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

Thanks @Hopeandfaith1990 and @Deerdancer34 I’ll try both of these! Hadn’t considered sending pictures to chat gbt haha!

I think the ‘you can’t change it and you’ll deal with it if it happens approach’ is a good approach. Thank you!

Hello all,

I am new to this and have just started with the CRP clinic. I am currently in my first superovulation cylce and I am day 2 into taking the pred, omeprazole and progesterone. Did anyone have itchy skin from any of the medication?
Also I would really like to know what prenatal vitamins everyone has been taking? I am taking Proceive Max Sachets but wanted to see what everyones opinions are?

Also congratulations on all of the pregnancies, it gives me so much hope. I really hope this works for us 🙏

Thank you 💕💕@Rainbowchaser87@Objectiontime how are you both doing? Xx

@RosieLouiseWilliams welcome to the thread and super good luck for this cycle! I got itchy skin between my fingers when I first started the meds, I do think it was the hydroxychloroquine though , are you on that?

I take Naitre supplements in sachets. I really like them although I’ve only anecdotal evidence for them being good. Although I did read about how
liposomal Supplements are superior for absorption. The proceive max will be the same concept I think. Naitre is very expensive but now I’ve started and am pregnant I’m too scared to change! Xxx

@Hopeandfaith1990 Thank you so much for getting back to me so quickly and thank you for your kind words it means a lot.

I have been on hydroxy for probably 1 month now. I have found my skin is very dry on that but not itchy. Itchiness started last night and I was on day 2 of taking omeprazole, pred and progesterone. I have taken pred before but not in the high dosage. It has settled a little today but was itchy this morning.

I have read so much about them and I am thinking maybe I need to do more research into the ones I take and if they absorb the same as Naitre. Thank you for being so open about it. How far along are you? Did you get pregnant via the superovulation protocol ?

xxx

@RosieLouiseWilliams yes I found the dryness and itchiness with hydroxy too. The reaction to the pred could be normal - steroids are quite a harsh medication and pred does have side effects — although none that seem too damaging. For me it’s just a lot of bloating and facial bloating (lovely!)

It could just be a general reaction to the hormones too. I would monitor but speak to the clinic if it becomes more severe.

the supplements world is so tricky because essentially it’s all unregulated and all the brands (inc ‘established ttc ones’ like Zita West, Wild, Ovum) make claims to be the best that they don’t have to substantiate with evidence. I like Naitre and I like that it’s just a pre mixed sachet to take but I’m not sure it’s superior to others, as I said I’m just too superstitious to change haha. I also take Omega 3, double Vit D and NAC and pregnancy probiotics too alongside it. I am currently 12.5 weeks. No, it’s not super ovulation I did a frozen embryo transfer in November from an egg collection in June. I’d had no luck conceiving after a miscarriage for a year so turned to IVF at the beginning of 2025 xxx

@RosieLouiseWilliams Hello Rosie, welcome! Sorry you're here. If it helps I eventually conceived my first daughter on Superovulation protocol. Aside from the medications, I take Pregnacare Plus, Vitamin D, COQ10 100mg, baby aspirin, Inofolic.

I'm currently on my 5th round of Superovulation and the Prednisolone is making me feel crazy...makes me think its not worked but I know deep down you can't really tell until you do the test. The joys we put ourselves through but you don't care if there's a chance of holding that baby!

@Deerdancer34 Thank you so much for your kind words. Yes it is a shame however I am so grateful for forums like this where we can chat about it. Thank you for giving me hope regarding the superovulation treatment that is really helpful. Exactly I am holding on to hope and positivity that we will get there and one day I will be able to meet our baby soon.

@Hopeandfaith1990 Thank you for giving me all that information regarding the hydroxy. It does make me feel reassured. I was off pred for 2 months roughly so I am not looking forward to looking bloated however I am telling myself that when I am pregnant I will be bloated so this is prolonged pregnancy before pregnancy (haha).

That must feel amazing being that far along but yet so scary too. I really hope you find the next few months steady and your able to enjoy it. Was there a reason you didn't do the superovulation cyle at all? Sorry to ask such questions, it just helps me better understand your situation and help me work out what we do. I have a frozen embryo on ice still but it is our last one and we were thinking of doing a full round of IVF however Dr S felt as I ovulated normally, apart from having a low AMH (6.6) he felt that we should do the SO protocol first. I have had a few chemical pregnancies and never made it past that stage even with IVF we had 2 and that is why we are now with the CRP clinic as I felt there was something going on. sorry for the LONG message. xxx

@RosieLouiseWilliams I think it was a combination of wanting to try something completely different - eg being fed up of traditional TTC, timing the intercourse etc and being able to PGT-A any embryos we got to try and lower the miscarriage risk. My last two miscarriages were MMCs at 7/8 weeks so we knew we could get to a certain point with medication but we couldn’t get further. Genetically testing the embryos gave us some reassurance.

