Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable 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

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@VenusStarr I tested on the day my period was due, which I was sure was a reliable result! Might test again tomorrow, although I ran out of pg tests. 😂 so far I must have spent a fortune in them.

@VenusStarr and @LookingforAnswers86 if it helps, I’m also on the complex plan (high 3% something, almost 4%) and was also on intralipids from ovulation (plus pred/cyclogest with hydroxy/vitamins etc from before that), then an intralipid asap after a positive test and every 4 weeks thereafter x

@VenusStarr @LookingforAnswers86 @Rebecca9876 I'm also on the complex plan too - my aggression level was 3.66. Currently doing ovulation intrallipids and hydroxy - not steroids though. I asked whether I could avoid them until positive pregnancy test and he seemed happy. Just didn't like the idea of coming on and off them all the time.

Ah ok interesting, my levels were under 2 and I am on the complex plan but it just involves hydroxy and intrallips once I get a BFP, maybe it has to do with how high your levels are ( although mine were high too 🤔)

Girls, I hope your scans went well yesterday :)

I've not really kept up to date the last few weeks but I hope everyone is doing OK. I just wanted to ask a question - maybe @KtAgs or @LRL12 can help as you're at a similar stage to me?

I am currently 12 weeks and have a better feeling about this pregnancy, but I don't have my dating scan til Monday, which I am pretty nervous about!

At my scan I will get to talk to the consultant about the treatment plan (I'm on hydroxychloroquine and aspirin/cyclogest) and I think in particular about when to stop medication. I'm really nervous about stopping the hydroxychloroquine, which I'm only due to take until 16 weeks. Is this the same point that the private clinic gets you to take it until? I'm just scared that even though I would be past the most critical period (and past the point of my previous miscarriages), if my nk cells become more elevated again, it could damage the placenta (and therefore baby) later in pregnancy too. Can anyone reassure me why it would be ok to stop the treatment at 16 weeks?

Hi @Hippo20,

Yes - we're similar in weeks. I'm just over 14 weeks. I think its because any variation in growth may be unlikely to happen past 16-20 weeks but I can't be sure.

I am staying on the hydroxychloroquine to term because I had a late loss previously. My NHS consultant has already prescribed my next dose for it. It's probably worth asking the nurses and its possible your consultant may keep you on it?

I don't know if that's any help to you? Sorry - that's all I know!

Scan yesterday with Professor Akolekar went really well - was amazing. So detailed. It was definitely worthwhile doing for me as I was so worried about my anomaly scan (where I found out my baby had died) so he says I don't have to worry about that now. Although fingers crossed still and I'll definitely still worry!

Thinking of you all ladies. xx

@KtAgs oh that’s such brilliant news!! Didn’t want to ask how it went just in case but thank you for letting us know. Try to worry just a bit less now ;) x

@KtAgs Wonderful news, so thrilled for you! @Hippo20 Glad you're getting on okay too. You ladies give us all hope. xx

Thanks, @KtAgs and great news about your scan! I will definitely ask as I haven't had any side effects on it, so if they are happy to keep me on it would make me feel better. Will you carry on taking cyclogest or anything else or just hydroxychloroquine?

Hi ladies, I've been following this thread for a while so thought it's about time I post. My story is very similar to a lot of you ladies. I am 28 and have a DD who is nearly 4years old. We have been trying for a second child for the last 2years and have unfortunately suffered 7 early losses (all before 6 weeks). I am currently under Mr S however had my latest loss on his plan just a week ago. I was advised to take hydroxy, aspirin, cyclogest, the usual vitamins plus ovulation intra lipids due to having highly active NK cells.
We are currently taking a break from TTC but are hoping to try again in the new year. Have any of you ladies had a loss on Mr Shehata's plan and then gone on to have a successful pregnancy? If so was anything changed on your treatment plan.
I had such high hopes for Mr S but feel crushed after this latest loss. Any advice would be much appreciated.

I think they want to keep me on the cyclogest @Hippo20 which I hate. I get really bad nightmares from it. My friend who is under an RMC and takes 400 morning and night said the same. I'm only taking 200. It's horrid.

And for those on a complex plan talking yesterday, I was just on ovulation intralipids and no steroids.

No nightmares for me but I agree it's the worst thing I'm taking! I'll be pleased when I can stop.

