Immune/NK cells pred thread #34

To add - I really struggle actually falling pregnant also!! X

Hi everyone, so glad to see there is a thread on this!! I found out I had high NK cells via the NHS last March, since then I’ve been on pred steroids and progesterone. Had 2 MMC since being on them so they introduced hydroxy which I felt awful (and came up with a big face rash) so came off them. Contemplating going privately with CRP but concerned about the costing of it all. Hoping they would be able to use my test results via NHS however was nearly a year ago, but at least I have the initial medication (steroids and pessaries). Has anyone started off with NHS and moved to private with CRP? If so, how did the expenses look and what did they do different? Can I combine the 2- for example extra medications/help through private but continue with reoccurring miscarriage with NHS for scans etc… feeling a little lost xx

Hey gang - I had my 12 week scan at CRP today and all was well! I can’t believe it.

wishing all of you the very best

@pagey23 Thank you! I'm doing this cycle with pred, then the 7th would be without. I think it would only be one cycle without pred but I didn't specifically ask & I imagine I start taking it if I did become pregnant. I think it's basically if you do 6 back to back cycles you need a break from pred but don't have to break from SO as I thought. Hope you're going somewhere nice with work!?

@Deerdancer34good luck for your sixth cycle 🤞!! So you are doing this one without pred? Is that just for one month?

I’ve done two rounds of SO and no luck. Having a break this month as travelling with work so will get back on it next cycle.

@TammyinCork That's wonderful news about the euploid!

@RosieLouiseWilliams Yes my cycles went a lot shorter when I started SO, they are usually 25/26 days now, before they were 30-32. I always wondered about the ovulation thing but I stopped ovulation testing because I was so sick of testing, so I'm not sure if I have ovulated before the trigger!

@Jecca88 Many many Congratulations, I am soooo thrilled for you! I actually found a local mum's group whilst I was pregnant and found some ladies I really got on with. (I had wanted to do pregnancy pilates or yoga but my working hours didn't fit with the class times). I did sign up for NCT but for me personally it was a bit of a waste because our group didn't connect unfortunately. The free NHS antenatal classes were fantastic but obviously they are online so you don't meet mums. Like @Gems2811 said, it is invaluable to have someone going through it at the same time, the lady I met on the mum's group was having her 2nd baby, so I got all her experience and tips. Our conception journey never came up and I would say you can choose how much you want to share or not & tbh you are just so happy to be pregnant/have your baby that I personally didn't care (at that point) if other people had it easier because for me I just appreciate my baby 1000% more because of all the struggle and the heartbreak. Don't get me wrong, I still have the its not fair moments but I pinch myself every day and just look at my daughter in wonder. I still can't believe she's actually mine.

@Lalalala77 Congratulations...Just take one day at a time, I know it feels like eternity but crossing everything for you! I have so many alarms on my phone for all the drugs 😆

@AmzTTC A very warm welcome to where we don't want to be but I found this space invaluable because people out there just don't get what we go through. I had 3 miscarriages and an ectopic then 1 daughter through CRP. It's a long journey but we are all here to support in anyway we can.

@Hopeandfaith1990 You are flying along 💓 Sending you lots of love for your next scan!

FYI for anyone doing SO, Dr Edge gave me the option after my 6th cycle to either continue without Prednisolone, take a complete break or IVF. I thought you couldn't do more than 6 SO cycles in a row but actually they just review and discuss what you want to do. You do have to have a break from Pred but apparently you have built up enough over the preceeding 6months. Anyway fingers crossed Cycle 6 is my cycle 🙏 Sorry so long, lots of love to you all 💓

Thanks @Gems2811 that had made me feel a lot better about booking NCT.

I know @Lalalala77 i can only really feel like i can relate to people who have had difficulty in fertility. I just feel misunderstood otherwise, but need to work on that.
Ahh my love - when is your first scan? This is the first time on the meds isn't it?

welcome @AmzTTC Really sorry to hear about your history, this is a safe space. This is my 8th pregnancy, no living children and made it to 22 weeks :) with CRP. I also had beetroot, brazil nuts and vitamin E tabs to increase my lining. Wish you luck.

