Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

Thanks @opalescentblue that's a really great idea. Glad you're finally feeling better.

Congrats @mezgaski that's great news!

Hi @Freelancegirl, thank you so much for setting this up all those years ago. Don't know what I would have done without it. And it's great to hear that Dr S got you the family you wanted, sometimes it can feel so far out of reach.

Hi @hrtbrk2 Good luck for test day. I'm still taking 20mg but will reduce to 15 if my scan looks okay 😬

Lots of love to all x

Can I ask you ladies a question - on Dr S protocol he says test after 10 days on pred etc but I've never tested positive that early for pregnancy ever, that would be testing on day 25 which seems so early even for a first response - I'd normally need to wait to day 28 as a minimum, do any of you feel this is really early to test because he says if negative to stop taking and start next cycle but surely you could just need to give it a few days? X

Yes, it's definitely early @hrtbrk2 but he does it that way to stop the steroids messing up your cycle.

Just stop the drugs on day 10, test day 11 (so 10dpo) and keep testing until your period comes. Then if you get a positive, start back on the meds. Lots of people on here, myself included, have stopped only to restart a few days later after getting a positive.

Hope this helps. X

Lovely to have some new people on here. It's reassuring as although I have not started a plan yet (appointment is on Monday with Dr S over the phone), you get more hope hearing about people pregnant on the plan. I appreciate it must be all the more worrying at the moment but for me being pregnant feels like a lovely, unobtainable dream (which I know is silly because PAL is HARD at the best of times).

I've been having a couple of down days recently - like we're never going to get our baby. And we've just had hubby's Comet test back and it wasn't great - 36% average, 31% low and 7% high. Is that really bad? I can't tell. But of course, I'm now manically googling and going back over old pred threads to find out. Anyone know? I wasn't going to post here but I had such bad nightmares last night - about babies getting away from me or me losing them that it's clear I'm not handling the news particularly well. DH is not over the moon either and he's usually so chipper. Feeling sad. Sorry for being a downer :(

Take care everyone.

Katy x

Hi @KtAgs, I know exactly how you feel. My husband's was 34% with 6% really bad last October. We got the other tests done to rule out infections and they found he had a 3.5mm varicocele. He got that sorted with an operation just last month and hasn't been retested yet but this current pregnancy was conceived just days before his surgery so it was still the old stuff.

Anyway - most of the time surgery isn't necessary. Healthy diet, exercise, no booze and impryl will bring those bad boys down. I asked Dr S how bad our results were and he said 'bad but by no means the worst he's seen' and said lifestyle changes would have it sorted in no time.

Just drop me a message if you want any more info. I really tortured myself over this too but it really is okay and totally fixable. You don't even need to put off trying x

Hi everyone. @Freelancegirl thank you so much for starting the thread and checking in! So nice to hear of positive stories. I also had my first child with Mr S and if anything I’ve found the experience of being pregnant the second time round on his plan even more stressful and horrible. I’m really glad it worked for you twice!

@hrtbrk2 I second what @FrannyAnny82 said - it’s better to stop the steroids and restart than keep taking them unnecessarily. I’ve always had positive tests at 10dpo anyway so you never know.

@KtAgs I don’t have any experience with sperm testing but hopefully you can talk it through next week. I’m sorry you’ve been feeling down - being in lockdown doesn’t help when you want to get away from your own thoughts!

I’ve had a horrible couple of days because after a shocking weekend of all day nausea, I’ve felt pretty much ok yesterday and today. I reduced my pred dose on Saturday so have convinced myself that it’s too low now to protect the baby and I’ve had another mmc. Feeling totally miserable about it - have never wished to feel sick so badly! My scan is on Thursday so not long to wait but also dreading it now.

Yes @Freelancegirl I genuinely think reading back through this thread helped me get through my previous miscarriages, it's great to hear that you've had two children from the treatment, that's so awesome.

@KtAgs sorry you're feeling down, my other halfs Comet test wasn't that great either and I'm having a bit of hard time imposing a healthy regime, but I'm just trying to make vegetables with everything and at least this situation means that we can't really go out which will hopefully help.

