don't want to cancel RMC just in case. shall I call the booking in dept and ask to change it? Plus that booking in app is the 4th march when i would be exactly 12 weeks. Isn't that a bit late to see the mid wife? My 12 week scan is on the 6th March so that sounds ok to me.

Brownstag whats that all about? I agree a real shock and so random after 3 weeks of hot sweats.

brown what difference would it make if you did have a high Fsh? Would you stop TTC? I think unless you are planning ivf, getting tested would only make you try it faster. From what you have said you are not doing ivf??? Would it not panic you?

tum I wouldn't bother with a Doppler at the moment, MW won't even try until 16 weeks, student MW struggled to find mine at 24 week appt even though baby was kicking away. It's going to make you anxious if you can't find a HB.

Baking I was thinking the same, 'what if I can't find the HB?'

So until someone develops the app where I can stick a gel pad to my tummy and watch the baby on ultrasound on my iPhone, I am going to resist gadgets.

Waves to all xxx

Sue, I think what it has done has made me more grateful for my lot, the fact that I have a child already and that there is still the vaguest hope for another. Yes, there's probably no point in finding out my FSH. Although if it was 56, it would be clearly time to give up. I just feel so awful for my sister. Lots of things are starting to fit into place for her: the recent migraines, the PMT-like symptoms. She's also had very heavy periods for the last few years. She hasn't spoken to a doctor yet; she's a nurse and got the test done herself.
Baking and Tum, when I had my DS I didn't know you could get a Doppler so didn't go down that route but I think it would have made me more insane than I was already. Having said that, I would probably get one because I just can't resist any kind of test, even though I know it's not wise.

Hello ladies, sorry to crash your thread, just wondering if I could ask you all a question? I have been lurking occasionallly, but have not been tested for high NK Cells (yet, anyway). I have had 4 early losses in the last 4 years, and after the last one my (useless) NHS consultant prescribed aspirin, prednisolone and progresterone to be taken from bfp, on a "let's see if it might help" basis, as all the tests I have had there are fine. He also advised to pg test early.
The drugs have been knocking about my bathroom cabinet for the last six months, in the meantime we went to an IVF clinic just to get a second opinion on all our tests. Doctor there advised against NK testing and said taking the pred when I get pregnant again is up to me, but he would advise against it.
Anyway, here I am, 10 or 11 dpo, but only 1 day before expected af, and the faintest line I have ever seen on a test (superdrug) showed up today, and now not sure what to do. Botched test? My imagination? OR actually upduffed again? (would be amazing but I always find it hard to believe). Should I start the drugs? Some of them? Wait until tomorrow and test again before I start any drugs? Very confused... :( Husband away. Should of course call clinic, I just find them utterly useless and usually end up in tears when dealing with them. Any advice from you experienced ladies would be very much appreciated.

Hi Mezza.
I'm surprised your consultant prescribed steroids on that basis, seems bonkers not to just send you for testing and see whether they are likely to help you or not. I've discussed the risks of taking them after my NK cells diagnosis and decided the small risks (significant side effects for me, incr risk cleft lip and palate, incr risk of small birthweight baby) are worth taking for the improvement in outcome, but I've not heard of anyone prescribing them "just in case" as they are normally not recommended in pregnancy.
My protocol was to start them from BFP, but was not testing until 14 DPO. Most protocols start steroids from ovulation. I was on progesterone from cd21 and not on aspirin (in fact my consultant said contraindicated unless there's a diagnosed clotting problem) but I did have heparin injections for protective effect on placenta.
I think in your shoes if you've resolved to use the steroids in your next pregnancy I would start them and repeat the test in a few days. If it's still positive then you started as soon as you practically could, if it's a BFN and you were mistaken then you need to wean off the steroids, not just stop. If it's a BFN I'd go get tested for NK cells so you know if it's a factor for you and you are working with information, not "just in case". It costs £350 to be tested by Prof Q in Coventry and you can self refer, but you have to be not pregnant.
Good luck!

I would definitely take them now Mezza, because of the possible bfp. I like those Superdrug tests, btw; they give a clearer stronger line than most other ones I've used. And then worry about tests later if it doesn't work out.