I’m also under Dr S on the NHS at Epsom Hospital - not at his private clinic. So my interaction with him/CRP is pretty non existent. No worries re the questions - when I first got my NK cell diagnosis and treatment protocol I had so many questions too xxx

Thank you @LoudAquaMoose , gosh I truly emphathise with the anxiety, it's just absolutely exhausting torture. Hopefully it was just the aspirin causing the spotting and your 7 week scan is positive news too. Every minute feels like eternity, but the days do click over into weeks. All that helps me is thinking of it as keeping putting one foot in front of the other.

And thank you @Hopeandfaith1990, this is so great to have had a positive 12 week scan and come back low risk for the trisomies. I'm so relieved for you!

Beautiful to hear from you @Gizmo1983 and your absolutely wonderful news

Also congrats @SWMum9 ! The hair stuff does go back to normal eventually...

How are you doing @Jecca88 and @Objectiontime ? Fingers crossed for your cycle @pagey23

Welcome @RosieLouiseWilliams , everyone here is so lovely, and there are so many pregnancies, it really gives some hope

I'm off to Athens on Sunday for my embryo transfer, we're transferring an embryo which we collected at the beginning of last year, before my endo surgery and before our loss, and so I'm equal parts absolutely petrified and hopeful that all this was just a bad dream in between. I'm having acupuncture and a fertility meditation before I go into the clinic to try and get into a headspace of new energy!

Ahhh @Gizmo1983 that had made my year, so happy to hear about your baby girl Elizabeth. I really hope you're enjoying your newborn bubble, i bet you can't believe you are here after everything you have been through.

@Hopeandfaith1990 fantastic news my love - will you start telling people now? Would the PGTA have picked the three major ones or is it still a risk?

@LoudAquaMoose oh my love - i had brown spotting too and the fear is soo real and you're bound to think the worse considering what you have been through. Just know that after the spotting you saw a heartbeat so its not related to the baby and it can happen again and the baby can be fine again. Stopping the aspirin also stopped my spotting which is a relief.

@RosieLouiseWilliams hello my love, its Jessie the one from Insta :) good to have you on here and been following your journey. I am keeping everything crossed for you this cycle. I never had the itchy, but the Pred made me a bit crazy - i am glad to be off it - wow my face has gone down in its puffiness and also my appetite has really gone down - i get so bloody full.

@Gems2811 good luck next week with your transfer. Will be keeping everything crossed for you too.

I am 19.3 weeks atm, got a midwife appointment today and every appointment am still so afraid.

Thanks for the message guys! Funny how mumsnet is the place to go for reassurance as no one else will ever understand! I actually found another thread from 2016 where the same conversations and worrries were being discussed by another group of women who all seemed to go one and have their babies. So hope this is the same for us all - no reason why not!

I have my 8 week scan on Tuesday - should be 8+2. The furthest we have got whilst still having a heartbeat is 8 + 1 so this is an important milestone! @Jecca88 did you restart the aspirin after the spotting stopped?

Best of luck @Gems2811 with your transfer. Have everything crossed for you and have the faith that this will be your time.

enjoy the weekend!

good luck for transfer @Gems2811 !! Enjoy the fries and take it easy xx

@Jecca88 how was your midwife appt? Can’t believe you’re almost half way there!! How amazing. Can I ask you about stopping meds if you’ve done that? Both IVF clinic and recurrent MC want me to come off the Pred (weaning) and Progesterone and I’m really scared to!

My compromise is having another scan at 16 weeks then coming off after that. What was your weaning off process like? @Objectiontime do you mind if I ask you about it too please?

I just feel like 12 weeks is still early to be considering going off all the meds! I know they probably aren’t doing much for me at this stage but it feels a bit like a security blanket haha.

