Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

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 immune issues, 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.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Crystal2020 thanks for the info. The ROI seems to be slightly better even that NI - there are literally no facilities here whatsoever. I am not far from the border and contemplated after the last loss travelling (Apr 2020) but of course COVID had everywhere closed.
Thank you for the good luck, much appreciated.

@HarrietM87 thank you for the warm welcome also. Congratulations on your pregnancy - every week is a milestone. Thankfully I have it yes, but only started from bfp as advised. Cylogest from ovulation (clomid induced) and now on many many meds. I do wonder how I managed a beautiful dd without any pred, only cylogest & baby aspirin but I will never know.

I have never been tested for any other automimmune conditions - definitely worth getting them done though - thank you. Can I ask what dose on the pred & thyroxine that you take? I take 25mg of pred & 25/50mg of the thyroxine alternating days.

@NICK7nick7 thank you for the welcome. All the women here seem so lovely. Thank you for the congratulations. I still cant take it in as you know yourself. 6 miscarriages - what a woman to be still standing and pursuing this. I take my hat off to all women in this situation!

Were you ever tested for NK cells?

Hi @recurrentmiscarrier. Thank you for sharing - it sounds like you have been through a lot.

I'm really sorry you have to be your own advocate and doctor. Sadly, as well as losses, that's another thing these amazing ladies on here share - a wealth of knowledge and tenacity about reproductive immunology. I'm also annoyed on your behalf that you wont be offered support because your miscarriages weren't in a row. Absolutely infuriating.

Another thing about the hydroxy - it takes a while to be fully in your blood stream - 6 to 8 weeks according to Dr S so it might not be particularly helpful if you were to start it now but could be worth asking? Its used to treat people with Lupus and I was told by a rheumatologist it is very safe to take in pregnancy. It has been recommended to those of us with High/Complex NK cells as it 'coats' the immune cells and makes them less reactive apparently. It's also why those of us with late miscarriages as well as early are pointed in that direction without blood tests.

Good luck in your pregnancy! Katy xx

@recurrentmiscarrier I was diagnosed with hashimotos at 16 so have been on a high dose of thyroxine since then. I’m normally on 150mcg but it has increased to 200mcg in this pregnancy.

If youre on a low dose like that it sounds like you have been tested and perhaps have subclinical hypothyroidism rather than full blown hashimotos?

I was on 25mg of pred for the first trimester my first (successful) pregnancy. This one coincided with covid so I reduced from 25 to 20 to 15 up to 10 weeks and then weaned off it completely.

I always lost mine at pre 6 weeks/pre heartbeat so I think that’s why pred from ovulation was crucial for me. Other people seem to be fine taking it from bfp.

This article could explain why you had a healthy daughter without treatment! www.newscientist.com/article/2121182-timing-when-you-get-pregnant-could-prevent-a-miscarriage/

@ktAgs thank you for the reply. Its such a relief to have other knowledgeable women to speak to. As many on here I have to learn what I know from experience and also trial & error, with very little support (my DH tries his best but 'we'll just keep going' is his motto)

I have been through a lot unfort yes, but the dd i have is my only strength to keep persevering. The pred was a fight to get, I highly doubt I will get the hydroxy also, although will ask.

Thank you for the good luck - I wont be scanned until 14th July - which feels like 498540103932472 days away!

Are you pregnant or have you success with either meds?

@HarrietM87 that article is so interesting. I have a 5 year old and then went on to have 6 miscarriages and am due to start trying again after the 8 weeks of hydroxy. Makes a lot of sense with some of the stories I’ve heard from others who have have recurrent miscarriages, change nothing and then have a successful pregnancy. It’s also a little worrying though if it’s down to timing and how to know when to time it right!

@recurrentmiscarriage yes I had the NK cells via blood test with Dr S. They were borderline-high but Dr S has put me on the complex plan now despite this because of my history of miscarriages with Prednisolone and having had early and late miscarriages. Really hope it works as can’t even face the thought of another miscarriage, although I did say that last time and had told myself no more!! It’s hard to give up on though isn’t it, especially when there is still hope in terms of something new to try.

@NICK7nick7 it’s also really common for NK cell issues to be triggered by a pregnancy, (especially but not always if that pregnancy is a boy apparently), so it could be that you were fine before you had your child. Several
of the people I met on this thread first time round had had straightforward conceptions/pregnancies with their first child and then struggled second time round.

I had a termination at 9 weeks when I was 22 (which I do not regret) and that one clearly wasn’t affected by NK issues either, so I’ve sometimes wondered if that triggered my subsequent problems.

@HarrietM87
Yes sorry I do have hypothyroidism. I was tested after my 3rd miscarriage and prescribed the thyroxine which stabilised my TSH levels.

I was on 25mg of pred for the first trimester my first (successful) pregnancy. This one coincided with covid so I reduced from 25 to 20 to 15 up to 10 weeks and then weaned off it completely.

Definitely an interesting article - as well as very scary. Never knowing when the time is right could potentially lead to more devastation.

I am really hoping the pred 25mg helps me this time round. All I can do is try and stay busy but even I know I wont stay off Dr Google!

@NICK7nick7 I 100% know what you mean. After every loss ive said not again, but the desire to keep going takes over once again and you find yourself saying "but ill be taking _ medication this time round, it might be different". I also know in my heart I'll never stop until I at least have a sibling for my daughter. I never thought it would be this difficult!

@HarrietM87 thanks for sharing that article, it’s really interesting! ❤️

Hi everyone I’ve just got back from seeing Dr S and has confirmed I also have NK cells,
I’ve been prescribed Hydroxy, does any one have any advice on when to start taking them? (Day in your cycle) @NICK7nick7 I see you have taken them 8 weeks prior to trying again, (he didn’t mention that to me)
I’ve been given a 2 day load and then back to normal dose thereafter.

