Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@lozzmax that's what I'm really hoping. I'm sure there should have been at least a yolk sac visible at 6 weeks but the sonographer said quite often with twins one is a bit behind so it's a wait and see scenario. Praying really hard nothing develops in that sac which is such a strange thing after 4 years of praying for the opposite. I'm also hoping they can determine location more clearly on Thursday because on one view it looked like it was still in the uterus but on another it looked like it was a bit near the edge which made the sonographer very twitchy!!

@HopefulH I think a specialist will be good - I'm not sure where you went but the equipment and skill level can be quite different. How close together are the sacs?

The equipment was good and the sonographer was great to be honest. Very thorough and reassuring whilst being honest. The two sacs weren't close together at all. One was bang in the middle where you'd want it and one was on the edge. I guess the positive I'm holding on to is the one that looks great got the good spot as if that was a cornual we'd have to terminate a potentially healthy baby.

I'm just going to have to busy myself and wait and see what Thursday shows...

Oh @HopefulH wow - so confusing and what are the chances. So glad you got to be seen - esp as it could be dangerous. Fingers crossed for Thursday. If they need to operate on it - does that harm the other sac? no need to do anymore pregnancy tests now and hope it has given some reassurance?

Oh interesting - i have had Accupunture before - i did loads of sessions over a year in 2022 to help with fertility, but maybe need to revisit. I will look into the AIP Diet.

@lozzmax so i had the surgery on the 7th June - so it has really only been 5/6 weeks since, but previous losses it has already returned quicker and stronger. I have just got private medical insurance - literally starting 1st July - wonder if i call CRP and if they could do and i could claim back. I thought the Hyfosy only covered the tubes? or is it Uterus too?

@HopefulH how are you feeling today? Really hoping you'll see that second sac shrinking tomorrow 🤞🏼🤞🏼🤞🏼

@Jecca88 so the CRP will do it via private med, but only if you have BUPA. I didn't, so I got a referral from a different consultant (I had to pay but you could get one from GP) and then I found the Gynaecologist (I can recommend two) and booked the procedure in with them and it all went through my private med. I've done it before getting a referral from prof. S and then I've used private med to have it done at Parkside Hospital with Mr. Jan. A Hyfosy is uterus and tubes - it's horribly painful and revealed that I need a hysteroscopy so if you can get that for free, I'd go straight for that. I agree that my cycles have always returned a month later and relatively normally - I had a sense something was wrong in April and I'm glad I pushed for a hysteroscopy, I had scarring that needed removing. Hope that helps x

@HopefulH good luck today x

Thanks @lozzmax that's a great help. I luckily have BUPA and will give them a call today.

Good luck today @HopefulH - thinking of you

Thanks both. 'Cautiously optimistic' were the words of my lovely sonographer today. There were two sonographers there so they could be really thorough. Baby in sac 1 had grown a bit in two days and heart beat was immediately visible which was a huge relief and the Gestational sac had grown quite a bit too. So all good there. Sac 2 had got bigger but longer in shape and slightly less defined edge. Still empty so they think it is most likely a failed pregnancy. Back on Monday to hopefully see it's broken down a bit more. It is in a questionable location and so I need to be closely monitored over the coming weeks so still not sure we will get to go on holiday. But I'd say the scan went as well as it could today so taking today as a good day. They also think I may have a slightly heart shaped uterus undiagnosed - I've had two hysteroscopies and a lap! Absolutely exhausted now so going to go home and nap 💤 thank you for thinking of me. Hope you guys are doing okay? X

Hi @HopefulH hope today goes/went well?

Sorry for not responding sooner, I had some spotting on Thursday which sent me into a bit of a spin but it was a couple of drops and then nothing else. Still very nauseous and tired, and I did bleed with my daughter at a similar point so trying not to panic.

@VenusStarr is there any more news on your breast lump? Thinking of you.

Hope everyone else is ok x

@lozzmax yesterday went well thank you. Onwards to our next scan on Saturday but we've been given a tentative yes that we can go on holiday.

Are you being super careful re Covid? We're self isolating as much as possible at the moment (working from home, I didn't go to a gig I had tickets for at the weekend etc.) but we are still going to parks and other outdoor places. But I'm terrified about being in an airport and on a plane for 4 hours with Covid kicking about. I just wondered what others were doing in a similar situation on all these immune meds?

How are you doing? Is it Thursday you have your first scan? X

@HopefulH great news about holiday. Is that sac now shrinking?

