Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

Anyone done a FET using prostrap? Only 2 days post injection and feel awful already with mood swings. Is it going to be like this the whole 3 weeks??

Oh @InvisibleDreamer I'm sorry you're having a rough time. I've not done prostrap. I hope it eases soon x

Hey ladies, I hope this doesn’t offend anyone - but I was wondering if those who are currently pregnant on an immune protocol could possibly share their previous losses/experiences? I’m having a real low day, where everything just seems so impossible - and I feel like it would be really good to hear about some of your experiences and how there could be hope for someone like me too… I’m battling with persistent thoughts that it just won’t work for me.

I hope this isn’t insensitive. And I hope everyone else is doing okay?! Xx

@HopefulH hey, I'm sorry you're feeling low at the moment. I am currently 26 weeks pregnant, not out of the woods yet, but I thought my story might help you. I have had 5 previous miscarriages. After 3 I had NHS testing which didn't find any issues. I then went to CRP and started on Humira, progesterone, Intralipids & prednisolone, sadly the pregnancy on this plan also ended in miscarriage at the exact same stage as the previous 3. We had testing done on the embryo which was found to be healthy.

We tried again, this time adding Hydroxy to the plan. Again sadly this pregnancy also ended in miscarriage of a healthy embryo at the exact same stage. At this point I really thought it was never going to work for us and hit a real low point. It didn't feel like there was anywhere else to turn. We took 9 months out and enjoyed life a bit. I had a procedure to correct an anomaly in the shape of my womb (I had a partial septum) - it wasn't thought that this would be causing my miscarriages but after so many miscarriages and 2 on the CRP plan it felt like something good to rule out.

We then decided to try again on the same medication plan but with an extra dose of Humira and of course with my corrected womb shape. And by some miracle I am now 26 weeks pregnant. The pregnancy hasn't been without complications, I've had horrific morning sickness and had to have a stitch put in my cervix as it was very short. But I hope it gives you some hope xxx sending lots of love

Hey ladies hope you are all doing ok, I have started the progesterone last night and already have cramps, bloating, but dizzy and hungry!

I wonder if it’s all in my head 🙊 but I don’t remember feel this crampy even when I took it last time from positive test (ended in MMC) anyone else had this?

I stupidly only took 1 as that’s what the box said.. the clinic confirmed today I need 2 pessarys from ovulation for 10 days not just 1, hope it’s not made a massive difference!

I've been in those shoes too @HopefulH , more than once. I'm currently 35 weeks pregnant after 1 successful pregnancy and 5 unexplained miscarriages. Hopefully my experience gives you some hope.

Pregnancy 1 was a missed miscarriage, we found out at my 12 week scan the baby had stop developing at around 6 weeks.

Pregnancy 2 ended in miscarriage again. We'd seen a heart beat around 6 weeks, but I started spotting around the 7-8 week mark and another scan revealed the heartbeat had stopped.

Pregnancy 3 was successful. I took aspirin from early on (not prescribed by a doctor) but was advised to stop at 16 weeks. I went on to develop pre-eclampsia and the baby suffered from inter-uterine growth restriction. He spent a week in NICU but is now healthy and thriving.

Pregnancy 4 ended in miscarriage at 14 weeks. Genetic testing showed the baby was healthy. I'd been taking aspirin.

Pregnancy 5 also ended in miscarriage at 14 weeks. Again genetic testing showed the baby was healthy. I'd been taking aspirin and progesterone.

Pregnancy 6 was a chemical pregnancy. I'd been taking aspirin, progesterone and steroids. There wasn't enough tissue to do cytogenetics with this one but I've accepted that it was likely to be genetic problems given how early it was compared to my other losses.

Pregnancy 7 is currently on-going. I'm 35 weeks pregnant and have been on aspirin, progesterone, steroids, high dose folate and Clexane. I'm starting to show signs of pre-eclampsia again, and the baby's growth velocity had fallen at my last scan. And the placenta is showing signs of premature aging too. Hoping we can make it a couple more weeks before induction!

Hi Ladies - not exactly sure what I’m asking, but I guess any advice or experience from this position. I started on the CRP complex plan in Dec and a couple of days ago got a BFP, but I’m pretty sure this is turning into a chemical :/ My frer lines are light and not really progressed, I was hoping this morning it would be much darker but it’s the same or even a tiny bit lighter that yesterday.
I don’t really want to continue with all the meds if it’s going to end badly but I guess it’s a bit of waiting game, anyone who else been in this position? My period isn’t due until tomorrow, so haven’t officially missed it yet.
attached my test pics below, wasn’t 100% sure on my ovulation date hence I’m either 13/14 Dpo today.