@LoudAquaMoose sending you so much luck and good vibes for your scan on Tuesday xxxx

Hi @Hopeandfaith1990 of course I dont mind you asking about my weaning process. I was on 25 dose of pred till 13 weeks and my consultant, when I asked him, said I could wean off from 13 weeks by 5 per week. This would have had me off pred by 17 weeks. However, the other choice he gave me was to get my immune s rechecked at 13 weeks and see how they were and then wean off if all was looking okay. I opted to do both so I started weaning at 13 weeks and had another blood test (over stg1000 paid again). The results took about two weeks to come through, if i remember rightly. The blood test showed that my levels of NK cells etc had dropped but they were not perfect. This did worry me a bit to be honest. I continued, however, weaning but he suggested staying on the 5 dose until I had positive news re apparent health of placenta and related blood flows at my 20 week scan. This was the case so I came off pred completely then. I was on progesterone (cyclogest) until I was 14 weeks. Xx

Thanks so much, that is so helpful! xxx

Hi ladies, I just wanted to apologise if my joining in conversations is a bit lacking. Sometimes my post button seems a bit iffy !!

@Hopeandfaith1990 I don't know if it helps but they start reducing from 12 weeks as the placenta is taking over looking after your baby 🥰 It is scary but then I eventually loved not being on drugs all day, every day🤭 (I weaned from 12 weeks (which I think takes you up to 16 weeks ish and came off Cyclogest at 16 weeks)

Thanks @Deerdancer34 that is good to know! I think I understand logically that the meds aren’t doing much anymore - I think I just find it hard to trust that my body will do what it needs to cos this is completely new territory for me! As in furthest we’ve ever got with a pregnancy xxxx

@Hopeandfaith1990 I completely get that, I was completely the same! Hopefully the docs can come to a compromise where you feel happiest? Xxx

Yes I think it’s gonna be:
• begin weaning the Pred next weekend
• progesterone dropping one (of three) pessaries from from and dropping the injections at 16 weeks
• carry on blood thinners until 20 weeks and check blood flow on scan etc

I am VERY excited to be drug free but also scared haha xxx thanks for sharing your experiences xxx

@LoudAquaMoose My Spotting was actually at 14 weeks, so I stopped the aspirin for two weeks and had my 16 week scan and Dr Silva Edge saw a small bleed on the edge of the placenta and she said you may aswell stay off them. Especially as my risk for pre-clampsyia was low from the hospital. I would get advice from the nurses and maybe ask tomorrow at your scan if you should restart. Are you on 75mg? I actually increased it to 150mg at 12 weeks, but yeh stopped at 14 weeks.

@Hopeandfaith1990 Midwife appointment was good actually, at the begginng they just asked for me to come in as they always ask about domestic vilence but she wanted to go straight in with a doopler and i was like no way i can;t have my husband in here with me. Baby boy is still growing and i am already starting to feel the flutters which is madness and so reassuring. I still cannot believe i am half way there tomorrow. I never thought i would get here. I started weaning off the pred at 14 weeks and had fully gone off them by 17 weeks, anychance you can ask for this? I am still on Hydroxy but have no side effects and i am actually still have one progesterone pessary per day now - just to finish the box. Coming off the Pred i feel so tired all the time and my appetite has gone down, which is funny as they say the opposite for 2nd trimester. I can't believe you are in the 2nd trimester? how does it feel? When are your next scans?

@Jecca88 Glad it went well - that's so tough and I would be the same, I could not have a scan or anything like that without my husband in the room either. That's so amazing about the movements! I cannot wait for that. Yes, I think I'm going to wean gradually for about 14 weeks which is this weekend and then I might do the same as @Objectiontime and stay on 5mg until I have the 20 week scan. I can't believe I've hit the 2nd trimester too, I'm so grateful but just can't believe it! After so many 1st trimester losses. It feels good but I am just wishing I had a scan coming up lol. I find it hard to just accept that everythings okay in there?

Next scan with recurrent miscarriage is 16 weeks but we might do a private one before. When is your 20 weeks one?

Love to all xxx

So lovely that the last couple of months or so and into this year is proving better for many. Everyone on this forum has been through the mill and it is so lovely to have all this better news. Long, long may the good news role ladies xx

Hey guys - I had my 8 week scan today and all went well. I was so sure before that was going to be a fail but measuring a day ahead 8 + 6 and heart rate of 172.

Very relieved. Dr edge is so nice

Soo happy to hear that !! I hope it brings some long lasting relief xxxx

Congratulations @LoudAquaMoose that's fantastic news, I'm so pleased for you! Such a relief for you. Dr Edge really is lovely