I'm not really able to be careful - I work in London and I have to get the tube + nursery bugs. But tbh I've never been told by the clinic that I need to worry - I've been on immunosuppressants for quite a long time now (including with my daughter in 2021 when Covid was more rife) and I've not found myself getting more unwell. What specifically are you worried about? (Do I need to worry?!)

I'm ok, had a massive panic last night as had some one sided pain and got myself into a tizz about ectopic - but I think it was trapped wind. Scan Thursday. Starting to get extremely anxious now, which mixed with the pregnancy nausea, means my tummy isn't doing too well! I think my main concern now is whether it's in the right place or not

@lozzmax yes the second sac has shrunk by a third so I don't think anything is going to happen with that now which is such a huge relief. I'm still absolutely terrified everyday and had a huge meltdown last night because I got angry with my lo and was convinced that the stress and anger will have caused harm to baby. The reassurance of a scan literally lasts hours and then I'm back to obsessing. This is my first pregnancy on the immune protocol so I don't trust they will work and my danger period is from now to 10 weeks.

I also had one sided pain last week for one day and I now think it was my corpus luteum cyst, which apparently is very common. So yours could be that too. I have everything crossed for you for your scan on Thursday. I get the shakes really badly each scan I have to the point I can hardly walk. I think it's ptsd. Have you got a morning appt?

I don't really have any nausea which is making me nervous. I feel a bit icky in the morning before I've eaten and in between meals but all my other pregnancies I've been a lot more nauseous by now. Trying not to read too into it.

Re Covid - I had Covid with my latest loss at the beginning when I was 5 weeks and I'm pretty sure baby just didn't stand a chance as my body went into fight mode. But I wasn't on any meds then at all. I think my clinic just said it to me because they think Covid may have some role in causing heightened immune reactions, which is obviously what we want to avoid! I also know lots of people who have had Covid whilst pregnant and have been absolutely fine.

Hey ladies, sorry you have been so panicy, I really do feel for you both - pregnancy after loss is so damn hard - i have no idea how people can concentrate on anything else.

@lozzmax really keeping everything crossed for Thursday. I always worry about Ectopic - but i think the pain would be sooo severe that you would need an ambulance. Trapped wind at this stage is so common and painful too. Sorry you had spotting - but reassuring to know you had it with your child successfully.

@HopefulH - glad the sac is shrinking and you get to go on holiday. In the year I have been on immune suppressents - i have actually never been better physcially. Touch wood but i haven't caught a cold once or covid. I don't think you need to be extra careful, i think i heard that when Professor Shatata had covid in 2020 - he actually took Hydroxy. I listened to his podcast on The Big Travel Podcast - episode 100 - its a good listen.
I did have a tummy bug last week which was the first in years.

Also guys - i went to the dreaded SIL party on the weekend and felt very brave and turned it into a nice weekend away with my husband in Cambridge. There was a scan picture on the fridge which was glaring at me everytime i walked past, but glad i got through it.

Hi everyone, do you mind if I join?
After seeing Dr Shehata following 3 losses, I was very fortunate to have my little boy via IVF (he is now 2). I was on Pred, HCQ, lipids, Fragmin, progesterone (plus IVF meds). We decided to try again and followed exactly the same protocol and I had a miscarriage at 16 wks in March. It has taken this long to get the results from the post mortem and placenta and whilst nothing definitive was shown, Dr Shehata thinks there is some other immune issue going on and has suggested taking tacrolimus in addition to everything else. I was just wondering if anyone else has had experience on it? I’m a bit worried about the possible side effects and need for close monitoring. I hope everyone is doing ok x

Hi @Bubbles202 welcome to the thread! I'm so sorry for your loss, no-one should have to go through that. I haven't been on the Tacrolimus - he did suggest I try that before steroids but the frequency of the testing made it unappealing to me because of work. However I probably would try it if there was nothing else. One thing to consider - my friend had a loss at 16 weeks last year after no previous history of miscarriage and a successful and uncomplicated full term pregnancy with her son 4 years earlier. They misdiagnosed her at first and said it was likely down to a placental infection, however it started to happen again in her current pregnancy and they realised she had an incompetent cervix, probably caused by quite a lot of intervention at the birth of her son. She went into full on labour at 16 weeks, not sure what happened with you, but I just wanted to share because it so nearly happened again (they stitched her cervix this time and she's been on bed rest and is now 35 weeks).

