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

@LoudAquaMoose Amazing news. Many congratulations xx

@LoudAquaMoose Many congratulations! I love Dr E!

Does anyone know what CRP say/do if 6 Superovulation cycles don't work? Going into the 6th cycle and feeling a bit crap about myself again, wish I could just do it 😢

@Deerdancer34hello, I asked Dr S this when I was last in. He said next step is IVF but he says it’s completely up to you on timing. You can carry on and do more SO beyond 6 if you want to. Hope this helps - take care ❤️ xxx

Hi ladies, I’m on my second SO cycle, 9 DPO today and last night I started bleeding. I’d say it’s light and brownish colour.. continuing today. Testing tomorrow at 10 DPO. It could be implantation bleeding maybe?! Anyone have experiences with this? I never bled when I fell pregnant previously - though those always ended in miscarriage. Not sure who to turn to and of course CRP are shut today. Have a lovely weekend everyone xxx

@pagey23 Thank you, not sure I'd be ready for IVF 🙀 Anyway still got another cycle...

Sorry I don't have any personal experience with spotting but crossing everything for tomorrow 🙏 Brown is definitely better than red from what I've heard and it is implantation time. Fingers crossed!!

I’ve had spotting with a few of my pregnancies - including this one - although with this one it was more at 6/7 weeks rather than around implantation time. All my previous pregnancies have ended in loss but I have spotted with pretty much all of them from what I can remember. I feel like I’ve read pretty much everything on the internet re spotting and pregnancy now and what I can tell you is it is 50:50 - for some people it’s fine, for others it’s not. No way of telling apart from waiting really. Frustrating for sure. If it’s not usual for you it could be a good sign! I used to spot before periods anyway before I started using progesterone pessaries so I didn’t think too much of it at first xx

@Deerdancer34 sorry you’re feeling frustrated with SO, I've no experience in that area to offer but I’m crossing everything for your next cycle! Xxxx

@SWMum9: Really happy for you that things are on track! I was on Cyclogest for my last two pregnancies (albeit both MCs) and definitely found I was more bloated at 6-7 weeks.

@LoudAquaMoose: You have done the right thing by taking a break from work... I really hope your employer are being supportive. Pregnancy after loss is such a wrench.

@pagey23: How have you found the intralipids so far? Sorry to hear that re: the spotting and really hope CRP can offer reassurance once they re-open.

@Deerdancer34 Wishing you so well for the next SO cycle.

@Gizmo1983: Such wonderful news - sending my congratulations!

@Objectiontime: Glad the moon face eventually disappeared, and hope all is going well! Dr Thum sounds amazing and really flexible - I like that he takes bloods more regularly throughout and tailors the medication accordingly.

@Hopeandfaith1990: Glad the 12-week scan and bloods came back OK... What a relief!

@Gems2811: Fingers crossed for your transfer in Greece! Acupuncture and meditation sound good!

@Jecca88: Awesome that you have reached 19 weeks! Hope the midwives are being super-supportive. Glad you are feeling the flutters already!

@RosieLouiseWilliams: Welcome! Am taking Pregnacare Conception, Omega 3 plus DHA, 2000 iU Vitamin D, 600mg ubiquinol, 400mg NAC and am about to add L-Carnitine. Found that Proceive Max gave me bad scabs around the mouth and the pred gave me bad insomnia... Glad to be off it now (I started IVF last month and won't go back on it until transfer).

Just wanted to share that the one blastocyst we got in our first IVF cycle came back as euploid! I cannot express my relief, especially after the initial disappointment of only 1 out of 7 fertilised making it to blast. I had set up consultations with ARGC and Avenues in London, and both were very good (albeit expensive!) but now I think we will stick with our clinic in Spain, and do another cycle of egg collection to potentially bank more embryos before any transfer.

Hi all, I’ve been lurking around this thread for a while as I got prescribed prednisolone (and all the other bits that generally go along like lmwh etc) for my next pregnancy by Prof. Thum after 4 MMCs in a row all with heartbeats seen at initial scans. I have no living children.
I did the blood test which came back as having high NK Cells and that all 3 treatments would help, for cost and work reasons we decided to go with the steroids.
I’ve also been on hydroxychloroquine since my most recent miscarriage mid last year.

I’ve just found out I’m pregnant, very early on as I’m still only 10dpo and am about to pick up the prednisolone and lmwh heparin on Tuesday, have started progesterone and continued with the hydroxy. No one else I know in life has been through anything like this, in fact I have several friends who are pregnant at the moment and have sailed through so I don’t feel like I can’t speak to anyone about this initial part really. So I guess I’m looking for a bit of a hand hold and any advice about steroid side effects that people may have.

sorry if this isn’t the right thread for the above and if I’ve just totally rambled!