@HarrietM87 @FrannyAnny82 good luck with your scans this week, keeping my fingers crossed, I'm sure there must be a thing where the pred builds up in the system. @HarrietM87 I hope you are managing to distract yourself a bit.

@Eeviee I hope you are ok, did you have your scan?

Myself and my other half have had about a 1,000 conversations (he was not keen) but finally managed to convince him and bit the bullet with the pred from ovulation as well as the cyclogest, although I think I was a day or two late so a bit worried about that? Has anyone had it where they haven't done it from the day of? We've managed to get an Ocado order enough for 1.5 weeks so am literally not leaving the house until test day. Not sure whether it's the right decision, but just just kept thinking in the back of mind that I've never actually followed the plan properly.

@hrtbrk2 welcome, am joining you in the 2ww now, when is your test day?

hi to everyone else, hope you're ok and staying safe x

Thanks @Countrygirl220. Yesterday’s scan confirmed no embryo. I’ve been in hospital
today had to take the misoprostol but first round hasn’t worked so I’m staying overnight and may have d&c tomorrow. I’ve been advised not to try again until
genetics results are back. 😢

Oh @Eeviee I'm so, so sorry. It's so unfair. Sending big hugs and I hope you manage to get out of there and home as swiftly as possible. xxx

Really sorry to hear that @Eeviee. For having to go through what you've been through and being told to wait TTC. It sucks. Really hope its a quick as possible for you in hospital. Thinking of you and just know we're all here. ❤

Thanks @Countrygirl220. We eat pretty healthily but hoping a chat with Mr S on Monday will make it a bit clearer what's expected of him. I think the hardest thing for my husband is we know lots of men with worse habits whose partners carry fine. Anyway, we'll persevere. Good luck to you and @hrtbrk2 in the 2ww.

And good luck to @HarrietM87 and @FrannyAnny82 waiting for scans and coping with the titration down and all the worry. So hard but anyone on this thread is a warrior so know you can do it! 🙌🏽💪🏽

Sending love, Katy x

I am so sorry @Eeviee ❤️

Sorry to hear this @Eeviee. Thinking of you... ♥️

@Eeviee I’m so sorry. It’s totally rubbish & unfair xx

Good luck to those with scans today xx @HarrietM87 my symptoms came & went a bit if that helps. Xx

@eeviee I'm so sorry :( our thought are with you always.

@Eeviee So sorry... it's so utterly sh*t xxx

@Eeviee I’m so so sorry. How long do they think the testing will take to come back? Hope it goes well today and you take the time you need to recover.

Good luck today @FrannyAnny82 - will be thinking of you later.

Hey all - thanks so much for all your tips on the pred questions answered, that's so helpful and makes total sense. I will therefore test on Sunday and then see how I go for a few days after that before testing again.

Sorry I'm not replying to each of you individually I'm just getting to know your names!

I've read through a few pages of this feed and so much going on for you all - it's just such a stressful time (like any of us need anything else to consider at the moment!) it just seems so unfair.

Eevie I'm so sorry to hear your news - life is cruel.

Can I just ask - as this thread is quite long it would be great to just get a brief breakdown on your stories? I'll start with mine:

36 years old, trying 6 years in October
Losses x 5: MC 6 weeks Oct 2015 / mc 16 weeks (Georgie) born due to proms June 2017 / chemical dec 2017 / mc 7 weeks April 2018- then stopped for a bit to go thru dr quenbys testing before another bfp July 2019, on pred but from
Bfp - mmc 8 wks August 19 and then on to testing with dr S and now on first round of complex treatment plan with him. On hydroxy and pred + vits, aspirin and cyclogest (although half dose now of hydroxy and 15mg of pred)

That's me - would love to hear your stories (if you can be bothered to tell them totally understand if you'd rather not of course!!)

Xx

Hi @hrtbrk2 sorry to hear about all your losses - it’s been a long haul hasn’t it. Fingers crossed Mr S’s plan will sort you out.