@Jecca88 well done for going to the party, no-one would have blamed you if you didn't. Sometimes I think the thought of these things is worse than the actual doing of them. Thanks also for your advice on Covid, I don't need anything else to worry about!!

@HopefulH hope you're doing ok and managing to stay hopeful. I hope you can enjoy your holiday after all - sounds like you could do with some decompressing time with your family ❤️

Scan at 10am tomorrow. Someone tranquillise me please

@lozzmax good luck this morning. I have everything crossed for you!

@Jecca88 thank you - that reassures me somewhat re Covid. And well done for going to the party!

@Bubbles202 welcome. I'm so sorry for your loss. And it's so upsetting not knowing why. I have no experience of tacro as this is my first attempt on an immune protocol after 3 mmc - so I'm really hoping the meds I'm on help. I'm on all the same as you including Fragmin, which Prof S was against, but I got via my other consultant anyway. I have heard of some ladies needing more meds with a second pregnancy so I think I'd be willing to give it a go after a second trimester loss with no genetic abnormalities. X

Hi all, all went well today. Measuring 6+5 which is a couple of days ahead (which makes sense as I must have ovulated early since the only time we had intercourse was CD7 and pretty sure sperm can't live for 7/8 days!) Heartbeat looking good 😊 I'm so relieved. Just need some decompression time now, I get so worked up before scans! Dr. Edge was AMAZING if anyone has her. She was perfect for what I needed

Oh @lozzmax i was waiting to hear on this! So glad everything looked good and you got to see a heartbeat. Try and enjoy this high for as long as it lasts.

I am so sorry for you loss @Bubbles202 I am sorry I am not on Tacrolimus either, so can’t give any advice.

Thank you so much @Jecca88. It's so nice to have this little community of people who know what it all feels like ❤️

@lozzmax wonderful news! I'm trying to write down all the positive things they've said to me at scans so I can look at them when I'm having a wobble or freak out. Well done for getting through it. I've got another scan on Saturday and I'm starting to feel really anxious again. Hoping we see some good growth. And then I'm off on holiday for two weeks on Monday so I'm going to have to just sit tight and hope for the best. Is your next scan in two weeks?

@Bubbles202 so sorry for your losses. Welcome I’m relatively new here too, it’s a kind and knowledgeable bunch. I’ve very recently been prescribed tacrolimus for when I have a positive test but I’m not in the UK so won’t have the same close monitoring…and no positive test yet so I can't share any personal experiences yet. The tacrolimus is an alternative to humira which was an arm and a leg.

@lozzmax so pleased to hear your update. The tension before a scan is immense! Fingers crossed for you @HopefulH for Saturday.

I’m in the 2 week wait. I got positive OPK sticks this month but we only managed sex once in the window so not holding out much hope.

Hi ladies, QQ if I may please. I have had an MMC and a chemical pregnancy. For many reasons i think there could be an immune issue so i am looking at getting tested.
Having said that, i have breast implants (for medical reasons). Just wondering why my body hasnt rejected them as foreign material. Any thoughts?

@HopefulH how did it go today?

@v60 fingers crossed for this cycle... it only takes once, you never know - it worked for us this time.

@Carportforme I'm sorry for your losses. I don't know anywhere near enough to give an accurate answer, but I have a feeling that NKC for some women become more active in a pregnant state, and it's the cells in your womb that are active at that time. Something about pregnancy seems to trigger an auto immune response for some of us, and that our bodies specifically attack the embryo or developing embryo. Biologically they are completely different to breast implants so I guess that's why you could reject one and not the other? But honestly I don't have a clue sorry! x

@lozzmax appt went well yesterday so we've been given the go ahead to go on holiday. Second sac smaller still and baby looking good, now measuring 7+2 - so gone from 6+2 to 7+2 from Monday to Saturday so pleased with that. Morning sickness has kicked in though and struggling to eat all the healthy AIP foods I was eating before. I've reverted to gluten free bread, rice cakes and gluten free ginger biscuits... not anti inflammatory at all so really hoping this doesn't have a detrimental effect on the pregnancy! I can't help but just think I'll come home from our holiday in two weeks and it will all be over again. Even though everything looks good at the moment.

Hope everyone else is doing okay?

@Carportforme I'm sorry I don't know about breast implants but I do think that you can not have any real signs of anything immunes going on, and yet in pregnancy it becomes a problem. I don't have anything obvious, although I now know I have high inflammation and endometriosis which I think must be connected. I'd say it's worth exploring it that's what your gut is telling you. X

Hello and thank you so much for your reply. Really appreciated.