@Kittykat08 hello and sorry to hear. I just had a loss at 7 weeks on the plan but it was a twin and I’m currently still pregnant with the other baby, so I can’t know whether it was my NK cells or a chromosomal issue. Can you have the remains tested to know?

Maybe your cells are at the more aggressive end of the scale and you would benefit from pred also? I was originally on the same meds as you during my trial period in the summer. However when he retook my bloods, my levels were worse not better so we added 25mg in pred in Sept and I fell pregnant that month. So maybe worth exploring if you need some adjustments to your meds, if it isn’t a chromosomal issue?

Hope you get some answers and sorry for your losses x

@Rebecca9876 many thanks for your reply. Unfortunately I wont be able to get anything tested as I miscarried naturally.
But I think as you said maybe my cells are more aggressive and thats why the hydroxy alone wasn't enough. I will deffo mention pred when I next see Mr S.

@Kittykat08 was just thinking in addition - in Sept when we added pred I also did superovulation. Like you, from the sounds of it, I get pregnant fairly easily (but just don’t keep them...) - and we didn’t have problems with our first a couple of years ago - but I’m older and have a low ovarian reserve so don’t have lots of time to spare. You may not need it as you are still very young but perhaps something to also think about in a little bit if you want a “boost”? I don’t know if it made any difference in the end (apart from the twins but that’s still rare) as maybe I’d have fallen pregnant anyway but at least it sort of guaranteed a v good shot at pregnancy that month without needing to wait and see x

@Kittykat08 just saw your reply - oh ok, I don’t really know much about how testing works in practice to be honest as we have never done it, but have read about women who have. I hope you get some answers from him and good luck! x

@Rebecca9876 sorry this might seem a bit of a silly question but what is super ovulation?? I usually do fall pregnant pretty quickly like you said but if it's something that might help then it's well worth a try.

@Kittykat08 no worries, I didn’t know either until he mentioned it! Essentially you take a drug (letrozole) to help your follicles grow at the start of the month. For women who struggle to ovulate it helps get things kick started; for women like us it arguably increases the chance of a pregnancy as more eggs are pushed forward (otherwise each month it’s normally only one and all the others are wasted). Then around 10 days in he scans you to see how they are growing, and based on that advises you when to inject a “trigger shot” of Ovidrel (not as bad as it sounds - was painless) which makes ovulation happen, and you are told when to have sex. If you respond well and too many follicles grow (like me) the trigger shot will be timed so only a couple would be mature enough to release an egg by that time. So it’s flexible. Although I conceived twins initially the chance on letrozole is only around 3.5% and they said it’s very rare at the clinic (in case you are worried - I was delighted so am gutted I lost one but am just hoping it was chromosomal “bad luck”) x

@Rebecca9876 that's really interesting. I think it's definitely something worth looking into. Thanks so much for your replies and good luck to you with the rest of your pregnancy, hope everything works out for you xx

@Kittykat08 welcome to the board :)

Sorry for all your losses. I have read a number of success stories where one medication wasnt enough and another drug was added to the mix eg. Steroids / hydroxy and it worked out. Its hard to know if your latest loss was 'bad' luck or the medication not being enough. Do you have another appointment with DR S soon? I hope he can help and be reassuring x

@Lalaifa how are things with you? I hope your period showed up in the end x

Ps I am starting taking the progesterone in the next 2/ 3 weeks and dreading it a little 😆

@LookingforAnswers86 hello, yes the hardest thing is just not knowing. I'm really hoping it's just a case of adding some more meds and hopefully it will work.
My next appt with Mr S is in January. Apparently they are super busy in Dec with being closed over xmas so that's the soonest they could get me in. xx

@LookingforAnswers86 don’t worry it’s fine! But a top tip is go via back passage rather than front (leakage from which is very very messy!!). You will see... ;)

@LookingforAnswers86 Yes! My period showed up yesterday finally so I can move on. Such a weird one, I ended up spotting for 4 days previous.

Bring on this cycle tho.

@KittyKatSmile so sorry about your recent loss, I hope Mr S can fine tune the treatment for you. I also have read many stories about miscarriage on the plan and then success. There is a blog called Crazy fertility Queen that's one of them if you are interested. Xx