@Hayley220 I think you'll be ok because you'll be producing your own progesterone as well. I tend to do one morning and one evening, just prefer them spread out.

@Annie808 I'm sorry you're in limbo. I had similar when I had my first ivf transfer. I let crp know and just said to keep testing and let them know but to keep on the meds. I hope yours has a different outcome ❤️

I'm about 2dpo (not ttc this cycle) but I've had some brown spotting in my ewcm and a bit after ovulation. Not had it before, hope it's not another issue 🙄 has anyone else had spotting around ovulation?

@VenusStarr thanks for sharing your experience, and sorry for your losses too. I think I’ll let CRP know early next week. It’s so disappointing, esp when taking all the immune meds this time round. Just hoping if it is a chemical, it’s over quickly!

@Annie808 it may not be much help but when I had a chemical in Jan - it went from positive to no line at all within a day. You're not due until tomorrow so if you can hold out - perhaps test again on Mon x

Thanks @SReyn sadly the line is v faint this morning, at least I have the clarity quickly and hopefully will start to bleed soon.

@Annie808 I'm so sorry - it's still heatbreaking and sending you a big hug. I found my period started a few days after coming off the progesterone and my cycle went back to normal quickly xx

Thank you @SReyn xx

@Annie808 I'm very sorry to hear this ❤️ sending love x

hello! I'm new. I've been round the houses on fertility having thought going to IVF would be the quickest thing to do, but having 3 x failed FETs I've realised the problem is me/my womb not the embryos!
So now I'm with Professor S.
My confusion comes from the "three types of NK cell" test results. I had naively thought the result would be a binary one with my NK cells being either high or low. But now I realise its more complex. My NK count is high and activation is very high. But when pregnancy is simulated the levels seem to become normal. Does that ring a bell with anyone, or mean anything?
My treatment plan is the steroids + intralipids (are they painful?) which seems similar to lots of plans I've read about on these threads.
But i did just wonder how to interpret those NK results.

Very grateful for any insight from anyone who has done more reading than me on NK cells!

Hi @nottsgdns welcome. I'm sorry to hear you're struggling. I'm under Dr S too. I have high activation but a normal count.
This is my (completely unscientific) thought, I wonder if your nk cells are high / so aggressive that they're actually impacting implantation? The fact they're ok when exposed to pregnancy might be a good sign that if you achieve a pregnancy things would be ok?

Intralipids are part of my plan too. They're ok once they get the cannula in - that can be uncomfortable and they usually go in my hand which can be achey but the actual administration is fine. Takes about an hour so take a book or headphones. Sometimes I just close my eyes (have a long drive there and back).

Hope everyone is doing ok. My dh has been really poorly so not much to report from us...can't remember if I said we both got covid, first time for us both 🙄 typical as we're just about to resume ttc. Ordered my superovulation meds so not long now xx

thanks @VenusStarr yes that could be right. i tend to miscarry at 5/6 weeks (or have done in most recent 3x FET cycles) so would it be about then that implantation would happen? All of this makes me realise I understand fertility so little!

Hi ladies, how are you all?

Just wanted to reach out as I have nobody else to ask and you are all so helpful going through the same thing. I am getting horrible cramps, to be honest they feel similar to cramps when I am miscarrying (as i dont really get period cramps anymore) so I am finding it scary. I got my peak 21/02 so what dpo would I be 8 or 9? No positive test and been taking progesterone 1 week. I would be due my period until 7th March so would I be too early for a positive anyway? I feel really emotional and the cramps are horrible. I keep worrying about an ectopic.. or what on earth is going on! I didnt have any cramps when I took cyclogest from positive test so I am confused why I have been cramping on and off for most of the week.

hope you are all ok x

Hey @Hayley220 sorry to hear you're having bad symptoms with the progesterone. I've been very up and down with it and used to get really bad cramps from 1-10dpo some months but other months it's fine and barely have any at all so I think it can fluctuate with your own hormones. Definitely tell the clinic if you're worried or if it turns into more than mild cramps. Keeping everything crossed for you though. X

So sorry to hear this @Annie808 I hope you're doing ok as can be ♥️

@VenusStarr sorry to hear you've caught covid!!! Has it been bad for you? I'm so conscious of catching it again (I've already had it twice) Did the spotting ease? I've never had that during ovulation but I wonder if it was maybe covid related?

