Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

There are just so so many things to consider, it's an absolute minefield and SO SO expensive!

My scan was this morning, was unbelievably nervous, barely slept last night but thankfully saw a strong heartbeat and now measuring a bit ahead at 8w5. Not out of the woods yet, but it's the furthest we've got so for now I'm happy. Dr Edge has told me to stop the Aspirin which makes me nervous, but she's given me good news twice now so I'll pretty much do anything she says at this point.

Hope everyone else is doing well x

@Fletchasketch ahhh that is incredible news!! I’m so happy for you. Hope you can relax a bit, for today at least! Xx

Amazing news @Fletchasketch small wins and each day and this is the furthest you have ever been! Remember that. They do say if you get to 10 weeks you’re in the safe zone for immune stuff! Have they started talking to you about the harmony testing yet?

I have been sleeping terribly since I started the protocol on Sunday. Last night after the GCSF injection I woke up at 3am and couldn’t get back to sleep. Such achey legs and lower back. I feel shattered today. CRP have recommended I come down to 20mg of pred like before- hopefully that will help me sleep better. Any tips welcome?

Also @Fletchasketch did she say why you need to stop aspirin? Your blood work? Have you had any bleeding?

Brilliant news Fletchasketch, really chuffed for you xx

Thanks, everyone. Small wins indeed! It certainly did feel like a milestone. Up until now my partner and I have completely avoided talking about the pregnancy, beyond what we absolutely have to in terms of appointments. I'm so cautious to acknowledge that it might be happening but we were able to talk about it last night, which felt good.

@Jecca88 yes, the next hurdle is the NIPT test which will be in two weeks, we're defintely going to go for it, terrifying prospect as it is. Re: the aspirin, Dr Edge noticed a small bleed near my cervix, so said it's best to avoid it.

Sorry to hear you've been feeling shattered, I do think it's normal though. I felt rubbish and had disturbed sleep on the Pred for about the first 5 days and then I think my body started to get used to it and now it doesn't bother me. How long have you been taking it for now? I also read somewhere that taking it super early in the morning helps with sleep- though that does mean having a very early breakfast which I wouldn't be keen on. I really hope things ease up for you soon and that the pregnancy continues to go well.

Sending lots of love and luck to all xx

@Fletchasketch it is really hard to let go of the worry isn’t it. I I started tapering the Pred at 13 weeks and was at 5mg by 17 but then I was told to stay at that level until an ultrasound could confirm that the placenta and cord blood flow looked normal. This was because a recheck of my immune cytology at 12 weeks had shown there there were still a few niggles. I came off the Pred after the blood flow and placenta had been confirmed as at least looking normal but I am forever fearing a relapse of dodgy immune system damaging the placenta. The fear doesn’t go away but I think all we can do is try to enjoy it and pray. xxx

@Objectiontime thank you, this is helpful intel. I think my main concern about giving up the aspirin was the blood flow element, I hadn't realised that was what the Pred was for, so good to know. After being initially resentful of these endless appointments that seem to cost a million pounds a go, I'm now really grateful that they are keeping such a close eye on me. Wishing and hoping are the order of the day. I'm sorry to hear it's still a bit worrying for you, honestly I don't think it will go away for me until I'm leaving the hospital with a baby. Wishing you all the best x.

@Fletchasketch Huge congratulations, every milestone is a step forward in the right direction isn't it!? I'm so thrilled 💓 I was also told to come off the aspirin early.

@Jecca88 I think I woke early every night through most of the first Trimester and I used to panic about getting to sleep. The only thing that worked for me was putting on a podcast so I could concentrate on that rather than trying to sleep - I would either drift off or be in a near sleep like state so at least you might feel more rested. Just thought I'd mention in case any help!

@Objectiontime Hope you are well!

@Hopeandfaith1990 Good luck tomorrow!

Thank you @Deerdancer34 🩷🩷🩷

Been AWOL from the thread as work has been sooo busy but got the hysteroscopy tomorrow so will update after that.

so happy for you @Fletchasketch you give me hope 🩷🩷 rooting for you and @Jecca88 and everyone 🥰🥰🥰

Thank you 😘. Hope all goes well with the hysteroscopy tomorrow, I will be thinking of you. One more step in the right direction.