Yes, Dr Thum was really helpful. We both felt that he really listened to our ideas and thoughts at our first consultation. Really grateful to him xx

@Lalalala77 welcome and I’m so sorry about your MMCs. I’ve had 2 in my journey and they are absolutely horrific. You’re in the right place, we’re a supportive bunch. All my friends have pretty much sailed through pregnancies too, it’s very difficult. Although I wouldn’t wish this on anyone, it does emphasise the whole ‘why me’ thing.

The main side effects of the Pred for me is insomnia. At first it made my heart race but at night but that settled, but the insomnia has been pretty consistent. I’m 14 weeks today and I’m starting to wean down, so I’m hoping my sleep will get better. The only way I’ve been able to manage it is basically go to bed at 8.30pm knowing I’ll be awake for a few hours in the night. Bloating in the face is common, but that doesn’t really ‘bother’ me as such. Gentle congratulations on your positive, so will this be your first pregnancy on the steroids? Xxx

Hi everyone.

Sorry Iv been MIA. Thank you for sharing all of the information about multivitamins and your journeys.

@Jecca88it is so good to hear from you! You must be so relieved to be off the meds now.

This is definitely a tough road but all your outcomes makes me excited to finally get to ours.

We are just about to start our 2nd SO treatment. Did anyone experience ovulating before DR Edge said to take the trigger shot? Or anyone have shorter cycles of approx 24 days?

I am keeping everything crossed for all of your current pregnancies and cannot wait to follow your news.

I hope you all have a great week.

@TammyinCork that is so wonderful about your euploid!!!!

@TammyinCork congrats on your euploid! What a fantastic outcome from your retrieval!

@pagey23 not sure about the spotting but 9dpo would line up with possible implantation?

@Lalalala77 gentle congratulations and it’s the same in my life, those two lines are celebrated rather than ‘please don’t even mention it in case we scare it away’. Pred gives me insomnia and a puffy face, it was the progesterone which gave me worse side effects weirdly. Terrible light headedness and vertigo but as pessaries it doesn’t affect me at all.

@RosieLouiseWilliams I suspect that did happen to me twice but they swore it hadn’t and so I’m unsure. Basically I get crippling ovulation pain and was experiencing that a few hours before the time I was told to take my injection. After those times Dr Edge said to have sex before she otherwise would advise, to cover all bases. Have they confirmed that you’ve ovulated early?

Hey team -

@TammyinCork i am so so happy for you. My heart broke for you at Xmas and think it’s great that you will try and bank some embryos before transfer. Everything crossed for you and your partner.

@Lalalala77 about prednisolone my insomnia hasn’t been so bad but I take all the pills at 7.30 in the am and then take progesterone (pills not peasant) before bed. Progesterone makes people sleepy so helps. I still wake up at like 4/5am but manage to get off ok. I took progesterone and prednisone from 3 DPO. And hydroxy throughout.

I had a positive scan today - 9+3. Inching closer.

Good luck to everyone!

@Hopeandfaith1990 Thank you so much for your reply and congratulations on your pregnancy and getting to 14 weeks! Yes, my first pregnancy on steroids so I have no idea what to expect. I have been with a few consultants but Dr Thum is the most recent and has prescribed them. I’ve just picked them up and believe I’m starting with 25mg so am going to take them from tomorrow morning. Sorry to hear about your insomnia, I hope that gets better now you’re starting to wean - looks like I should enjoy my sleep tonight then if it’s going to be the last good one for a while!

@Gems2811 insomnia seems to be a common theme then, I’m not the friendliest person on no sleep so am going to have to get over myself! I’ve been taking progesterone but only for a few days and the pessaries and so far I’ve not had any side effects. And thank you for your congratulations!

@LoudAquaMoose congratulations on your positive scan! And thank you for the information. Is this the first time you’ve taken that med combination? I’m starting everything a bit later than you did so hoping all goes well too.

Thanks all for your welcomes and information! It’s so nice to see so many positive scans going on here too, really gives some hope 🥰

@Lalalala77 yes first time i have taken. I’ve ‘only’ had 2 miscarriages but second was confirmed euploid and heartbeats in both. All my tests came back normal aside from NK cells. I have PCOS, hashimotos and potentially rheumatoid arthritis so immune seemed like the right place to go for me.

I also went gluten free (at my positive test but would have done sooner if I had read about it sooner) - apparently it’s good for autoimmune conditions. I am also trying to manage my glucose better for PCOS (look up glucose goddess).

Either way sounds like you have been through the wringer. I know how I feel so can only
imagine your experience and my heart goes out to you.

I hope and have faith this your one.