@Hayley220 I'd imagine you were probably 8dpo yesterday if you ovulated on the 22nd. Have you taken first response? Keeping fingers crossed for you!

@nottsgdns welcome! So as far as i'm aware the 3 nk cell tests are

1. to check the number of nk cells. 2. the nk cells you do have, how active they are 3. when your cells are put into a pregnancy state they are added to different meds to see which drugs reduces their activity the most and you're then given meds accordingly. If you've had miscarriages at around 5/6 weeks, implantation would have happened before you got the positive test usually in the week after you had an embryo transfer. But if you're miscarrying at 5/6 weeks, then dr s suggests your body can possibly start to reject the embryo due to the high activation of nk cells which could cause a miscarriage. (that's my understanding of it anyway!)

Also just to update everyone, i've officially started my first superovulation cycle and have my first scan booked and intralipids. Just a bit worried about letrozole side effects did anyone have any?

Also the more i read into it the more i'm not feeling confident that our issue is entirely nk cells related as we've had borderline DNA sperm come up, and my FSH levels are raised too so I'm dealing with recurrent implantation failure.. Really just hoping for the best now..

@star2022 I did feel very run down but just thought it was a virus but I'd been out with my sister and she tested and I thought I should check. But dh was absolutely full of cold and had it bad, feel bad as I definitely have it to him as he was a few days behind me.
Dh has also been really unwell following the course of Doxycycline ☹️ it seems to have caused an ibs reaction. Good job we aren't ttc right now!

Fingers crossed for this cycle. I don't remember having side effects from letrozole but I think I could feel my ovaries if that makes sense. I'm waiting for my meds and prescription from crp, got to source the gonal F. Due on next week and then we'll be trying next cycle 😬 got a holiday first though 🌞

Hope you're getting on OK @Hayley220 🙏 sorry about the cramping. I've occasionally had months werefrom 7dpo to af its been bad but hopefully it's implantation.

Hey @Annie808 how are you? Really sorry to read about your tests getting fainter, it really is so heartbreaking to have your hopes dashed so quickly after a positive. Really hope the clinic have been supportive and you're feeling ok xx

@VenusStarr sorry to hear the doxycycline didn't sit right with dh. I remember you saying you had a holiday booked, hope you have an awesome time and gives you the break you need! What was the reason you're on Gonal F instead of letrozole? Did you say you were on estrogen too or have I made that one up? I started my letrozole last night, and i just couldn't wake up in the morning! Not sure if it was just down to a heavy period or the letrozole but otherwise its been fine so far. I also have noticed my periods tend to be more clotty (tmi) and painful since ttc which is annoying not sure what that's about.

Also for anyone taking aspirin on dr s plan, do you usually stop taking the aspirin while on period to stop excessively bleeding? And this might be a silly question but for the cyclogest pessaries, I understand its 2 at night - are these both inserted at the same time?

@star2022 thank you 🥰 we definitely need it.

I'm still doing 5mg of letrozole then gonal F injections as well. My last superovulation round was a bit of a flop with only one follicle (on 7.5mg) so Dr S said let's try the injectable stims. I do take estrogen as well as my lining doesn't seem to like letrozole. In my last ivf round I did low dose stims and my lining responded quite well to my own estrogen so it will be interesting to see what happens this time.

I think if you're having a heavy period you can miss the aspirin until it eases off. I tend to do cyclogest one in the morning and one at night, putting 2 in feels a bit odd to me and I think spaced out makes sense as I've definitely lost one pregnancy due to low progesterone x

I’ve had 5 unexplained miscarriages all after IVF or FETs. I tried aspirin, fragmin, progesterone, high dose folic acid, metformin in my last pregnancy. I also took doxycycline prior. I miscarried at 7 weeks, genetics showed a normal baby girl.

I’ve had no testing on immune issues but the recurrent miscarriage team have said in the next pregnancy they will try all of the above again (although I’ve swapped metformin for inofolic).

They’ve also prescribed hydroxychloroquine, which I need to take for at least 12 weeks prior to my next embryo transfer. Plus prednisone during the pregnancy (I’m not sure when I start this). I’m currently just NHS, so there’s probably things I’m missing out on.

I just wanted to introduce myself, and bookmark a thread with people going through similar things. Good luck to everyone, it’s a tiring journey!