@Fletchasketch I wanted to come back to you on this because I didnt want to cause you any confusion or issues. When my specialist said he wanted to check placenta and blood flow he didnt specifically say why to be honest. I assume it was to do with any cytotoxic activity remaining that could cause issues for tge blood flow and placenta, maybe by clogging it or other but, as I say, he didnt specify and I didnt ask. I do know that tge aspirin is to help blood flow and I have been on 75mg per day constantly from even before I was on the pred initially last year. My specialist wanted me to remain on the aspirin right tge way through the pregnancy, although I have no known clotting issues or similar. I was advised to move up to 150
Mg from 12 weeks, which is pretty common but I have never done so because I have celiac disease and aspirin is not ideal medication for those of us with this disease, even the gastric resistant ones as it is a bit heavy on the tummy.
Guess what I am saying is that you may want to ask why they want you off the aspirin.
Xxx

@Hopeandfaith1990 Just wanted to wish you well for tte hysteroscooy tomorrow. Heard only positive things about this procedure's helpfulness on tge journey we are in xxx

@Deerdancer34 Really interesting about you being asked to come off the aspirin too. Did they tell you why?

For me, all fine so far, nearing 23 weeks xx

Hi all, I know this is a PA odd thing to ask on here but my consultant wants me to deliver at 37 weeks if I get there via induction or c-section He thinks this is sensible to try and avoid the placenta starting to reduce in efficiency. Not too sure what I think about this. Interested to know if this is the usual view if anyone knows xx

Please don't worry, you haven't. I've been asked to stop aspirin because of a small bleed near to my cervix, apparently the aspirin might make it worse. I trust Dr Edge implicitly, I think I was just surprised as I know it's so commonly used in cases of recurrent loss. Really appreciate all the info from you and the rest of the group, you are all so amazingly knwoledgable.

I have definitely heard this before. I think in my case it was discussed early on with the midwife because of my age, but issues with the placenta can be a big concern.

Good luck today @Hopeandfaith1990 will be thinking of you. Plenty of rest and treats after :)

Thanks for the tips guys, actually slept so much better the last two nights.

@Objectiontime Dr Edge noticed a small bleed on me too and said best to come off the aspirin.
Dr E also said to me I want your baby home by your due date (so that would be 40 weeks). I think because the placenta does start to deteriorate around 40 weeks and after all we've gone through they want to make sure all is good. However, I was a bit confused by it, so when I was closer to full term I asked CRP and they said 40 weeks would be the ideal situation but it depends on your consultant and Trust's policy. For me personally, I felt fit, well, really good pregnancy and the baby was fine and I really didn't want induction as I think it's best to give your body the chance to start labour naturally (of course sometimes you have no choice!). My midwife was excellent and really supportive. So I booked in for Membrane sweep at 39.5 weeks and if that didn't work induction at 40.5 weeks. However because I felt fine and not worried, I delayed it so Membrane sweep 40.5 weeks and induction at 41.5 (they won't let you go past 42 weeks anyway). I didn't actually need either as my waters went at 40 weeks. I think have plans in place so you can have a sweep/induction and then just go with how YOU feel and nothing is right or wrong when it comes to birth! I would say I've heard induction from having no contractions is quite painful so I wanted to give myself the best chance for things to start naturally before going down induction route. But if you are feeling anxious and ready for that baby at 37 weeks, do it. Make sure you do what YOU want and hopefully your midwives/consultant are really supportive?
I don't know if that's helpful at all!? Ask if any other questions!

Lots of love to all 💓

That makes sense then. If I get there (please, please God!!) I think I will probably go with the CSection option rather than a lengthy induction that has a good chance of failing xx

Thanks all - I am out and on my way home :-) didn’t get a detailed report as the consultants were pulled to another case but I saw the initial results and it basically said everything was fine but they have taken a sample for biopsy (now convincing myself I have uterine cancer). I asked the consultant before going under GA if they would do a biopsy and they said only if they saw something that looked iffy which is concerning. Sure I’m just overthinking it as usual. Feeling crampy and a bit spacey but mostly fine and looking forward to eating lots and recovering this weekend.

hope everyone is okay, @Jecca88 glad you got some more sleep, the pred is so horrid for that. Try the magnesium sleep spray on your feet, sounds bonkers but it helps. Xxx love to all

@Hopeandfaith1990 Well done my dear, go home and relax and put the biopsy out of your mind. Just think at least you are being thoroughly checked and so you are now ready to proceed with even more confidence 🥰When will they discuss your results? Lots of love xx

Ahh then that makes a lot of sense, thank you xx

Thank you so much for this. I think it is a hard decision . Might have to consider how things are moving along later before a final decision is made xx

Thank you so much for this. I think it is a hard decision . Might have to consider how things are moving along later before a final decision is made xx