I’m 33. I’ve had hashimotos since I was 16. I had 3 losses in 6 months in 2017 at age 30, all pre 6 weeks (2 spontaneous, 1 mmc). Then I saw Mr S and had my son on his plan, born April 2018. Accidental pregnancy in 2019 ended in another mmc as I started the pred only after bfp. Now pregnant again (8+1) though not feeling at all hopeful about it as I’ve reduced the pred dose and have very aggressive NK cells. On my way to my scan now and feeling absolutely sick with nerves.

Best wishes for your scan @HarrietM87 ❤️

@hrtbrk2 I'm halfway through nk cells testing with Professor Quenby. I had my first biopsy which showed normal results (4.26). My second biopsy was cancelled on the day, so in limbo at the moment. I'm on levothyroxine for slightly raised thyroid.
I'm 36, been ttc since November 2017. I have had 2 MMCs and 1 chemical pregnancy, but all in the last 12 months, no pregnancies for the first 16 months, so we're also on the IVF pathway, which again is on hold.
I'm struggling with my results - if I don't have raised nk cells then I still have no answers...

@Eeviee I'm so sorry to hear this, it's so heart wrenching. I hope you are as well as you can be and are able to come home very soon. And I hope they are nice and swift with your results, from memory is it about 3 weeks? Thinking of you and sending a big virtual hug x

@KtAgs thank you. I know exactly what you mean the amount of people who just breeze it and live on a diet of McDonalds and 7 pints a night. I hope your meeting with Dr S goes well, I'd be really interested to hear his thoughts, when he delivered the news of our test results to us, I think we were a bit shocked and probably didn't ask all the questions we should have. Hope you guys are feeling a bit brighter today, it'll be your turn soon I'm sure. As you say just have to keep going x

And good luck to everyone with scans today, keeping my fingers crossed for brilliant news!x

Thanks @countrygirl220 ❤. The nurses have emailed my results so will read them in a sec!

Good idea for the bios @hrtbrk2 but sorry to see all your losses. 😔

I'm 34, been trying since September 2018. First pregnancy Oct 2018, missed late miscarriage at 19w3d. No definite cause found, chromosomal normal but asymmetric IUGR from post mortem. Recommendations for aspirin and progesterone from BFP and clexane from hb seen on scan.

Second pregnancy June 2019, missed miscarriage at 11w3. Abnormal chromosome on 22. Karyotype testing recommended for both me and hubby. No balanced translocation for either of us.
Third pregnancy November 2019, loss at 8w6, Triploidy.

Husbands Comet test wasn't brilliant. Waiting results from my immunology profile and appointment with Mr S on Monday 6th.

After reading everyone's bios so far, sending love to everyone again and to those who have yet to post or if you choose not to as you aren't there yet and are lurking.

Katy xxx

@hrbrk2 39 and 5 losses too, in the last 12 months. First was MMC 9.5 weeks - very painful but natural miscarriage, second a chemical, third in and out of the EPU from BFP saw slow heartbeat at 6.2 but gone two days later & had D&C, fourth sac but no embryo at 7wks had D&C and last month spontaneous miscarriage - wasn't sure of dates but nothing there at 5 and a bit ish, and started bleeding a few days later. Saw Dr. S after the third but we never really followed the plan properly, took the pred, cyclogest but all after BFP as I was a bit scared. Also was just investigating IVF with PGS testing, wanted to start but clinic has shut down whilst this is going on, which is why I've bitten the bullet this month and done the whole Dr S plan properly.

I had my scan and it was all fine - cried with relief. Actually measuring a few days ahead now. I told them I wanted to stay on 20mg of pred and they said that was fine and made me sign a waiver. Going home now for a long shower and going to hope I haven’t picked up Coronavirus on my first trip out of the house in 2.5 weeks!

@hrtbrk2 I'm 37 and we started trying in October 2018. I had an early but incredibly painful chemical Jan 2019, a miscarriage at 6+4 in June, another at 6 weeks in September then a chemical in January before this pregnancy which is 8+1. My husband's comet score wasn't great and I have highly active killer cells. Had my scan today and so far so good but obviously still terrified. Thanks so much for all your good luck messages ❤️ x