Hi everyone, sorry I've been MIA for so long... but it's honestly so good to see so many positive stories on here at the moment - huge congratulations to all of you - it's giving me so much hope. Welcome to everyone new as well.

An update from me: I'd been waiting for cytogenetic results following surgery for my 9th miscarriage in October. After much chasing I finally received them a couple of weeks ago, only to find out they didn't even test the tissue as they didn't have a big enough sample! Very frustrating we couldn't get any answers, and on top of that we had to wait over 10 weeks to find out nothing.

Anyway, we went to see Dr S last week for a follow up appointment, and repeated blood tests for Cytokines. My protocol before, after 2 x sets of Humira (Adalimumab), was Intralipids, 25mg pred, hydroxy, progesterone and aspirin.... He said he was inclined to stick to the same protocol to try again, as I'm already on lots of drugs. But offered GCSF in addition if I wanted.

I'm quite confused about the GCSF. On one hand I'd rather not do it because I'd prefer to avoid injections, plus the cost, and if he thinks I should give it a go again without then that's a positive sign I don't need them?! On the other hand, should I just do it all!? Has anyone else been in this position? @Jecca88 I seem to remember you were on them and struggled at the beginning? Do you mind sharing the circumstances around you taking it?

They've asked me to book another appointment to discuss my cytokine results - but I kind of just want to be given the prescription for Humira (I'm sure I'll have to do at least one round again as it's been a year since my last set) and GCSF, if I decide to take it, and be on my way until it's time to do intralipids! It doesn't really feel necessary to have another appointment, but not sure if they'll agree to it?!

Sorry I haven't caught up with everyone, really hope you're all doing ok xx

So much to catch up on!

@TammyinCork amazing on your embryo being a euploid. When are you thinking of transferring? How are you finding the clinics in Spain? Thank you my love - made it to 21 weeks today.

@pagey23 have you tested? I have had implantation bleeding around the 10 days on quite a few of my pregnancies.

@LoudAquaMoose amazing my love - congrats on your positive scan.

welcome and gentle congrats @Lalalala77 - you are defo in the right place for hand holding and sending positive thoughts. Just know each pregnancy is different and you are on the meds now. They have a great success rate.

@Hopeandfaith1990 woowwee lady 14 weeks! Just incredible. Did you say you know the gender or will find out/predictions? How’s your mental health?

@MC8 ahh good to hear from you my love, sooo frustrating about the lack of results for cytogenetic - you must have been soo disappointed. Yes you are right I did get out on GCSF. I had 4 losses with CRP after 3 losses before going there and they wanted to throw the kitchen sink at it- as two I had lost on prednisone and they didn’t know what else to add - also I was planning a IVF transfer but this was a spontaneous pregnancy believe it or not. generally it is expensive and the aches the day after are a bit annoying. But I have made it to 21 weeks - no idea if it’s down to that but it’s the furtherest we have ever got.

@RosieLouiseWilliams i am really hoping this month is your one and timings work out better. Nightmare for you having to travel to and from Devon.

A little update from me- had my 21 week scan today with dr silva edge and baby boy is doing well - got such a cute pic of his feet and starting to feel small kicks. Had my last intralipid too and just can’t believe it. They haven’t discharged me due to being on hydroxy till 40 weeks and my history - which is actually a bit of relief. I really trust them and feel so taken care of. Have my anatomy scan with NHS on Friday and really hoping they don’t find anything of concern. Keeping my fingers crossed. Xx

Thank you @Lalalala77 ! I hope you don't get the insomnia - it seems not everyone does so there is hope!!

@MC8 that is so awful re the testing, I'm so sorry.

@LoudAquaMoose 9+3 woop. Congrats on your positive scan. I also went gluten free - around June last year when I did egg collection and have been ever since. My husband is celiac so I thought it couldn't hurt haha. I plan to gradually re-introduce gluten at some point, I could actually murder a croissant lol.

@Jecca88 thanks! Can't believe it myself tbh (and sometimes I literally don't believe it lol). At the moment we're leaning towards not finding out gender, not sure if that will change as things progress. I have a feeling its a boy. Mental health has not been great but not as bad as it has been haha. The time between 12 week scan and 20 weeks just feels a bit too long. I think we're going to book a private one at 16/17 weeks, although I am in seeing maternal medicine on the 16 weeks but they've told me that will not be a scan.

21 weeks is sooo amazing! Feeling the kicks must be so lovely, I can't wait. Sending you love for the anatomy scan on Fri.

Out of interest, what scans did you have between 12-20? How are your midwife appts going? I start those soon too.