Thank you for getting back to me Bakingtins and Brownstag.
I agree it seems bonkers just to prescribe it, NHS consultant though, so no option to do NK tests there. I was a in bit of a daze at the appointment as was miscarrying at the time, but he didn't really discuss the risks with me at all. And the private consultant we saw advises against them full stop. Torn as I want to do everything I can to keep my next pregnancy going, but obviously don't want uneccesary risks. Have taken aspirin and progesterone for now, holding off on the pred until I have spoken to my husband, and possibly until the next test. Do you recommend any good sources to read up on NK cells and using pred during pregnancy?

Have a look at the Miscarriage Clinic's website. Of course you are talking to people who have sadly got quite blase about chucking all manner of drugs down their necks! What dose of pred do you have? I don't like taking 25mg from ovulation, so I take 10mg, and then 25mg on BFP. Against Mr S's advice of course.
I had my son after taking pred for the first trimester and he has had no problems, now aged 5, but obviously that's one instance and you have to make up your own mind.
Bear in mind that there are those like Prof Q who believe that pred works in recurrent miscarriage in a different way from how Mr S thinks of it, NK cells being a red herring.

Mezzaluna - I am taking pred not been tested for NKCells, but on the basis of a positive ANA test (which is normal to have in 5% Caucasian women anyway!) I think that there are many autoimmune issues that contribute to recurrent early miscarriage. Pred effectively reduces the auto immune response. So I think you need to decide if it is a possible reason for you, and go from there.

I am convinced that it has played a part in some of my miscarriages, alongside waiting to get the good egg. It could just be chance but seems it might be working for me this time.

There is not much research literature out there, it is all very much in the realm of speculative research. Initial research is dealing with too low numbers. I think you just have to go with what feels right to you.

I have heard of other people prescribing it actually too, a couple of IVF clinics, based on a why not approach. We are all a bit used to necking meds here but they way I see it short term use will probably not cause any harm and it's with it! Obviously I am not a doctor, but I personally would take it. I am one of Mr Shehata's patients at the miscarriage clinic and his protocol for very high cells is 25mg from ovulation and 40mg from bfp as well as other medications. On this I was able to have my little boy. Good luck! And feel free to fire away if you have any questions. The worst Pred side effects I've had are hunger and energy bursts as well a bit of a chubby face but temporary and usually only obvious when on the 40mg dose.

Thank you so much ladies. Had gotten myself all in a wobble this morning, and with no one to discuss it with it's all a bit stressful, so thanks for the hand holding! I think because I'm getting so desperate for a pregnancy to work I'm getting to the point where I'm willing to try almost anything. Finally got hold of DH and decided to hold off on the pred for now. The dose I have is 25 mg. So will see tomorrow if there is still a line and take it from there. My sensible side is kicking in and I'm feeling weird about taking drugs that might have side effects on a why-not basis. If I'm not preg I think it might be time to get some more tests done. Have previoulsy looked at The Miscarriage Clinic, but where to go, there or Prof Q?

So sorry to sidetrack your thread btw, really appreciate your advice. x

Mezza hi, I would take the pred now - but then I'm on Mr Shehata's protocol too.

Well ladies, tested again at the weekend and another BFN. Felt a bit down, after having had four follies on this third round of SO - and this BFN was not for want of trying in the BD department either... Sigh. The body is truly a mysterious thing; there's no logic to it. But then as free said somewhere above, three cycles is not actually that long to be ttc, so not giving up hope yet. Managed to fall pregnant twice in the last year, so it should still be possible... Have to believe it will happen!

Mezza sorry, crossed posts! I'm sure your approach of waiting till tomorrow won't hurt...

brown I don't think Prof Q thinks NK cells are a red herring? Her research says they are a marker for deficient steroid production locally in the endometrium, hence she uses lower doses of pred than Dr S, not aiming for immune suppression.

village sorry you have been disappointed

baking thanks, we'll just have to keep on trying! Have always fallen naturally pregnant within three cycles before, except for DD who took five... was hoping that SO would speed things up, but no! I guess if the body isn't ready, it's just not ready. And I'm older now. Hope you are doing well!

team I meant to say how wonderful it is that you're discussing birth and breastfeeding. Yes, it IS all real!

brown really sorry to hear about your sister's worries... would it be worth her getting retested?

tum I'd also avoid a Doppler like the plague. Hope you manage to get your booking appointment moved.