Hi all, sorry to interrupt you all but I love how helpful this thread is!!
I’ve had 5 miscarriages in the past and started with prof shehata in October. I got diagnosed with high NK cells but recently also a thin endo lining. I’m terrified of needles so the intralipids are no fun for me at all.
I’ve just stared estrogen and viagra yesterday to help with the lining. fingers crossed for this cycle.

I love reading positive stories on here, congratulations!

Oh @Jecca88 congratulations! You must feel so relieved! Such lovely news 🥰 I totally get where you’re coming from with the nct groups, I have to tell myself to stop feeling bitter about my friends having such easy pregnancies let alone strangers but as @Gems2811 said, it could be a great way to meet people at the same stage as you to bounce off.

Im 17dpo today so still very early but have been freaking out for the past 4 days with what I thought was a stall in pregnancy strips. I was also stuck on 1-2 weeks with clear blue but that flipped this morning to 2-3 so I feel a bit better. I’m still very cautious though, as with all of my previous losses (well 3 out of 4, the first I was in blissful ignorance that a positive test doesn’t mean a positive outcome) my test lines rose quickly and were much darker than this one and I always had a 2-3 by 14dpo. Those pregnancies obviously didn’t continue but growth was good until at least 7/8 weeks for most and I think it was my body rather than the embryos so I can’t stop myself from being convinced there’s something wrong with this one. Just trying to take it a day at a time!

so far so good with the prednisone too - it’s been a week and I’ve had a couple of days of waking up at 3am and struggling to sleep but slept like a baby the past two nights so can’t complain. Just feel like I’m rattling a bit when I walk with the amount of medication I’m taking 😂 I have to keep a tick list in my diary otherwise I wouldn’t have a clue what I’ve taken and what I havent

That makes a lot of sense @TammyinCork and your clinic sounds really good!

Congratulations @Jecca88 this is just the best news! And I totally know what you mean by holding your breath for 5 months. A bouncy baby boy! So precious.

I found the friendships from NCT invaluable as it’s reassuring having friends in the exact same stage as you, awake at night etc. my group are some of my closest friends now and most of them had their own fears going on to be honest. We all leant on eachother equally in times of need. But a lot of people I know didn’t have a great experience with their groups. I had 3 miscarriages before my daughter and everyone’s different but you can always just bow out of the group chat if your group triggers you, it wasn’t discussed at all, our fertility paths up until that like 8 month mark amongst us x

@Hopeandfaith1990 yes i am doing the glucose test at 8 weeks. its still kinda undecided if i have PCOS but they thought may as well do it.

Had my 21 Anatomy Scan with NHS yesterday and i am so shocked and pleased to report that he is a healthy bouncy boy. They didn't detect anything abnormal and i just burst into tears after and felt like i could finally breathe after 5 months. I know i still have a long way to go, but feel like now we should start to plan for things we might need. I never thought i would be here after 4.5 years of TTC, losses and just utter heartbreak and to feel him move is just magical. I Just feel so grateful and lucky that we have got to this point. Even though we have been so unlucky in the past.

@TammyinCork i like that perspective of your body working to provide the good eggs and also love that the spanish clinics offer partial refunds for unsuccessful collections.

My mum asked me if i would register for NCT classes and I am in two minds. 1 i think it would be good for info and meeting other mums, but then i am also going to be triggered or annoyed by the blissful pregnant parents who some have had it so easy. I knows that Harsh - what do you guys think?

The clinic in Spain has been pretty good... Here is a mini-tour:

The doctors are nice and knowledgeable, they have good technology and a strong lab. The Spanish clinics also give partial refunds if you end up with nothing to transfer after a cycle, which I don't think they do in UK / Ireland?

Only niggle was a bit of miscommunication at the beginning, about when I should stop taking Microgynon, but for the next cycle, there will be no birth control as I'd probably get more eggs without it! My AFC reduced from 15 in October to 13 in December after the Microgynon.

Thank you so much, everyone! I read somewhere that if you only make 1 blast per cycle, for some women, it is likely to be euploid because their body filters out the bad eggs earlier i.e. they don't make it to blastocyst stage. I did wonder if this had happened with me. The plan is to do another egg collection in February then first transfer in March / April!

@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?

@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?

@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.

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

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