Update on me: I've weaned down to 15mg Pred today at 14.5 weeks. Sleep has still been awful so I've had something called Xonvea privately prescribed, its used for people with HG/extreme morning sickness in pregnancy but it also helps with sleep so I'm going to start taking it this evening. I've got a 3 week supply so hopefully it'll coincide with the lowest does of Pred and the insomnia will gradually ease off! Mentally I'm finding this stage okay but the adjustment from such frequent scanning in the first trimester to this big stretch of time with not much is challenging. I had 6 scans in the first tri ! I don't really have a bump yet and obviously I can't feel any movements so the blind faith is being tested!

Love to all xxx

@Hopeandfaith1990 ahhh i just had to find out the gender, obviously it doesn't matter at all as long as they are healthy - just makes it feel more real for me and trying to connect with it.

I had a midwife appointment at 14 weeks and asked if i could have an extra scan at 15/16 weeks with NHS EPU - which they booked. I reckon you could do the same, as i am high risk due to my history. With the CRP you also need a Scan at 16 weeks as you need Intralipids.

So I had a Scan at 5.5, 6.5, 7.5, 8.5, 10, 12, 13.5, 15, 17, 21. I have had way too many scans tbh lols and each time they don't get easier, even going in yesterday after i had felt him i was gaslighting myself. I have also had two Midwife appointments where they heard his heart on the doppler. The Midwives are lovely and you can raise all your concerns. Remind me - are you registered with Epsom and St Helier? Not sure what their EPU is like. I am with Kings.

My Sleep is sooo much better since being off the Pred to give you some hope, i am waking up now with pins and needles and carpal tunnel pain, but not waking in the night and staying awake for a few hours like i was on the pred.

Yeah I reckon we will find out tbh @Jecca88 we just haven't really discussed it much yet. Okay yeah that sounds like a good plan - I will ask for an extra NHS scan, I find the private places quite anxiety inducing despite the fact we found a good one last time. Just PTSD from ectopic diagnosis and how shit they were with it. Yes with Epsom and St H. All my scans are at Epsom but the more technical stuff will be at St H I think. That's reassuring re the sleep. Have you 'announced' yet or just kind of letting people know as and when? I don't know if I'll ever 'announce' haha. Just seems so scary!

@Hopeandfaith1990 i know what you mean - you're almost not allowing yourself to feel excited or even think about gender. Totally know what you mean about private scan places, I trust Kings EPU so much and even if you want to see them - just lay it on thick. Honestly i thought my sleep would never get better - so there is hope, once i was down to 5mg, also my face was so puffy i didn't even realise and my appetitie has decreased too.

So I haven't done an announcement, and don't think i will. I always found them so triggering after my first loss, i would love to do something once the baby hopefully makes it here and also provide some support and hope for people who have been journey's like ours. I let people know when i need to, so have told my team at work as already gonna start recruiting for my replacement. I am Head of Talent Acquisition so need to get moving on that. I have told my friends who i trust and have been on this journey with me. I still can't get onboard with the 'congratulations' as it just feels so conflicted - i usually caveat with - i still don't believe its happening or still keeping fingers crossed - so telling people as a neccessity rather than a joyful announcement if you know what i mean. I did share some cute pics yesterday with my mum and sister and best friend which felt nice to have a bit of excitment and joy.

What you thinking of doing? have you told anyone yet? Are Work still going easy on you?

@Jecca88 the face puff is so real. I already have a very circular face so its not helped in that area at all! Agreed re the announcements. I've told my team at work too, they are putting the job advert out for my job tomorrow but not specifying maternity cover (to try and keep it quiet for as long as poss). Schools are absolute gossip breeding grounds though so I'm anticipating being asked! I'm the same with the congratulating, and I still find it hard to even say 'I'm pregnant' out loud. I make myself practise though. My super close friends and family know, and my department at work but no one else. I definitely do feel more relaxed post 12-weeks but the fear is still very much there. xxx

@Hopeandfaith1990 thats good about not specifying Mat cover, mine is actually also a perm role as need assitance anyway and thinking of going down to part time after. I was wondering if i should start wearing my 'baby on board' badge as a hard launch so i don't have to tell people verbally. I still haven't managed to wear it in case of jinxing. When i tell people - i actually say 'i'm currently pregnant' - i dont even realise i am saying that but its just a way i deal with it.

When is your first midwife appointment?

Love the idea of a hard launch - I've actually had this thought too re the badge ha. I also say the same re 'currently' - I do try to make myself not so I am subconsciously telling myself its not going to end. I honestly don't know how I would have gotten through the first tri without the affirmations etc, sounds bonkers but repeating stuff aloud really helped. First midwife appt isn't for a while I don't think, need to check. I have to do the diabetes test too, did you have to do that?