@LRL12 Does it feel good to have a possible reason and a plan? That’s interesting, maybe I’d better check with him. It states in my plan that they emailed me to take it for 8 weeks as a loading dose but it could be an error or I’ve read it wrong or maybe we are just in different plans? Mine is the complex one. I haven’t started them yet as I’ve just got the prescription through for them. I need to also start my other meds again (prenatal, vitamin d, etc.) so will have to wait on those to get back into my system anyway before I started trying again.

Yes it really does, feel very relieved to have some answers and a plan to work towards,
Yes I’m sure we’re on very different plans I just saw you say you needed to take for 8 weeks Prior and thought I may have misheard him, I’ll check with him as well just to be sure was a lot to take in today so I’ll go over everything again tomorrow and double check, thank you for your reply xx

I think some people were told to do the loading dose and some were not. I wasn't told to but then my plan said to do the loading dose (but i got that after I'd been on it for a couple of weeks). It's unclear why so worth checking with the clinic @NICK7nick7 and @lrl12.

With when you start it, i think work it back 8 weeks from your ovulation in two months' time ish i guess. I was naughty and took it knowing I would ovulate having been on it for 5.5 weeks but wanted to get cracking so to speak. Haven't got my BFP this month as AF turned up bang on time today. So painful as well. Xx

@KtAgs I’m sorry AF turned up 😢 fingers crossed next month is your month!

@LRL12 like @NICK7nick7 said, I had to be on the hydroxy for 8 weeks before I could try again. However this was July/August last year and I know Dr S is swapping people across from the Pred to hydroxy due to covid so maybe his stance has changed on it? Also this was in addition to the Pred so maybe that affects whether you do the loading dose or 8 week lead in 🤷🏻‍♀️ Either way it doesn’t hurt to clarify with the nurses ☺️ Good luck! X

@recurrentmiscarrier thank you we really are warriors! It's been a painful few weeks but sadly each time I feel like I know the drill once the mc is confirmed. I've had some really dark days and some days I've been ok'ish. My bestie is preg and having a tough time with hg and she's in a very lonely place right now as has a crap OH too (I don't actually understand how she's pregnant), I haven't had the heart to tell her what I've been through as I don't want her to stop talking to me although some days like this evening it was difficult.
You will get lots of useful info from the ladies on here and I really hope the pred works for you 🙏🏽

@KtAgs im sorry the witch has turned up. It's crazy isn't it as every month we pray she doesn't and right now that's all I want so I know things are getting back to normal.

I emailed the clinic on Monday to update them that I'd had the MVA, and asked what would be the next stage for me, appt with Dr S? Do they suggest a break? Not had a reply 😑 it's pissed me off if I'm honest.

I've looked at my nk test results too, my nk cells were below 200 and only aggressive in pregnancy - anyone else had that too? Also just out of curiosity why doesn't Dr S test NK cells at bfp or after? Wouldn't this give more of an accurate result?

@KtAgs sorry AF has turned up!
Thank you for your advice, unfortunately I haven’t had my AF this month as only last MC in May so think my body’s a bit all over the place so I need to wait for things to settle and work out my ovulation date before I start the hydroxy.

@Wishing5tar I’ll definitely confirm with the nurses today ☺️

@HoldingOn2Hope I also tested for aggressive NK cells during pregnancy.
My NK cells were 195, not sure why he doesn’t test at BFP 🤷🏻‍♀️

@HoldingOn2Hope yes I had average numbers of NK cells but they were very aggressive (not sure whether specifically in pregnancy or just generally).

Sorry the clinic has been crap. You’ve been an absolute warrior.

Yes @HoldingOn2Hope. I echo what @harrietm87 has said. That's really shit treatment.

This might sound like a dumb question but which of the blood results shows the activity of the NK cells when pregnant? I can't remember if Dr S pointed them our properly to me but I definitely don't know which ones they were. Xx

@KtAgs
It’s on the TH1:TH2 Cytokine Ratio
It’s the TNF-Alpha test should be between (13.2 - 31) x

I know I have to wait for AF to turn up but I'd just like to know what's next? Especially if my GP does get me a priority slot for Icsi/ivf as I've been given the approval by my nhs consultant back in 2018 - I'd just like to have a plan ahead. I know most likely DR S will suggest hydroxy and maybe the clinic know these genetic results will take a good few weeks so would rather wait for them. Either way I'd have liked a reply 🙄

Have any of you had the testing done after a mc and how long did the results take. My last one was only 2-3 week but it was inconclusive so that's probably why it came back quick.

@KtAgs he just told me that they are very aggressive in pregnancy and can't be treated with steroids alone and need intralipids. From what I've read though intralipids are more effective in these cases from before ovulation.

Hi ladies, sorry to interrupt.. wanted some advice. I'm on my 5th SO programme and have just been for a follicle scan with Dr S
I have been getting 2-3 follicles but this time one at 17mm and 1 at 13mm and the trigger is tomorrow. Anyone had any luck with this size? He said most women are pregnant between 4-6 cycles?? I'm on Gonal F x

Hey @CATALYST2019 I've been looking at this lately from an SO perspective and your follicles grow around 2mm per day, if your bigger follicle today was 17 and you don't trigger until tomorrow that would be 19... then the trigger shot doesn't make you ovulate for another 36 hours making you 21+mm which is absolutely spot on! He said 20-25 is the ideal - so good luck!!! Xx

Sorry @CATALYST2019 typo there typing too quick ideal size is 18-25 not 20-25 (so the smaller one should stand a chance too!) x

@hrtbrk2 thanks for your response. I hope they keep growing.i have accupuncture tomorrow so hoping that will give them a boost too. Thanks for responding xx